Saturday, January 31, 2015

January 31 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today I have been thinking a lot about miracles and what they mean.

When Shane came home from the hospital, I was told that he would never see, hear, walk or talk.  That I was "taking home a vegetable to die".   The doctors were so convinced of this fact that his surgeons and pulmonologist bet money on it.  They all lost that bet.

When Shane was home less than a month, his sight started to return.  The first thing he saw after regaining his sight (lost to brain damage at 4 months old due to lack of oxygen from pneumonia in the hospital), was lights on our Christmas tree.  We could see his eyes focus and follow the lights and he would turn his head towards them wherever we put him in the room. 

When he was 2, he was off of the ventilator and completely breathing on his own.

By 3 he was walking.

At 6 years old, we took him to his audiologist because he kept pulling his hearing aids out and throwing them the across the room.   We thought they were broken.   Tests showed he no longer needed them.   I can still see the look on that doctors face as he kept shaking his head and saying "I've never seen this before".

I believe all these incidents were miracles.

Over the years I've seen other cherubs granted miracles.   Little Killian just celebrated another birthday.  If you had told me he would be here riding around an electric truck like other young boys, I would have said you had the wrong kid.  He was so sick, he literally hung on by a shoestring more times than we could count.  We posted more emergency prayer requests for the baby boy than probably any other cherub - because he was always in a medical emergency.  Those prayers paid off.

I've met adult survivors who beat that 1% odd to still be here after being born without the medical technology most of our kids need today to survive.

I've heard stories of dozens of these children who were given Last Rites or whose parents were told they wouldn't make it through the night and yet they are still here.

I do believe in miracles.

When I say that, many people ask how I can still believe when my son died.   When I am surrounded by sickness and death of young children and babies every single day.

I believe miracles can and do still exist even when you don't get the results that you so badly want. 

Shane's miracles are no less miraculous because he died in the end.  We all die in the end.  It doesn't discount what happens between birth and death.

When I was 12 years old, I was struck by lightening.  I was carrying an umbrella and it was hit.  I felt the heat go through my body and out of the thick rubber soles of my 1980's tennis shoes.  Other than a slight burn on my feet, I was completely unharmed but knocked to the ground.   4 or 5 other kids were under that umbrella with me.  None of them were hurt either.   I believe that was a miracle.

I lost my baby sister, Debra, to cancer at 22 years old in 2002.  She left behind 3 young children and even though Rhabdomyosarcoma has a 100% mortality rate, she fought it for 2 years with every thing she had and she never gave up on that miracle.  In those 2 years, she got to know her children more.  She turned her life around and she found faith, even when she knew she had to say good-bye.   She found her worth in this world and meaning for her life and the miracle is that she ever found that at all.   I thank God every day that even though she suffered horribly, she found that peace and had that time to mature.   She could have died in a car accident without ever having really known her children or making peace or finding forgiveness.  Even though she isn't here either, she did get a miracle.

Another younger sister, Trisha, was diagnosed with breast cancer this past summer.  She found a lump and went to the doctor.   That lump was benign but the tiny lump that they found during those tests, the lump so small she wouldn't have felt it for months possibly... was malignant.   It was caught so early that her prognosis is very, very good.   She could grieve for the breasts she lost or the fact that she has cancer at all but instead she has a miracle to rejoice over.   She will live.   Her cancer was miraculously found so early that even though she opted for a double mastectomy, she will not have to undergo chemo and radiation.   She gets more years here with her husband, children and grandchildren.  She gets time to take God's miracle and allow Him to use her to help others. 

I'd like to share another story about what I call a miracle.

After 2 years after Shane died, I was alone in the same car that I had driven him around in a thousand times.  I was pulling out of a store parking lot, not thinking about Shane at all at that moment and trying to make it across traffic at sunset.

I looked to the right and the sun was glaring so much that it was very hard to see.   I looked to the left and then the right again to make sure it was clear to pull out to turn left. 

As I pulled out, I felt someone kick the back of my seat and I heard Shane laughing.   I instinctively slammed on the brakes of the car in the middle of the highway.   The transfer truck that missed me by less than 3 inches blasted his horn at me and the wind of him speeding by turned the car in it's place.   It all happened within 5 seconds but I could hear Shane laughing and could feel him kicking my seat like he had done so many, many times when he was alive.  I could feel his spirit in that car with me.

