Shane's Street - Raising Congenital Diaphragmatic Hernia Awareness

12 Years Ago...

2011-09-09T07:10:00.000-07:00

I haven't updated this blog in a while. I've been really, really busy with CHERUBS and all the events we have going on. CHERUBS is doing great and just won $25,000 in a contest this week (thank you to everyone who voted!!!!). We have a lot of fundraisers going on right now as well, including a Masquerade Ball on October 22nd and a Christmas Vendor Show on November 13th. If you're in or near Raleigh, we'd love to see you at both.

This weekend is the 10th anniversary of 9/11 and the 12th anniversary of Shane's death. I miss him more than words can say and right now I have no words, except I love you, Shane. Thank you for giving me the chance to be your mommy for 6 and a half years. I just wish I had 60 more years.

To learn more about CDH, please visit http://www.cdhsupport.or g or click on the links above.

Forever missing a part of my family...

Vote for CDH Babies!!!!

2011-06-14T08:05:00.000-07:00

Vote for CDH Babies!!!!

CHERUBS is in the Vivint Gives Back Contest on Facebook!

June 14 - August 27, 20011

Vote for CHERUBS every day to help the babies!

Click here to vote now!

CHERUBS is participating the Vivint Gives Back Contest on Facebook and we need your votes! How to vote:
1. Go to http://www.voteforcdh.org/

2. Log in through Facebook and vote

3. Repeat daily through August 27, 2011

If you're having
troubles with the voting and endorsing process (you're getting an error
telling you to like the page first repeatedly), do the following:
1. On Facebook, go to Account --> Privacy settings2. In the privacy settings page you should see a 'Connecting on Facebook' section. click 'View Settings'.
3. Set 'See your likes, activities, and other connections' to 'everyone'.
This process lets the website see that you have liked the Vivint page, and you will then stop receiving this error.

What Will $250,000 Be Used For?

Should CHERUBS win the Vivint Gives Back contest, money won would go to:

$145,000 for CDH Research
$125,000 for collaberative research with Massachusetts General to pay for lab kits for over 100 families for genetic research into CDH
$10,000 for programming for the long term CDH Research study database to review patient histories and similarities
$10,000 to medical conferences for families and researchers

$95,000 for CDH Support
$10,000 to help sponsor a CDH patient, baby Rhett,
who is currently in an orphanage in the Ukraine. We have several
families who want to adopt him and bring him to the U.S.
$25,000 for Financial Help for families to help cover travel costs to and from the hospital
$30,000 for support services
(support forums, web sites, mailings, newsletters, volunteer software,
toll-free number, adopt a hospital kits and much more). All
services to families are always FREE.
$5,000 for local member get-togethers around the country
$10,000 to CDH HOPE Totebag care packages for newborn and expectant babies diagnosed with CDH
$10,000 to reinstate new member welcome packages
$5,000 to scholarship fund for CDH survivors and siblings

$10,000 for CDH Awareness
$1500 for CDH Awareness Bracelets for families
$1500 for CDH Awareness Ribbons for families
$1500 for CDH Awareness Brochures
$500 for Balloons for Memorial & Awareness Releases
$1000 for Save the Cherubs Campaign Wings
$1000 for Marching in Town Parades
$3000 for CDH Awareness Billboards & Posters

Please sign the CDH Research Bill Petition

2011-04-15T15:27:00.000-07:00

Taken from CHERUBS blog:

2011 CDH Awareness Cherubs Video

Congential Diaphragmatic Hernia Research Bill

In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia.

CDH affects 1600 babies in the United States every year, with a 50% mortality rate. It occurs when the diaphragm fails to fully form, allowing the organs into the chest cavity and preventing lung growth. The cause of Congenital Diaphragmatic Hernia is not known. There is very little research on CDH, even though it is as common as Cystic Fibrosis and Spina Bifida. More research funds are desperately needed and we are appealing to the United States government to help these babies.

How you can help:

Look Up Your Congressmen To find his / her mailing address
Download Letter to Send To Your Senator / Congressman
Include The CDH Research Bill and a photo of your cherub
Sign the on-line petition.

Congenital Diaphragmatic Hernia Research Congressional Bill

To amend the Public Health Service Act to provide for the national collection of data on babies born with Congenital Diaphragmatic Hernia in a standardized manner, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the ‘CDH Research Act of 2011’.

SECTION 2. FINDINGS.

The Congress finds as follows:

(1) Congenital Diaphragmatic Hernia is a birth defect.

(2) Congenital Diaphragmatic Hernia has a rate of occurrence of 1 in every 2500 babies.

(3) Congenital Diaphragmatic Hernia affects approximately 1600 babies each year in the United States

(4) Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth.

(5) The majority of Congenital Diaphragmatic Hernia patients have underdeveloped lungs and/or poor pulmonary function.

(6) Congenital Diaphragmatic Hernia patients often endure long-term complications such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders and developmental delays.

(7) Congenital Diaphragmatic Hernia survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition and hypoxic brain injury.

(8) Congenital Diaphragmatic Hernia has a survival rate of 50%.

(9) Congenital Diaphragmatic Hernia has affected over 600,000 babies worldwide since the year 2000.

(10) Babies born with Congenital Diaphragmatic Hernia endure extended hospital stays in intensive care with multiple surgeries. Extended hospital stays in some cases have exceeded one year.
(11) Congenital Diaphragmatic Hernia is as common as Spina Bifida and Cystic Fibrosis.

(12) Congenital Diaphragmatic Hernia is diagnosed in utero in only 75% of cases.

(13) Congenital Diaphragmatic Hernia is treated through mechanical ventilation, heart and lung bypass (Extracorporeal Membrane Oxygenation) machines and surgical repair.

(14) Congenital Diaphragmatic Hernia surgical repair is often outgrown thus leading to reherniation and requiring additional surgery.

(15) Congenital Diaphragmatic Hernia does not discriminate based on race, gender, religion, economic status or lack of prenatal care.

(16) The cause of Congenital Diaphragmatic Hernia is unknown.

(17) Congenital Diaphragmatic Hernia takes more lives in the average year in the United States than lightening strikes, tornadoes, hurricanes and floods combined.

(18) The average hospital bill per Congenital Diaphragmatic Hernia patient is $500,000.

(19) The estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000.
(20) Annual Federal support for Congenital Diaphragmatic Hernia research at the National Institutes of Health is currently estimated at less than $5,000,000.

SECTION 3. SENSE OF CONGRESS ON NIH FUNDING FOR CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH.

(1) In General- It is the sense of the Congress that the Director of the National Institutes of Health should increase the allocation of funds and other resources for Congenital Diaphragmatic Hernia research.

(2) Measures To Increase the Research of Congenital Diaphragmatic Hernia shall include—

(a) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of finding commonalities in the search of possible causes and better treatments of Congenital Diaphragmatic Hernia.
(b) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of researching the long term health of survivors of Congenital Diaphragmatic Hernia.

(c) Funds for genetic research into possible causes of Congenital Diaphragmatic Hernia.
(d) Funds for research into more successful surgical and neonatal medical procedures that may increase the survival rate of babies born with Congenital Diaphragmatic Hernia.

SECTION 4. NATIONAL PUBLIC AWARENESS CAMPAIGN.

(1) In General- The Secretary of Health and Human Services shall carry out a national campaign to increase public awareness and knowledge of Congenital Diaphragmatic Hernia

(2) Measures To Increase the Public Awareness of Congenital Diaphragmatic Hernia under the national campaign under subsection (1) shall include—

(a) the dissemination of information on the definition of Congenital Diaphragmatic Hernia;

(b) the dissemination of information on good neonatal care of Congenital Diaphragmatic Hernia patients; and

(c) the promotion of good prenatal care and ultrasound to detect Congenital Diaphragmatic Hernia in utero.

April 19 - Congenital Diaphragmatic Hernia Awareness Daily Celebration

2011-04-15T15:25:00.000-07:00

Taken from CHERUBS blog:

April 19 - celebrating Congenital Diaphragmatic Hernia Awareness DAILY

April 19 Congenital Diaphragmatic Hernia Awareness Daily Celebration is about 1 thing - raising awareness for CDH and the babies it affects. ALL are invited to join in. From any group, any hospital, any country! It is owned by no one, restricted by no one, profited by no one. EVERYONE can join in, even if you personally have not been affected by CDH! CDH hurts babies EVERY day of the year!

♥ This is the ONLY non-trademarked day set aside for CDH that ALL CDH families, charities and researchers can participate in! It is a day set aside to raise CDH Awareness and encourage others to do so every single day. ♥

WHAT DO YOU DO? Just raise CDH Awareness! Be involved as much or as little as you want to be! Wear a shirt, hand out fliers, light a candle, let balloons go, send out an e-mail, wear a ribbon, hold an event, tell at least 1 person what CDH is - just do at least 1 thing to raise CDH Awareness!!!

Every family affected by CDH has their own Congenital Diaphragmatic Hernia Awareness day - the day their child was diagnosed. The day that they became personally aware of CDH. We honor that and we promote CDH Awareness Daily.

In the past year, since CHERUBS and 1000's of CDH families have been able to use the term "Congenital Diaphragmatic Hernia Awareness" freely after winning the fight against the trademark on the phrase on April 19, 2010, we have raised CDH Awareness on an astronomical level. CHERUBS has been on television, in numerous newpaper articles, several national contests, sold 100's of CDH Awareness items, enabled families to use free awareness graphics to get their own CDH Awareness gear, created over 250 personalized CDH Awareness ribbon graphics, submit the CDH Research Bill to Congressmen and found several co-sponsors, raised awareness at many events and conferences, created dozens of videos, included awareness in the CDH Baby Book, created the Save the Cherubs awareness campaign and even the first billboard. All of this was made possible because we could use this phrase freely once again.

On the 1 year anniversary of this triumphant accomplishment for our children and the future of CDH Awareness and Research, we will celebrate with balloon releases, candle lighting ceremonies and more to raise more CDH Awareness, honor all children affected by CDH.

After several years of awareness being inhibited, we have a lot of catching up to do!!!! We are working hard to make 2011 even better than 2010 to raise awareness and help babies affected by Congenital Diaphragmatic Hernia. Join us, wherever you are, in helping the cherubs!

25 Easy Ways To Participate In the 2011 CDH Awareness Daily Celebration

Tell someone about CDH!
"Attend" the CDH Awareness Daily Facebook Event Page
Share the video above on Facebook, Myspace, Twitter or your blog and tell others whatCDH is
Use any of the graphics below on your blog, site or social media and tell others what CDH is
Ask others to participate in the CDH Research Bill and sign the petition
Use the above graphics as your profile photo on sites
Wear a ribbon
Wear a CDH Awareness shirt, hat or other item
Make a video in honor/memory of your cherub
Teach your children the CDH Kid's Song
Add a twibbon to your Facebook or Twitter accountRelease balloons
Light a candle
Decorate a jar and ask a local store / restaurant to let you set it up until Mother's Day to collect money for CDH Research
Start a Firstgiving page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
Start a Cause page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
Take CDH Awareness ribbon cookies or cupcakes to work
Participate in the Save the Cherubs campaign by taking photos
Put a sign on your car about CDH
Contact your local media to share your story
Let your cherub or other children wear wings all day to raise awareness
Hold an event or fundraiser (car wash, lemonade stand, collect change, work with local restaurant, etc)
Create a CDH Awareness blog or site
Collect items for the CDH HOPE Totebag Project
Donate to a CDH Research facility
Adopt a CDH Hospital

Vote to help charities who help sick children!

2010-11-09T13:03:00.000-08:00

CHERUBS is part of Vote For Kids' Health in Pepsi Refresh, a group of charities that help sick children! Please vote and help sick babie and childrens' because EVERY child deserves to live a long and healthy life!

CHERUBS - $25,000 to Provide financial assistance for hospital travel expenses to families affected by CDH (Congenital Diaphragmatic Hernia), a rare and often deadly birth defect that affects over 60,000 babies every year. Text 101202 to Pepsi (73774)

Alternating Hemiplegia of Childhood Foundation - $250,000 to Find a path to the cure for Alternating Hemiplegia of Childhood (AHC). Text 104112 to Pepsi (73774)

Bailey Baio Angel Foundation - $50,000 for Expanded Newborn Screening Education & Assist Affected Families. Text 103868 to Pepsi (73774)

Rockin' Against Leukemia - $50,000 Refresh the Dream - Rockin' Against Leukemia: Find a Cure by 2015! Text 103906 to Pepsi (73774)

SSBTR - $5,000 to Students Supporting Brain Tumor Research. Text 102749 to Pepsi (73774)

Hearts For Hope - $5,000 to Help children on the Cardiology Wing at Children's Hospital, Boston. Text 100100 to Pepsi (73774)

Lorraines Canes - $5,000 to Provide custom walking canes to pediatric patients without insurance. Text 101132 to Pepsi (73774)

CHERUBS - Provide financial assistance to families affected by CDH.

Goals

To financially assist families affected by CDH
To provide gas cards to help with travel expenses
To provide restaurant gift cards to help with expenses
To provide grocery gift cards to help with expenses
To help with airline ticket and lodging costs when needed

Overview

The CDH Family Assistance Fund helps families with the expenses incurred traveling for medical care for very high-risk pregnancies and critically ill newborns. Often families have to travel 100's of miles to hospitals that are equipped to handle babies born with Congenital Diaphragmatic Hernia (CDH) and that provide ECMO, a heart and lung bypass machine, if needed. Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of babies born with CDH do not survive. The cause of CDH is not known, but it is as common as Cystic Fibrosis and Spina Bifida. Every 10 minutes a baby is born with CDH - adding up to over half a million babies since 2000. The hospital stay for a severely affected baby can be as long as 1 year. With the medical bills and emotional stress that these families go through, we want to offer a little help with making travel easier and affordable.

How will the 25K be Used?
Budget Notes: Most pediatric hospitals are affiliated with the Ronald McDonald House, which provides lodging for many of our families. Our request for hotel gift cards are for those traveling long distances overnight to reach a hospital or those rare times when a Ronald McDonald House does not have an empty room.

Though CHERUBS has just 1 project in this alliance, they have 4 more in this month's contest. Their goal is to focus on 1 at a time to help the babies with all 5 needed grants so if you have extra votes please vote for one of these projects to help keep them in the top 100 so they will roll over each month.

Click here to vote for all 5 projects at once!

$250k CDH RESEARCH - text message 102542 send to 73774 (pepsi)
$50k Awareness - text 102365 to 73774
$25k Hospital Kits - text 101211 to 73774
$25k Financial Assistance - text 101202 to 73774
$25k Care Packages - text 102123 to 73774

Or click through each one below:

Angel Ball, CHERUBS, Shane and Me on the news

2010-10-25T13:45:00.000-07:00

News 14 Carolina did an interview today about our Masquerading Angels Ball!

In Depth: Dawn Williamson, Cherubs

An event this weekend will help unmask the cause of a life-threatening condition among children that doesn't get a lot of attention. It's called congenital diaphragmatic hernia or CDH and News 14 Carolina's Tracey Early sits down with Dawn Williamson, the founder and president of the non profit group "Cherubs," to talk about this year's event.

Click here to view the full video.

Halloween Pasts....

2010-10-24T07:37:00.000-07:00

I was blessed to have had a few Halloween trick-or-treating experiences with Shane. 50% of families of babies born with CDH aren't so lucky. And Shane never got to eat a single piece of candy. I know that doesn't sound like a big deal to most but candy.... 1 simple, childhood pleasure, something "normal".... he missed out on so much. CDH took his life and so much more.

Many people are "trick-or-treating for CDH" this year to raise funds to help these babie. Please consider participating.

trickortreatforcdh.info

Taking this blog in a new direction...

2010-10-24T07:13:00.001-07:00

After working non-stop for the past 6 months on CDH related events, fundraisers, etc, I've come to the conclusion that the public just does not care about the critically ill babies born with CDH. Distant family and friends care somewhat, but not enough to stand up with us. The general public with no connection to CDH cares even less. About critically ill newborn babies.

But people will chain themselves to trees for protests, march for animals, picket anything they disagree with. But it's so hard to get them to care about these babies?

Why?

C said something to me the other week "people don't care because they've never heard of it and since they've never heard of it they dismiss it as a scam instead of a cause". Nice, huh? I think he's right. It's a catch 22... can't raise awareness if they dismiss it as a scam.

Every day, I spend hours on CDH awareness. I know 100's of others do too. We've got to work harder. I hope we can win the Pepsi contest somehow.... all of the projects but especially research and awareness. TV commercials for CDH.... maybe then people might care.

This past week I have given out about 1500 fliers about CDH, the contest and the Masquerade Ball. Most people are curious about the ball and will glance on the info on CDH and the contest. They just don't care.

After all.... CDH isn't Autism, it's not Breast Cancer, it's not Spina Bifida or Cystic Fibrosis or Cervical Cancer or anything they've heard of. And if they haven't heard of it, if it doen't have huge celebrity endorsement, the public doesn't care.

So we have to chance that.

I look at my son's photos. I CARE!!!!!!!!!!!!!!!   I look at all the cherub's photos.   I CARE!!!!!!!!!!!!!!! I am one person. The 3400 families in CHERUBS are made up of individuals too. But together.... maybe we can make the world CARE!!!!!

This week, one of Shane's friends, Logan (13 yrs old) had major surgery.   I mean, take out his sternum, scrape around his diaphragm MAJOR surgery.   Shane, Logan and Brandon, all born with CDH, the 3 little cherub mustakeers. I love those boys.   I can admit I was scared to death about Logan this week. I got on my knees and prayed for him, I begged Shane to watch over him.   Log beat the odds and came home less than 48 hours after surgey he was doing so well.   Can you say.... MIRACLE????    The rest of the world may not pay much attention but Logan's family and friends care.... I CARE.

Below is a photo taken of me at the hospital with a family saying good-bye their little boy.   Oz... sweet little Oz.... he only got to spend 10 hours here. His family let me be there to meet him and say good-bye too.   This is the part of my work that I hate.... watching a family suffer so badly and not being able to do anything at all to stop the pain and save their child. But being there with Oz and Kendrah and Chris.... I promised that little boy, just like I promised my own little boy.... I CARE and I will do whatever I can to raise awareness and research.   Oz's family is doing AMAZING things already in his name.   They CARE, not only about him, but all the babies!

I had no intention of ever sharing this photo. I didn't even know it was taken until Kendrah sent it to me and I wouldn't share it without knowing Kendrah and Chris would share anything to help raise awareness.   But this is the sad side of what we do. This is the worst case scenerio. This is what we try so hard to stop... the deaths of innocent little babies who haven't had a chance to live.

So when I go around the State Fair or downtown Raleigh or at other large events and I hand out fliers and I talk about CDH..... it breaks my heart to have people say "no thanks" to taking a flier.   Why don't they care?

We've had 7 newpaper articles in the past 2 months about our charity. A radio clip started last week. A tv interview tomorrow. Our angel ball committee has plastered banners and signs all over 5 towns and handed out 1000's of fliers. Some days it feels like we're spinning our wheels but we are accomplishing a lot. In the media world of updates when Paris Hilton breaks a nail or Lindsay Lohen goes into rehab... maybe we can get the world to notice 15,000 babies dying each year and 15,000 more critically ill. Somehow, some way... we will.

I hope Shane doesn't mind me high-jacking his blog to raise more awareness.   But we need more CDH awareness and everything I do I do to honor his memory.   I do care and I will keep caring and I will keep screaming and fighting and pushing for research and awarenes. I owe it to Shane, to Oz, to Logan, to all the cherubs. We all do.

Chris' Gift To Me

2010-10-24T07:12:00.000-07:00

A good friend and a member of CHERUBS made this video about me. She had me in tears, it is so sweet of her to make. I am honored that she thinks so highly of me. Little did she know that the song she chose was a song that I sung to Shane all the time as he was my hero. It is near and dear to my heart. She said it "just came to her"... maybe Shane sent a sign through her. :) And she didn't know that on the day she made this and sent it to me that that I really needed a sign that I'm following God's path and that my little boy is ok.

Chris Weaver, you're an angel to me in many ways... thank you!

Photo and video editing at www.OneTrueMedia.com

Angel Ball Baskets in Memory of Shane & Debra

2010-10-10T19:48:00.000-07:00

We can't buy them birthday presents or Christmas gifts.... so this is the next best thing. Buying items they would love and donating them to a good cause. It felt good to shop for them. Miss them both so much...

Sesame Street basket donated in memory of my son, Shane, lost in 1999 at age 6 and a half from Congenital Diaphragmatic Hernia.

This basket includes:

Sesame Street 40 Years of Sunny Days DVD
The Adventures of Elmo in Grouchland DVD
15" tall Plush Elmo Doll
Count Von Count 40th Anniversary Plush Doll
Abby Cadabby 40th Anniversary Plush Doll
Ernie 40th Anniversary Plush Doll
Sesame Street Busy Buddies Bubble Magnet Book
Elmo Socks (size 24-36 months)
Oscar the Grouch Socks (size 24-36 months)
Abby Cadabby Socks (size 24-36 months)
Hiking Sesame Street Friends Plastic Holographic Green Bowl & Cup Kid's Dish Set
Abby Cadabby Plastic Holographic Purple Bowl & Cup Kid's Dish Set
Elmo Goes to School Plastic Holographic Red Bowl & Cup Kid's Dish Set
Cookie Monster Figurine
Big Bird Figurine
Elmo Figurine
Sesame Street "Storybook ABC's" Book
Sesame Street "the Five Senses" Book
Sesame Street "S is for School" Book
Sesame Street "My Baby Brother Is A Little Monster" Book
Sesame Street "Way to Go, Zoe!" Book
Sesame Street "Let's Eat!" Book
Sesame Street "Red or Blue, I Like You!" Book
Sesame Street "Abby Cadabby's Rhyme Time" Book
Sesame Street "Love, Elmo" Book
Sesame Street "Watch Out for Banana Peels and Other Important Sesame Saftey Tips" Book
Big Birds First Book of Letters Board Book
Cookie's First Book of Numbers Board Book
Abby's First Book of Shapes Board Book
Sesame Beginnings "Eyes & Nose, Fingers & Toes" Board Book
Sesame Beginnings "At the Zoo" Board Book
Sesame Beginnings "Bubbles, Bubbles" Board Book
"Fun With Friends" Jumbo Coloring & Activity Book
"Animals All Around" Jumbo Coloring & Activity Book
"Outdoors All Day" Jumbo Coloring & Activity Book
"Festive Friends" Jumbo Coloring & Activity Book
"Happy Holidays" Jumbo Coloring & Activity Book
"Let's Pretend" Jumbo Coloring & Activity Book with Stickers
"Rain or Shine" Jumbo Coloring & Activity Book with Stickers
Elmo Red & Big Bird Yellow Trianglur Crayons Set
Cookie Monster Blue & Oscar Green Trianglur Crayons Set
Cookie Monster Figural Stamper Friend
Big Bird Figural Stamper Friend
Elmo Figural Stamper Friend

Disney Basket in memory of my sister, Debra, who died in 2002 at 22 yrs old from Rhabdomyosarcoma, a rare form of bone cancer.

