Dear Mr. Sparks,
I’ve been trying to write this letter for some time now but I wasn’t quite sure where to start. My son is a CDH survivor. He was born in 2008 and sailed through his recovery spending a mere twelve days in the NICU. I don’t share his journey often. Not many CDH babies escape their NICU stays in twelve days. Some don’t escape at all. I cringe when an expectant CDH mother asks me that highly anticipated question, “So, how long was his NICU stay?” I always answer honestly and say a quick prayer that their baby’s journey will be short an uneventful. I can’t answer why my son’s journey was so short while other babies spend months in the NICU or don’t come home at all. It doesn’t seem fair. Why him? Why me? There are always questions.
I’d love to tell you more about my son. He’s an awesome kid. He’s had a lot of struggles that most people don’t know about. I won’t tell you how every meal is still a battle. When he was a toddler I used to cry after every meal that he didn’t eat. Did I mention all the nights I crawled into his room just to watch him breathe? Yeah, he’s seven now and I still do it nightly. He has a big scar on his chest that he’s just starting to ask about. “Did it hurt when the doctor cut me open?” “Mom, what was wrong with me?” “Why don’t you have a scar?” He’s a boy with many questions that come at bedtime when he’s trying to fall asleep. They continued last night after attending a fundraising event for CHEURBS. “Mom, why does Dawn (our President) introduce me to people as a survivor?” Then the heartbreaking question after I explained it to him, “How many didn’t survive?” There just aren’t any words for that.
There’s someone else I want to tell you about, my daughter. She was four years old when her brother came along. She was devastated to learn that her new baby brother was being transported to a big city hospital and she couldn’t see him. She didn’t understand what was wrong with him. A bright and highly sensitive child from birth, simply telling her he had a “boo-boo” didn’t cut it. She felt the pain in her father’s voice when he couldn’t come pick her up to go to the hospital. She read the sorrow and fear on her grandparents’ faces. Today she’s the child that has been most impacted by CDH. Strange, isn’t it?
My daughter has a severe anxiety disorder that manifested during my son’s first year of life. If you met her, you’d probably be impressed by her quick wit, her ability to talk about CDH in adult terms, and you’d for sure notice and her piercing blue eyes. You’d probably say, “Wow, she how’s old?” I’d tell you she’s eleven, she works hard at raising CDH awareness, and has had a journey I wouldn’t wish on any child. I know that my son’s CDH did not cause my daughter’s anxiety but when I think about all the anxious ways I parented my son during his first year of life it’s no shock that she mirrored my behavior. Ask any CDH parent when they were able to relax and I’m sure they will say NEVER.
Mr. Sparks, it is my hope that you will read each and every letter that is posted and bring awareness to this deadly birth defect. I hope you remember not only the babies born with CDH but the siblings that are impacted daily. Please remember our babies in heaven and our survivors that may be facing struggles and complications today. The fear never really goes away for all us. Will you help?