I believe that was a miracle.  I believe at that moment, Shane and God saved me from certain death that would've have happened had I not hit the brakes in time to avoid being jackknifed by a truck going 50 miles an hour.

Some would say that's not a miracle but my own stupidity at not seeing that truck in my blindspot or maybe insanity that I imagined hearing my son at that moment.

But I have a seen enough in this world to know that miracles do exist.  That every thing is not black and white or scientifically proven. That there are many things we don't understand.   But I do know that it wasn't my time to go yet at that moment and that there is more I am here to do.   In the midst of all my grief at that time, I got a miracle.

I do believe that miracles happen all the time, every where and if we will just look for them, we can see them.  How is it not a miracle that any of us are here in the first place?  

You write a lot about miracles in your books.  Thank you for believing and sharing that belief as well.

Dawn M. Torrence Williamson
A Walking Miracle

Friday, January 30, 2015

January 30 - Dear Nicholas Sparks (Guest Blogger Hope Clyde)

Dear Nicholas Sparks,

Today is January 30th, 2015. I wanted to share an experience I had yesterday, with you.

I have a son named Tyler. He just turned 13 and he was born with Congenital Diaphragmatic Hernia (CDH). It's a condition that  we must always stay on top of. We are part of the "lucky" 50% that our child survived.

We went in this week for his annual check up with our doctor. Having a child with CDH, you learn really fast that nothing is "normal". At his check up, our doctor checked his spine for scoliosis (very common for kids with CDH), we reviewed his reflux meds, ordered some tests and discussed having a miracle sit before us.

Tyler got a chest x-Ray to make sure his large Goretex patch that was made as an artificial diaphragm when he was 5 days old, is still doing its job at being a barrier to the organs between his chest cavity and his abdomen. This is extremely important. If his diaphragm tears, Tyler can go in to respiratory failure and die. It's a reality that scares me every single day of my life. I have no reason to think there is a problem with his diaphragm right now, but we always do chest x-Rays to make sure!

Another thing we will always have to keep an eye on is pulmonary hypertension. Pulmonary hypertension is an often fatal complication of CDH. Our doctor scheduled an echocardiogram to check for signs of pulmonary hypertension.

We went to our local hospital to do the echo yesterday. We got checked in, went back, everything was going fine. Tyler took his shirt off and laid on the table. It's been quite a few years since he's had an echo, so I was explaining everything that was happening. He was pretty anxious just because he didn't know what to expect.

The tech was going along as expected but then he called in the radiologist. No biggie, I thought. They started speaking in medical terms I didn't understand. I know a lot of medical lingo, it comes with the territory, but they were talking about imagery. It felt very secretive to me. I hated it. I didn't know if they were seeing something concerning or it was a "show and tell" type of situation. I know Tyler's insides don't look like most people's, so I was hoping they were just curious.

They kept going..... and going..... and going......

I was getting pretty nervous. The what if's started running through my head. What if they were seeing something suspicious? What if my 13 year old son was showing signs of pulmonary hypertension? This kills people daily, you know? Like in a vortex, my mind went spinning in circles. Panic was creeping up on me. I could feel my face was flushed, my heart racing, I was getting restless. Tyler has come so far, this setback would be devastating.

Well, that 20 minute echo turned into a 55 minute torture session for this mom.  They finally ended and I asked if they could tell me anything about what they saw. The reply I got was, "I wouldn't be too concerned". Really? Then why not just tell me you're just excited to see something different? I was so frustrated but relieved. I feel like we have dodged a bullet, for now.

Tyler will never be "out of the woods". We will always have these situations to deal with. Forever. I'm so grateful to be dealing with scary echoes instead of death anniversaries.

This is the reality of the long term effects that CDH has on a family. Thanks for your time.

Hope Clyde

Thursday, January 29, 2015

January 29 - Dear Nicholas Sparks

Dear Mr. Sparks,

I'm in the middle of taxes and a very important CDH Research project today so I am going to have to cheat a little bit on my letter writing and make this much shorter than usual.

