Friday, September 11, 2015

September 11 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today is my son's angelversary.  16 years ago this evening, Congenital Diaphragmatic Hernia took his life after a very brave 6 and a half year battle.

Shane should be 22 years old right now with just one special day, not two.  There shouldn't be a dash on a headstone between January 28, 1993 and September 11, 1999.   That dash is supposed to hold an entire life story of growing up, going to college, getting married, having children, growing old.  Instead that dash stops at just 6 years old.  He will never get his driver's license, his first kiss, fall in love, watch his child be born or hold the hand of his elderly wife.   I will never watch my son walk across a stage to get his diploma.  I will never give him parenting advice.  I will never visit his home.  I will never be a grandmother.  CDH took all of that away.  CDH is that dash on his headstone.  His whole life ruled and taken by a cruel birth defect that he did not deserve to be burdened with. 

This morning, I stopped by the cemetery in Virginia as I head out on a long drive to a medical conference for Congenital Diaphragmatic Hernia.   This September 11th not as hard as 2001 when terrorists hit our country.  This September 11, 2015 is still hard as I relive the same day in 1999 as I do every single year.

I wrote this in 2002:

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

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

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

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

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

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

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

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

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

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

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

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

Even I as I post this here for you, I feel every emotion of that day flooding back to me.

Please, Mr. Sparks, please help me to stop this from happening to other families.   Please help us to raise awareness and give back those dashes on headstones to very old men and women who live long lives despite CDH.   No parent should ever have to bury their child.


Dawn M. Torrence Williamson
Merely Shane's Mommy

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