Sunday, January 25, 2015

January 25 - Dear Nicholas Sparks

Dear Mr. Sparks,

I took the day off of work (yes, a rarity even on a Sunday) to work on my scrapbook albums.

Scrapbooking and genealogy are my hobbies, occasionally painting and decorating as well.   I like to remember things down on paper and photos because my memory has never been great and seems to be getting worse the older I get.

Today, I am working on scrapbooks of CHERUBS' first European CDH Conference in Dublin last year as well as the week I traveled around Ireland with friends.  I love North Carolina, but a huge part of my heritage and heart belongs in Ireland.

I started to write to you about that trip and the conference but I think instead, I want to share with you an iReport that I did for CNN about it:


Traveling for a Cause


It was a trip to Dublin in August for the charity, CHERUBS that healed some scars on this grieving mom. The international charity works with families of babies born with Congenital Diaphragmatic Hernia, a rare and often deadly birth defect that strikes 1600 babies a year.

This was the very first conference in Europe for CDH families, one that had been planned for over a year. It was also our second major conference of the year, the first held in Washington DC in June. Add in the normal workload, 2 reality shows and lots of great awareness this summer, it was time for a much needed vacation.

So I planned a drive around Ireland with another member. A full week off of work - something that never happens for me due to my own workaholic tendencies and obsession with helping end CDH. We planned every detail of the trip; the driving schedule, tourist trap itinerary, stays in castles, stays in quaint Irish bed and breakfasts. Girls week in Ireland! Then another friend from the charity for almost 2 decades decided to join us and bring along her 18-year-old son.

So after the conference, off we went. I wasn't sure how Brandon would feel about tagging along with Laura, Tara and I - 3 middle-aged women. But he seemed to have a lot of fun. It may have helped a bit that the legal drinking age in Ireland is 18 and he just turned 18 in July.

I also wasn't sure how I'd personally react to having Brandon with us. Not because I don't love this kid like family but because he was a friend of my son, Shane. Shane who was struck down by CDH at age 6 and a half. Brandon, Shane and Logan were the 3 cherubs. They were really the only friends my son had, all 3 born with CDH.

This year was harder as Logan's mom, Barb, died unexpectedly shocking us all and bringing up many memories from years ago when all our boys were little, when we all were very active in the beginning of the charity. When we all met face-to-face for the first time in January, 1999.

In 10 days it will be the 15th anniversary of my son's death on September 11, 1999. Yes, that day but 2 years earlier. And yes, just months after we all met that first time.

Here it is, 15 years later and Tara is like a sister to me and Brandon like a nephew. Laura, like a sister too as well, bought to us through losing her nephew, Owen, to CDH a few years ago. And here we all are driving on the left side of the road in a little Volvo on winding roads the Irish countryside trying to check off as many tourist attractions in a week as humanly possible.
We have a campaign at CHERUBS called "Save the Cherubs" (what we endearingly call children born with CDH). We put wings on these kids to raise awareness because of the 50% of those children who do survive CDH, 99% look completely normal. That is wonderful for these children, but not so great for awareness. Sticking wings on these kids brings attention to the birth defect. Little awareness means little research funding. With 800 of these children dying each year in the U.S. alone, funding is desperately needed. So around Ireland we drove, taking lots and lots... I mean 1000's of photos. Many included wings. A travel tradition that I started when in Europe last year for a medical CDH conference. We put wings in front of landmarks and take photos. We then turn these photos into posters. Posters that mainly aren't printed due to lack of funding but we have hopes of someday printing them! Photos of wings in front of the Eiffel Tower, Big Ben, Dutch windmills, etc, etc. Then back in the States with photos of wings (and sometimes kids wearing them) in front of the Statue of Liberty, Capitol Hill, the White House, Walt Disney World, etc, etc. It's a tradition now.

And it makes me feel like Shane is traveling with me in a way. To a grieving mom, that means everything to hold on our children in some way that might help others and let them live on.

Brandon was a great sport about wearing wings, often just putting them on without me asking him too. He's been trained well over the years that as a survivor of CDH, he has a responsibility to raise awareness to help other children. Tara is a great mom to teach him that. And it was a running joke all week that he'd do "whatever Dawn said" for the charity.

But now, he's 18 years old. Hardly a little boy. Hardly the 2-year-old I met in 1999, or the kid who used to fight with my kid over whether Barney or Sesame Street would be on the TV next. Now, he's all grown up.

It's hard to not think at least once about how Shane would be as a young man. Would he be tall like me and his dad? Would he be skinny like me at that age or muscular like his dad? What would he like to do? What music would he be listening to? Would he have fallen in love yet? Graduated high school yet? What would he have been when he grew up? Would he and Brandon be goofing off together on this trip, driving us nuts?

You would think that those questions would have been in my mind the entire 2 weeks in Ireland with Brandon and all the other survivors at the conference, but they weren't. You see, after 15 years you learn to stop asking why because there is never going to be an answer. Instead, I started to see my son in these cherubs... and that makes me happy, not sad. I celebrate their accomplishments, I cry over their losses. I am eternally grateful to be a part of their lives. I sometimes get too emotionally attached for my own good and get my heart broken again when we lose one but I'm a CDH mom and I know what these kids have gone through to just be here. I know what their parents go through each day. How can I not fall in love with all these beautiful, extraordinary, heroic children? It's an occupational hazard.

And Brandon is family to me now. He knows I will drive from North Carolina to Ohio for him if he needs me or if his mother needs me to kick his butt. Driving around with him and Tara, Laura... it was driving around with Tara, Brandon, Laura, Barbara, Shane and Logan (who is doing find now too). It was raising awareness for all our kids. And we had a ton of fun doing it! See, I'm never really off the clock. ;)
We went all over Ireland and went to Belfast on a day trips as well. We took photos with Brandon in wings to represent CDH survivors and photos of just wings to represent Shane, Owen and all the cherubs lost. We climbed the Giant's Causeway. We all kissed the Blarney Stone. We all found four-leaf clovers at the Cliffs of Moher. Ireland welcomed us with not 1, but 3 rainbows. From Dublin Castle to Blarney Castle to Galway, Waterford, Kilkenny, Cashel, Cork and Connemara we took photos and laughed, explored and ate our way through Ireland.

And we went to the Hill of Tara, the mystical center of Ireland, home of all the High Kings and took photos there. Then we went to the gift shop and in a corner was a sale section that had little waterglobes with cherubs with various names on them. There were only about a dozen but the very first one said "Shane". My sign from my son that he indeed was with us on that trip.

When we pulled up the Shannon airport after a week of an Irish fairytale, none of us wanted to go home. And Brandon hugged me and said he loved me and I felt Shane there too, hugging us both.

Now Brandon is trying to convince us to hold a CDH conference in Brazil.

You can learn more about CHERUBS and CDH at

That's the article.   You might recognize Laura Tomczyk in the photo.  She met you at the book signing with me.

Thank you for letting me share my memories with you.

Dawn M. Torrence Williamson
Grateful CDH mom, charity president and friend

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