Today, I want to share with you the CDH Song.   I wrote this on a plane ride on an airline napkin on the way to our CDH Conference in San Antonio to try to help the kids better understand and explain Congenital Diaphragmatic Hernia to others.  

Lyrics to "I'm a Real Live Cherub":

I'm a real life cherub but I don't have wings
When I was a baby the doctor had to fix things
My tummy was in my chest and it was hard to breathe
The doctor put it all back and here's where he fixed me!

Sung to the tune of "I'm a Little Teapot".  Professional song writer I am not.   But the kids are pretty darn adorable!

Dawn M. Torrence Williamson
CDH mom who will never win a Grammy

Wednesday, January 28, 2015

January 28 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today would be my son's 22nd birthday.

Like every other year, I wasn't able to sleep last night because every single second of his birth kept replaying in my head.   I've been short-tempered for a few weeks because the anxiety of the day is still overwhelming even after all these years.   I'm angry that CDH took him and angry that 20 years later, we're still struggling to help these kids.  Mostly I'm angry that I'm still screaming into the wind trying to stop CDH.   A determination to end CDH is the only way to hold on to my son.

Like every other year, I hit the snooze button on my alarm clock and laid in bed not wanting to face the world.  I cried and then pulled myself together like every other year and headed into work.

Some friends posted Shane's photo on their Facebook walls today and the charity's birthday and angelversary list for the day included him.  It helps to get through the day knowing others are thinking of him too. 

So here I am.  To most people it's just a Wednesday.  To me, it is a day to remember my hero and miss him. 

Around lunch, my mom will call to check on me and tell me that she's thinking of Shane.  Inevitably, she will say "I just can't image him at this age".  It's the same thing that I say about my sister when I call my mom on her birthday 11 days before Shane's every year.   I'm sure my mom will walk down to see him at the cemetery that's on her property.  Shane loved his "Nanny" and she loved him.  I'm so grateful he had such a good grandmother, and still does.

I will leave the office at 5:00, maybe a bit earlier to run to the store before dark. 

Instead of running to the grocery store to buy a cake mix I get to go to the floral counter and ask them to put helium in CDH awareness and Sesame Street balloons.  And when the nice person behind the counter asks me what the CDH awareness stuff means or how old my child is, I will swallow my tears and try to say something cheerful and lie that my son is 6 years old.   Because in the past I've truthfully said that was I getting balloons to send to Heaven and ended up a basketcase in the middle of the store.  Or watched the store employee start crying and then I console them.   15 years later, I know it's easier to just lie and get in and out of there with minimal emotional implosion.

Instead of posting celebratory photos on social media full of fun, family memories, I will instead post the same photos I've posted a million times.  Because they are all I have.  And I am grateful to at least have them.

Instead of singing "Happy Birthday" to my son, I will drive to the cemetery in Virginia to put a new matchbox car on his headstone or if it's during a work week I can't take off from (like this year), I will only quietly walk out to the golf course behind my house and let balloons go.  Then I will watch them as they glide past the row of pine trees and up to the clouds.  Always in a group together except for one that seems to lag behind as if it doesn't want to leave me and keeps looking back.  Sometimes my husband is with me.  Sometimes our dog is running circles around me wanting to play.  Sometimes I am just alone.  But every time I hope for some small sign from my son. 

I had my son for 6 and a half years.  I had a false sense of security that we had defeated CDH, that he was special and chosen and a miracle.   CDH tricked us.

 His Birth Day

 1st Birthday

 2nd Birthday


 4th Birthday

 5th Birthday

 6th Birthday

But I am blessed.  Because we had 6 and a half years with him.   Thousands of CDH families do not get those years.  Many don't even get that first day of their child's birth.

I am blessed.  I got to bake my son cakes and buy him gifts.  I got to help him blow out candles and open presents.  I got to send out invitations and decorate and celebrate.

But I am greedy.  I wanted more birthdays.  I miss my son.  He should be here with me.  Especially on his birthday. 

So today, I will try to keep busy and work on charity projects that mean a great deal to me in order to honor his memory.  I fight CDH, I try to help a family, I try to raise awareness, I donate in his name.   I want the day to be about him, but not about just him.  I don't want other children to not be here to blow out their birthday candles.  