4 1-day Park Hopper Passes donated by Walt Disney Company, Inc.

The remainder of the basket was donated by myself, my husband and my parents.

This basket includes:

4 1-Day Disney Park Hopper Tickets to use at the Magic Kingdom, Epcot, Disney's Hollywood Studios or Animal Kingdom (tickets donated by Walt Disney World Co.)
Mickey Mouse Disney Beanz stuffed doll
Minnie Mouse Disney Beanz stuffed doll
Disney Princess Tea Set
Mickey Mouse Laptop Junior
Mickey Mouse Clubhouse Wireless Microphone
Sleeping Beauty Tiara
Tinkerbell Socks (size 4-6)
101 Dalmations Socks (size 12-18 months)
Mickey Mouse Glow In the Dark Socks (Size 6-8)
Tickerbell Tooth Fairy Pillow
Tigger & Pooh Kaliedoscope
Winnie the Pooh Woodboard Puzzle
Disney Princess Poster Paint Set
Mickey Mouse Clubhouse Numbers & Counting Learning Workbook
Mickey Mouse Clubhouse Alphabet Learning Workbook
101 Dalmations Book
Alice in Wonderland Book
The Lion King Book
Peter Pan Books
Snow White & The Seven Dwarfs Book
Beauty & The Beast Book
Aladdin Book
Snow White and the Seven Dwarfs Board Book
Nemo School Days "Colors" Board Book
Mickey's Trucks Board Book
Farmer Mickey Board Book
Alice in Wonderland "Counting" Board Book
Dumbo "Opposites" Board Book
101 Dalmations "Colors" Board Book
The Little Mermaid Soft Toddler Book
Winnie the Pooh Soft Toddler Book
Winnie the Pooh Figurine
Tigger Figurine

It all started with Shane.....

2010-09-11T13:12:00.000-07:00

One of the last photos of Shane

Today is Shane's 11th angelversary.   11 years since I lost my little boy. I can honestly say that I remember the time he was here more vividly than I do 4 years ago or 5 years ago. It's like my life stopped the day he died and didn't start again until my husband and stepsons.   Being Shane's mom was the most magical time of my life.... I held a miracle in my arms. I had him for 6 and a half years and I feel both guilty for that when others weren't so lucky and I feel extremely blessed. He was the best little boy a mom could ever hope for.   He was perfect.   CDH, CP and all.... he was perfect.

The last 11 years have been an adventure.... lots and lots of lows and ending with highs.   Life is nothing like it was when he was here. 11 years ago, my live fell apart when my only child died.   Followed by a divorce, 2 more deaths in my immediate family, losing my house in the divorce, losing all self-confidence and ending up in 2 bad relationships and losing myself. CHERUBS took a break because I as overrun and no one offered to help and we had to deal with an unstable woman trying to break the charity down at the same time. Life was hitting me on all angles. I can tell what it's like to be completely alone and devastated and to have no one to turn to. I was at the bottom.

But there was good too.   My faith got so much stronger. I found God and Jesus in the darkness.   I helped my sister find God before her death.   I found myself.   I found an amazing man and 2 more sons. CHERUBS is now thriving and doing more for the CDH community than ever.   All of this because of Shane.

Since his last angelversary, my family and I have moved into a new house, my boys are in 10th grade and C and I have been married almost 2 years now.   Life is good! :)

For CHERUBS in the past year, we've gone to 3 medical conferences, held a CDH conference in Orlando, several local events, many fundraisers, almost done with the CDH Research Site, continue to work with amazing researchers, found 4 sponsors for our CDH Research Bill, have the Angel Ball next month, won 2nd place in a national contest and $30,000, got 5 projects in Pepsi Refresh, had 3 celebrities endorse us, posted dozens of educational CDH videos from our conferences, released a CDH song, been in the media several times, won the fight againt the CDH Awareness Trademark, have our new site almost finished and now help over 3200 families. It's been the best year for CHERUBS so far and it just keeps getting better. God clearly watches over our charity and I know Shane does too.

I got this message this morning from an old friend, another CDH mom who I've known through Shane's life and death and all the trauma the CDH community has endured the past 8 years.   A former founding board member of Breath of Hope who left shortly after she realized it's true mission.... I say that because my point is she knows what she's talking about....

just wanted to say i am thinking of shane today. i still think of shane first on this day before all the 9/11 stuff comes into my mind.
if it wasn't for shane.....NONE of us would know each other.
to me, that is truly amazing.

That meant the world to me to read this morning. That she remembers that. That someone sees that.

And she is right.   If Shane hadn't been born with CDH, Without my son there would be no CHERUBS. 1000's of CDH moms wouldn't know each other because they never would've met in our charity. There would be no CHERUBS UK or CDH Australia (formerly CHERUBS Australia) as we helped them get started and sent members to them for a decade each.   There would be no Breath of Hope as all the original members there came from CHERUBS, the founder was a volunteer at our charity before she had to be banned.   All the members at BOH for the first year or two came from CHERUBS, and our charity continues to inspire their services, set-up, projects, etc. Project Sweet Pea started at CHERUBS. The Olivia Raine Foundation, Jack Ryan Gillham Foundation and Parker Reese Foundation..... all in memory of specific cherubs but all members of our charity or recipients of our support services and attendees of our events before they went on to start their own charities.   The members of CPNTWO came from CHERUBS and BOH.   (Let me be clear before the mean girls say something nasty about my son - I am NOT taking credit for these charities). But all of these women met at CHERUBS or indirectly through CHERUBS.   They made friends for life on our forums, at our events. Some conveniently forget that and all the good we did for them and help they received.... but it's true. And in the past few years, even more charities have popped up, inspired by the success our charity has had and our mission to help CDH families or working with other charities that we inspired.   A whole generation of CDH families helped by CHERUBS. 1000's of families who found support through each other and the origins of most of that can be traced back to CHERUBS, which can be traced back to one little boy.....

I love this photo. I love how he's looking at me... like he's saying "ok Mom, he's the deal. This is CDH. Your job is to help me, protect me, love me AND help the other babies too. That's what God sent me here for!".   Such a serious face and so full of love too.

I continue to volunteer at CHERUBS in his memory. No one knows how much time, work and money I put into CHERUBS in memory of Shane. How many sleepless nights, how emotionally draining it can be to live CDH every day. In the past 3 years I've stuck my neck out to defend the charity and CDH moms a lot.   I've endured a lot. When someone attacks CHERUBS, they attack my son. My little boy. What mom is going to roll over and not defend her child?   I could say all this bad stuff is happening because of CDH, because of Shane too.... but it's not. He's the rainbow in it all. He's my strength. I could give up, move on, live out my life with my new family and turn my back on all the drama.... but I can't walk away from these babies and I can't leave these families with no support or accurate info. Too much more work still needs to be done. We still don't know what causes CDH or how to best help these babies. Too many babies are still dying. CHERUBS is my ministry... to help CDH families.   It was a calling, not a choice I ever had. God gave me Shane and he gave me and Shane a purpose.   I know He has my back, He sees all, He gives me strength and He knows all the amazing things we are doing for families. No ministry or act of goodness happens on this earth without the devil trying to tear it down. But God is with us through it all and he won't let me give in or give up. God was there when Shane was born, when he died, through all the many miracles he gave us. He was there for me when I was alone, when all this charity stuff happens (good and bad), when I cry because I miss my son, when I married the love of my life and became a mom to 2 more wonderful boys.   God was there. And Shane was there.   God gave me Shane and Shane gave me God.

One of the members tells me that Shane is looking down on me, watching it all and saying "that's MY mom!!!!".   I love that, I hope that's true.   Everything I do in this life, I want him to be proud of me.   Just as I'm the proudest mom in the world because of him.   He did more and has helped more and continues to help more people than most people who live to be 100 years old ever do.   He never committed a single sin in his whole life - never lied, stole a toy, talked back to his parents, killed a bug, hit anyone or hurt anyone (how many moms of 6 yr old boys can say that?). He was sweet, generous, kind, loving, gentle and funny.   He was perfect and he was 100% nothing but goodness.   I am the luckiest mom in the world.

I was going through photos to post on here today and I found a photo I took of Shane for Father's Day, just 3 months before he died. CHERUBS members have been submitting photos of cherubs holding signs for the contests. Secretly, it's bugged me that I don't have a photo of my cherub in this campaign too. I had forgotten about this photo and then found it this morning. I know Shane sent me this today of all days. I edited it and now he's in the campaign too. Thank you baby. Mommy needed this.

I uploaded a lot of photos of you to Facebook today too. I'm always telling other CDH parents that I understand.... now they can see that I truly do. I know what it's like to take care of a cherub and deal with CDH for years and I know what it's like to lose a cherub and grieve. But mostly, I know what it's like to be a mom. Your mom. I miss you and I love you, Shane. You will always be my hero.

APX Contest and Pepsi Refresh

2010-09-01T16:30:00.000-07:00

Did I tell you that CHERUBS won $30,000 in the contest? :D   We did!!!!!!   It was A LOT of hard work, a lot of obstacles but we did it!!!!!

We had so much help!!! Even television celebrities helping us!!!   How cool is that? We've raised CDH Awareness on an astronomical level despite the odds against us.   2nd place in a national contest!   How amazing is that?

LOTS of proud cherubs in Heaven right now!!!!!!!!!!!!!   And on Earth too!!!! :)

Drumroll please.......

CHERUBS has 5 projects in the Pepsi contest!!! That's right, 5!!!!!   Please go vote!!!!!! http://www.voteforcdh.org

THANK YOU to all the 1000's of people who voted!!!!    So many families are going to be helped!!!!

Our first press conference is coming up on September 13th.   Shane's angelversary is the 11th.   I'm going to be a basketcase.   I already have the beginning of my speech.... "11 years ago today, I was standing in a funeral parlor saying good-bye to my son because of CDH...."

Did I mention I HATE public speaking?   But it's for CHERUBS. It's for my son and all the cherubs.   I'd literally move heaven and earth for them.

But C will be there, my boys will be there. Lots of members will be there.   Local dignitaries, politicians and the media!

Vote for CHERUBS in the APX contest and Pepsi Refresh Contest! Get a FREE t-shirt!

2010-08-10T09:21:00.000-07:00

Please help babies like Shane born with Congenital Diaphragmatic Hernia! CHERUBS is in the running for $150,000 in 3 contests. ALL money won to go to help CDH!!!!! Every vote counts! Please feel free to repost!

CDH Contests

The following are CDH related events. Visit their websites to learn more about the events and how to participate.

APX Gives Back - $100,000 for CDH Research & Support

Facebook Contest sponsored by APX Alarms. CHERUBS is currently battling between 1st and 2nd place in this National contest! Money raised will be used for Congenital Diaphragmatic Hernia Research and Support services!

Here is how to vote:

1. Go to http://www.facebook.com/apxalarm?v=app_121215224555298&ref=mf
2. Then click LIKE.
3. Next click the "Start nom and voting"
4. Click on the blue logo for Eastern charities
5. Scroll down (load more if necessary) and find CHERUBS and endorse us!

You can vote once EVERY day! Repost in honor or in memory of your cherub!

The following charities are supporting us so please let's show them our support too!!!! :)

Eastern - CHERUBS of course. :)

Pacific - Handprints of Hope

Central - Military Moms and Wives

Mountain - Now I Can Foundation

Canada - Quest Theatre Society

http://www.facebook.com/apxalarm?ref=mf

Pepsi Refresh Contest - $25,000 for CDH Information Kits for Hospitals

Having your unborn or newborn child diagnosed with a life-threatening birth defect is devastating. It is even more traumatic when there is little information on the diagnosis. Our mission is to provide every major hospital in the country with informative kits that will provide information and support at the time of diagnosis of Congenital Diaphragmatic Hernia (CDH).

Cherubs are people who were born with Congenital Diaphragmatic Hernia, a severe and often fatal birth defect that occurs as often as Cystic Fibrosis and Spina Bifida. Every ten minutes a baby is born with CDH - adding up to over half a million babies since 2000.

Money won in this grant will be used to send kits to 100 hospitals - but we are hoping to stretch the budget and get discounts on printing to be able to send out 250 kits!

FB Application - http://apps.facebook.com/pepsirefresh/idea/view/id/1da7df6c-d2c6-102d-826f-0019b9b9e205?ref=mf
Site - http://www.refresheverything.com/cdhhospitalkits
Text - 101211 to Pepsi (73774)

How will the 25K be Used?

$ 3,500	100 copies of "Stories of Cherubs" Vol. I
$ 3,000	100 copies of "Stories of Cherubs" Vol. II
$ 600	100 CDH Educational Posters
$ 4,000	2000 "Parent Reference Guide" Booklets
$ 2,500	3000 Informational CDH Brochures
$ 2,000	4000 CDH Awareness Ribbon Pins
$ 7,000	3000 CDH Newsletters
$ 300	100 thick boxes to hold the kits
$ 1,200	Shipping 100 kits

Budget Notes: All items are designed by us to defray the cost of hiring graphic designers.

You have 10 votes a day - please make sure to go visit and vote for some of the other amazing kid's charities in this contest, including:

Pepsi Refresh Contest - $25,000 for Financial Support for CDH Families

FB Application - http://apps.facebook.com/pepsirefresh/idea/view/id/11cf40c0-d53e-102d-826f-0019b9b9e205?ref=mf
Site - http://www.refresheverything.com/cdhfamilies
Text - 101202 to Pepsi (73774)

How will the 25K be Used?

$ 10,000	500 $20 gas cards
$ 5,000	10 $500 airline grants
$ 5,000	250 $20 grocery store gift cards
$ 2,500	125 $20 restaurant gift cards
$ 2,500	50 $50 hotel gift cards

Budget Notes: Most pediatric hospitals are affiliated with the Ronald McDonald House, which provides lodging for many of our families. Our request for hotel gift cards are for those traveling long distances overnight to reach a hospital or those rare times when a Ronald McDonald House does not have an empty room.

Help Raise Congenital Diaphragmatic Hernia Awareness and Win Prizes!!!

This is a contest inside a contest! CDH Awareness Kits and T-Shirts that say "I am a CDH Hero! I helped to 1000's of babies born with Congenital Diaphragmatic Hernia by raising money for CDH Research and Support!" will be awarded to the people who (1 prize each):

1. Whoever has the most "attendees" on their Vote for CHERUBS in the APX contest FB event.
2. Whoever has the most active wall on their event by getting people to vote and then post that they voted.
3. Whoever is the most creative off of Facebook to raise votes! Handing out flyers, have a "vote in" at work or school, talk to your church, etc. (take photos!)

Awards given by voting done on CHERUBS forums on August 22nd - 30th. All members can log in and vote on who should win the above 3 awards.

If CHERUBS wins the $100,000 prize, all 3 winners will ALSO win (valued at over $350!);
2 tickets to the Angel Ball
"Stories of Cherubs Vol. I"
"Stories of Cherubs Vol. II"
CDH Baby Book
"Cooking with Cherubs" Vol. II
4 personalized t-shirts each with their cherub's CDH Awareness ribbons on them
the above prizes of a CDH Awareness Kit and contest T-shirt!

What a great and fun way to raise awareness and funds for a good cause!!!!!

Get a FREE "Vote for CHERUBS" shirt!!!!

Vistaprint.com is a wonderful printing web site that often gives away free items!

You just upload photos and add text to shirts, signs, cards and more! Upload your own cherub's photo and add the words "Vote for CHERUBS" or "Vote for CDH"! It's very, very easy!

Make sure to send us photos of you in your shirt! :)

You can download free graphics below by clicking on them. You can also download all the kids graphics to the right.

Congenital Diaphragmatic Hernia Contests

Promote Your Page Too

Shane in the APX Gives Back Contest video

2010-06-21T08:41:00.001-07:00

http://www.youtube.com/watch?v=Qq-y5unxyQg
This video was done for APX after I won 2nd place in their Memorial Day contest. It features many cherubs and raises awareness! and video of Shane! Feel free to repost this vide, this press release or any of our information to help promote CDH awareness.

PRESS RELEASE: Raleigh Charity In Close Race To Win $100,000 National Contest

2010-06-21T08:39:00.001-07:00

New press release and blog post at CHERUBS that mentions Shane. There is also a new video for the APX contest that includes my little guy. :)

Local Nonprofit Organization In National APX Gives Back Contest In The Running For $100,000 To Help Raise Awareness and Research Funds for Devastating Birth Defect

06-21-2010

Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) learned about a contest on Facebook through a member expecting a baby with CDH.

Alarm company, APX, based out of Provo, Utah is known to be very generous to the non-profit community. This contest is yet another way that this company gives back. 5 lucky charities will win $30,000 and another charity will walk away with a grand prize of $100,000.

The APX Gives Back contest is made possible through a software application on the popular social media site, Facebook. It began on May 3rd with Facebook users nominating their favorite charities in 5 regions. On June 14th, the top 15 charities from each region made it to Phase II, where the votes were reset and the real competition began. The charity with the most overall votes by August 21st will be awarded $100,000, while the other charities in the remaining regions with the most votes will receive $30,000 donations. CHERUBS has steadily held first place in the Eastern Division.

CHERUBS not only made it to Phase II but has been battling it out for 1st place with a division of the Prader-Willi Syndrome Foundation also based in Utah. The two charities have been remained within 200 votes of each other, trading between 1st and 2nd places. “We are so excited to be doing so well in this contest and to be in the company of so many other wonderful charities! We have learned so much about other causes and became friends with many, including members from the Prader-Willi Syndrome Foundation and we are already looking into ways to work together on projects for both our causes. No matter who wins this contest, we will all come out as winners. This has been a wonderful platform to raise awareness for all of our causes” said CHERUBS President, Dawn Williamson.

Founded in 1995 by Mrs. Williamson and based here in the Triangle, CHERUBS is the world’s first and largest CDH organization with over 3300 members in 38 different countries and all 50 states. Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Shane spent his first 10 months in the pediatric intensive care unit of Duke University and had many other hospitalizations and surgeries at the University of North Carolina at Chapel Hill.

“I miss my son every single day; CDH took him from me and robbed him of any type of normalcy during his short life. I lost the chance to watch him grow up and grow into a young man; learn to ride a bike or drive a car; go to college or get married or have children of his own,” said Williamson. “No mother’s arms should ever ache for a child she can no longer hold. Shane was an amazing little boy that was always happy despite the fact that he spent so much of his life in the hospital. CDH devastated our family.”

Williamson made it her life’s mission to help other families affected by Congenital Diaphragmatic Hernia. If there is any doubt of faithfulness to this mission you need only to read the glowing reviews families around the world have posted all over the internet about how CHERUBS has helped them through their darkest days, see all the services listed on their web sites or count the over 11,000 fans they have on Facebook.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. It affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year, half of which do not survive. Some of the other half, like Williamson’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, or long-term pulmonary problems.

In the U.S., there are annually more victims from CDH than tornados, hurricanes and lightening strikes combined. There are more children born each year with CDH than there are children born with Cystic Fibrosis or Spina Bifida, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH. According to a Congressional Bill the charity is hoping to get passed for CDH Research, the estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000 while annual grants allocated by the National Institutes of Health for CDH at several research facilities is currently estimated at less than $5,000,000. Through this contest and other efforts, CHERUBS hopes to raise more awareness and funds for research and family support. “These babies are dying by the hundreds and there is no known cause. The survival rate is only 50%. This just cannot be acceptable” says Williamson.

“This contest has not only allowed us to dramatically raise awareness about Congenital Diaphragmatic Hernia but it has offered us the opportunity to raise more money for our charity than we ever have before. $100,000 can do so many things for the CDH community and we are so grateful to APX and to everyone who is voting for us.” For a small charity powered by volunteers, donations and fundraisers and run in a spare room of Williamson’s home to save funds, $100,000 could indeed go a long way. “We have over 3300 members and all of our services are free to CDH families. We run a very large web site with forums for families to gain information and support 24 hours a day, an annual international Congenital Diaphragmatic Hernia conference, the world’s largest CDH research database, we send care packages to new and expectant parents and so many, many other services on less than $35,000 a year. Our budget averages about $10 of assistance per family, which is ridiculous but we somehow pull it off. Winning this contest could do so much for our ability to help more CDH families!” says Williamson.

Families affected by CDH agree. “I vote because my sweet baby Mallory has opened our eyes to a terribled condition that we knew nothing about at the time. And from the statistics we have learned about CDH it saddens me that this illness is so unknown. CHERUBS has been my crutch from day one of diagnosis. I cannot imagine going through all of this without the support and information I have gotten from the organization and its members. Mallory was born on Jan. 4th of 2010, and still going strong in the hospital, and CHERUBS has been there for us every step of the way. God bless you all, and thank you from the bottom of my heart” says mom Sara Jimel Givent.

