I am in the beginning stages of writing a book about Shane and the beginning of CHERUBS... they are too intertwined to not be about both.
It's the first of 2 books I am writing, with help from some writer friends. The 2nd book will be about the trials and tribulations of running a charity and rebuilding my life after losing my son. It's pretty much like my life - as it's separated too into "Before losing Shane" and "After losing Shane". The first book is about him. The second book is about me.
I don't know how long it will take me to write them but I'm starting. I don't know when they will get published, but they will. I'm not a "flowery" writer by any means... I'm a heart-on-my-sleeve too-honest-for-my-own-good person and my writing reflects that. It's emotional, it's raw, it's honest, it's all the joys of having my miracle baby boy and all the pain of losing him. Which means reliving all of it. I'm not sure I'm ready even though he was born 20 years ago. But I need to do this, for him, for me, for CDH awareness.
I've been going through all the medical records, the hospital audio tapes, playing videos, his cedar chest which is filled with his toys and books still and sits near my bed. I've even going through the old audio tapes of me and his dad singing karaoke with him playing along and humming into the microphone laughing. Who would've thought that sitting on our living room floor with a stereo system and our 6 yr old singing Garth Brooks songs would turn into something so incredibly precious.
I think going through all this stuff has probably made his birthday harder this year. I can admit I am a basket case this year. 20 years... it can't be that long ago. It truly seems like yesterday I was painting Precious Moments characters on his first birthday cake or shopping for a Big Bird cake pan for his 4th.
Facebook makes it harder, no doubt. How do newly grieving parents these days survive grief and Facebook???? Turn it off, parents... save yourselves the pain of seeing all the happy posts about new babies and all the terrible posts of horrible parenting.
Turning 40 this year without any other children makes it much harder. I guess having a perfect child for 6 and a half years was enough gift and I shouldn't expect more with such an incredible gift. But it's hard. Watching my step-sons and nieces and nephews hit all the milestones Shane will never have.... it's hard.
Life isn't fair. Good people get hurt. Children sometimes die. Horrible people get to be parents and good people have empty arms. Someday God will explain it all to me but in the meantime, I know He has His reasons and it's all for a greater good.
So many people are posting and sending me messages today and it's so wonderful to have my little boy remembered. I am very, very blessed to have some incredible people in my life. Thank you, everyone for wishing my little boy Happy Birthday. <3 p="">
Back to the books..... I am going through CHERUBS old listservs. Wow. Time warp.
http://health.groups.yahoo.com/group/cherubs/
Here is my son's last 6 months all journaled out to other CDH parents. Here is the beginning of the CDH community.
I'm going to repost some of the posts I wrote about Shane here. <3 br="">
Raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more. Will you care? http://www.cdhsupport.org In memory of Shane Torrence (1/28/93 - 9/11/99)
Shane
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care? http://www.cdhsupport.org
Monday, January 28, 2013
Sunday, January 27, 2013
Happy Birthday, Baby
20 years ago I gave birth to the most amazing little boy a mom could ever ask for. You were the love of my life, Shane. I miss you more than words can say but I am so grateful for the time we had together. Happy Birthday to my hero.
Love,
Mommy
Love,
Mommy
Wednesday, September 26, 2012
Masquerading Angels Ball October 20, 2012 in Raleigh, NC
CHERUBS 2012 Masquerading Angels Ball
October 20, 2012
6:00 pm - Midnight
Capital City Club
Raleigh, NC
Formal Charity Masquerade Ball
Come join us or a magical night for a good cause. Celebrity guests, enchanting decor, amazing music, a casino, silent auction and beautiful attire will make this a night to remember.Money raised from this event will go to CHERUBS to fund services to further help families of babies born with Congenital Diaphragmatic Hernia. CHERUBS is a 501(c)III international children's charity.
Attire: Our FORMAL masquerade ball encourages men to wear tuxedos and women to wear floor-length gowns. FORMAL period costumes are welcome. Formal evening gowns are welcome. Formal masquerade masks are highly encouraged. Not acceptible; typical Halloween costumes, short dresses, street clothes and scary masks.
Age Requirement: You must be 21 years old or older to attend. CHERUBS reserves the right to refuse ticket sales when necessary.Live music by Raleigh based band, The Stone Age Romeos!Sponsored by:
Diamond Sponsor Halloween & More
2012 Sponsorships now available! - Sponsor or donate auction items in honor/memory of your cherub!
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 2012, we have over 4000 members in all 50 states and 54countries. 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
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.
Friday, May 11, 2012
April 19 - International Day of Congenital Diaphragmatic Hernia Awareness
April 19th is the International Day of Congenital Diaphragmatic Hernia Awareness. CDH families in 53 countries participate, 15 governors proclaimed the day for 2012, parades were held in 7 cities and even Capital Hill got in on the action this year.