Dawn M. Torrence Williamson
Shane's grieving mommy

Tuesday, January 27, 2015

January 27 - Dear Nicholas Sparks

Dear Mr. Sparks,

This being our charity's 20th year, we are holding a $20 for 20 Years fundraiser, asking families to give back and donate $20 to help other CDH families.

$20 is a lot of money for many CDH families so we want them to get their money's worth for their donation (in addition to all of our help over the years).   Part of the plan to do that is for every $20 that families donate or fundraise for this project, they will have 1 quilt square on the CDH Awareness Quilt.

For 2015, this quilt will be virtual on our homepage, displaying photos of these beautiful children. 

In 2016, this quilt will become real.  Hopefully we will have volunteers helping or I will be doing a whole lot of sewing but this will be worth it.  

The CDH Awareness Quilt will go on tour and be displayed at large events, in hospitals and in public buildings to raise awareness of Congenital Diaphragmatic Hernia.  

It is our hope that there will be so many photos submitted that we must create more than one quilt.   The more quilts that we have, the more places that we can raise Congenital Diaphragmatic Hernia.

Maybe, just maybe, our quilt will be so large that we can display it in Washington DC on April 19, 2016.  

We dream big around here.  It's the only way to achieve big things for these children.

Dawn M. Torrence Williamson

Monday, January 26, 2015

January 26 - Dear Nicholas Sparks (Guest Blogger Angie Kelly)