“I am voting in memory of our sweet Joshua who was born on March 26, 2010 and was with us 16 days. We love him and miss him terribly. If CHERUBS can win the $100,000, maybe another family won't have to go through this” wrote dad Jeff Campbell.

“Voting for my son Brandon who was diagnosed with CDH two days before his delivery in 2004. The only information we could find that even gave us hope was "CHERUBS". His outlook was not good but he is strong and healthy today because of UNC Children’s Hospital and Brandon’s drive to survive. Thanks CHERUBS for all the hard work and dedication that you provide for families struggling with this horrible birth defect. You gave us hope when we had none and during the long stay in the hospital. This continued even when we were dealing with many of the issues after we finally got him home” writes Fayetteville resident Cheryl Sandoval.

The fight to help these families is also obviously apparent in the members of CHERUBS. “When I was lost and all alone I turned to the internet hoping to find someone who cared...I found CHERUBS and a WHOLE BUNCH of FABULOUS someones who KNEW how I felt without me having to explain...CHERUBS has been my lifeline through our journey with CDH. There is always someone there with a comforting word when you need it, or someone who listen to you rant and vent when need be. It's a WONDERFUL group of people who I am proud to call my CDH family. I'm so sorry we've all met due to CDH, but if we all stick together, there's no telling what we can do to help rid the world of this terrible birth defect” says Canadian mom Shana Kelly.

CHERUBS welcomes the community’s support and votes in this contest. If you would like to help this organization you can vote through Facebook at http://www.facebook.com/apxalarm?ref=mf CHERUBS is in the Eastern division.

Proceeds from the contest will benefit CHERUBS Research and Support Funds, and Williamson is hoping that the contest will bring out many supporters and media to help gain recognition for both CDH and the organization’s efforts.

CHERUBS will also gladly accept any donations to help further their work. Tax-deductible donations can be made on-line at http://www.cdhdonations.org or mailed to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587.

To help raise more awareness and money for the organization, as well as funds to continue research and outreach, CHERUBS will be hosting a key fundraising event this fall. The CHERUBS 2010 Masquerading Angels Ball will be a formal event held on October 30th at the Durham Hilton near Duke with celebrity guests, a live band, casino and an auction. More information on this event is available at http://www.cherubsangelball.org

“There is still so much research that needs to be done. In 2010 this birth defect should not still exist, much less still have so many unanswered questions and so little research,” said Williamson. “CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH and we will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found.”

About CHERUBS

CHERUBS is a 501(c)3 organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of June 2010, CHERUBS has over 3300 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.

http://www.facebook.com/apxalarm?ref=mf
http://www.cdhsupport.org
http://www.cherubsangelball.org

http://www.youtube.com/watch?v=Qq-y5unxyQg
This video was done by Dawn Williamson for APX after she won 2nd place in their Memorial Day contest. It features many cherubs and raises awareness! Feel free to repost this vide, this press release or any of our information to help promote CDH awareness.

More quotes from CDH families on Facebook:

Jarod

Sara Jimel GIvent is my daughter, Mallory my grand-daughter. I suooort absolutelly. Thank you for your support. --JW

Shana

When I was lost and all alone I turned to the internet hoping to find someone who cared...I found CHERUBS and a WHOLE BUNCH of FABULOUS someones who KNEW how I felt without me having to explain...CHERUBS has been my lifeline through our journey with CDH. There is always someone there with a comforting word when you need it, or someone who will ... See Morelisten to you rant and vent when need be. It's a WONDERFUL group of people who I am proud to call my CDH family. I'm so sorry we've all met due to CDH, but if we all stick together, there's no telling what we can do to help rid the world of this terrible birth defect.

Sara

I vote because My sweet baby Mallory has opened our eyes to a terribled condition that we knew nothing about at the time. And from the statistics we have learned about CDH it saddens me that this illness is so unknown. Cherubs has been my crutch from day one of diagnosis. I cannot imagine going through all of this without the support and ... See Moreinformation I have gotten from the organization and its members. Mallory was born on Jan. 4th of 2010, and still going strong in the hospital, and Cherubs has been there for us every step of the way. God bless you all, and thank you from the bottom of my heart.

Hope

For our 8 year old survivor, Tyler!!! He rocks our world AND the CDH world!!!! He laughed as he recovered from CDH and only looked back once, and laughed at it again that time, too!!!!!

Kelly

for our 7 year old survivor who has had 2 repairs. cherubs was the only place we could get any info or advice, without you guys we would have been on our own through out

Margie

In memory of our son Joshua 1984-1988.

Hayley

for our little ray of sunshine, Lewis, LCDH survivor born 12th November 2009, he brought the sunshine back into our lives after 2 storms and he hasn't looked back, apart from the feeding tube you wouldnt even know, the info and support from CHERUBS was just amazing and helped us sooo much xx THANK YOU CHERUBS xx

Gillian

Im voting for Cherubs for my wee boy Sonny who was born with CDH in Sept 2007. We were initially told he was a "non starter" and advised to abort him at 20wks, but we insisted on being transfered to Yorkhill where we understood the doctors had knowledge of the condition. It was the consultant/surgeon there that gave us more information and said ... See Morethat the only website that they feel happy for us to read was Cherubs, so we did and it gave us hope. Sonny had his operation @ Yorkhill (Glasgow) and spent 3 weeks there before coming home to us. He is a very happy wee boy and keeps in good health.

Ashley

I vote everyday for CHERUBS!! My son Brayden was born on March 23, 2010 with Left CDH. This was all new to us... we had never heard of it before. He wasnt diagnosed until after birth. We both were transferred to another hospital. While we were notifying the rest of the family, my cousins was telling on of her friends about what was going on and ... See Moreanother person overheard it and contacted her friend that had a son who passed away with CDH. We got in touch with each other and she gave me of moral support and alot of information about CDH. She and her husband visited with Brayden and I. She asked the doctors questions that i never knew to ask. He had his surgery at 4 days old and is doing fairly well. Thanks CHERUBS for all that you do for the families dealing with CDH!!

Kelli

Im voting in remembrance of our baby boy Joshua Levi Campbell who was born March 26, 2010 and passed away April 11, 2010. He was born with right sided CDH, a heart defect, and Downs Syndrome. He fought for his life for 16 days and then his body finally gave up. He was a tough little guy. I delivered him at 7 months pregnant, so we were told he ... See Morewould not make it at all. Everyone was surprised when he came out fighting, and breathing on his own even for a little while. During the pregnancy our doctors couldnt tell us much about CDH, thats when we discovered the Cherubs website. They have been so supportive throughout everything! The doctors at the hospital didnt even tell us as much as the Cherubs website. Without Cherubs, we would have felt lost and clueless. Now we are working to tell other hospitals and doctors offices all about Cherubs so they can give information to their patients as well. :)

Sue

Even though I've had liittle to do wth CHERUBS, I want CDH to be known to the world. I want everyone to know what it is and how devestatng it can be. How it takes away from the joy of pregnancy, how it isn't an "easy fix", the lasting effects even if you've had a successful repair. My Emily is nearly 2 1/2yrs old. I didn't get help from any ... See Moresupport group, but would like all future families of CDH to have easy access to support groups.

After the diagnosis we went straight to the internet for nfo. We thought Cherubs was confusing to navigate and ddn't want to join any group about sick children, I couldn't handle that my child would be on of the statistics. In retrospect I wish I had joined so I could've had support and more knowlegde before and during our 4 month hospital stay away from home, husband, kids, family and friends.
I want the public to understand how a child won't/can't eat because they didn't get a chance to learn how because she/he was too busy fighting for their life!

Angela

I am voting for CHERUBS in honor of my grandson Hayden born September 2005 with no diaphram at all. Both right and left was not there....given a zero change survival, God took Hayden and gave us the miracle that we needed and grew him lungs and gave him the breath of life. After 6 months in the hospital and 11 surgeries later....he is one healthy 4... See More 1/2 year old with only scars and a feeding tube that reminds me of his fight for life. CDH is rare in the area so a move to another city and hospital was the reason that he did so well. Vanderbilt Hospital is the place to go! Thanks to the CHERUBS website as we have learned so much of what others besides us have experience and understand what you went through. The world needs to know that this defect needs research to be able stop/ and or treat this when it happens.

Freedom

Child’s Full Name: Kylee Freedom Green

Date of Birth : Born October 4, 2000

Date of Passing: October 5, 2000 - ... See More

Additional Items ~ Kylee was our 1st daughter. We were on top of the world with the news of our new arrival. On our 1st ultrasound we got the news of what would soon change our lives forever and make us stronger as a family. We found out our daughter had Left Side Congenital Diaphragmatic Hernia with stomach in her chest and small portion of her liver , heart defects, two vessel cord, and Trisomy 18. We had never heard of CDH before and went right home and started searching the internet for information. We found a wonderful support group CHERUBS http://www.cdhsupport.org/ who provided us with a wealth of information. From there we told family and friends our story. We hit the ground running and set up lots of appointments with doctors to get more information about our case and how & where to deliver our daughter with the best care for our situation. None of the hospitals in our area at the time ( Austin, TX ) had what was needed for her arrival so we headed to another location ( Houston, TX ) to meet with doctors and get a team set up for her arrival. We felt great with everyone we had meet and felt like it was time to hang tight and wait for her arrival. At our 35 week check-up I was told to go right to the hospital for and emergency c-section. Yikes…..I felt like we where dreaming. I’m not sure we were ready, but this little one had different plans. Kylee blessed our life for 14 wonderful hours and then went on to earn her wings. The doctors and staff did a wonderful job caring for her. Everyone will hold a special place in our hearts for all they did for us. We now have 4 other children who share our love of Big Sister Kylee. Maybe someday they will find a cause or cure for CDH babies. We never give up hope. Thank you Dawn for everything you have done throughout the years for SO MANY people.

Joe, Freedom, Trey (7), Skyla (6), Chloe (4), Elodie (1) - Make up our family Team!

Gabrielle

I have been voting for my son Jayden! Found out 3 weeks before he was born that he had CDH. He is our little fighter, 1 surgery for CDH and 2 surgeries when he was 3 months old for malrotaion of his intestines.Now he is an active 18 month old who gets into everything and luckily no ill effects from the CDH!

Karen

Ruben Luis Aguirre IV-in memory of born Feb. 17th, 2010 passed Feb. 17th, 2010...my precious grandson

Denise

I am voting for my precious grandaughter Chloe Elizabeth Tate born on the 8th September 2009 but sadly went to be an angel in heaven on the 11th September 2009, always in our thoughts. xxx

Brandy

I voted in honorof my son Myles Hunt. He was born 11/27/2004.His prognosis was grim (as most CDH babies are).He is an ECMO survivor as well as surviving his CDH with half of a diaphragm, the other half being a gortex patch sewn to is rib cage. He continues to amaze his doctors and mommy and daddy EVERYDAY. WE LOVE YOU, Miracle Myles

Cindy

I am voting in memory of my precious grandson, Dawson Gabriel Martie. He was born on May 16, 2009. Spent 12 days on ECMO. He earned his wings on June 4, 2009. So we have just passed that first year mark.

Cheryl-anne

my daughter was born with CDH....but it wasnt diagnosed until she was 3 years old!!!!!....a right sided hernia of 90%....she is a very lucky young lady and after surgery....all is well - she has just turned 17!! My thoughts are with all who have these very special children.......

Cheryl-anne

...just adding to our story, my little girl would not eat very much and failed to grow normally.I was feeding her up to 20 'meals' a day just to get her nutritional levels up!!! I took her to countless doctors and specialists who gave lots of 'diagnoses' but nobody considered a hernia because these special little ones do not usually get through ... See Moretheir infancy without the need for intervention. My advice to all parents...if you feel that there is something wrong with your child ..keep searching, the answer is out there!!

Sunny

I am voting because of my little brother Sawyer. He was born with CDH and as a result he has cerebral palsy. He is my little angel, he can't talk, but his laugh is pure and good. He has beautiful blue eyes, and when I look into them I know that he is in there, somewhere inside his crippled little body. I love him so much. Sawyer six now, and he can walk, having him in our family has been a huge blessing.

Lisa

I am voting for my little buddy Adam! 8 years ago we joined Cherubs and my goodness, did we need you then! From advice on the gtube to the support for a crying frustrated mom, there was even support for us when my little brother passed in Iraq, all the prayers and love that was given to us is still appreciated. We never felt alone from the time he ... See Morewas born and we found out until today. I know that if I need it there is someone there to talk to.

I am also voting for a family friend whose niece's baby was just diagnosed last week with CDH. Her baby is due in october and we are praying for her.

My youth pastor's (from many years ago) daughter also has CDH! For some reason I seem to be surrounded by it. They were such a blessing to see when Adam was in the NICU under going his repair. I haven't seen Joey and his wife since but they don;t know what a blessing they were to Dana and I when they showed up to the hospital with their precious daughter (then 3) and story.

Shelly

Voting for our 2 beautiful Cherubs. I vote in memory of our angel Jayden & in honor of our survivor K who was diagnosed after having feeding problems after a few weeks of age.

Jayden was born Feb 19, 2010, was on ECMO for 7 days and after a successful weaning was gaining strength for surgery when the the pressure from the intestines in his chest ... See Morecompressed his heart causing insufficient blood flow to the kidneys. He grew his wings from kidney failure at age 23 days on March 14, 2010. Saturday he would been 4 months old.

Jeff

I am voting in memory of our sweet Joshua who was born on March 26, 2010 and was with us 16 day. We love him and miss him terribly. If Cherubs can win the $100,000, maybe another family won't have to go through this.

Brandi

I am voting for my youngest son Gunner. He was born with CDH and is going to be 3 next month. It has been a long journey but he is alive and doing well. I would like to know the cause of this condition and to help prevent any other children from developing this condition.

Jane

I am voting in memory of my precious granddaughter Chloe, who we lost to CDH last September aged 3 days. It was the hardest thing I have ever had to do to watch my daughter and her partner go through 20 weeks of pregnancy knowing that there was only a slim chance that they would have their beautiful daughter to ring home. To lose Chloe was the most painful experience of my life and if research can help someone else never experience this then I will vote every day for as long as it takes.

Pamela

I vote in honor of my precious cherub Sawyer. 6 1/2 years ago the doctors gave us very little hope for survival. Today he is my miracle. His challenges are many. As a result of the CDH, he suffered an inutero brain injury and has cerebral palsy. He is my joy and my challenge and I love him every minute!!

Dayna

I am voting in honor of my Emma. She is a CDH Survivor. She was given a zero chance for survival at birth, and here we are 2 1/2 years later. Dealing with the diagnosis of CDH prior to giving birth and the effects of CDH after giving birth to emma have been horrible. Emma is such a fighter, 9 surgeries down, another one scheduled for july 2nd. It ... See Morenever seems to end. It didn't stop at just CDH, the complications from the CDH are what we are dealing with now. These poor babies having to fight for their lives every day is so unfair.

Cheryl

Voting for my son Brandon who was diagnosed with CDH two days before his delivery in 2004. The only information we could find that even gave us hope was "Cherubs". His outlook was not good but he is strong and healthy today because of UNC Childrens hospital and Brandons drive to survive. Thanks Cherubs for all the hard work and dedication that ... See Moreyou provide for families struggling with this horrible birth defect.

You gave us hope when we had none and during the long stay in the hospital. This continued even when we were dealing with many of the issues after we finally got him home.

Jamie

I am voting in Memory of my warrior Kaden James Morrow. He was born Aug 18th 2008 & chose wings Sep 16th 2008. Kaden was diagnosed at 16 weeks gestation with liver up at 21 weeks. Kaden survived for 29 days. The pain from losing a child is intense but I think it is even more difficult when you dont know why. There is no known cause to CDH and I ... See Moretruly believe my heart cannot heal until I know why. It wont bring him back but hopefully it could put an end to CDH and the devastating pain it causes. Not only did CDH take my son, it took a part of me. It took my daughters innocence and my husband's faith.

Sarah

i am voting in memory of my son, jeremiah, who through his struggle with CDH has taught me how much stronger a person is than they originally thought. i hope CHERUBS wins this contest to aide our efforts and supporting the families of CDH, and to bring awareness to this suprisingly common yet devastating condition.

Amy

Cherubs has my vote,never knew about this until my friends grandbaby was born with it!God bless!

Mandy

it has my vote too!! i lost my son to cdh in 1999. didnt find out about it til after he was born!! he lived less than 24 hours. he was my only lil boy!! my daughter will be getting marred on what would have been his 11th bday!! i love and miss him everyday,not a day goes by that i dont think about him.love and miss you john joseph blocker 7/31/99-8/1-99

Judye

I am voting in memory of my son, Alexander Joseph Nazareth who was born 9/1/02 and lived 6 hours. He was such a fighter for such a little man. I have gone on to have two healthy daughters but there will forever be a hole where my little boy belongs.

Julianne

I voted in memory of my daughter, Julia Noelle Faith (4/8/10 - 5/3/10).

Suzanne

I vote everyday in memory of my sweet baby niece, Julia Noelle Faith, who was born 4/8/10 and passed away 5/3/10. We miss you Baby Julia! XOXO

Alana

please everyone vote to have more research on this terrible congenital defect that takes babies' lives and has many children who do live struggle for life. Julia Noelle Faith is my grandbaby angel in Heaven. She put up a valiant fight but received her wings 5/3/10. Love always and forever Julia.

Molly

I was 20 weeks pregnant when my husband and I found out that our baby had CDH. That was the first time we had heard of it. The doctor (not my doctor) who read the results of the ultrasound, told us our baby had a hernia in the diaphragm and with surgery it would be taken care of.

I researched as much as I could, and found out about the reality of CDH. I found amazing people and great support with CHERUBS.

Joshua Angel had severe left sided CDH, hydrop fetalis/polyhydramnios, heart failure, and severe pulmonary hypertension. At 29 weeks pregnant I was told that my baby needed to be delivered because of the hydrops worsening. I was transferred to another hospital because the pediatric surgeon was not available at the time. Joshua was born a few hours later and passed away at 12 hours old on March 31st, 2010. I vote every day in memory of our sweet Angel, and for awareness so that other families will know about this wonderful charity; therefore, find accurate information.

Kendrah

I'm voting for my little 5 lb 9oz (so far!) Oz, who's to meet us in July, he was diagnosed March 1st with CDH.

I'm voting for all of the expecting, grieving, and survivor families that have had to listen to the medical community tell you at best your child has a 50% chance of survival. Those of us who face or have faced all of the scrutiny, who ... See Morehave lost the "normalcy" of a pregnancy, who want to be excited going into an ultrasound, but instead are filled with trepidation about what the Drs are going to say next. Who live everyday with hope, but have a flurry of "ifs" and unknowns lingering in the background about what the future holds.

I'm voting because there is not enough known about a condition that affects so many children...a condition with very little research being performed. To promote awareness because so many people have never even heard of CDH or when you try to explain it, they think it sounds "easy enough" to fix.

I'm voting because CHERUBS has been there for these families for 15 years...and for us the day we found out. These people open their hearts, their families, their stories to those of us new to the community. They provide so much for the families - support, the best and most up to date information, tote bags, etc... They have fought legal battles, and manage many fundraisers to promote CDH awareness and support research.

Andrea

wooohooo!! well said!

Helen

I'm voting in honour of our beautiful 9 month old daughter Holly, right sided CDH and ECMO survivor. CHERUBS has given us a place to learn more about CDH and all of the other problems CDH babies have ..... pulmonary hypertension, oxygen dependency, NG feeding, oral aversion to name but a few.

Stuart

My little girl Anya is due to be induced in 13 days. Cherubs is the only place we could learn anything about previous and current sufferers, and, while terrified, we've been offered a lot of support.

Lalitha

I am voting in honour of my 4 months old darling daughter Deetya who survived Left side CDH. CHERUBS is one place where i got my ABCD's of CDH. Cherubs gives the hope to many mothers like me.

Denise

I am voting for our beautiful grandaughter Chloe who was born on the 8th Septembr 2009 but sadly went to be an angel in heaven on the 11th September 2009. Cherubs have given my son and his partner so much support over the past year and we cannot thank them enough. Love and miss you always Chloe xxx

Amy

My thoughts and prayers go out to all the families who's children have this!God bless!

Emma

Im a survivour of CDH, im nearly 32 now! had 2 wonderful children!!

http://www.facebook.com/apxalarm?ref=mf

3 CDH Charities, 2 Contests!

2010-06-15T06:36:00.000-07:00

From CHERUBS Blog. Posting here to ask all of Shane's family and friends to please help other cherubs!!!!

It's a busy time on Facebook, there are now 3 CDH charities in 2 contests and all 3 need your help! This is a quick, free way to help families affected by Congenital Diaphragmatic Hernia!

CHERUBS made it to Phase II in the APX Gives Back contest!!!!!

You can vote by going to http://www.facebook.com/apxalarm?ref=mf

Then click LIKE.
Next click the "Start nominating and voting".
Click on the blue logo for Eastern charities
Scroll down and find CHERUBS and endorse us! EVERY DAY! Repost too please! :)

On Friday, we were in 1st place but now in Phase II the votes have been reset so we need to get all the votes we can!!! We have a chance to win $100,000!!!! All winnings from this contest will go to CDH Research and CDH Support!!!!!!!!

Almost 2 weeks ago we told everyone to get ready for the Chase contest to vote for Real Hope for CDH, now the contest has started and we have 2 members of ACDHO in the Chase Community Giving contest!!!!

