Dear Parent,
You see your friend's healthy newborn and you're silently crying about your child's diagnosis of Congenital Diaphragmatic Hernia. You feel invisible and terrified. I recall those days when the diagnosis was just handed to me in the way one child might hand a broken toy to another child. I didn't know what I was looking at, but I knew it was bad and I bawled.
I want you to know that it felt as if the doctor was guaranteeing that my child would not live, but that was absolutely not the case. I remember leaving every doctors appointment feeling dejected, no matter what the odds against my child were. I remember when my fighter was born and I stood bawling once again (I did that a ton) next to an elevator door, and this kind stranger gave me a hug. She offered to talk, but I couldn't discuss it at that time.
These days I leave the children's hospital after my son has a series of appointments and tests, often realizing our incredible fortune. My bawling days seem to be well behind me. We look at what we have that so many others don't: the ability to walk, the ability to see, the opportunity to receive treatment and monitoring at one of the best hospitals in the nation. We acknowledge that this made us stronger and presented us with the chance to serve other families. That's what I want for you too. I want all of this fortune for you.
I want you to know that the survivors of Congenital Diaphragmatic Hernia that we have talked to are some of the most optimistic, powerful people there are. Instead of thinking of all of the suffering your child might face, think of how much of an impact your fighter (angel or survivor) will have on your community. Think of how absolutely, astoundingly amazing your son or daughter is already.
There will be nights you sleep in armchairs by your fighter's bedside. There will be so many nights you don't sleep at all and you stay away bawling as I did. You will spend a lot of time putting your child's life in the hands of doctors and nurses who you don't know at all. Sometimes they won't meet your standards of care that you had hoped for.
No matter what, don't be afraid to hope for a cure. Someday there may never be another Congenital Diaphragmatic Hernia patient who trudges to the children's hospital for a long day of appointments. Someday no parent will have to bury their child because of this defect. No marriages will end because of the financial and emotional strains this can cause.
No matter what, take care of yourself too. Bawling days are perfectly fine, but have days where you pick yourself up and you fight for a cure and you hope for a brighter future. Have days where you take yourself on nice walks and get a massage. Eat well and exercise at every opportunity you have to do so.
Celebrate every milestone achieved and keep in memory those who have gained their wings. Mourn and cheer and create bonds with strangers and family that can't be broken by distance and medical trials. Advocate for your child and for the families who are also going through this.
Someday you'll break free from the walls of the hospital and you'll rarely see that hospital again. You'll renew passions and there will be laughter. You'll celebrate and you'll have a lot less bawling days.
My fighter is five years old and he does not suffer horribly from this defect. He played baseball after we thought he never would play sports. He swims, runs, and plays like any other child. We keep hope for you. Reach out anytime.