Dear Nicholas Sparks

On December 20, 2013 my life was completely turned upside down.  
This was the day that we found out if we were going to have a boy a girl.  We had scheduled our ultrasound for before Christmas because that year part of my 9 year old's Christmas present was finding out if he was going to have a little sister or brother.  We found out that he would have a little sister, a couple of hours later we found out the rest of the news from our ultrasound.  His little sister was going to be born with Congenital Diaphragmatic Hernia (CDH).  We had to wait until January 9 for it to be confirmed, because of offices being closed and shortened hours during the following holiday weeks.  I cried myself to sleep every morning when I would get home from work, but still had to hold everything together for my son.  I couldn't bring myself to tell him that there was something wrong with his sister.  The more that I researched what was going to be our future the more that realized that I not only had to tell my son that his sister would be sick, but that she may never get to come home with us.  More and more time passed and I still couldn't tell him.  I was running out of time, and I didn't know what to say.  Finally about a month before she was supposed to arrive I broke down and told him.  I told him that when Sierra was born she would have to stay in the hospital for awhile, and that she was going to have to have surgery.  I told him that she had a hole in her diaphragm that let her stomach move into her chest and that it was pushing on her lungs.  I told him that he wouldn't be able to see her for awhile.  I also had to tell him that I wouldn't be home either because Sierra would have to be in a hospital that was 2 hours away from home.  He cried for what seemed like forever to me, there was nothing that I could do to comfort him except tell him that I would call him every night and come home to see him at least once a week.  
A few days later while shopping he picked out a small stuffed bunny for her to have in the hospital, something that would be from her big brother.  Time was going by way to fast we set up a date to be admitted and induced on April 7 we would be checking into Sacred Heart Medical Center in Spokane.  This gave me a chance to spend all of Logan's spring break with him before I wouldn't be able to see him for awhile.  However on April 4, Sierra had a major change in plans for us.  She decided that she didn't want to wait any longer.  Unfortunately we were not able to make it to Spokane and she ended up being born in Lewiston.  At 5:30 pm Sierra Marie Kelly entered the world 8 lbs 9 oz and 21 inches long.  I didn't get to see her the MedStar team took her away to try and stabilize her and get her ready for her first airplane ride.  I lay there not knowing what was going on if she was ok, or would be ok.  As soon as they let me get up I got dressed and went to see Sierra.  The first time that I got to see my daughter she had tubes and lines everywhere.  She looked so small and helpless, I hated to say good-bye to her so that we could start the drive to Spokane.  As we pulled out of the hospital parking lot in our car Sierra was pulling out of the parking lot in an ambulance.  Because she was a newborn she couldn't go on the helicopter, she had to go by ambulance to the airport so she could go by plane.  I spent the next couple of hours in the car not knowing how she was and if she would be ok when we got there.  
When we got to the NICU we were able to see her for a few minutes before being pulled away by the Dr.'s to talk to us about her condition.  There were so many nurses and doctors crammed into that small room there was hardly any room to stand.  They had her on an oscillating ventilator that was causing her whole body to shake, her color looked almost blue to me.  
When we went to the conference room with the Dr.s they told us how severe she really was.  They gave her less than a 20% chance of surviving, and told us that she would need to be placed on ECMO to help her heart and lungs recover.  But with her being on ECMO there were possibilities of other complications.  While on ECMO she would have to be on blood thinners that put her at high risk for internal bleeding including brain bleeds, and there was no guarantee that it would work.  We signed the consent forms and were taken to another part of the hospital to wait while she underwent the procedure.  They finally took us to a "sleep room" for the night because the procedure was taking longer than expected, because she also had to be moved to a different unit so that there would be room for all of the extra equipment that she needed.  
After tossing and turning for a couple of hours we headed back to the PICU to see Sierra.  Once again her room was full of doctors and nurses, the ECMO machine took up a big part of the room.  There were 2 tubes the size of my finger going into the side of her neck, one taking blood out and the other putting it back, there were 2 IV poles that were both full of pumps with different medications.  I spent the next 15 days staring at those pumps and monitors hoping that they would disappear.  On April 19 Sierra was able to come off of ECMO.  The circuit was good for 2 hours after she came off.  If she didn't need to go back on after 2 hours they would take the machine out of the room.  I spent the next 2 hours staring at the clock and waiting for each blood gas result to come back.  At 1:15 she was still holding her own, at that point I felt like I was having a stare down with the ECMO machine itself waiting for it to disappear.  I was finally able to breathe a small sigh of relief when it was taken out of her room.  The next day on Easter Sunday Sierra had her repair surgery.  I finally felt like we were on the road to recovery.  
When they did Sierra's surgery her defect was a lot worse than we had thought, she only had 10% of her diaphragm, but she made it through the surgery.  I spent the next weeks sitting by her bed waiting to be able to hold her.  When Sierra was 5 weeks old I was able to hold her for the very first time.  It took a team of nurses to hand her to me because of the ventilator and IV's.  Gradually we were able to hold her more often and machines started to disappear.  After 79 days in the hospital on June 22 Sierra was able to leave the hospital and come home to us.  
CDH has changed my life some for the better and some for the worse.  It made me realize how strong I really was and how strong my family was.  My son went 2 1/2 months only being able to see me once a week and talk to me on the every night before bed.  He has a little sister that he adores and is always worried about people staring at her or making fun of her because of her oxygen and feeding tube.  Our life no matter how screwed up it seems at times is complete with our cherub.  The endless Dr.  appointments, therapy, and feeding schedules.


Angie Kelly
Mom to a 9 month old CDH survivor.

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

Saturday, January 24, 2015

January 24 - Dear Nicholas Sparks (Guest Blogger Rebecca Hendricks)

Dear Mr. Sparks, 

                My name is Rebecca, I live in Panana City, Florida with my amazing husband and our beautiful 7 year old daughter.   We live what some people call the American Dream.  We live in a comfortable house with our 2 dogs and a cat.  We have a large back yard and 2 cars in the driveway.  I home-school our daughter while my husband works hard to provide for us.  We have a great love for the Lord and have a church family that we love.  It’s nothing to complain about and I promise you, I do my best not to.  Life wasn’t always this “picture perfect” though.  

                When I met my husband, Steve, back in 2004, we were then living in Salt Lake City, Utah.  I was engulfed in a lifestyle of partying.  Sex, drinking, partying, and I was looking out only for myself.  I had left my first child to live with my parents and continued down a path that was guaranteed to push me further away from my family and anyone else who cared about me.  I had been through one divorce and tried to lead a “normal” life but I was convinced it just wasn’t for me.  