Dr. Kays watching over one of his cherubs

Real Hope for CDH in the Chase contest!

http://apps.facebook.com/chasecommunitygiving/charities/201505045-real-hope-for-cdh-foundation

Real Hope for CDH, affectionately known as "Kays Kids" is an ACDHO charity that helps fund the research of Dr. David Kays at the University of Florida in Gainesville / SHANDS. Dr. Kays pioneered the "gentle ventilation" technique of ventilating CDH babies. He is a wonderful doctor, a great man, a friend of CHERUBS for over 10 years and a saint to every family whose cherubs have been under his care. All winnings from this contest will go directly to Congenital Diaphragmatic Hernia Research to learn how to better treat babies born with CDH. To learn more about Real Hope for CDH, you can visit http://www.realhopeforcdh.com

The Olivia Raine Foundation (another ACDHO organization!) is also in the Chase Contest!

Olivia Raine Richards

http://apps.facebook.com/chasecommunitygiving/charities/261968725-olivia-raine-foundation

The Olivia Raine Foundation is named in memory of cherub, Olivia Raine Richards. Her family started this foundation in Michigan to help grieving parents pay for their childrens' funerals. They are very low on funding right now and can use all the help they can get! Please vote for them in the contest! For more info or to make a donation, go to http://oliviaraine.org/

Working on the Angel Ball in memory of Shane

2010-05-25T12:43:00.000-07:00

This is a huge event for me this year... along with the conferences that I'll talk about in some other posts. Craig is planning a Golf Tournament and I'm planning an Angel Ball... both of us volunteering in memory of Shane. I'm inviting everyone to buy tickets and join us at this wonderful event for a great cause!!!!!!

Tickets and Sponsorships are now available for our 2010 Angel Ball at the Hilton near Duke in Durham, NC

http://angelball.eventbrite.com/

http://www.cherubsangelball.org

CHERUBS Masquerading Angels Ball

October 30, 2010

Hilton near Duke, Durham, NC

Formal, black and white masquerade ball to benefit CHERUBS, a 501(c)III non-profit organization founded to help families affected by Congenital Diaphragmatic Hernia through promoting and conducting research, raising awareness and supporting families through dozens of free services.

We have 4 celebrity guests so far!!! Including a TV star and 3 time Grammy award winning musician. All will be announced soon! :)

2010 CHERUBS Masquerading Angels Ball

October 30, 2010
6:00 pm - Midnight

Formal Charity Masquerade Ball on the eve of Halloween

Hiton Durham near Duke University
3800 Hillsborough Road, Durham, NC 22705

Event: CHERUBS Masquerading Angels Ball

Date: Saturday, October 30, 2010

Time:   6:00 - 7:00 cocktail hour, 7:00 - Midnight Ball

Location:   Hilton Durham near Duke University, 3800 Hillsborough Road, Durham, NC 22705

Beneficiary: CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. Money raised from this event will go to CHERUBS to fund services to further help families of children born with Congenital Diaphragmatic Hernia. CHERUBS is a 501(c)III international children's charity.

Attire: Our FORMAL black and white masquerade ball encourages men to wear tuxedos and women to wear white. Dust off your wedding dress ladies, you are encouraged to wear it again or you can opt for a little black dress.   FORMAL period costumes are welcome.   Masks are required, some will be provided.   Not acceptible; typical Halloween costumes and masks.

Tickets: $50.00. Tickets include entry to event, casino, auction, ballroom. It also includes entertainment, hors d'oeuvres, drinks, 2 raffle tickets, 1 bar ticket, 2 casino chips.      http://angelball.eventbrite.com/

Age Requirement: You must be 21 years old or older to attend.   CHERUBS reserves the right to refuse ticket sales when necessary.

Celebrity Guests:   Will be revealed soon!

Live Band:   Will be revealed soon!

Casino:   Take a spin on the roulette wheel or try your hand at blackjack in our Casino Lounge.

Silent Auction:   Come browse our auction items donated by celebrities, local artists, local businesses and members of the charity.

Photographs:   Have your formal portrait taken, a reminder of a wonderful night.

More details coming soon....

Our 2008 CHERUBS Angel Ball was a success!

The crepe myrles and lilies were gorgeous outside and the flowers were stunning inside. The food was amazing, created by several local caterers who indeed created "An Angelic Taste of the Triangle". The band was rock'n! The Master of Ceremonies was charming. The hostesses were beautiful. The volunteers were incredible. The auction was wonderful and exciting. The raffles were fun. The photographs are stunning. The room was full of angels.

We danced, we ate, we bid on items and we learned about CDH. All for a great cause and the event was fun and enchanting, thanks to our incredible event planners and the ladies at the Raleigh Junior Women's Club.

The entire night was magical - so magical that we even had a proposal at the event! What better compliment is there than that?

photo by Mandy Sroka Photography

Our Organization:

CHERUBS is a 501(c)III organization located in North Carolina.   CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH).   As of April 2008, we have over 2250 members in all 50 states and 33 countries. Our Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. We are a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization.

www.cdhsupport.org

What is CDH?

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.     The cause is not yet known.

Roughly 50% of babies born with CDH do not survive.   Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.< CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

Please vote in memory of Shane to help CHERUBS win $100,000!!

2010-05-22T06:16:00.000-07:00

CHERUBS has been nominated for a contest to award $100,000 but we need your help!!!!

The APX Givesback Project needs your help in honoring local charities that are doing heroic work in communities across the United States. Getting involved is quick and easy. Here are the key steps to follow:

Nominate your favorite charity – Beginning May 3, 2010 Facebook users can nominate their favorite local charity. It might be a nonprofit you volunteer with or just one you feel is doing great work in helping others. If your favorite charity has already been nominated, you can endorse them on APX Givesback’s Facebook application. The top 15 charities receiving the most endorsements in each of the 5 regions through June 12th become Regional Finalists.

Vote for your favorite charity – On June 14, 2010 the real fun begins. Facebook users from all over the US and Canada will be able to vote for their top 5 charities who they feel are having the most impact in local communities. The eligible charity receiving the most votes through August 21, 2010 will be named the APX Givesback Project’s top local charity. The top overall charity will receive $100,000. But don’t worry; each of the 5 regions will also have a winner who receives a $30,000 donation.

Please vote for us! All proceeds to benefit CDH Research and Family Support!!!!

http://www.facebook.com/apxalarm

or http://www.facebook.com/apxalarm?v=app_121215224555298... See More

Click the "Like" button, then click to Vote / Nominate. We are listed under Eastern NonProfits. Find us and click on the Endorse button.

Please post and invite friends to vote also! We have a lot of voting to do to catch up in the contest!!!

.

2010-05-09T07:56:00.000-07:00

Oh my God, how much I miss you today my son.

Why Not My Cherub?.... A Letter To Grieving Parents

2010-05-07T08:21:00.001-07:00

I wrote this last year for other grieving parents. Sometimes I still need it myself.

Dear Grieving Parent,

It is not because you were not worthy of your cherub - you were and are. You are so worthy that you have been entrusted to carry on your life's goals and theirs as well. You are so worthy that your cherub chose you to be his or her mommy and daddy during their short time here. You are so worthy that you were blessed enough to be the parent of a living angel... a child placed on earth to touch the hearts and lives of so many people. So much love and so many lessons put into such a short time. Not everyone can comprehend that great blessing and that great responsibility - but you were chosen.

It is not because of your faith or doubts. It is not because you didn't pray hard enough or because not enough people prayed for your cherub. There are cherubs who have had 1000's of people around the world praying for them... and they did not survive. We have had cherubs whose parents do not believe in religion and they have survived. Your prayers for a miracle were not refused. You have received miracles too... even though they may not be the one you wanted most. Prayers can sustain us through whatever CDH throws as us, helping us to make the right decisions, bringing us peace no matter the outcome.... and they can lift us up and carry us through grief.

It is not because you made a bad medical decision or did not fight hard enough for your child. Your cherub had a whole medical team fighting for them along side of you. You made all the best decisions that you could for your cherub. You were and are the best parent to your cherub that you can be. There are 1000's of healthy children who do not have parents who would fight for them.... your cherub was blessed to have you as parents just as you are to have had the opportunity to be a parent to your cherub. If CDH has taught us anything it is that it plays by no rules. Children with no diaphragm and little lung can survive while children with 2 full lungs might not. It has taught us that lung function is not the deciding factor. It has taught us that sometimes the best care in the world is not enough.

It is not because you couldn't offer your cherub the support or resources needed for a special needs child. It is not because you lack patience or skills. We have grieving members who are doctors, nurses... we have parents of survivors who were teenagers themselves. We have grieving members who are amazing, amazing parents and we have parents of survivors who have lost custody of their cherubs. We also have many, many parents of survivors who are amazing and prepared and ready to be wonderful parents to their cherubs. CDH does not care who is ready, who is able, who is best qualified to care for a cherub and who is not.

It is not because you didn't love your cherub enough. If love could spare babies from CDH, this horrible birth defect would not claim one more life. CDH shows no favoritism. It shows no prejudice. It truly is the luck of the draw who survives and who does not. It does not mean you are better or worse than anyone else. It is not fair. Your cherub did not chose to leave you. But they did chose to spend their time here with you. They did not choose wings over feet. They did not chose Heaven over staying here with you.

There is no good answer to why your cherub did not survive... but there are hundreds of answers as to why he or she should have. At CHERUBS, we all know the pain of CDH. The pain and grief of having a child born with a severe birth defect... some grieve over the loss of a healthy child as they struggle to deal with CDH in their surviving cherub and the loss of a dream. Some grieve a never-ending grief of losing the dream and the life of their cherub. But we all grieve, we all have questions that we may never get answers to.

We have all lost a lot. So many parents are grieving the losses of their babies right now. The CDH community has lost so many babies that we have all prayed for, loved from afar. But we have gained a lot too. So have the family members, friends, and even strangers. Each cherub has left their mark on this world and left it a little better than they found it. That is more than most people do in lifetimes that last decades. We should all should follow such beautiful examples as these children have left for us....

Congenital Diaphragmatic Hernia Research Bill

2010-05-07T07:56:00.000-07:00

Posted on CHERUBS blog, reposting here and hoping my family and friends will write in memory of Shane!

CHERUBS is very proud to present our Congenital Diaphragmatic Hernia Research Bill to be presented to Congress to help promote more federal funding for CDH research. With the help of our members, other CDH organizations and the public, we are determined to promote CDH Research to help save the lives of babies born with Congenital Diaphragmatic Hernia.

We are currently searching for bill sponsorship. If you would like to contact your Congressman or Senator and ask for their support of this bill, please visit http://www.cdhbills.org for more information.

-----------------------------------

In request of a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research

Submitted by CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support
3650 Rogers Rd. #290
Wake Forest, NC 27587
919-610-0129
research@cdhsupport.org

A BILL

To amend the Public Health Service Act to provide for the national collection of data on babies born with Congenital Diaphragmatic Hernia in a standardized manner, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the ‘CDH Research Act of 2010’.

SECTION 2. FINDINGS.

The Congress finds as follows:

(1) Congenital Diaphragmatic Hernia is a birth defect.

(2) Congenital Diaphragmatic Hernia has a rate of occurrence of 1 in every 2500 babies.

(3) Congenital Diaphragmatic Hernia affects approximately 1600 babies each year in the United States.

(4) Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth.

(5) The majority of Congenital Diaphragmatic Hernia patients have underdeveloped lungs and/or poor pulmonary function.

(6) Congenital Diaphragmatic Hernia patients often endure long-term complications such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders and developmental delays.

(7) Congenital Diaphragmatic Hernia survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition and hypoxic brain injury.

(8) Congenital Diaphragmatic Hernia has a survival rate of 50%.

(9) Congenital Diaphragmatic Hernia has affected over 600,000 babies worldwide since the year 2000.

(10) Babies born with Congenital Diaphragmatic Hernia endure extended hospital stays in intensive care with multiple surgeries. Extended hospital stays in some cases have exceeded one year.

(11) Congenital Diaphragmatic Hernia is as common as Spina Bifida and Cystic Fibrosis.

(12) Congenital Diaphragmatic Hernia is diagnosed in utero in only 75% of cases.

(13) Congenital Diaphragmatic Hernia is treated through mechanical ventilation, heart and lung bypass (Extracorporeal Membrane Oxygenation) machines and surgical repair.

(14) Congenital Diaphragmatic Hernia surgical repair is often outgrown thus leading to reherniation and requiring additional surgery.

(15) Congenital Diaphragmatic Hernia does not discriminate based on race, gender, religion, economic status or lack of prenatal care.

(16) The cause of Congenital Diaphragmatic Hernia is unknown.

(17) Congenital Diaphragmatic Hernia takes more lives in the average year in the United States than lightening strikes, tornadoes, hurricanes and floods combined.

(18) The average hospital bill per Congenital Diaphragmatic Hernia patient is $500,000.

(19) The estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000.

(20) Annual Federal support for Congenital Diaphragmatic Hernia research at the National Institutes of Health is currently estimated at less than $5,000,000.

SECTION 3. SENSE OF CONGRESS ON NIH FUNDING FOR CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH.

(1) In General- It is the sense of the Congress that the Director of the National Institutes of Health should increase the allocation of funds and other resources for Congenital Diaphragmatic Hernia research.

(2) Measures To Increase the Research of Congenital Diaphragmatic Hernia shall include—

(a) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of finding commonalities in the search of possible causes and better treatments of Congenital Diaphragmatic Hernia.

(b) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of researching the long term health of survivors of Congenital Diaphragmatic Hernia.

(c) Funds for genetic research into possible causes of Congenital Diaphragmatic Hernia.

(d) Funds for research into more successful surgical and neonatal medical procedures that may increase the survival rate of babies born with Congenital Diaphragmatic Hernia.

SECTION 4. NATIONAL PUBLIC AWARENESS CAMPAIGN.

(1) In General- The Secretary of Health and Human Services shall carry out a national campaign to increase public awareness and knowledge of Congenital Diaphragmatic Hernia

(2) Measures To Increase the Public Awareness of Congenital Diaphragmatic Hernia under the national campaign under subsection (1) shall include—

(a) the dissemination of information on the definition of Congenital Diaphragmatic Hernia;

(b) the dissemination of information on good neonatal care of Congenital Diaphragmatic Hernia patients; and

(c) the promotion of good prenatal care and ultrasound to detect Congenital Diaphragmatic Hernia in utero.

March of Dimes March for Babies Walk, Seeing an old friend and Mother's Day

2010-05-07T07:48:00.000-07:00

Mother's Day weekend.... ugh.   I hate this holiday.   Don't get me wrong, I love my own mom to pieces and she should absolutely be honored on Sunday, as should my mother-in-law and all moms. But for a grieving mom, it's a hard day. It hurts. A lot.   I literally would give my life for a card with Shane's handprints on it or a paper cup full of daisies from him. Or now that he'd be 17, I guess a regular card and a hug from him would be more than enough. But he's not here.   I don't get any more Mother's Days with him.   I know I should be grateful for the ones I did have... but I'm greedy. I want my little boy here.   I do have good memories of Mother's Day mornings with my ex-husband making me breakfast in bed and Shane toddling into the bedroom behind him and leaning on the bed. Cards from him, gifts from him (ok so his dad picked them out, but it still counts).   My first Mother's Day gift of a Precious Moments figurine still means the world to me as it sits on a shelf in my office.   I am blessed, I know that. I am grateful.   But I just really miss Shane right now. That doesn't mean that I'm not completely in love with my other two sons. I am, and I am so so blessed to have them in my life and to have the opportunity to be a step-mom.

It's been crazy busy around here.   CHERUBS is going non-stop with some pretty amazing things going on.   REALLY amazing stuff going on!   And I'm working on my regular job up to 50 hours a week right now.   Plus the boys on 2 baseball teams. I am literally running on Mountain Dew lately.   But it's all GOOD stuff! :)

2 weeks ago my hubby, boys and I participated in the March for Babies.   We walked in memory of Shane and in honor of B (Craniosynostois and Preemie) and G (Preemie).    It's rare that I get to do something for all 3 of my boys at once!!!!   Love all 4 of my guys!!! :)    B even came in 3rd place in the race and G in 4th place!

One of my friends pointed out that Shane's photo (on my shirt) in this photo was "Shane between his 2 brothers". Yeah, that had the waterworks starting! LOL

I got to meet Erin finally too! She walked in the march with us. She lost Zoe not too long ago to CDH too. Erin and I have become good friends and I think the world of her and Zoe holds a piece of my heart too. I get to hang out with Erin some more next week and am really looking forward to it!

And a few weeks ago I got to spend the weekend with one of my BFF's (yes, I said BFF!), Brenda. That's here in the jeans below. She's annoyingly gorgeous. ;) Brenda and I have been friends for 15 years and she's more like a sister than a friend to me. Through it all... having Shane, losing Shane, divorce, CHERUBS stuff, losing Debra, miscarriages, etc.... she's been there. Brenda lost 2 babies to CDH. I met her a year after she lost Amanda and while she was still pregnant with Nicholas. She's the 3rd member of CHERUBS. After 1 phone call, we became friends for love. Love you very much, Bren! I never would've made it through the last 11 years without you!

Yes, a lot of my friends have dealt with CDH too... that's how we became friends. What better friends than those who understand because they've walked in the same shoes? And so many knew Shane.... not many people really did when we were so isolated for so many years because of his medical issues. So those that knew him and loved him too.... how can I not feel like they are my family?

Happy Mother's Day to ALL moms this Sunday!!!!! Whether your children are here or they have wings. Motherhood doesn't end, ever. Being a mom is the most wonderful job in the world. Being a grieving mom (or dad) is the hardest job in the world. But we're still moms.

Easter

2010-03-30T10:13:00.000-07:00

Easter is a very special day to me. I'm a Christian and I am so eternally grateful to God for giving his Son to us and to Jesus for dying for us to erase our sins.

In a way, it helps to know that Mary understands what it's like to grieve for a son. Even God wasn't spared from the worst tragedy a human can go through.... watching your child die.

Thank you, Jesus, for giving me the chance to see my son again some day! For molding me like clay to be a better person and to continue to teach me and love me every day.

And thank you, God, for 6 and a half years with my beautiful little boy and having 6 opportunities to share Easter with him. That was such a gift, we are so blessed. Thank you.

1993 at Duke

And thank you Lord for my new family, for an incredibly supportive husband and 2 beautiful sons. This is actually my first Easter with B & G. This is only the second year we've been married and last year they were at their mom's. So I'm VERY excited to be able to do the mom thing this year at Easter as it's the first time 10 years I've been able to that.

Thank you God for all 3 of my wonderful, beautiful, amazing sons.

New CDH Song Video!

2010-03-30T09:21:00.000-07:00

Shane is in this... it's a video featuring over 700 CDH patients and it was created to raise Congenital Diaphragmatic Hernia Awareness. The song is by The Jammies and iTunes proceeds are being donated to CHERUBS. It was written by a CDH dad is just beautiful! Get your tissues ready... you'll need them watching this!!! :)

Feel free to repost this video anywhere to raise awareness!!!

Making My Son Proud & Doing Right By CDH Babies Everywhere

2010-03-30T09:17:00.000-07:00

My son's blog isn't a place for drama but this is too big to not share....

On Friday, our trademark lawyers forwarded us the official letter sent to the United States Patent & Trademark Office stating that the other party is going to relinquish rights to the phrase "Congenital Diaphragmatic Hernia Awareness" that they tried to trademark.

3 years of drama, over 6000 signatures, lawyers, courts, and getting blasted by a few brainwashed people for daring to stand up to this trademark. Not to mention all the personal attacks on me, my family and my charity and standing up to that. Is over. Finally, it's over!!!!!   We WON the fight against this trademark and never again can 1 woman try to shut down our charity, sue me, attack me or other families by threatening, suing or harrassing with that trademark. After so many years of that... it's such a HUGE relief to have it finally over.   There is still a trademark on "Congenital Diaphragmatic Hernia Awareness Day" and God knows the drama would start up again if we tried to use that phrase... so we don't... we raise awareness every day.

It hasn't been an easy journey at all. But we did it!!!!!    1000's of CDH families have backed us, plus other charities and over 100 researchers in fighting against this trademark.   So many families are celebrating now!!!   CDH Awareness if finally FREE again and not only that, but we have set a precedent that no other cause will ever have to endure what we have!!!

There were moments when I wanted to give up. But I didn't and I am proud of myself for that. Every once in a while life throws tests at you... do you take the easy road and sell out and give up your integrity? Or do you stand your ground and hold on to your compassion and honor and knowing what's right? We held on. We stood our ground. We passed the moral test and did what was right.   Doing the happy dance on that one!!!! :)

This post is written to CELEBRATE and to MOVE ON....

I was made aware of CDH on January 28, 1993... long before someone else felt the need to claim the phrase their "intellectual property". If it would take CDH out of my life and give me my son back, she can have it. I hope someday she finds peace and stops targeting her anger at me and hurting 1000's of others along the way.   I don't even hold any anger toward her... I forgive her. I pray for her. She must be in awful, horrible pain to do all this stuff. As a fellow grieving mom... I understand the pain. Not the lashing out at others, but I do understand the pain... and as a Christian and for my own peace of mind also... I do forgive. And I hope we can move on.

Now hopefully we can all put this behind us and move on and focus on doing good, positive things for the CDH communities and these families.

We did it.... and I know I made my son proud.   That makes my heart swell and makes it all worth it. :)

It's time to move forward...

The Great Human Race - March 27, 2010

2010-03-30T08:41:00.000-07:00

My amazingly supportive hubby and I participated in the Durham "Great Human Race" this weekend, representing CHERUBS and walking in memory of Shane.

What a beautiful day to raise Congenital Diaphragmatic Hernia Awareness! We raised money and had a lot of fun walking with the other families that really mean a lot to me. We talked so much that we lagged behind and Craig and I are officially the LAST people to cross the finish line! LOL Oh well, I never planned on running the 5k. :)

We wore shirts with Shane's ribbon on them. We have a section on our Cafepress shop for parents to order items with the CDH Awareness Ribbon and their child's photo. This is Shane's section -

It has a ton of great stuff on it!

Happy 17th Birthday, Shane!

