Dear CDH Moms Who Have Cried in the Car Alone

Dear CDH moms who have cried in the car alone:

You are not alone.

I know what it is like to fax the forms, and read the books (or skim them), and make the appointments and google.

I know what it is like to sit in the meetings — and then as soon as that meeting is over you demand another one because the first time they didn’t hear you — or they may have heard but they didn’t listen.

I know what it is like to send email after email after email and they ignore you because you’re “just” the mom, so you bring them research from experts with fancy degrees (even if you have a bunch of fancy degrees yourself, because even with fancy degrees you’re still “just” the mom).

I know what it is like to talk to the pregnant CDH mom and tell her she can do this, too, she really can,  and you text her videos of your kid at swim class so she knows for sure that she can.

I know what it is like to wait on hold forever.

I know what it is like to have charts and nicely labeled three inch binders with 15 sections filled with 600 pages of documentation.

I know what it is like to teach your kid that every super hero has a secret weakness, and he does, too, but that’s only because he’s like Superman and his weaknesses will teach him to be strong and you believe it yourself — but no child should have to be this strong.

And you hope, and you pray, and then they deny your appeal again for the meds, or the therapy, or the device, or the reasonable accommodation, or the empathy — and they tell you how many other kids they have to worry about besides yours. So you lay wide awake at 2 a.m. thinking of what you can do differently next time.

I know what it is like to send in the dad to meet because at least he’s not the mom.

I know what it is like to have more specialist’s numbers in your phone than friends, because you may no longer have time for the friends — your new squad is the specialist that is willing to take the 2 p.m. peer to peer review from the golf course. And there’s no time for book clubs when you’re reading medical journals.

I know what it is like to agree to be in the next scientific research study. While you wait you spend all the money. And when you have spent all the money you pull out the Amex and don’t even flinch because even if they deny you a thousand times, you can’t deny your child.

I know what it is like to call the specialist with the 11 month wait and the one with the 14 month wait and you book both specialists, in case at the 11 month mark your kid is too sick to go and you can’t afford to reschedule and wait another 11 months. And you get the letter from the pediatrician, but no one respects a letter from a pediatrician who is not a specialist.

I know what it is like to dry your tears and get out of the car and hug your kid, who despite it all, seems to be always happy, and you go home and play UNO and fight with lightsabers, because all real warriors fight with lightsabers and you’ve been fighting a war since you were 20 weeks pregnant and you are tired — but lightsabers are fun, so you fight on.

#CDHFamily #NICUGradsAreTheCutest #CDHAwarenessMonth