                In 2005 I moved into a house that was full of like-minded party goers and not long after I developed a deep friendship with one of the men in the house.  The partying got old and all but the one roommate who wasn’t much into the partying lifestyle, moved out of the house.  Our relationship grew and we transitioned into a relationship pretty easily.  I still never looked past tomorrow but knew I was content with the way things were.   We continued to go to the bar occasionally but life slowed down a lot.  Late in the year I was dealing with some sinus problems and knew if I didn’t get antibiotics for the infection it was only going to get worse.  So we went in to a clinic and when she asked if I was pregnant, I quickly answered “no”, but when she left the room I told Steve that I actually wasn’t sure and that maybe we should pick up a pregnancy test when we went for my prescription.  When the pregnancy test was positive I wasn’t prepared for what would come in the months ahead.  I hadn’t even been sure I wanted more children, Steve had never expressed a desire to have kids and I already had one that I wasn’t taking care of.  

                By the time the first Ultrasound appointment came in February, we were both excited about the baby.  We had stopped going to the bar and the slow pace allowed us to refocus and think about what we wanted and we knew we wanted to have this baby and stay together.  When they told us we were having a boy, I was thrilled.  Maybe I felt like it was a new chance, since I had become pregnant with my first boy when I was only 17 and had left him to be raised by his grandparents, I foolishly thought I could restart life.  I hadn’t forgotten about my firstborn, but the situation was hopeless.  I hadn’t been able to sustain a relationship with my parents because of the lifestyle I had been leading, let alone think of how to ever have a relationship with my son.  This new baby felt like another chance at “normal”. 

                The pregnancy was going great and I felt wonderful.  I loved being pregnant, never had morning sickness and didn’t mind that my waist was growing rapidly.  My first Ultrasound had been at 16 weeks and we scheduled a fetal echo for my 20 week ultrasound because my brother had been born with a heart defect that took his life when he was a baby.  I saw the Ultrasound as a formality, since my brother’s defect wasn’t genetic, it seemed silly to even need it, but I was happy to have an extra ultrasound anyway.  As the Ultrasound tech began taking measurements and doing all the easy stuff, I remember thinking she looked confused and she was so young, I considered she might be new or something.  Then she excused herself saying she’d be back in with the doctor in a few minutes.  When the doctor returned, she showed him what she was seeing on the Ultrasound and then he pulled up a chair next to the exam table and began to explain what he saw.  He talked so calmly and with such assurance that, at first, I wasn’t concerned.  I think it was the point where he explained that babies born with this defect, Congenital Diaphragmatic Hernia, have a 50% survival rate.  

                That was the moment that really changed our lives.  Scared and confused I spent the last months of pregnancy on the CHERUBS website, chatting with other mom’s, researching the defect and preparing myself as much as I possibly could for what we should expect.  One thing I learned was that we couldn’t have any expectations.  

                I was able to reconnect with my mom, who became my biggest supporter.   She was compassionate and patient with me because of what she had gone through with my brother.  She went to every appointment she could and we began to spend a lot of time together, which meant I was also able to spend a lot of time with my son.  She even got Steve a job at the nursing home she worked for a picked him up for work each day.  The circumstances had caused me and Steve both to mature and we were slowly leaving behind the partying and frivolous lifestyle we had led not long before.  

                On July 19th, 2006 just before 8:00am my doctor came into the hospital to see how my induction was progressing and left saying it would definitely be a while and that he was going in to work and would be waiting for the page to come back to the hospital for the delivery.  He had barely made it to his office when the nurse was already calling him because it was time.  I remember him walking in just in time and I was crying.  I was so scared because I knew my baby was perfectly safe as long as he stayed right where he was.  The fear of what was to come almost paralyzed me but my doctor was reassuring and kind and just before 9:00am Collin was born and let out a tiny squeak before they whisked him through the window, into the NICU.  

                Once Collin was stabilized, EMS was called in to transfer him to the Children’s hospital right next to the hospital we were at.  We had already toured the NICU, met the surgeon and familiarized ourselves with where Collin would spend the rest of his journey.  I felt like helpless; there was nothing more I could do, except wait.  