2010-01-28T18:21:00.000-08:00

As I write this I think about where I was exactly 17 years ago today... in labor and delivery, about to give birth with the hour. And still as naive and innocent to all the bad things that can happen. I don't even remember that girl I used to be before Shane and CDH.

It's been a rough day. I miss him. I'm trying to stay busy on CHERUBS stuff, I'm up to my ears in sites and projects and Congressional bills and tons and tons of really great stuff. But I can't focus. I miss my son.

These are some photos of B & G volunteering in memory of Shane. We're putting together Adopt A Hospital Kits and CDH HOPE Totebags for CHERUBS. This is my office. It's a mess, as usual. But we accomplish a lot and help a lot of CDH families so it's worth it.   Don't I have the best sons in the world? All 3 of them.   I love you B & G and Shane, with all my heart.

A lot has been going on with CHERUBS... all good stuff.   We have had our share of drama the past few years - which I won't post about because this blog is about my son, not drama.   But dealing with the drama... dealing with a few women who would love nothing more than to shut down CHERUBS and punish me for the horrible sin of not wanting their nonsense in our charity... that is about Shane.   Because to me, that's like hurting my son. I started CHERUBS not for my son but I did start it because of him.   Without Shane I never would've heard of CDH.   I've given over 25,000 hours of my life to volunteer in his honor and in his memory.   My heart and soul and all the love I have for my son are wrapped up in this charity.   So I feel like a lioness protecting my son's memory.   I just wish people would leave CHERUBS and him and me alone.

(**** Interjected update - 6:53 pm 1/28/10 - I was writing all this this evening, before this post even went live... this blog page was being stalked and then posted on Facebook by these same women. On his birthday. This is the type of stuff I deal with and it's so wrong.   This is my son's memorial blog for Christ's sake*****).

CHERUBS is a good thing - it has helped 1000's of people (including them).    I know God led me to start this charity, I know my son is proud of me, I know there are babies still here because of the information or support their parents received.   That's all that matters. That's what I answer to God for. That's what life is all about... and sometimes death too.   Taking the worst and making something good out of it. So I continue to run CHERUBS, keep fighting for it, keep fighting CDH... so that someday no more parents have to let balloons go to remember their children instead of watching them open birthday presents.

Shane's been gone 10 years now... I don't miss him any less.   I can still hear him, smell him... as if he was just here.   I feel guilty complaining about how much I miss him when I know how blessed I was to have had him for 6 and a half years.    I don't know if that makes missing him harder or easier.    I just know that I miss him still and my heart is still broken.

After 10 years... people forget.   Friends and family think you've "moved on".   If I have 1 piece of advice for those of you reading this that are trying to help someone through grief...   we ALWAYS miss them.   Birthdays, holidays, angelversaries are HARD. But my CHERUBS family... always remember.   I have had over 100 e-mails, facebook notes, forum private messages and calls today... wishing Shane a Happy Birthday or just to tell me they were thinking of him and me today.    If every CDH parent has that much support - I've done my job well.   What an amazing, amazing group of friends I have.   God bless them for remembering my little boy today.

Not to forget my mom... a saint on earth and grieving mother herself. She never forgets her grandson, ever. She understands. I can call her and cry and not say a word and she understands.   She's there if I need to talk, if I hear need to hear someone talk about my son, if I need a hug... I love my Mommy.

Craig let balloons go with me today (thank you, honey). We were planning on going to VA to the cemetary this weekend but the weather is not cooperating.   My parents are expecting 8 inches of snow, we're expecting a few inches of snow and ice here in NC.   I'm a little upset that we can't go... I treasure my alone time at the cemetary with Shane. Being almost 3 hours away, I don't get to visit him often.    And I was looking forward to getting that "family photo" with all 3 of my boys too.   But you know the old saying... we make plans and God laughs.

Shane's birthday balloons, flying to the moon. Watching them float away today I wished so badly I could go buy a couple dozen of them, hold them up and fly up to him Mary Poppins style. Just fly away to my son and hand him his birthday balloons. I miss him so much.

This is a graphic I made for CHERUBS a few weeks ago. It represents all the babies lost to Congenital Diaphragmatic Hernia and brings awareness to the cause. Did you know that over 600,000 babies have been born with CDH since 2000? Over 300,000 of them did not survive. My son is a statistic, a victim of CDH. I hate CDH.

Oh Shane, Mommy loves you and misses you so much!!!!!! 17... how could you be 17????? You're still 6 and a half to me.... running your match box cars on the floor, blowing raspberries. Tipping your glasses up on your nose. Playing with your hearing aids. Twirling your Mic-Key button. Laughing. I miss you. Happy Birthday, baby!!!! Dear God, hold my little boy tight today and please let him know how much I love him.

Christmas

2009-12-29T14:36:00.000-08:00

This was the first Christmas my boys have spent in Virginia with my family - and the first time they went to the cemetary. I've been with their dad for almost 3 years but it just never worked out for the boys to go to Virginia with us. It was a good Christmas, we all had fun.

We actually had a white Christmas this year.

I wish I had gotten a family photo of all of us together at the cemetary. Yes, I know that sounds morbid to some people - but it's all I have.

We buy toy trucks to put at the cometary. It's still really hard every year. Buying toys for the cemetary instead of toys for him. I can't believe how much harder has gotten since I got married and now have B&G. I thought it would be easier - now being able to buy presents and celebrate Christmas with my 2 new sons.... but it's harder. Shane is still missing. He's my son and my family and he should be here with us for Christmas and every other day.

Merry Christmas, Shane... I know the celebration you had up there is so much better than the ones we have down here but the selfish part of me still wishes you were here. I love you.

Sesame Street Basket for Auction for CHERUBS

2009-11-05T12:23:00.000-08:00

As everyone knows, Shane was OBSESSED with Sesame Street.

http://www.shane-torrence.com
http://cherubshane.blogspot.com/

I'm working on a Sesame Street basket to auction off for CHERUBS in time for the holidays. If anyone would like to add something (Sesame Street related) to his basket, let me know! :)

You can donate to the basket by mailing items to:

CHERUBS
c/o Shane Torrence basket
3650 Rogers Rd #290
Wake Forest, NC 27587

Shane's Babies in the Sky Graphic

2009-09-23T08:22:00.000-07:00

A huge, huge thank you to Maxton's mom, Ashley, for creating these graphics over at Babies in the Sky. She's done a lot of these for CDH parents and it's so special and sweet.

Ashley, thank you so, so much for including Shane. It truly means a lot to me!

Shane's 10th Angelversary

2009-09-23T08:05:00.000-07:00

Shane would be 16 now... a Jr in High School. Getting ready for homecoming, begging to use the car, an after school job and playing on a baseball team. If life was fair.

Instead, here I am wish some family at the cemetery on the 10th anniversary of his death.

We do this every year on his birthday and anniversary. We, as in me, my mom and some of my nieces and nephews. Now C too. B & G are in school - we don't take them out of school in NC to go to VA with us on these days. I suppose when one of the days land on a weekend they'll go with us too.

We let balloons go - 10 - 1 for each year. 1 Sesame Street balloon and 9 yellow balloons. The weather so beautiful.... so much like it was the day of the funeral (after the rain stopped). Just enough wind to pick up the balloons and take them so high and the sky so clear we could watch and watch and watch them float. And they always seem to float together. It reminds me of what it must be like in heaven with all the cherubs flying around together. It was very peaceful to watch the balloons.

Thank you to my amazing hubby, C, who rearranged a family obligation to be there for me so I wouldnt' have to drive the almost 3 hours each way by myself (driving is so hard to do when you're crying). It helps so much to know I'm not alone and he's there with me. He's such a great husband to me and father to all 3 of our boys. I love him so very, very much.

And thanks to my incredibly MIL & FIL for picking up the boys from school for us. I am so, so blessed!

Thanks also to Jo Ann for always providing the helium for us for free every year at her floral shop - and the great hugs that go along with it. She's an angel. A member of my old VA church (when I lived there before Shane was born), a good, good Christian woman. She provided the 100 balloons for Shane's funeral. She's all always hold a special place in my heart for caring about us for all these years.

And to all of our friends and the members of CHERUBS for the over 100 e-mails, PMs, FB posts, calls, and cards..... thank you for remembering my son!!!!! I love you all dearly!

My Sons

2009-09-11T05:02:00.000-07:00

Waiting for Craig to get home from dropping the boys off to school this morning so we can head to the cemetery... trying to get a few things done. It's always mass chaos in the morning in the big rush to get them up and fed and out the door to school without forgetting homework or lunches. There's no time for chit-chat.

But my sons remembered.....

G texts me that he's thinking of me and Shane and he loves us both.

Then B text me that he's thinking of Shane and me and he loves us both.

They never even got to meet Shane but they have accepted him as their big brother in heaven.

I am the luckiest mom in the world to have 3 such amazing, amazing sons.

I love you B & G and Shane, with all my heart.

9/11

2009-09-11T04:57:00.000-07:00

9/11... when I tell people my son died on 9/11 they naturally assume it was 9/11/01 in the terror attacks. I have to explain CDH and tell them he died in 1999. Then usually about half of them ask if I'm sad that Shane shares his angel day with such a horrible event in our history. My answer is always no. I'm proud that my little hero shares a day with 1000's of other heroes. All people whose lives have affected the lives of others. And in a way, I mourn with the world today and the world mourns with me... shared grief for different reasons. Other mothers crying for their lost sons too. I wish none of us were grieving.

And I pray today for the families who lost loved ones and those who were hurt during 9/11. I can remember the day in detail. My ex-husband had just walked out weeks before, I was alone and devastated already. And then the 1st plane hit. The the 2nd and then the Pentagon, where a dear friend was working inside. She survived but her health was hit hard that day. She is a hero too. I'm thinking of you today, Judi.

10 years ago

2009-09-10T15:57:00.000-07:00

At this very moment 10 years ago you were sitting in your bean bag chair watching Sesame Street for the 10th time that day.

At this very moment 10 years ago I was working on CHERUBS stuff... what I'm still doing this evening now.

At this very moment 10 years ago you were hooked up to your feeding... an IV bag on gravity pull filled with formula that went to your Mic-Key button.

At this very moment 10 years ago you were holding your stuffed doll "baby" and making the kissy faces you made when you were full or tired.

At this very moment 10 years ago you looked up at me and smiled and my heart melted.

At this very moment 10 years ago I was still too innocent and naive to know how easy a life slips away. How no one is "chosen" to not be struck by tragedy. How sometimes miracles don't last forever. How death does mean losing someone for the rest of your life.... I had no concept of what that meant.

I do now.

I cannot believe you will be gone 10 years ago tomorrow. My life has never and will never be the same or as good as it would be with you here. A huge part of my heart will always be with you and I accept that now. But I still wish for you... I still wish it was all a bad dream and I'll wake up and you'll be beside me. My little boy. You were supposed to bury me. Not the other way around. Not how you left. Not when you had barely begun to live.

I miss you my son. There is not a single day that I don't miss you or think of you or want to hold you again. You were and always will be the greatest little boy a mom could ask for. Thank you for 6 and a half years of being loved by you and being your mommy.

I love you, Shane... always.

Congenital Diaphragmatic Hernia on Facebook

2009-09-01T06:35:00.000-07:00

There's a contest going on on Facebook right now.

http://apps.facebook.com/voteforacause/

The prize is a $50,000 grant for FB marketing - that equals up to over 14,000,000 Facebook ads raising CDH awareness.

There are no words to describe how badly CDH awareness is needed or what winning this contest would mean to the CDH community and CDH research.

CHERUBS is in 2nd place... a very, very close 2nd place. You can vote daily until the 20th.

If you have a minute, please vote in memory of Shane and for all the cherubs.

10 years

2009-08-21T16:58:00.001-07:00

In a little over 2 weeks, Shane would be gone for 10 years. 10 years. A whole decade.

It literally feels like yesterday I held him. Felt his little arms around my neck. Watched him adjust his glasses and baseball call. Wiped his tummy from a Mic-Key button leak after hooking up gravity formula feedings from an IV bag. Listened to Sesame Street playing on the television all day. Tried to convince him to swallow just one bite of apple sauce. I can still hear him laughing. I can hear his little footsteps on the floor.

It feels like he was just here he is so deep in my heart. He always will be. I miss my son.

I'm not ready for the 10 year mark.

At all.

Shane's Video

2009-08-06T07:12:00.000-07:00

This is Shane.... in all his silly glory.... we are blessed with a lot of video of him and once I figure out how to convert it all from VHS better, I plan to make to put together a lot more videos.

Working on this was HARD! Some I hadn't seen since he died... but so worth it. I kept his memory so close to my heart for so long... for fear it would hurt too much to talk too much about him. For fear others would judge since he was 6 and a half when he died. For fear that I'd fall down into grief again and never get back up. Well, I was right on 2 accounts... in the past year since I did this video and really talked about Shane more and focus a bit more on him... it has hurt and been hard to do, I have been (wrongly) judged... BUT I didn't fall down into grief again. And guess what? It feels GOOD to talk about him and share his life with others! Sharing him with C and the boys, sharing more stories at CHERUBS, doing more things in his memory..... feels good. It makes me feel closer to him. I should not have been afraid all those years... but then, I survived those years too so I'm not going to be hard on myself for keeping Shane close to my heart.

A lot more videos to come in the future... when I have the time and Kleenex to work on them....

Please Sign for Shane

2009-08-06T07:08:00.000-07:00

I've been annoying the CDH community for months about getting this petition signed - and God bless them, we have over 6400 signatures!

I won't post about all the details or the negativity here on my son's blog but I am asking... please take a minute to sign. CDH families and awareness should be protected from corporate profiting off of the birth defect our children suffered from - and some died from. It's extremely important to stop this trademark.

http://www.ipetitions.com/petition/cdhawareness/index.html

http://www.ipetitions.com/petition/cdhawareness/index.html

Scrapbooking

2009-08-04T09:09:00.000-07:00

I've been working on Shane's scrapbooks for 10 years now. They are no where near done. I haven't had much time at all to work on them in the past 5 years but now, I'm trying to work on them + scrapbooks for B & G as well.

I took the weekend off of work and pulled out all the photos. Part of me feels so guilty for having so many photos when so many other grieving parents don't. And here they are stuck in boxes. Yeah, I have a lot of guilt about that but then when he was alive I felt guilty for having him then too. I was raised Catholic - guilt is built-in I think. So, with this all this guilt laid upon me to do something with these photos, I set off to organize them.

I saw a great idea on television for people who are overwhelmed with scrapbooking tasks (that would be ME!!!!!!!). You take a sheet cover for each event; birthday, holiday, vacation, whatever... and you seperate the photos for them and put them the sheet cover for that event. It works as a pocket to hold your photos, stickers, template ideas, etc for each event. So when you have time to scrapbook, you just grab a pocket (aka sheet cover) and get to work. If you feel more organized, you can be more productive - that is so true for me. So that's what I did all weekend. ALL weekend. And it's still not done. Because I started on Shane's and then went to all my photos for the past 10 years since he died - and they are a lot because I LOVE taking photos! Then I went through C's (hubby) box of photos and forced him to tell me what each one was so I could organize them. So now I have pockets for all of Shane's photos, my photos, C's photos and our albums together for the boys.

I even have pockets of C's wedding with the ex-wife because hey, that's part of his history and part of the boys... gotta include it all. Even though C thinks I'm strange for including that. But B & G didn't just magically appear when I came into their lives... they have another mom and dad and little sister, they have another step-mom (yes, I'm wife #3 - third time is a charm!). So their books should not be about what *I* like or want to see, it should be about their lives! It's about *them*. I am so excited to be doing books for all 3 of my boys. You all have no idea how happy stickers and photos can make a mom. :)

But going through Shane's photos can be hard. So many memories... I am so grateful for them, for every second. But they can haunt me too. They make me miss him even more, if that's even possible. Some days I am ok with looking at them, other days it still hurts all these years later. It took me 2 years after he died to look at his photos, to go through his things. He was my world for 6 and a half years. He's still a huge part of my heart and always will be. I'll always miss him and I'm ok with that now. I'm just so, so thankful that I had him and got to be his mom.

But his photos are what pushed me to start this blog. I want B & G to get to know him through me and through his photos and this blog. Even though they never met - they are brothers. It's bittersweet that they never met.... they never got to know each other... but then B & G are spared from grief and I am grateful for that.

So the scrapbooking journey begins.... I will probably post photos here of the pages and stories to go with them. I might post weekly or every 6 months. I have a very busy life so this blog is not on the top of my life of priorities. But when I have a quiet weekend here and there or an evening to myself to pull out the glue sticks and paper slicer... I'll post. To be honest, I don't think I want to finish Shane's scrapbook.... it will seem so final..... so this could take a long, long, long time.

And for all you scrapbookers out here... help a mom out please.... I need some templates for Sesame Street, skateboarding, hospitalizations, cherubs. And some more ideas for swimming / lake / beach.... how many beachball pages can one woman do?

Shane, Brandon and Logan

2009-08-04T08:52:00.001-07:00

Shane, Brandon and Logan
1999

I went to CHERUBS conference 2 weeks ago and it was WONDERFUL!!!! :) I met a lot of friends, saw families that knew Shane and saw how much one of them has grown... wow, has Brandon grown! And Logan too... though I didn't get to see him this year, I did get to see them last year. Shane would be 16 now. Brandon and Logan are 13 now. You can see in the photo above how little Shane was for his age at 3 years older than them. And now... Shane would be driving and a Jr in High School. I can't imagine that, he will always be 6 and a half to me. But Brandon and Logan.... teenagers! With facial hair (haha)!!!! Where did the time go?????

Some people might think it would be hard to watch Shane's 2 buddies grow and get older and wish he was here too... but watching Brandon and Logan grow means so much to me. They give me hope. They show me why we should fight against the birth defect that all three of these boys fought. They are such amazing boys and good kids. I am so thankful to still be a part of their lives. And for selfish reasons too... I like to think Shane is watching over them and so I feel closer to him when I am with them. So to Brandon and Logan and to their moms and dads.... thank you. Thank you for not running when Shane died, even though I know it was hard for you to watch my grief and I know it was hard to be constantly reminded of what you could lose too. Thank you for being amazing friends all these years and for allowing me to watch my son's friends grow into such great young men. I love you all, very much!

Logan
2008

Me & Brandon
CHERUBS conference, 2009

Remembering Shane

2009-08-04T08:47:00.000-07:00

I'm going to use this blog to post ways that we remember Shane. Events we hold in his memory, events I attend and talk about him, etc. Not everything I do while I volunteer for CHERUBS... but stuff I do just for my son.

One of the awareness things CHERUBS is starting to do is naming streets CDH Awareness. Then parents put up plaques about CDH and their children. Or they can participate in the "Adopt A Highway" program and raise awareness that way. What a great way to raise awareness - having a permenent sign where everyone can see it, every day.

Sooooo..... I've been on the search for a place to name a street here in Raleigh. I'm looking for a developer who wants the exposure of a ribbon cutting ceremony and wants to help the CDH community by raising awareness. I really want to do this in memory of Shane here in Raleigh. Because he LOVED Sesame Street, having a street named for awareness would mean so much.

That being said, any Raleigh or Durham land developers interested in helping a good cause? :)

CHERUBS Adopt A Hospital CDH Program - Duke University Medical Center adopted in memory of Shane Torrence

2009-08-04T08:46:00.000-07:00

Shane Torrence

(1/28/93-9/11/99)
Left-Sided Congenital Diaphragmatic Hernia

The family of Shane Torrence has donated funds as part of our Adopt A Hospital program to send CDH materials to childrens' hospitals who treat babies born with Congenital Diaphragmatic Hernia. Shane's family has chosen to adopt Duke University Medical Center, where Shane spent the first 10 months of his life. Donated were; CDH information poster, "Stories of Cherubs" Vols I & II, Congenital Diaphragmatic Hernia Awareness Ribbon pins, Parent Reference Guides, Newsletters and brochures. This is enough CDH information for 100 families.

Shane's Story

2009-08-04T08:45:00.001-07:00

This is our family's story- Shane's story. I am a firm believer of the "telling it like it is" ideology, so this story is very personal, this is my life, my son’s journal.......

I was 18 when my son was conceived, in May of 1992. I was still a baby myself though you couldn't convince me of that at the time. My husband, Jeremy, and I were newlyweds. We were high school sweethearts and were married 2 months after graduation in the small church that his father pastored. My family had moved to our small town in Virginia when I was 14, after my father retired from the Navy. Jeremy arrived here a year earlier when his father was called to preach at the local Methodist church. Jeremy was working at a carpet mill and I was working at a grocery store. We were thrilled when the home pregnancy test that I took came out positive. I had miscarried right after we were married and again, 5 months earlier, on Christmas Eve, and we wanted this baby more than anything. I immediately quit my job; I was afraid standing on my feet all day would cause another miscarriage. Our families were less than thrilled about our pregnancy, though they never said so. But we were young and determined to make a family of our own. I quite smoking and started prenatal vitamins. I was so set on having a healthy baby that I didn't even stand near the microwave when it was on. Life looked promising and we were madly in love with each other and the baby growing inside me.

I went to my first prenatal visit to an Ob-Gyn clinic affiliated with the closest hospital, 30 miles away. Everything looked good, until 3 weeks later when I started to bleed. I was terrified. I was only 7 weeks along and I knew the chance of another miscarriage was possible. "I can't go through this again", I thought to myself as I cried while Jeremy phoned my doctor. The doctor told us that there was nothing they could do, nature would just have to run it's course and that I should come to my next appointment, the following week. The bleeding continued for 2 days. We hadn't told our families that I was pregnant the first 2 times we miscarried. We were planning to tell them after midnight mass (I was raised Catholic). This time, I knew if I miscarried it would be a public loss. The days of waiting until my scheduled doctor's appointment were hell. But hell had only began.

