Working on the Angel Ball in memory of Shane

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!!

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!!!

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

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

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

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

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.