                That afternoon Collin was put on ECMO, a heart/lung bypass machine that would help to stabilize his oxygen saturation levels.  Chest x-rays showed he had minimal development in his left lung and not much more in his right lung leaving him with little blood vessels in his lungs to support the blood system.  I knew enough about ECMO to know this was a sign of a much harder road ahead of us than we had hoped for.  

                The first few days not much changed and we attended rounds each morning hoping to hear from the Doctor that Collin had progressed enough to be taken off ECMO so he could have surgery.  Initially we were told that the surgeon for the job was not optimistic about surgery due to the risk associated with the ECMO but I knew, and the doctor overseeing Collin’s care agreed, that Collin would not progress at all unless they repaired the hernia.  His intestines would not move on their own and they were crowding the lungs too much for them to grow.  If I can be blunt, I was told that the surgeon didn’t want to do the surgery because he would die, but I knew without the surgery he would die anyway, so why not at least try.  Finally, surgery was scheduled, but it was rescheduled 2 times before he was finally prepped and ready on August 2nd.  My parents and grandparents came to the hospital to sit with us while we waited out the long surgery.  We were very hopeful, never even considering he wouldn’t come through the surgery and we were right but when the surgery was over, the surgeon was cold and detached as she explained his condition and outlook.  

                CDH has the name that because of the hole (herniation) in the diaphragm.  In Collin’s case, his body had never developed the much needed diaphragm as a fetus.  He was only 2 weeks old and had undergone a major surgery.  The liver had grown to 2 times the size of a normal infant liver and when they pushed all of his organs into place, there was more intestine than abdomen, meaning they had to leave his incision open with surgical tape over it and hope that his swelling would reduce enough to stretch the skin and sew it up.  When we got in there to see him, his body was so swollen, he was almost unrecognizable.  Before his surgery, we had seen him with his eyes open and alert, sucking on his ventilator tube and following us with his eyes.  Still, we clung to what little hope we had.  

                We had been at home in bed for only a few hours when we were woken up by a phone call from the hospital telling us we needed to come in.  By the time we got there, an emergency procedure had been done to drain the blood from his left lung.  That began a series of issues over the next couple of days and we began to consider Collin’s journey was coming to an end.  We were offered one of the bereavement rooms in the NICU to stay in due to his weakened condition, going home was just not an option.  On our first night there, we were still hopeful that the chest x-ray the next morning would show some air in his lungs.  The next morning there seemed to be the tiniest bit of air so we told the doctor we wanted to give it another day to see if there was any improvement.  This went on for 3 mornings and on the last day when the doctor and social worker came in to talk with us about our options.  I told them I understood what they were telling us but that we just didn’t want to give up on him because we were impatient.  There was such pressure on us (not from the hospital staff but just in general) to do something, make a decision, figure it out, but there was really nothing to figure out.  We were stuck and we absolutely didn’t want to have to make the huge decision to take him off life support.  What if we were wrong?  

                The night before and that day we had began to offer close friends and family to come and see him.  We had a slow flow of visitors throughout the day and realized around 4:00pm that we hadn’t really taken the time to sit and eat.  My mom was at the hospital for a visit and offered to pay for a pizza so we could eat something other than cafeteria food.  Just as we were looking through the phonebook for the nearest pizza delivery (in my head thinking, do we ask them to deliver to reception or to the NICU??) there was a knock on the door.  

                The social worker and doctor on call (not my favorite doctor) came into the room and began explaining that they had exhausted every means necessary to help Collin’s condition.  One of the extraordinary measures they had taken was to increase the ventilator flow higher than usual, hoping it would force the lungs to expand.   His lungs were in such a poor state that instead of expanding, the air was forced backwards through his heart and into the ECMO machine causing the machine to fail.  Nothing more could be done.  He was too weak to survive anything more.  It took me a few minutes and a couple of questions to realize that even though the machine had an air bubble in it and we were out of options that it was still, for the moment, doing its job and we would have time to hold him and say our goodbyes.  This was like a small gift to me.  I had seen many pictures of mom’s holding their lifeless babies, having not had the chance to hold them until after they had already passed.  I had silently hoped, in those times that I was fearful he wouldn’t survive this, that I would at least be able to hold him before he died.  