During that visit to the clinic, the doctor performed an ultrasound. The baby was alive! He was moving, he even seemed to wave! Words can't describe the relief I felt. It was after that doctor's visit that my nightmares began. They plagued me every night for the rest of my pregnancy. They were always the same; the baby was born, a boy, laid upon my chest, and then when the cord was cut he turned blue. The doctor's took him away and I was left screaming "Where is my baby? What's wrong with my baby?" over and over until I woke up on my tear-stained pillow. It wasn't long before they invaded my daydreams also.

On August 26, during my third appointment, I told my doctors that I thought something was wrong but they all said I was a nervous "first-timer". I was diagnosed with a urinary tract infection, given a prescription, and sent home. A week later, I was back at the doctors office complaining of stomach pains. I was given more antibiotics and sent home. On September 10th, the pains returned. I went back to the clinic and was sent home, again.

Now four months along, we started to sing to the baby and reading it stories. I was very thin and started to show early and could feel every movement that they baby was making. Nighttime soon became "baby time". We began our ritual of family prayer, which included asking God for this baby to be healthy. Now September, Jeremy's mill was shutting down. It was the only mill in our small town and finding a job proved impossible. With the recession and unemployment rates soaring, jobs were as valuable as diamonds. Soon, our prayers included asking God to help Jeremy find a new job and to help us get along. The financial pressures, Jeremy's problems dealing with all this new responsibility, and my hormones were causing our first fights.

The next months went by fast as we tried to prepare for the holidays. Jeremy found odd jobs to sustain us until a permanent one could be found. He was not eligible for unemployment benefits and we were overdue on every bill. I tried substitute teaching but it didn't work out. We had to apply for Medicaid.. It was a terrible blow to our pride. It was a secret we tried to keep from our family and friends. We were ashamed to be on welfare but we had no other choice. This was not our dream for our baby's future.

By October 22nd, I weighed 136 lbs, up 26 lbs from my pre-pregnancy rate. The baby started a case of hiccups that lasted on and off for the next 3 months. Jeremy found work with a friend that owned a construction business but it seemed to rain constantly and work was often canceled. Halloween, my nineteenth birthday, came. I made my 18-month-old nephew a clown costume out of one of his sleepers and longed for the day when I could make a costume for my own baby. This day proved to be a distraction from our financial problems. Our families tried to help us out by loaning us money and it tore at our hearts every time it was offered. Our family, friends, and church were such wonderful support. We will always be grateful. Jeremy went hunting when he couldn't work but his luck wasn't any good when it came to hunting venison. With food running out, and all of our money going to pay bills, we started to worry about what to fix for meals. Then one night a strange howl came out from the back yard; it was a lost hunting dog owned by a neighbor a couple of miles down the road. We called the number on the dog's I.D. tag and his owner came to retrieve him. He was grateful to get his dog back and brought us venison. It was an answer to our prayers. That man will never know how much that meant to us.

Thanksgiving came and went with family celebrations. Maybe it was the pregnancy or maybe it was all the turkey I ate, but I was up to 150 lbs; the extra 40 pounds seemed to be all in my stomach. That Christmas we made every present that we gave. Jeremy was still making rounds to all the factories in a 50 mile radius every week, searching for a steady job. I stayed busy cross-stitching gifts for my mom and sisters and helping Jeremy with gifts he made from wood. During the second week of December, I went for another ultrasound. All of my doctors visits had been uneventful but my nightmares continued and after weeks of begging for another ultrasound, the doctors gave in. My mother and Jeremy were there with me. There was only us, the doctor, and a nurse in that small room, no trained ultrasound technician. We were in that room for over an hour and the doctor told me that everything looked normal. I was not given a picture of the ultrasound, though it is common for expectant mothers these days to be given at least three pictures. At my next appointment I had to ask for a picture. It was quite an attractive view of my baby's backside! Memories of the previous Christmas haunted me but this year I longed to share with my baby the story of Jesus, the trip to midnight mass, and the legend of Santa Clause.

During the last month of my pregnancy, I worked on the nursery constantly. I painted Precious Moments angels for the wall, sewed curtains and blankets, and sterilized all the baby clothes and equipment I collected from showers, yard sales, and hand-me-downs from my nephew, Clint. I was up to 160 lbs with only a little extra weight in my face and breasts; the rest was in my stomach. I looked like a snake that had swallowed a watermelon. On January 18th I came down with what I and the doctors thought was the flu. I started to dehydrate and Braxton-Hicks contractions began. When my fever reached 102F, I went to the emergency room. I was hooked up to IVs and stayed overnight. The next day I was released and I started to bleed. I went into false labor, went to the hospital, and was sent home though I still continued to bleed. Two days later, I almost fainted at home. I had a hard time keeping my balance and even fell in the shower. I was scared to death, but finally, after 3 days, the bleeding stopped. The baby barely kicked and I worried constantly. With less than a month to my due date of February 7, 1993, my nightmares became more frequent and casted a dark shadow over the end of my pregnancy.

At 6:00 a.m., on January 28, 1993, my water broke. The bed was soaked and after assuring Jeremy that it definitely was my water breaking, we prepared to go to the hospital. Jeremy called the doctor while I took a bath. The contractions hadn't started yet and there was no way I was going to get on a delivery table until I shaved my legs first! We were at the hospital by 7:30 and I was leaking amniotic fluid constantly. The car seat was soaked, the hospital stretcher was soaked, and the delivery table was soaked. I had watched films on giving birth and I didn't remember all this fluid in the films! Our families arrived by 9:00 a.m. and filled the waiting room. We are both blessed to come from large, healthy families. Soon my contractions became noticeable. From 9:00 a.m. to 4:00 p.m., they remained bearable and I only dilated 1 cm. With every contraction, now 5 minutes apart, my nightmare invaded my mind. I only mentioned this nightmare to Jeremy once or twice and to my doctors; I didn't want to worry our families over something that seemed like a one-in-a-million chance. I was never more wrong. At 6:00 I started to beg for pain killers. I was given 2 shots of Demerol and at 6:30, I had an epidural. I was fully dilated and started to push. The baby's head seemed to be stuck in the birth canal. The doctor performed an episiotomy and at 6:55 p.m. my son made his entrance into the world with the help of forceps. With only the doctor, a nurse, an anesthesiologist, and Jeremy in the room, the baby was laid on my chest as the doctor cut the umbilical cord. Then my nightmare came true.

The baby turned blue as he tried to cry, with only little whimpers coming out of his tiny mouth. Jeremy had just left the room to announce to the world that he had a son. The nurse grabbed the baby and took him to the other side of the room, which was equipped with medical paraphernalia. The doctor delivered the placenta while I repeatedly asked; "Is he OK?". The baby was taken out of the room and over the hospital intercom blared "Code red, Newborn Nursery". I was in a state of shock, my nightmare was really coming true. For a while, I could only lay there, left alone on the delivery table, absorbing this fact. Jeremy came in and we both knew that the intercom operator was talking about our son. Jeremy went to tell the families but when he entered the waiting room, he broke down crying. I began screaming "Where's my baby? What's wrong with my baby?". My doctor came in to stitch up the episiotomy and the tearing that was caused by delivering the baby by forceps. He wouldn't answer my pleas, only did his job and kept quiet while listening to my screams and threats. I was starting to yell that I was going to get up off that delivery table and hunt my baby down when a pediatrician came into the room, an hour and a half after my son was born. In such a small hospital the staff was little and the pediatrician and respiratory therapist had to come from home. He was cold as he said, with no expression on his face, "By x-ray we can tell your son has many problems. He was born with multiple, severe birth defects that affect his lungs, heart, and reproductive system. He has a Congenital Diaphragmatic Hernia, which means there is a hole in his diaphragm and organs in his chest cavity preventing him from breathing. He will need surgery to correct all his problems. We have sent for a helicopter to transport him to a trauma center. Tell him good-bye because this will probably be the last time that you will see your son alive." Then he left me alone on that table. Jeremy came in and I told him what the doctor had said. He went to tell our families and his father, whom we all affectionately call "Pop", came in. It was the only time I had ever seen this big, strong man cry. He was a preacher, and being raised Catholic I wanted my baby baptized in case anything happened to him. Pop wasn't prepared to do this, materially or emotionally. He prayed with me as I cried.

Jeremy and a nurse helped me off of the table and into a wheelchair. They wheeled me down the hall to a small room that contained an incubator, IV poles, a respirator, monitors, and my son. I was only allowed to see him from the doorway, he looked so tiny at 6 lbs 9 oz. Tubes and wires covered him. He had black hair and looked as if someone had given him a crew cut, but that was how his hair came in. He looked perfect on the outside, but on the inside he was struggling to survive. The nurse said "We're putting you in a single room so you have privacy." I knew the real reason that they were wheeling me to the geriatric ward. Only one other baby had been born and I could have had a room on the maternity ward all to myself but the staff had decided it would have been better to separate me from the other mother so that she wouldn't have to hear my cries and screams if my son, Jeremy "Shane", didn't survive. I wanted to yell that this wasn't fair but I needed to stay focused on Shane.

My sister, Trisha, and her boyfriend at the time took Jeremy home so that he could grab some clothes and take off for the trauma center to be there when Shane arrived. The pediatrician came into my room, surrounded by our family, to tell me that the trauma center he had ordered the helicopter from had called to tell him that their helicopter was broken. He then called the next closest trauma center, in North Carolina, and ordered their helicopter. I asked if I could see Shane before they took him and he told me no. After my family bombarded him with questions, he left. I called my neighbors, who were the dearest landlords we will ever have, to ask them to stop Jeremy and send him back to the hospital. They already knew; small town word of mouth had already started and Shane was only 3 hours old.

The helicopter crew arrived at the same time Jeremy did. I asked them a million questions as I filled out the consent forms. "What are his chances?" "Have you ever seen a baby with his problems?" "Is the weather safe for flying?" They comforted me, assured me, and gave me a chance to tell my son how much I loved him as they wheeled him into my room in his incubator. He was awake! He looked at me with those intense blue eyes that most newborns have. It was as if he was asking me for help. He looked directly at me, out of a room full of people. He knew that I was his mother. I felt my heart breaking. I will never forget that look or how wonderful the helicopter crew was, especially one of the flight nurses, Ed. He was an angel sent to us in our darkest hour to give us the hope that the hospital hadn't. Around midnight, my son was taken away as I listened to the helicopter blades break the silence of that cold night.

That night I couldn't sleep. Jeremy's brother, James, drove him to the trauma center. My mom stayed at the hospital with me. The rest of our families went home to prepare for the long days ahead. I called the hospital P.I.C.U. where Shane was taken to check on him and to give the staff permission to perform procedures. I was young, ignorant, and on pain killers, yet I was in charge of making decisions that would save or end my son's life. I thank God my mom was with me. I started the ritual of pumping my breast milk every 3 hours. I barely had any strength left to operate the manual pump, my arm muscles were weak from pulling up and pushing during labor, but I was determined to do this; to give my son the best nutrition and to do something for him that the medical staff couldn't.

My father came the next morning and picked up my mother and me to go to the trauma center. I left the hospital 18 hours after giving birth, despite protests from my doctors. As I was being wheeled out of the hospital, the other new mom who had delivered that night came to wish me the best and offer her prayers. I don't remember her at all, but I apparently nodded and thanked her; at least that is what I am told happened. After a 2 hour drive, we made our way up to the P.I.C.U.. I could barely walk and sitting was almost impossible. Labor was nothing compared to the bruising and sutures I had from the episiotomy and forceps. But the pain in my heart was worse than any physical pain.

The first time I walked into the P.I.C.U. I was overwhelmed. No one told me what to expect. It was constructed of 2 large rooms with beds lined up against the walls. Sick children were everywhere. Children awake and playing video games, children in comas, children on life support. Among these children was Shane. He looked even smaller than the night before. He had IVs in every limb and the ventilator took every breath for him. He was sedated and paralyzed from the medications. Yet despite all the medical equipment, he was the most beautiful baby I'd ever seen (of course I'm a little prejudiced, like all mothers). The ventilator was giving him 420 breaths a minute to keep his lungs from collapsing and a heart and lung bypass (E.C.M.O.) machine stood beside him as a precaution in the event that his heart and lungs quit.

The surgeon came and introduced himself as Dr. Caffy* and scheduled surgery for that Monday, 2 days later. I had no idea of what he was explaining to me, I just agreed to everything and put my son's life into his and God's hands.

We were lucky enough to get a room at the local Ronald McDonald House. That night we settled in and Jeremy told me that his brother, James, had found out that Jeremy's application for a job at the local lumber yard had been accepted. After four months, Jeremy had a job. It solved some of our money problems but they didn't seem to matter quite so much any more. Our church and other churches who had never met us began to take up collections to help us get by. My faith in humanity was beginning to grow. I prayed harder than I've ever prayed in my life that night. I prayed for God to watch over Shane and most importantly I gave Shane to God, to do his will, whatever that might be.

That Monday, the day of Shane's surgery, while our parents waited in the operating room waiting area, Jeremy took me to the emergency room. I was in so much pain and I hadn't had an internal exam since Shane was born, not even by my doctors before I left the hospital. I was given painkillers and told that I was just bruised. Jeremy ran back and forth from the E.R. to the O.R.. Shane was in surgery for 6 hours. Finally, the surgeon came in. The surgery went well and Shane was given a 50% chance of survival. We were told that if all went well, he could be home in 2 weeks.

The next few weeks left Shane holding his own but not improving as much as we had hoped for. I pumped breast milk regularly, and when I didn't have the strength, Jeremy helped me. When Shane was 2 weeks old, Jeremy went back to Virginia to start his new job and I stayed at the Ronald McDonald House at night and the hospital during the day. My days consisted of eating, sleeping, pumping, and keeping vigil at Shane's bedside. We brought toys and clothes from home for him; including a stuffed Precious Moment’s angel pillow.

When Shane was 3 weeks old, I held him for the first time. A brave nurse, and dear friend, juggled tubes and wires to place Shane in my arms. I held him for over 5 hours. I would have held him forever if I could have, but my breasts were becoming engorged. I wish someone would have warned me about that. Jeremy held Shane for the first time a week later. All of the members of the nursing staff were more than just the people who took care of Shane, they were friends and for a long time, family. Rachel, Shane's primary nurse, immediately "adopted" him. She referred to him as "her baby" and she made sure he got the best care, even if it meant standing up to the doctors to get it.

Shane came down with his first infection at a few weeks old. It was one blood infection after another, and in between, he came down with pneumonia. It seemed he would only get over an infection when another one would start. He was sedated and paralyzed by medication for most of his first 3 months. In total, Shane had over 20 infections (blood, urinary tract, and kidney) and pneumonia 5 times.

It was during this time that I learned 2 of my 3 sisters were pregnant, Christie and Trisha (I also have a baby sister, Debra). I felt betrayed. How could they get pregnant knowing what I was going through? How will I be able to fight off the jealousy when they have healthy babies? They were single moms and I was married, and had done everything to try to insure a healthy pregnancy and baby. It would take me months to forgive them, though I knew I had no justified reason to be angry with them.

When you live this type of life, you become very close with the families of the children you meet. They are the only ones who truly know what you are going through. I prayed for many other children, and the list became longer with each passing day. P.I.C.U.s are like war zones. Children battle for their lives. Parents battle for their children. The medical staff battle disease, armed with medication and knowledge. A lot of these battles are lost. The first child I watched die was a 6-year-old little boy with multiple problems. He died the second day Shane was in the P.I.C.U.. He was in the bed beside Shane's. I tried to ignore it; I couldn't handle it. I had never been this close to death before. A little girl was put in that same bed space hours later. She was born on the same day as Shane, with the same problem as Shane had. Her mother was single and the same age as Jeremy and I. This baby girl fought for 2 weeks. The little girl died. I wanted to comfort her mother but it hit too close to home, I just walked out, went to bathroom and cried. I knew Shane could be next. I will always regret not going up to that mother and holding her as she grieved. We have known dozens of children who have died since then and they have each taken a piece of my heart with them.

I met another mom of a child with this birth defect who had a little boy, a month older than Shane, that died at age 2 months. She gave me more strength in her strength than she could ever know. Rhonda was there for me even after Preston died. When another mom lost her little girl from complications after a heart surgery, Rhonda was there, a month after Preston died, to give her comfort and to help guide her through the funeral arrangements. I will never forget the selfless generosity that she gave everyone, even while still grieving for Preston. How can we send a man to the moon but not prevent all this pain and needless death on Earth to innocent, little babies?

At 4 months old, Shane underwent surgery again, a procedure that was not supposed to be needed. By this time, I had spent many hours at the hospital's medical library and was becoming pretty knowledgeable about Shane's condition; to the annoyance of his doctors. I looked at every x-ray and the results of every test. Through my studying, I learned of a procedure that involved repairing the defect with use of muscle from the abdominal wall. I begged Dr. Caffey and his partner, Dr. Olden*, to try this instead of using the Gortex (nylon) patch they intended to use. The Gortex couldn't fight infection and wouldn't grow with Shane, which meant it would have to be replaced as Shane grew. They insisted they had never heard of this and even when I gave them articles taken from medical journals, they refused.

The tension between us was growing thicker everyday. They were surgeons from one of the top 10 hospitals in the country, how dare I even think to question them? I wasn't worried about their egos, only my son's health. Shane was now so unstable that there was no way he could be transported to another hospital, so I reluctantly gave in.

I was having health problems of my own. I developed a large knot between my right breast and my arm. Pumping that breast was excruciatingly painful and while pumping one evening at the House, in our room, I pumped blood. Then I began to have cold chills. Jeremy got more blankets and even laid on top of me, but I couldn't get warm. I was sweating so bad the sheets were drenched. When Jeremy took my temperature, I had a fever of 105F. He took me to the emergency room, where the doctors diagnosed me with severe mastitis (an infection of a milk duct in the breast). My temperature reached 106F before they could hook up IV fluids. My case was so severe, they were calling in medical students to come look at me; I started to feel like a guinea pig. I was dehydrated and they wanted to admit me, but as stubborn as I was, and as sick as Shane was, there was no way I was going to be separated from my son when he needed me so badly. They filled me up with fluids, gave me antibiotics, and released me. I lost my breast milk and I never got to nurse Shane. I felt like I had lost a bond with him that I could never regain.

Weeks later, and still on oxygen and a ventilator, Shane got his trach. By now, the surgeons and I were butting heads constantly. Shane continued to come down with infections and I continued to act like a tigress protecting her cub. I questioned the surgeons' decisions and they questioned mine. They were not used to dealing with a patient's mother for such an extended amount of time. It was during this time that Lance*, a little boy a week younger than Shane, came back to have his 2nd heart surgery. His parents, Jenny* and Ronnie*, had stayed at the House with us during Lance's first surgery visit. After Lance's second surgery, he came down with a staph infection at the same time as Shane. They were side by side in the Unit. Jenny and I spent a lot of hours together and we became good friends. Lance died a few weeks after his surgery. Writing this now brings tears to my eyes. I never thought I could hurt so much for another person as I did for Jenny. I never want to go to another baby's funeral as long as I live. Rhonda was at Lance's funeral; she was now pregnant with her third child. Shane recovered from his infection and by now, I felt as if we were waiting in line to be the next to lose our child.

Soon after, Shane came down with pneumonia. The oxygen level his blood had went so low that it caused brain damage. He was now blind, deaf, and what some people would call a "vegetable". Jeremy and I wouldn't give up until Shane did, and he wouldn't either. We argued with the surgeons, who now wanted a D.N.R. (Do Not Resuscitate) order. We refused and had to go up in front of the ethics committee. The meeting was full of accusations, from both sides, and I spoke through choked tears. When it was over, the doctors did not get their D.N.R. order and care for Shane was continued. Rachel was beside us the whole way.

The next few months went by slowly. Shane was seen by neurologists who said that he would never get any better, but we didn't listen. We knew God had a special plan for Shane. Shane started to interact with people and show discomfort at about 7-months-old. His trach site was starting to erode and Dr. Caffy changed the brand of trach. His trach site grew worse. I went to the medical library and researched to find different brands. When I learned that trachs could be made to order and specified to fit the trach site so that the erosion would be minimal, I asked the surgeon to change the trach brand. He told me that there were only two types of trachs in the world and that we had tried them both. I knew he was lying to me. I suppose I had become an annoyance, but Shane's site was so bad that it threatened to open the main artery in his throat. When I presented Dr. Olden with illustrations from medical journals, along with manufacturers phone numbers and addresses, the surgeons avoided me for weeks. I had to leave notes for them on Shane's bed because they would only make rounds before visiting hours and all my questions were answered by other doctors. I wasn't on a quest to be right, I simply wanted to stop the pain that that type of trach must have been causing Shane. After about a month, the surgeons got tired of arguing and changed the trach brand. Shane's trach site immediately got better and healed, though he will always have a noticeable scar there.

The nurses and respiratory staff were wonderful, I went out to eat with a few of them, and Jeremy and I went out with them and double dated a few times. They were, and are, friends in every sense of the word. They took the time to try to cheer us up or distract us from Shane's problems. They bought Shane clothes and toys and spent hours playing with him, even tough he couldn't respond very well, if at all. They went beyond the call of duty, and we will always be grateful. The flight nurse, Ed, that bought Shane to the trauma center, checked in on him often, bought him a stuffed animal and a flight pin, and even gave us a tour of the helicopter. Rachel became one of Shane's three godmothers, along with my sister, Christie, and my sister-in-law, Teresa.
At eight-months-old, Shane was still on the vent but stable. We started to make plans to take him home. The Ronald McDonald House closed down for renovations and I was taken in by other families for 2 months. They let me into their homes, took me back and forth to the hospital, and treated me like family, even though they had sick children of their own. I contacted home health agencies in Virginia, but the surgeons refused to let Shane go back to our home because we were too far from a trauma center. Instead, they wanted Shane to go the nearest chronic care facility, 3 hours from our home. We refused and learned CPR and how to work the medical equipment. We had to go in front of the ethic's committee again. After another heated discussion, the doctors agreed to release Shane if we moved closer to the hospital. They never thought we would leave our families and move to North Carolina. I started to look for a house near the hospital and set up home health care. One of our friends gave Jeremy a job.

