(Candle lit for Shane and all the other cherubs on National Children's Memorial Day in December)
Dear Mr. Sparks,
Today the CDH community is grieving the loss of 2 children lost yesterday. A newborn wasn't strong enough to fight CDH and a 3-year-old was strong enough to fight CDH but his worn out lungs couldn't fight off RSV too.
After 20 years you would think that I'd be tougher and more emotionally distanced so that I can do my job. Most days I am. I have to think like a doctor in that if I break down every time we lose a patient, I would be useless to help anyone.
But when we lose an older cherub, it hits very close to home for me. I know exactly what those parents are going through. I know the false sense of security they felt after bringing their child home the first time. I know the shock of losing their child. I know that they had to drive away from the hospital and leave their son's little body while the car seat and toys were still in the backseat. I know the feeling of having to walk into their house and close the door to his room because the pain is too much to bear to see his empty bed. And I know that the memories, while blessings, will attack their heart everywhere they go... in every relative's house, church, hospital, restaurant, store... every place he went with them will remind them that he's gone and there will be no place to escape. And I know the pain of planning the funeral for a child, of going through his clothes and picking out the last outfit that he will wear, the toys to bury with him, of holding him for the last time at the funeral home and trying to pretend that he's not cold and that it's not the last time. And I know how it feels to want to run and run and deny that any of it's real and happening but at the same time resolved to do the best that you can as a parent to make sure the funeral is perfect because that's all you have left to do.
All that isn't even the worse part. Visiting the cemetery and laying on the grave just to be close to your child again and then having to walk away and leave him there in the cold, in the rain and force yourself to believe that he's not really there. Because no matter how strong your faith is, how much you believe that he's in a better place... that is still your little boy and the instinct to protect your child does not die with them.
But the very worst of it all is the feeling of your arms aching, painfully, physically... to hold a child that isn't there. Much like the phantom pain of an amputee, it's unexplainable but real. The pain is real and no amount of aspirin or tears stops it.
So I sit here, still stunned of the news of this little boy... little Isaac. I didn't know his family, I only had a few conversations with them. They weren't active in our charity but I did keep up with Isaac's journey. I never had the pleasure to meet Isaac. But my heart breaks for them regardless. I haven't posted his photo here on this letter, though I wanted to, because I don't have their permission. He was such a beautiful little guy, such a fighter. And I can't stop thinking about them and wishing they never knew what this pain felt like.
Mr. Sparks, Isaac did not have to die. The 800 other children killed by CDH every year did not have to die. My son did not have to die. With research funds, surgeons can create better materials to repair CDH and genetics can find ways to stop it from even forming in utero. But without awareness, the world doesn't know about CDH and therefore, doesn't care.
So on behalf of all these children and their parents, I ask you to please sit down with me and talk to me about CDH. Please consider a storyline about CDH. Please help us so that in the very near future, no more parents have to drive away from the hospital without their children.
And I ask you to please pray for Isaac's family and all the families who are grieving because CDH took their children.
Dawn Torrence Williamson
Brokenhearted CDH mom