I asked for and received a proclamation from Gov. Perdue of North Carolina. I have to confess I always thought proclamations were just a piece of paper but I admit, it felt great to get this in the mail and feel like I made a difference for all the CDH families in North Carolina.
On April 19th, this is how I participated in the Day of CDH Awareness this year in the Parade of Cherubs in Washington DC.....
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There have been newspaper articles and TV interviews. We even got to talk to over 50 senators offices about the CDH Research Bill.
There is so much really good stuff going on at CHERUBS. A lot we haven't even gone public with yet. It feels like the cherubs and angels are opening doors left and right for us to help these babies.
We're finally doing it, Shane. <3 I just wish you were here marching with us.
Friday, April 13, 2012
CDH and CHERUBS on CNN iReport!
Please read, recommend and repost as well as comment to help us convince CNN to make this national news!
Senator Sessions Works With Charity To Help Save 1600 Babies Born Each Year With Mysterious Birth Defect
http://ireport.cnn.com/docs/DOC-775825
PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)
FOR IMMEDIATE RELEASE
Media Contact:
Kelly Maicon
919.741.9784
kelly@anuevents.com
Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)
WAKE FOREST, NC (April 9, 2012) – On Thursday, April 19, U.S. Sen. Jeff Sessions (R-AL) will meet with over 250 people participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of a birth defect called congenital diaphragmatic hernia (CDH). Sen. Sessions’ two-year old grandson, Jim Beau, is a CDH survivor. In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.
CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. It is as common as cystic fibrosis and spina bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.
“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year.”
The parade has been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications. Children donned in wings will begin the three-mile walk at 10:00 a.m. at the Lincoln Memorial; they will travel past the Washington Monument and the White House, and conclude at the U.S. Capitol Building.
Massachusetts General's CDH Genetic Study Lab will have representatives walking in the parade. During their visit to Washington they will take blood samples from relatives of CDH victims for genetic research.
“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Families from all corners of the country plan to participate in the parade, and we expect the number to grow as we get closer to the event.”
Several other cities across the U.S. are hosting a cherubs parade on the same day including, Chicago and Peoria, Ill.; Denver; Portland, Ore.; Seattle; and St. Louis. The St. Louis Fetal Treatment Institute, known for conducting in utero procedures on CDH babies, has been an integral part of organizing their local event. There will also be a national candle lighting in the U.K.
A virtual parade of Cherubs has been set up on Facebook and Twitter so people can show their support by uploading photos and videos from their smaller awareness/fundraiser events.
If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit www.cdhsupport.org.
###
Additional Events:
Washington DC Parade of CHERUBS takes place on April 19, 2012 starting at the Lincoln Memorial at 10:00. It is being led by Dawn Williamson, President of CHERUBS and mother to Shane, a non-survivor and Melissa Larrison, Virginia State Representative and mother to Hanna Larrison, also a non-survivor. http://cdhawareness.eventbrite.com
The Denver Parade of CHERUBS takes place on April 19, 2012, at Sand Creek Park starting at 3:30 pm. The event will start with the reading of the proclamation issued by Governor Hickenlooper and will follow with recognition of the health care professionals in Colorado who lend so much to the conduct and advancement of medical treatment for this congenital defect. A moment of silence will be observed in memory of those CHERUBS who have been lost to CDH. Finally, participants will take part in a three-stage balloon release in memory of our CHERUB Angels, in honor of our CHERUB Warriors, and in anticipation of those CHERUBS who will arrive soon. The event was organized by Nicolle Colvin the Colorado State Representative for CHERUBS, Victoria Grover, and Jennifer Rodi. http://denverparadeofcherubs.eventbrite.com/
The Peoria Parade of Cherubs takes place on April 22, 2012 in Glen Oak Park beginning at 2:00 pm. The event was organized by Kristin Aigner and Sarah Polich. Kristin is an RN in the NICU and coordinates CDH Follow up Clinic at OSF St Francis Medical Center and is the sister of Christopher, who was born with CDH in 1973. Christopher grew his wings and flew to Heaven two months after he was born. Sarah 's daughter, Kalianna, was born with CDH and is now a happy, thriving 8 month old. The Parade route is around Glen Oak park, followed by a ceremony to honor Cherubs in Heaven, ending with the joy of being together, refreshments and kids playing in the park.