After looking at rentals for weeks, we found we could not afford to move. I called a few local churches to see if any of their parishioners had places to rent. A local church pastor announced our situation to his congregation and a church member, Jackie, made it her mission to help us find a home. She organized a barbecue, which was announced on a local television station, and raised enough money for us to put a down payment on a mobile home with payments that we could afford. Jackie was a Godsend.

The doctors still did not want to release Shane, even after everything was set up. They said that he wouldn't live to make it to the parking lot. We were determined to get him home anyway and on November 29, 1993, after 10 months, we took Shane home. We later learned that the surgeons had a money pool going over how long Shane would survive once he left the hospital. Dr. Olden bet 2 weeks, Dr. Caffy bet 24 hours. We are happy to say that they both lost.

With home health nurses and equipment, we started on another leg of our long journey. Shane quickly settled into his nursery, with his painted cherubs looking over him from the walls. I tried my best to keep Shane's room looking like a nursery and not a hospital room, despite his ventilator, oxygen tanks, feeding pump, and monitors. We had nurses 16 hours a day and I watched him for 8 hours.

Our second day home, during my shift, our electricity went out. Shane's vent battery kicked in; it had an hour internal battery. I took him off his oxygen concentrator and hooked up a tank. I frantically called the power company, who told me a car had run into a generator and the power would be out for at least another 2 hours. Shane was on their emergency power list, but there was nothing else they could do. I called our medical equipment company and they talked me through hooking the vent up to a boat battery, and then the director came out to sit with me until the power came back on.

Shane's first Christmas was the best Christmas we'll ever have, even though we couldn't go home to our families or to our new niece, Kirstin, and nephew, Frankie, healthy babies, born to my sisters. I love them like they were my own. Those jealous feelings went away and were replaced by relief that they wouldn't have to go through what Shane did. When we put up the Christmas tree, Shane started to look at the lights. He could see! Our very own Christmas miracle, after we were told he would never regain his sight! Local churches donated money, toys, and even gifts for me and Jeremy. The local police station donated a $200.00 gift certificate to a nearby grocery store. My parents traded us their '88 Aerostar mini-van for our tiny '91 Escort so that we could transport Shane and all of his equipment to his doctor appointments. An anonymous, and I'm certain, wonderful person donated a double stroller so that we could carry Shane, his ventilator, his oxygen tanks, suction machine, diaper bag, feeding pump, and other medical equipment. Shane has shown us the truly wonderful side of humanity. So many strangers helped us out in our time of need.

We have had many ups and downs since Shane's been home. He wasn't gaining weight from the formula he was sent home on, so his nutritionist decided to try to switch his formula to a higher calorie formula that was milk-based. Shane had a severe allergic reaction to the formula and went into anaphylactic shock. We almost lost him. We now know he is allergic to all milk products, eggs, chicken, and red food dye. We have to keep an Epinephrine dose with us at all times. Even if a drop of anything containing milk touches his skin, he can go into shock.

We turned Shane's first birthday into a major event; we didn't know if he would ever have another. I spent 3 days painting Precious Moments clowns on his cake and decorating our kitchen. We couldn't have open flames around Shane, so I make one out of construction paper to put on his candle. Our tiny home was filled with family and friends. Shane was oblivious to all the activity, but he did manage to accidentally put his hands in the cake. We actually got a picture that the parents of "normal" one-year-olds get to take of first birthdays! Life seemed good again.

Shane slowly progressed. He still couldn't eat by mouth, he was fed by a feeding tube that was inserted down his nose into his stomach. He remained on the vent and oxygen and we all got used to having nurses in our home. Rachel and a few other nurses from the hospital joined our home nursing company to come work with Shane. Nurses came and went, a few stayed on permanently. They all became members of the family.

When Shane was 15-months-old, a new nurse, Ana*, after undergoing training, was working a night shift. At 6 am, she lightly tapped on our bedroom door and asked me to come to Shane's room. As I got halfway there, I heard Ana screaming. I ran into Shane's room and looked at my baby. He was blue, his eyes were open, but they were rolled into the back of his head. I screamed for Jeremy. He came in, saw Shane, and ran to call 911. Ana was screaming and shaking Shane. He was still on the ventilator, she hadn't even started CPR. I had to push Ana out of the way, and thankfully, everything I learned about CPR came back to me. I took Shane off of the vent, hooked up the ambu bag to his trach, yelled to Ana to turn up his oxygen, and checked Shane's pulse. His heart had stopped. I started CPR and finally Ana regained controlled and helped. Jeremy came into the room and told us an ambulance was on the way. He started to check the ventilator, which had been alarming since I first came into the room. Ana had empty the humidification trap to release the collected vapor and forgotten to close it. The ventilator must have been alarming for at least ten minutes. The first thing we learned in our training was that if the ventilator alarms and you don't know why, you take the patient off of the ventilator and manually respirate them until you fix the problem. Ana had left Shane on the vent. Imagine trying to breath through a very small straw that had no oxygen. That's how Shane felt. I fired her on the spot. After 10 minutes of CPR, Shane started to come back. By the time the ambulance got there, he was fine. Of course we took him to the hospital anyway, and he was released the same day. Ana was never disciplined by the company or the state nursing board. We will never forget what it looks like to see our baby dead, and we are more cautious about the nurses we let take care of Shane, in fact, we are probably neurotic about new nurses.

The stress of everything was taking it's toll on our marriage. Jeremy and I began to fight constantly and that April we agreed to separate. Jeremy moved around and I went through severe depression. A male nurse that had been taking care of Shane for 5 months decided he should take it upon himself to try to cheer me up. He almost raped me but I was able to fight him off, though I don't know how. He was married (we had met his wife) and we trusted him and had treated him like family. I had to call the police and even though I decided not to press charges (I wasn't emotionally stable enough for a trial), he lost his nursing license. My depression deepened. Jeremy and I started family counseling and I was put on anti-depressants.
We switched Shane's surgical care to another hospital. At a routine check-up, an x-ray showed that his sutures were giving way and that he would need another surgery. By now Shane was off oxygen, and only on the vent at night. He was interacting with us, starting to roll, and his smile lit up a room. In August of 1994, Shane underwent his 3rd major surgery. Everything went as planned and two weeks later he was home.

That October, Jeremy moved back home. I was still battling depression and we were still fighting, but we wanted to give it another shot for Shane's sake. Shane was doing great and I got to make him a Halloween costume. He and his 3 cousins were firemen and Dalmatians and his stroller was converted into a fire engine. Thanksgiving came and we got to go to Jeremy's family's house to celebrate. At Christmas, we went back to Virginia and I got to do all the things that I had wished for during the Christmas I was pregnant. Jeremy even played Santa Clause. Shane now played with his toys, rolled around in the wrapping paper, and could go from room to room without equipment and tubes. It's amazing what parents of healthy babies take for granted. The first time I could actually walk Shane around was like magic. It was like Shane and I were dancing in our own little world and he was almost "normal". We received another miracle that Christmas when I accidentally left my anti-depressant and birth control pills at home. After 6 months, I realized that the birth control pills were making me depressed.

Shane turned 2-years-old in January of 1995. His cake this year was a hypo-allergenic, applesauce cake. His cherubs have been removed from his walls and replaced with more "boyish" pictures of Looney Tunes characters. Shane came off his vent in May. On the 4th of July, he went into respiratory distress and we went to the emergency room. He had emergency surgery, his 4th, and went home 2 and half weeks later, off oxygen. This past October, he needed yet another surgery. He went through surgery number 5 and came home after 5 days. We make frequent trips back and forth to the hospital for viruses and for appointments to all the many specialists involved in Shane's care. We don't know when and if Shane will need another surgery. He never does anything by the book. Yet another Christmas came and I hoped against hope that we could possibly receive another miracle. I prayed nightly that God would heal Shane and prevent him from suffering through more surgeries. In early December, we went for a routine check-up with Shane's surgeon and an x-ray was taken. I have learned how to read these x-rays and was scared when I saw a mass. It wasn't a tumor. The doctor's say it is scar tissue, but Jeremy and I say it is the touch of God because whatever it is, it's holding his organs straight and as long as that happens, he won't need another surgery. He gave us yet another miracle and I believe that Shane will not need future surgeries. Of course I am terrified that we have used up all of our miracles; most people never receive even one. They say you stay on this earth until you finish your work and I worry that Shane has already finished his. He is so young but he has touched so many lives and forever changed ours.

As I write this, Shane will be 3 in 2 weeks. He now wears hearing aids and glasses. I heard him cry for the first time this past summer when we started to use a Pacimuer Valve, a small valve fit over his trach that allows him to make noises by teaching him to exhale through his mouth and nose. He started to crawl after his forth surgery and is "cruising" now. God willing, he will walk soon. The feeding tube in his nose was removed and replaced with a more permanent one placed directly in his stomach through his abdomen. He is starting to eat and drink by mouth and maybe someday, when he can eat as well as he needs to, the tube in his stomach will be removed. He can't talk yet, but he is very expressive with his facial expressions. His trach will be out this spring. He runs the house and gets into everything. He's a stubborn as a mule, but I suppose that's what has kept him here. It's impossible to discipline him and where most children learn not to climb or get into things after they fall once or twice, Shane is so used to pain, that when he falls or we pat him on the butt to keep away from things that could hurt him, he laughs hysterically.

Jeremy now has a new job with better benefits and is learning a trade, thanks to Jackie. I have started college and started a support group for the families of children like Shane. Jeremy and I are madly in love again and are considering having another child. Shane is doing well and will be at least 4-years-old before we have another one, and the time seems right. Of course we are terrified at the thought of having another sick baby, but the doctors and research have told us that the chance of that is rare. Like the parents of all babies, sick or healthy, we long to do "normal" things; come home a few days after giving birth, breast feeding, and having baby-sitters instead of nurses. We will never again be oblivious to what might happen, but we need to, and want to, have a good birth experience. Besides, Shane is getting a little too spoiled and another baby would do us all good. No matter what happens, Shane will always be a little more special, that's a feeling all mothers of disabled children have. I love him more than life itself and I would trade places with him in a millisecond. He the sorrow and joy in my life, as all children are to their parents, only multiply that by 100 when you have a disabled child. Every step forward and every step back is more noticed and more dramatic. It's hard, but I wouldn't trade it for anything. He has made me a stronger person.

I still get into arguments with doctors and nurses, but I know how to choose my battles. I have alienated quite a few of medical professionals, but I know Shane and his medical history best because I deal with it everyday of our lives. The latest battle was with a nurse who wanted to put Shane in a hospital room with 2 preemies when he was admitted with a virus. After asking to be put in a private room and told "no", I had to go into my "mom from hell" mode to get us moved and within 5 minutes we had a private room. There was no way I was going to subject to those two tiny babies to Shane's virus when they already had their own health problems to fight. Unfortunately, many of us moms with sick kids have had to learn about the "mom from hell" mode. Jeremy has supported me all the way. We no longer go to the hospital where Shane spent his first 10 months.

Because of Shane, and our experiences of having a child with this birth defect, I started a support group. It is the only support group of it's kind in the world. This defect strikes 1 in every 2500 babies. The cause is not yet known. It is not a prejudiced birth defect. It affects babies of healthy families, of parents of any age, of any color, of any religion, and any financial status; no matter how good the prenatal care. Most are found during routine ultrasounds. It can strike alone or with other birth or genetic defects. Fifty percent of babies born with this do not survive. Most survivors of this defect do not have any complications (other than feeding problems) or more than one repair.

I now know, after researching that the "flu" I had during my pregnancy, along with stomach pains, what I then thought was "more amniotic fluid that I had seen in birthing videos", and all the weight gain just in my stomach was undiagnosed polyhydramnios, excess amniotic fluid. Polyhydramnios is an indicator of fetal abnormalities. If my doctors had diagnosed me correctly maybe they would have diagnosed Shane's problems by ultrasound and we could have been prepared and had him at a trauma center better equipped to care for him.

I swore to myself that if I could help it, I would try to prepare other parents of children with this birth defect. These parents need to be better informed so they can make educated decisions for their child's health care. They need to know they are not alone. Most people have never heard of this birth defect, and if they are lucky, they never will. I started this support to help these parents the way Rhonda helped me. I wrote a newsletter in my kitchen, took it to a printer (who donated the service), and mailed it to a couple hundred parents and doctors. In 12 months, we now have families plus hospitals, universities, and research centers across the country and in Canada, Europe and Australia in our membership. The response has been overwhelming; this support group has been needed for forever.

Rhonda and Jenny have each had healthy baby girls since the deaths of their sons. We no longer keep in touch, it's a little uncomfortable for all of us; they have healthy babies but still grieve for their lost children and I still have Shane. They will always be in my heart, and I think they would agree, that our friendships were part of the worst times in our lives, but they are also a part of what helped all of us survive. I will never forget them. I hope the best for Rhonda and Jenny and their new babies, and I know one day I will have a healthy baby, too. I feel it in my heart as sure as I knew Shane was sick. But for right now, we'll be content will our own living, little angel.

updated 11/10/97

I wrote that story almost 2 years ago, but it seems like a million years. Reading it, I realize I was still in my "martyr stage"; a stage all of us parents of disabled children go through. Now, I'm back to "normal people stage" and Shane is almost 5. He is walking (actually running around the house and leaving a trail of toys behind him), eating a few ounces by mouth at a time, is completely off the ventilator and oxygen, and had his trach removed a year ago. He wears glasses and hearing aids and is going to a preschool for the deaf. He begs constantly to watch the SAME episode of Sesame Street over and over again; I guess that’s typical pre-school behavior. We only have "respite" nursing care at home now- no more strangers practically living with us. His nurse goes to pre-school with him twice a week, to take care of his feeding and medications while he is there. We no longer go to doctor appointments every other week; now we go every other month. He still winds up in the hospital a few times a year for viruses and pneumonia, but luckily they have been short visits. No more physical therapy (Shane has reached all his PT goals); only occupational and speech therapy now, with visits from a sight therapist to keep an eye on his vision. He has a Mic-Key feeding button now, which is actually helping to anchor his stomach into place. He throws tantrums, pouts, and flirts, like most "normal" kids his age, he truly can melt me with just a smile. Looking at him now, it’s hard to believe all we went through. Jeremy and I doing well. We are now living the "American Dream", ok, the warped version, but it’s a dream! Haha. We bought a house, have settled down in North Carolina, Jeremy has had a wonderful job for a few years now, and I have Shane and the support group to keep me busy and on my toes. I still battle depession on and off (a result of Post Traumatic Stress, which most of us parents of sick kids get) but life can be good! We have thought about trying for another baby; actually we lost another one (#2) through miscarriage this past summer. Shane still carries around that stuffed Precious Moments’ cherub doll (ok, so it’s "baby" #5, the first 4 fell apart from all the trips to the washing machine, but he doesn’t know that). Rhonda and I have made contact and she is now a member of the group; both of her children are healthy and happy, but Preston will always be a part of all of us.

update 7/5/98

Shane is doing really well- still carrying around "Baby", watching Sesame Street non-stop, eating much better by mouth, has learned 10 sign-language signs, and starts home-school this fall (after going rounds with the local school board who refused to put him in the county's only deaf class and wanted him in the L.D. class instead- where no one knew sign language, even though the deaf class is only 1 year ahead of him and has only 3 students). He plays with cat, loves going outside and riding in the car, and loves to be read to. He makes the silliest faces and has a wonderful sense of humor- you just can't help but smile when he does. I feel like the luckiest woman in the world to be chosen to be this wonderful little boy's mom.

1998 has been hard on us- a house fire (in which Jeremy was seriously injured), e-coli (food poisoning from seafood), a tornado that hit our house, yet another miscarriage, I lost my best friend, my parents are divorcing after 25 years, I had a hard time coping with the birth of my new niece who was born near the due date of the baby I lost last year, a lovely little "web war" over graphics, and Jeremy and I separated for a while again. With all that's happened, my depression really hit hard for a while as I tried to cope with everything. It still hits once in a while, but it's much better. Jeremy and I back together, this time for good. We separate when the depression hits me- and it's always my choice to separate, when I can't think straight. But Jeremy always sticks by me, and gives me space when I need it and a shoulder when I need that too. It only took me 7 years to realize this! J So now we're back on track. I have a new job, the support group now covers 47 states and 8 countries and is keeping me busy- so you can say I work 2 full-time jobs. We're trying for another baby again and we finally feel like life is going well and we're almost "normal". J I knew we would have it rough after Jeremy broke that mirror 3 months after we were married! Lol. 2 months to go and the 7 years of bad luck is over!

Update 4/25/99

Shane is now 6 years old and doing better than ever. He hasn't been hospitalized for over a year and started home-school last fall. He still watches Sesame Street far too much, "baby doll" (#10. Shhhhh- the others fell apart.) is still with us, and he loves to look at books. He now recognizes 20 signs and consistently does 10, and the biggest news- he's talking!!!! He says "Daddy" (figures! Lol) and "eat". He follows Jeremy around like a puppy and his favorite thing to do is hop in his dad's truck and ride again (he doesn't care where he goes, as long as he's riding. Haha). He helps to dress himself and starting to learn to pick up after himself a little. School and 2 new cats have helped him overcome his textile aversions. He loves the cats and they're great with him and really gentle. He caught a virus last fall and somehow (the doctors can't figure it out), his hearing and sight have improved!!!! Not bad for a kid they said would never see or hear. J His eyeglass and hearing aid prescriptions have changed for the better and he is responding to normal speaking voices without the hearing aids. We are sure this is what led him to finally be able to talk. Next month, he is scheduled for a tonsillectomy, because the virus caused inflammation of his tonsils and adenoids and the swelling hasn't gone down after 6 months. We're hoping that after the surgery he'll be able to talk more and start to eat.

Jeremy and I are doing really well, better than ever and have gotten really close after the last year's traumas, with the fire, hurricane, 2 tornadoes, another miscarriage, personal problems, and all the infertility procedures. For the first time, our major problems don't include Shane's medical problems, just "semi-normal" problems- it's wonderful! After working for a horrible company for a few months, I started my own web site design company in February and we are doing better than my wildest dreams already. We have employees, an office, clients, and a good reputation. I love my work, and with the company, the support group, home-schooling, remodeling, and raising a family, life is hectic- but I wouldn't change a thing. We are so blessed to have been given so many miracles, to be given each other and Shane. Life can turn around in a split second and though it may never be the same, it doesn't mean it can't be good.

Updated 9/99

Shane was born on January 28, 1993 with Left-Sided CDH, ASD, Hypospadius, Left Pulmonary Sequestration, Microcephaly, High Palate, and Undescended Testes, yet he was the most perfect child in the world to us (our slightly biased opinion). He spent his first 10 months in the P.I.C.U., overcoming pneumonia 4 times, over 30 blood, kidney, and urinary tract infections, brain damage, blindness, deafness, and 2 CDH repairs. Fighting the doctors, we brought him home, trached and vent and oxygen dependent. He regained his sight a month later and 2 years later the trach, oxygen, and vent were gone. By the time he was 3 years old, he was walking, had developed his own means of communication, and had survived more hospitalizations for pneumonia, viruses, and even coding at home once from a ventilator malfunction. At 4 and a half he started going to a deaf preschool and when the time came for kindergarten, we made the decision to homeschool him because our local school system was not adequate to meet all his needs. By the time he was 6 years old, he had regained his hearing (the audiologist never could figure out how- we call it a miracle), was terrorizing the cat, destroying the house with toys, using Sign Language, and worshipped Sesame Street (we soon learned every word, of every song, of every episode…).

In July he started coughing so we took him to his pediatrician, who was very afraid of Shane's medical history but we live in the sticks and don't have many options for local doctors. After demanding an x-ray we saw the x-ray film- the entire left side of his chest was whited out as if someone had taken paint to the x-ray. We left the pediatrician's office and went straight to Shane's surgeon. We all thought it was pneumonia and he was admitted to the hospital and put on antibiotics. When it didn't clear up and he got worse, we guessed he had reherniated (the x-rays were so bad you couldn't see any organs at all on that side) so he went into surgery. He had reherniated- for the 6th time. Shane never had much diaphragm to work with and the empty space between his lung and his diaphragm never filled, so it created a vacuum and basically it "sucked" the Gore-tex up. Apparently he had been reherniated for a while and the Gore-tex was wrapped up like a ball and had torn a tiny hole in his stomach and in his lung, allowing formula and stomach bile to enter his lung. This is called a gastroplueral fistula and is so rare that there are only a handful of cases in the last 30 years. We only found a few research articles on it and Shane's surgeon had never seen anything like it before. She repaired the hernia and sutured up the holes and we thought we'd be going home in a few days, but the pneumonia got worse. The hole in his stomach was so high up and in such an awkward place that the suture didn't hold. Shane was also so malnutritioned because of a lack of calories with the formula he was on (he never did decide that eating by mouth wasn't a bad thing) that his body couldn't heal properly. We decided to pump him with extra calories through his intestines and keep his stomach drained so that his lungs would clear and he would heal. Through it all he was a happy little trooper. He played in the hospital, rode around in a wagon, the nurses were tripping over toys (matchbox cars make a very cool sound when they hit tiled floors), and we had to have a room with a VCR so he could watch Sesame Street. We spent almost 2 months in the hospital and when we came home he still was fed through his intestines, his stomach was still being drained, he was on antibiotics, and he had to sit up all the time, even while sleeping. We came home the beginning of September, deciding that if the holes didn't close by the first of November he would have had enough nutrition to have surgery again.