                It took a few minutes to get him unhooked from the IVs and sensors attached to him but then they carefully moved his unconscious body onto a pillow on my lap.  Steve positioned next to me, we began touching his skin and looking at his little feet and hands.  Steve took a turn holding him and the social worker took some pictures of us using a disposable camera the EMS workers had given us and our digital camera we carried around with us every time we were there.  I had always been a fanatic about taking pictures and now I’m so thankful I annoyed people with my endless picture taking.  

                As time went on, I became uncertain about where Collin’s pain level was. We had come to rely on the monitor to tell us how he was feeling.  Heightened blood pressure and heart rate is a sign of pain, but they had taken off all the sensors and now I had nothing to go on.  Even though the doctor had assured me he had been drugged enough that he was not feeling anything, I couldn’t help but wonder how they could be so certain.  The nurse must have seen the concern on my face and she leaned in to me and quietly told me that sometimes they need to be told that it’s ok to go.  “Go where?” was my first thought.  I didn’t even know if I believed in the “where” she was speaking of but I felt like I was willing to try anything at that point and so I said it.  It felt cheesy and unrealistic but I leaned down to Collin and said “Its ok baby, mommy and daddy will be just fine, you can go now”.   In the next few minutes, I felt a sense of peace come over me that was almost startling.  I didn’t have time to think about it long because as Steve held the stethoscope pressed on Collin’s chest, he slowly removed the pieces from his ears, shook his head and started to cry.  It was over.  The sense of peace I had was still there and strengthening.  I had no idea how to explain it except that there had been an angel in the room with its large wings wrapped around us from behind.  The explanation made no sense but it was the only way I could describe the supernatural peace I was feeling.  Once we had handed Collin’s body over and began to clean him up, I was almost giddy.  I kept smiling and telling Steve it was going to be ok.  I was so resolved in that fact, it was going to be ok and I knew it.  

                Over the next few days we took care of all the details to have Collin cremated and his ashes buried in the plot with my brother in the town I grew up in, in Colorado.  The cemetery, at the top of the hill overlooked the small town with the beautiful mountainous backdrop.  I couldn’t think of a more beautiful place to have his memorial service which was lead by a man whose daughters I had been friends with many years ago and remembered having sleep-overs in their welcoming home as a kid.  After the graveside service we had a small gathering in the park where we shared pictures of Collin and enjoyed the company of friends and family who came to show their support.  

                We spent the next couple of weeks staying with my cousin in Colorado until it was time to go back to reality.  One of the hardest things about grieving is facing the outside world, realizing that the lives of everyone around you have continued without you.  We knew we’d face shut off notices and an empty refrigerator when we got home.    There had been a little bit of money in the cards people had given to us but not enough to live on and it definitely wasn’t going to last long so we knew we needed to ask for help.  A friend suggested that we reach out to the Pastor of a church her mother attended and see if the church could help us.  I was willing to meet with him, we had to do something.  

                When I met Pastor John that day when I walked into Calvary Chapel, his short prayer with me seemed to almost confirm the source of the comfort I had been feeling.  The church offered some assistance and filled bags with food for me to take home but asked nothing in return.  I had expected to have to work off the financial assistance or something, but he showed no concern for being paid back in any way.  Later that week when the flower delivery service showed up at my door with a very nice plant arrangement from the Calvary Chapel staff, I felt loved and cared for in a way I had never known.  They had already done so much for us and this was such a kind gesture. I immediately called my mom and asked her to attend church with me.  

                Within a year, Steve and I had both given our hearts to Jesus and were married during my 9th month of pregnancy with a healthy, beautiful girl.  We named her Allie Joy and she’s always lived up to her name.  We can’t imagine our lives any different and as much as we miss what could have been with Collin, we trust that God makes all things work out for the good of those who love Him.  Grieving comes with no rules attached and no one really grieves the same way but I surely cannot imagine having to live this life without having God to guide me through it.  The old life is gone and God has made me new and I have Collin to thank for guiding me to the truth.  

Rebecca Hendricks

this is Steve, Jordan (my oldest), Allie (my youngest) and I in December, 2014  

 Collin, prior to surgery.   

 Saying Goodbye

 This drawing was done by a friend, Stacy Craig after I told her Collin's stor