http://peoria2012paradeofcherubs.eventbrite.com/
The Seattle Parade of CHERUBS takes place on April 19, 2012 and is being organized by CHERUBS Washington State Representative, Christina Stembler, whose Son, Hunter Stembler, was born with CDH. Christina invites Everyone that has been affected in any way by CDH, to take part in the parade. Meet on Pier 62/63 next to the Seattle Aquarium at 11:00 A.M. We will be walking to Waterfront Park and Releasing Balloons in Loving Memory of all CHERUBS lost and in celebration of CDH Warriors and the awareness that they share on a Daily basis. http://seattleparadeofcherubs.eventbrite.com/
CHERUBS is working with Children's Memorial Hospital to put on the Chicago Parade of Cherubs. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizinng the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Oz Park to pay respect to all those Cherubs lost. Then they will be walk 1.2 miles by the hospital and the Ronald McDonald House (which so many CDH families frequent during their child's often long stay at the hospital). Close to 70 people (from three states) are expected to participate in this awareness event. http://chicagoparadeofcherubs.eventbrite.com/
The St Louis Parade of CHERUBS takes place on April 19, 2012 and is a joint project of CHERUBS and the St. Louis Fetal Care Institute. It will include a walk around the hospital grounds, a presentation, candle lighting and lighted balloon release. http://stlouis2012paradeofcherubs.eventbrite.com/
Oregon & SW Washington members of CHERUBS will be holding Portland's "Parade of Cherubs" for the International CDH Awareness Daily Celebration in conjunction with several other cities in the USA & UK on Thursday, April 19th from 1:00 pm - 3:00 pm at Legacy Emanuel Hospital in Portland, OR. The local event is being coordinated by CHERUBS Oregon Co-Rep grandmother Shelly Moore & mother Alicia Gilbert to CDH angel Jayden Gilbert who died in March of 2010 after a 23 day fight against CDH & complications, and member Andrea Martin whose 12 year old daughter Sarah is a CDH survivor. http://portlandparadeofcherubs.eventbrite.com/
CHERUBS United Kingdom Representatives Clair Maher and Melanie Parsons are working with member Cara Stevenson to coordinate a national Light Up the Night Event with candles and lanterns.
https://www.facebook.com/cdhsupport#!/events/248708328546723/
A Virtual Parade of Cherubs will include 100's of CDH families submitting stories, photos and video over social media. More information can be found at https://www.facebook.com/CherubsVirtualParade
Congressional Bill - http://www.cdhbills.org
Senator Sessions Works With Charity To Help Save 1600 Babies Born Each Year With Mysterious Birth Defect
http://ireport.cnn.com/docs/DOC-775825
PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)
FOR IMMEDIATE RELEASE
Media Contact:
Kelly Maicon
919.741.9784
kelly@anuevents.com
Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)
WAKE FOREST, NC (April 9, 2012) – On Thursday, April 19, U.S. Sen. Jeff Sessions (R-AL) will meet with over 250 people participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of a birth defect called congenital diaphragmatic hernia (CDH). Sen. Sessions’ two-year old grandson, Jim Beau, is a CDH survivor. In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.
CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. It is as common as cystic fibrosis and spina bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.
“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year.”
The parade has been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications. Children donned in wings will begin the three-mile walk at 10:00 a.m. at the Lincoln Memorial; they will travel past the Washington Monument and the White House, and conclude at the U.S. Capitol Building.
Massachusetts General's CDH Genetic Study Lab will have representatives walking in the parade. During their visit to Washington they will take blood samples from relatives of CDH victims for genetic research.
“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Families from all corners of the country plan to participate in the parade, and we expect the number to grow as we get closer to the event.”
Several other cities across the U.S. are hosting a cherubs parade on the same day including, Chicago and Peoria, Ill.; Denver; Portland, Ore.; Seattle; and St. Louis. The St. Louis Fetal Treatment Institute, known for conducting in utero procedures on CDH babies, has been an integral part of organizing their local event. There will also be a national candle lighting in the U.K.
A virtual parade of Cherubs has been set up on Facebook and Twitter so people can show their support by uploading photos and videos from their smaller awareness/fundraiser events.
If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit www.cdhsupport.org.