On September 9th we went for our weekly visit to see Shane's surgeon. He was coughing a little, but we thought that was a good thing because he was clearing his lungs finally. Everything looked good and we drove the hour trip back home. All the way home, the kid who always looked out the car window and smiled at all the transfer trucks wouldn't take his eyes off me. He stared at me for an entire hour and for an entire hour I worried and wondered about why he was doing that. The next day he wanted me to sit beside him and play with him all day long. It was the first day in months that I didn't work (even while in the hospital) and just sat and played with him and held him. He was never a real clingy child and I wondered then if we should take him back to the hospital, but I didn't know what to tell the doctors, "He's clingy". I stayed up with him all night that night and finally went to bed when Jeremy got home from work at 11am that Saturday morning.

September 11th- Jeremy woke me up at about 4pm. His parents were visiting and Shane was "acting funny" so I got out of bed. When I went into the living room, Shane was sitting in the floor, surrounded by toys, Sesame Street blaring on the television, holding his best friend, "baby" (a stuffed Precious Moments pillow) and his Mimi (Grandma) was doing chest p.t. on him. He was coughing and the ends of his fingers were a little blue. I started to give him an albuterol treatment and sent Jeremy to the store to get a bulb syringe to see if we could clear his throat for him because he kept pointing to his mouth. I finished the treatment and started doing chest pt with Shane sitting in my lap. He was getting a little bluer so I called 911 and told them to send an ambulance just in case. One minute he was sitting there, seemingly ok except for the cough, and then he just passed out. I laid him down and tried starting beating his chest and shaking him to wake him up. Jeremy walked in just as he passed out. He was turning blue and I couldn't see his chest moving. I tried to get a pulse but I couldn't. I called 911 again, screaming "Where is the ambulance, he's coded. I called 5 minutes ago and we only live 2 blocks from the hospital!!!!!", all the while trying to do CPR. I handed the phone to Jeremy's mom so I could do mouth-to-mouth and when I went to blow in I could hear gurgling. I could barely get air in.

Jeremy's mom was on the phone and running around the house getting me the oxygen tank, ambu bag and anything else I screamed for (God bless that woman for being there and being calm and being such a huge help). While I was doing CPR, his chest tube blew. I was flashing back to the day he was born throughout it all- I could hear words coming out of my mouth, I was doing CPR mechanically without thinking about it, and yet an entirely different conversation and experience was going on in my head. It was like I was watching and not participating and all I could think was "Please God, no, please God, no….".

The ambulance finally got there. It was probably only 10 minutes from the first 911 call but it seemed like forever. I TOLD them I was riding along, they didn't want me in the ambulance. They had an ET-tube in Shane and were trying to get an IV line in. We got to the hospital and the staff wouldn't allow me in the crash room. I stood outside the door screaming that I was his mother and that they didn't know his history and I was no typical mom and they had better kill me before they were keeping me out of that room. One of the doctors finally relented when I started rolling off Shane's medical history and medical terms that he probably couldn't believe were coming out of this strange woman's mouth who obviously didn't look like a medical professional, having not even had time to brush my hair and wearing a stained sweat suit (stained from Shane). When I finally got in there I talked a nurse into finding Jeremy (who had followed us to the hospital) and bringing him in and talked the doctor into calling Shane's surgeon (thank God for Dr. Taylor explaining to him who we were and what we knew, the doctor's attitude toward us did a 180 after that phone conversation). Jeremy and I just stood there, holding each other, and watching the monitors. They couldn't shock Shane because he still had systolic pressure. It took an hour to get a good line in him (and surgery to get it). There were a dozen people in there working on him and every 10 minutes or so the doctor came over to us and told us that they weren't getting any response, even after pumping him with Epinephrine. I only left the room for a few minutes to call my family.

In what seemed like only seconds, 2 hours had passed and then I had this calm come over me. I always told other parents that they would "know when it was time to let go". Now we knew it was time. After 2 hours and pnuemothoracies (air in his chest cavity from all the bagging), his diaphragm probably totally gone, and his brain irreversibly damaged, Shane was gone. Shane was gone before we even left the house. The doctor came over to us again and we told him we knew it was over. I asked them to keep working on him long enough so that we could say a prayer and Jeremy and I could hold him when they stopped. All the doctors and nurses held hands with Jeremy, his parents, and me and even the doctor said a prayer. We held him when they stopped bagging him. I was so numb and I didn't want to let him go and at the same time I just wanted to run away. We left so they could clean him up and they brought a rocking chair down from the maternity ward. I called Judi and told her what happened and in a few hours she was on her way to NC to be with us and she was calling some of the members. My family got there and we took turns holding him, even my little nieces and nephews wanted to hold him. They were confused but not scared and I'm glad they got to say good-bye. We had to take Shane to the deserted x-ray waiting room to hold him because they needed to empty the crash room. We held him for hours and took pictures and cried and cried. We told him it was ok to go to heaven about 10 times before it felt like he left. He didn't want to leave us and it broke my heart to tell him to go. I just couldn't comprehend that I would never get to hold him again. I never wanted to hand him back to the hospital.

Judi and more of our family arrived at our house that night and the next day Tara Hall, one of our members and a dear friend, drove down from Ohio to be with us. I e-mailed the Listserv that night and the next morning we called more family and friends and had to tell Shane's home health nurse, Delores, who had been with him for 5 years and next to Jeremy and I, the closest person to him. Thankfully her husband answered the phone, because I just couldn't bear to tell her. Everyone at the house was trying to help us make arrangements and make more phone calls. I kept myself busy by making the funeral programs- I couldn't sit and think about what happened because I knew if I started crying I couldn't make sure everything was done the way we wanted. It was the last thing we would be able to do for Shane, I wanted to remember it and not be in the tearful fog I'd fall into if I let myself cry. Now I know that postponing grief was a horrible decision, but it was the only decision I could make at the time that would allow me to survive those first few days and weeks.

We decided to bury Shane in Virginia, at my parents' house in an small orchard. We had moved to NC to bring him home from the hospital, now we wanted him in Virginia where he should have come home. The funeral director did a great job and found a white casket with cherubs on it and even took handprints and footprints for us. Shane was laid to rest in a Sesame Street outfit, his sneakers, wearing his favorite baseball cap and his glasses and holding his baby and surrounded by his favorite toys. We had a viewing the night before the funeral and we asked everyone not to whisper, but to talk loud enough for Shane to hear them from heaven. The funeral service was beautiful and the programs were Sesame Street themed and the church was literally overflowing with CHERUBS' members, Shane's nurses, family, and friends. People we hadn't seen in 10 or more years came to say goodbye to a little boy they never even got to meet during his short 6 and a half years on Earth. One of Shane's Godmothers, Rachel, who was his primary nurse during those first 10 months, wore a bright fuchsia and yellow dress to the funeral- she knew Shane would have loved that dress. I wish I had thought of telling everyone to dress in bright colors. During the service Judi read a letter and a beautiful poem written by Jennifer Wasik, another member and dear friend. My sister and her husband read letters to Shane that Jeremy and I had written, Shane's uncle, James, sang "The Dance" (a song we had sung to Shane since the day he was born) and Shane's uncle, David, read a very touching eulogy. At the graveside we released 6 Elmo balloons for every year he spent here and 100 blue, red, and yellow balloons for every year he should have spent here. It was raining that day but it stopped just as the funeral started and the clouds actually parted over the cemetery. We had a Sesame Street cake at the wake (the wake was after the burial). It was not a typical funeral, but he was not a typical kid. We wanted to celebrate his life.

After everyone had left after the wake I was outside in my parent's yard and pollen from a tree I had never noticed before and never remembered having pollen starting falling and blowing around like snow. The pollen was just the shape and size of little feathers from the wings of cherubs. It blew around me like a scene from a Christmas movie and I was very peaceful at that moment. Maybe it wasn't pollen. Maybe it was Shane letting us know he had reached heaven and was now with the other cherubs.

His headstone has pictures of Elmo, Big Bird, a truck (he loved his dad's truck), and one of the logos I had drawn for CHERUBS web site- a cherub wearing suspenders and glasses (one I had created to look like Shane). How do you fit an entire, even though short, life on a stone? We wrote a few words about Shane on it, his name, the dates, and also carved on the stone is "Psalms 18:10"- He flew upon the wings of cherubs, yeah he did fly like the wind.

We had a memorial service in NC the following week and more members of CHERUBS came, including Susie and Jim from SC and our dear, dear friend, Rhonda, who was with us in the very beginning when our sons were hospital roommates so many years ago. One of our members, Beth, had even come to visit Shane when he was in the hospital. I don't believe there could ever be a better group of people like we have in CHERUBS.

We miss him so much. I can't believe this isn't just a bad dream. I hear him and see him all the time through memories. Sometimes I expect to see him walk through the door, dragging toys into the living room and smiling at me. Shane was such a happy kid. He was always smiling and laughing and even though he was stubborn he had the best temperament and sense of humor. Looking back on that day in the car, I believe he knew it was his time to go and he wanted to make sure he remembered what we looked like. I used to joke that he was psychic because we always understood him, even before he had a means of communication. Now we believe he was just a very spiritual kid with the soul of an old man. His eyes were much too old to belong to a 6-year-old.

We take each day at a time and are thankful for all the time we had with him. We know that even though we didn't have him as long as parents of healthy kids have them, we had him longer than a lot of other parents have their children, and even though his life was hard it was a good, happy life and we wouldn't change a single second of it or have traded for him any healthy child. I sleep with the "baby doll" he had when he died (we buried him with one of the other 12 that he owned- they kept multiplying over the years). Holding that doll makes me feel closer to Shane. Shane will forever be our hero and in our hearts. The picture you saw at the benning of this story is of me and Shane telling Jeremy "Happy Father's Day" (there was a sign, but I had to crop it out). It was one of the last ones we have of Shane and it is the last one of him before he got sick. During his last week we had planned on taking him to get professional pictures taken, but we kept procrastinating. We regret that so much now.

Other than losing Shane and letting him go, writing an e-mail to tell the on-line members what happened was one of the hardest things I have ever done, next to writing this story. I know that Shane's story will scare so many of you, but please know that Shane was atypical his entire life. I don't know what to tell new families that call who ask "Was your child a survivor?". Now we know both sides- life as parents of a survivor and life as parents without their child. I hope that something good will come out of this and it will make me a better President for CHERUBS. Like I've said for years "You can't compare one CDH child to another"- that holds very true in this instance. We'd already had 2 families quit because what happened scared them so much, but what happened to Shane was a 1 in a million complication. I don't want anything else horrible to come from Shane's death, his death was horrible enough. I especially don't want families leaving the support of CHERUBS. If any of you have questions or worries about your own child because of reading Shane's story, please get in touch with me and I will be glad to talk to you about it.

Updated 2006:

It’s been 7 years since I lost my cherub. It’s hard to believe he’d be a teenager now if he had survived. Life without him hasn’t been the same at all. Jeremy and I divorced in 2003 after 12 years together and 2 seperated. We just handled grief very differently and we couldn’t manage to be strong enough to stay together through it. My entire life was Jeremy and Shane and I had to rebuild from nothing. During all this I lost 3 more family members, including my youngest sister. Debra was 22 years old when she died of cancer. She’s now taking care of my son in Heaven as I watch after her children on Earth. I pray someday that I am blessed with a family again but I am so thankful that I had such a wonderful little family if even just for a little while. I wouldn’t trade those years for anything. Shane taught me much more than I could have ever taught him.

I’m 33 years old now… hard to believe I was such a baby myself during most of this. I think I’ve finally grown up. I now run my own company creating web sites for businesses, but CHERUBS is still my true passion. There were a few slow years where I tried to rebuild my life and now I am back in full force and hopefully CHERUBS will be even stronger.

Update 2008:

CHERUBS is back full force. We are so busy doing so many things that it's exhausting most days. We have a new web site, over 2200 members, a conference planned, several awareness events planned, fundraisers, new logos, new volunteers and a research site underway. I love my work with this wonderful organization.

CHERUBS is now 13 years old... twice as old as Shane was when he died. There are still bad days when I miss him so much I can barely breathe. I dream about him often and it helps so much to spend time with him and to feel like I've held him, if only in my dreams for a little while.

Life has gone on, though there were days I didn't think it would. There were days I didn't think it should. But I am happy again, when I didn't think it was possible. It's happiness without the innocence that I had before I lost my son, before I lost my sister, my grandfather/father figure, other family members, my husband through divorce, my home through divorce.... add in a broken engagement and losing another little boy that I helped to raise for 2 years through that break-up, plus attacks and slander and lies from someone determined on destroying CHERUBS out of petty jealousy and all the hell that that entailed, and the man I was dating last year was killed on patrol as a Durham policeman... it's been a lot to deal with and overcome on top of all that CDH threw at us and losing Shane. I haven't always given CHERUBS as much time as I've wanted to the past few years because I've been busy going through hell and back. But hell is over and I survived and I am happy. It's a new kind of happiness. But it's still happiness. I still run my web design company and I am in an incredible relationship with the most amazing man who couldn't be more supportive of CHERUBS and my son's memory if he was Shane's biological dad. He has twin sons that I adore and I feel so blessed to have all 3 of them in my life. I look at the boys skateboarding, both 12 yrs old, and I can't help but wonder what it would be like to see a 15-yr-old Shane skateboarding with them. I will always wonder, but I accept that wondering now. I know that right now, I am where God wants me to be, doing the work that He wants me to while He is taking care of my son. There is so much peace in that.

CHERUBS... wow, how we've grown and what we've been through! The amazing friends I've made through CHERUBS have given me so much. Driving 100's of miles when Shane died just to be with me. Holding me up through grief. Listening to me cry when my life was a mess and I didn't know how I'd make it through. Rallying around me during drama and showing what a support group is really about. And look at us... some of us friends for over a decade now, making new friends every day. Working together with the whole CDH community to bring support, awareness and research to Congenital Diaphragmatic Hernia. I look back 15 years ago at that scared 19 year old kid and all the things that have happened in the past 15 years for all of us.... I am blessed. With the time I had with my son. With CHERUBS. With the work that I do. With the friends I have made. With my wonderful family. With the love of my life as my best friend. Life has been hard at times, but through it all, I have been blessed.

Written by Shane’s mom, Dawn M. Torrence (North Carolina)
1995, Updated 1999, 2006, 2008

Shane and CHERUBS and Blogging

2009-08-04T07:24:00.000-07:00

I debated whether or not to start this blog. There are many reasons why...

1. Shane has a memorial web site already - Shane's Street.

2. I run CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support Congenital Diaphragmatic Hernia (CDH) is a rare birth defect that occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 in every 2500 babies. 50% do not survive. The cause is not known. CHERUBS is the world's first and largest CDH organization, leading the way in CDH research, support and awareness since 1995.

3. Shane died 10 years ago. I'm not exactly in the beginning stages of grief anymore. I'm at peace with his life and death, I've learned to cope with it. I no longer struggle every day (10 years ago I never would have believed that!). So I don't feel the need to talk about grief or his death as much as I did say 8 or 9 years ago.

4. Will a blog about my son be more material for some to judge and criticize me and CHERUBS? There is chance something I create in memory of my son, with every positive goal I have, that may have nothing to do with CHERUBS... could be twisted by negative people. I don't need drama. CHERUBS doesn't need drama. But unfortunately, there are mean people in the world. And especially on the internet.

5. I don't want Shane's life and site and blog to be confused with CHERUBS. They are 2 different things completely. CHERUBS isn't about Shane and Shane wasn't the reason behind CHERUBS. CHERUBS is a non-profit organization created in 1995 by 2 CDH moms. It was named for all the children who do not survive CDH. It was started by more than 1 CDH mom, it's board is full of CDH parents (and 1 grandparent) and CDH doctors and nurses. CHERUBS is for ALL CDH families. My son is no better or worse than any other child who was born with CDH - they are all equal. He wasn't the inspiration behind CHERUBS, it wasn't named for him, I wouldn't dare ask other CDH parents to volunteer for an organization that put my child above theirs. Yes, I volunteer about 40 hours a week for CHERUBS but I am not CHERUBS. I am one of many volunteers. I am just one of 100o's of members. I just happen to do all the office work and paperwork. I founded CHERUBS and I run CHERUBS and I happen to be Shane's mom. It's that simple and that complex. :)

6. Shane's life is not defined by CDH and CHERUBS. When Shane died I was insistent that he not be remembered as just a "CDH child". Yes, he had CDH, but he was also an amazing kid! He had a ton of other health issues and he wasn't labeled as "the deaf kid" or the "kid with the trach" or the kid "who was homeschooled". He was a kid who loved, loved, LOVED Sesame Street. He loved riding in cars and playing with matchbox cars. He loved books. He loved petting the cat. He couldn't talk but he could sign and he and I had a special bond that let me know what he was trying to say when the rest of the world had no clue what he wanted or how he felt. He loved dragging toys out of his room to the living room and playing on the floor all day. He loved going outside, even though he couldn't stand to have grass or dirt or sand touch his feet. He laughed. A lot. He had the most contagious laugh. He had a beautiful smile that made anyone who saw it smile too. He carried around a stuffed Precious Moments doll named "baby", everywhere he went for his whole life. He had a huge heart and would hand anyone any of his toys. He was a walking miracle who beat so many odds so many times that no doctors could ever explain. He gave the best hugs in the world. He loved blowing raspberries. Loudly. All the time. He went to deaf pre-school. He was home-schooled for kindergarten. He was a happy kid. He was loved, so very, very loved.

7. My life is more than just CDH and Shane and CHERUBS. My life is full and happy and I am so blessed with so much more! I am a wife, a mom to 2 more boys, I run a company, I have too many hobbies, I am part of a huge families, I have great friends. I have a very sarcastic sense of humor. I am a Christian, proudly but I do not pretend to be perfect. I am a newlywed and my husband truly is my soul mate and I know how blessed I am to have found him! I have the best boys in the world, and even though I didn't give birth to them they are as deep in my heart as Shane is. My husband and boys are the funniest people I know. I love to scrapbook and take photographs. I love to travel. I had a 4.0 college GPA and I've won 100's of graphic awards, including one from the LA Times - and I'm a nerd and proud of it. I have absolutely no fashion sense at all and don't care. I've met several famous people but I think name-dropping is beyond tacky. I am opinionated but not judgmental. I always stand up for what's right, even though it's rarely convenient or easy to do so. I love watching my boys play baseball. I hate heights but love roller coasters. I have a very spoiled Maltese puppy that I baby. I've run my own web design company for 10 years. I hate sales. We want more kids someday soon. I am a horrible cook. I love our new house. I love puzzles. Compliments make me very, very uncomfortable. I brag about my work, my boys, my husband but you'll probably never hear me brag about myself in real life. Learning to ice skate is on my to-do list. I love to sing but I am horrible at it! I will read medical journal articles like they are newspapers. I pray for everyone, even people who don't like me. I am shy until I get to know people. I love good quotes. I keep a small circle of close friends but I keep them for life. Yes, I am a grieving mom - but that is not ALL that I am.

8. My other 2 boys, my 14-yr-old twin stepsons - who will be known here as B & G - never met Shane. They can read his story and look at his photos but there is so much more I want them to know about their big brother. Shane is a part of our family. His photos are hanging on the wall beside theirs. They volunteer for CHERUBS in his memory. I want them to know him. I'm hoping the stories that I post here will help them do that.

9. CDH Awareness is always a good thing, even though I won't post a whole lot about CDH.

10. Grief never ends. You never stop missing people you lose. Losing a child is the absolute worst thing anyone can go through. Not everyone survives it in one piece. I have. Maybe my journey will help others.

Shane's Street - Raising Congenital Diaphragmatic Hernia Awareness

12 Years Ago...

Vote for CDH Babies!!!!

Please sign the CDH Research Bill Petition

April 19 - Congenital Diaphragmatic Hernia Awareness Daily Celebration

Vote to help charities who help sick children!

Goals

Overview

How will the 25K be Used?

Angel Ball, CHERUBS, Shane and Me on the news

In Depth: Dawn Williamson, Cherubs

Halloween Pasts....

Taking this blog in a new direction...

Chris' Gift To Me

Angel Ball Baskets in Memory of Shane & Debra

It all started with Shane.....

APX Contest and Pepsi Refresh

Vote for CHERUBS in the APX contest and Pepsi Refresh Contest! Get a FREE t-shirt!

FB Application - http://apps.facebook.com/pepsirefresh/idea/view/id/1da7df6c-d2c6-102d-826f-0019b9b9e205?ref=mf

Site - http://www.refresheverything.com/cdhhospitalkits

Text - 101211 to Pepsi (73774)

How will the 25K be Used?

FB Application - http://apps.facebook.com/pepsirefresh/idea/view/id/11cf40c0-d53e-102d-826f-0019b9b9e205?ref=mf

Site - http://www.refresheverything.com/cdhfamilies

Text - 101202 to Pepsi (73774)

How will the 25K be Used?

Shane in the APX Gives Back Contest video

PRESS RELEASE: Raleigh Charity In Close Race To Win $100,000 National Contest

3 CDH Charities, 2 Contests!

Real Hope for CDH in the Chase contest!

Working on the Angel Ball in memory of Shane

Please vote in memory of Shane to help CHERUBS win $100,000!!

.

Why Not My Cherub?.... A Letter To Grieving Parents

Congenital Diaphragmatic Hernia Research Bill

March of Dimes March for Babies Walk, Seeing an old friend and Mother's Day

Easter

New CDH Song Video!

Making My Son Proud & Doing Right By CDH Babies Everywhere

The Great Human Race - March 27, 2010

Happy 17th Birthday, Shane!

Christmas

Sesame Street Basket for Auction for CHERUBS

Shane's Babies in the Sky Graphic

Shane's 10th Angelversary

My Sons

9/11

10 years ago

Congenital Diaphragmatic Hernia on Facebook

10 years

Shane's Video

Please Sign for Shane

Scrapbooking

Shane, Brandon and Logan

Remembering Shane

CHERUBS Adopt A Hospital CDH Program - Duke University Medical Center adopted in memory of Shane Torrence

Shane's Story

Shane and CHERUBS and Blogging