###
Additional Events:
Washington DC Parade of CHERUBS takes place on April 19, 2012 starting at the Lincoln Memorial at 10:00. It is being led by Dawn Williamson, President of CHERUBS and mother to Shane, a non-survivor and Melissa Larrison, Virginia State Representative and mother to Hanna Larrison, also a non-survivor. http://cdhawareness.eventbrite.com
The Denver Parade of CHERUBS takes place on April 19, 2012, at Sand Creek Park starting at 3:30 pm. The event will start with the reading of the proclamation issued by Governor Hickenlooper and will follow with recognition of the health care professionals in Colorado who lend so much to the conduct and advancement of medical treatment for this congenital defect. A moment of silence will be observed in memory of those CHERUBS who have been lost to CDH. Finally, participants will take part in a three-stage balloon release in memory of our CHERUB Angels, in honor of our CHERUB Warriors, and in anticipation of those CHERUBS who will arrive soon. The event was organized by Nicolle Colvin the Colorado State Representative for CHERUBS, Victoria Grover, and Jennifer Rodi. http://denverparadeofcherubs.eventbrite.com/
The Peoria Parade of Cherubs takes place on April 22, 2012 in Glen Oak Park beginning at 2:00 pm. The event was organized by Kristin Aigner and Sarah Polich. Kristin is an RN in the NICU and coordinates CDH Follow up Clinic at OSF St Francis Medical Center and is the sister of Christopher, who was born with CDH in 1973. Christopher grew his wings and flew to Heaven two months after he was born. Sarah 's daughter, Kalianna, was born with CDH and is now a happy, thriving 8 month old. The Parade route is around Glen Oak park, followed by a ceremony to honor Cherubs in Heaven, ending with the joy of being together, refreshments and kids playing in the park.
http://peoria2012paradeofcherubs.eventbrite.com/
The Seattle Parade of CHERUBS takes place on April 19, 2012 and is being organized by CHERUBS Washington State Representative, Christina Stembler, whose Son, Hunter Stembler, was born with CDH. Christina invites Everyone that has been affected in any way by CDH, to take part in the parade. Meet on Pier 62/63 next to the Seattle Aquarium at 11:00 A.M. We will be walking to Waterfront Park and Releasing Balloons in Loving Memory of all CHERUBS lost and in celebration of CDH Warriors and the awareness that they share on a Daily basis. http://seattleparadeofcherubs.eventbrite.com/
CHERUBS is working with Children's Memorial Hospital to put on the Chicago Parade of Cherubs. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizinng the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Oz Park to pay respect to all those Cherubs lost. Then they will be walk 1.2 miles by the hospital and the Ronald McDonald House (which so many CDH families frequent during their child's often long stay at the hospital). Close to 70 people (from three states) are expected to participate in this awareness event. http://chicagoparadeofcherubs.eventbrite.com/
The St Louis Parade of CHERUBS takes place on April 19, 2012 and is a joint project of CHERUBS and the St. Louis Fetal Care Institute. It will include a walk around the hospital grounds, a presentation, candle lighting and lighted balloon release. http://stlouis2012paradeofcherubs.eventbrite.com/
Oregon & SW Washington members of CHERUBS will be holding Portland's "Parade of Cherubs" for the International CDH Awareness Daily Celebration in conjunction with several other cities in the USA & UK on Thursday, April 19th from 1:00 pm - 3:00 pm at Legacy Emanuel Hospital in Portland, OR. The local event is being coordinated by CHERUBS Oregon Co-Rep grandmother Shelly Moore & mother Alicia Gilbert to CDH angel Jayden Gilbert who died in March of 2010 after a 23 day fight against CDH & complications, and member Andrea Martin whose 12 year old daughter Sarah is a CDH survivor. http://portlandparadeofcherubs.eventbrite.com/
CHERUBS United Kingdom Representatives Clair Maher and Melanie Parsons are working with member Cara Stevenson to coordinate a national Light Up the Night Event with candles and lanterns.
https://www.facebook.com/cdhsupport#!/events/248708328546723/
A Virtual Parade of Cherubs will include 100's of CDH families submitting stories, photos and video over social media. More information can be found at https://www.facebook.com/CherubsVirtualParade
Congressional Bill - http://www.cdhbills.org
Saturday, March 10, 2012
Help us reach 10,000 views on YouTube
This video is of the son of CHERUBS President and Founder, Dawn Williamson. Shane Torrence was born on January 28, 1993 with left-sided CDH and multiple other birth defects and complications. He lost his fight at age 6 on September 11, 1999.
This video is the most viewed personal CDH video on YouTube (the most viewed CDH video The Jammies "I'll Never Let You Go" dedicated to our cherubs). Currently, it is just under 9000 views. Our goal is to raise awareness by asking enough people to view it to raise that to 10,000 by April 19th.
Will you help? Please share on your Facebook or Twitter.
This video is the most viewed personal CDH video on YouTube (the most viewed CDH video The Jammies "I'll Never Let You Go" dedicated to our cherubs). Currently, it is just under 9000 views. Our goal is to raise awareness by asking enough people to view it to raise that to 10,000 by April 19th.
Will you help? Please share on your Facebook or Twitter.
Friday, September 9, 2011
12 Years Ago...
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.org or click on the links above.
Forever missing a part of my family...
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