I Don't Want To Make A Fucking Wish

With the walls closing in and the ten people in the room turning into crazy bug-eyed versions of themselves, the doctor put her hand on my knee and said, “but don’t worry, we work with Make a Wish ALL the time.”

That was it, that was the exact moment I knew that the last three years, four months and 26 days of worry, therapy, more worry, countless specialists, research studies, tests, scans, and doctor appointments, had just gotten me the one thing I thought I wanted, but had no idea I didn’t: a diagnosis.

My daughter was born six weeks and four days early on a summer night in July. She came into this world with a primal howl and an Apgar score of nine. That was the last thing she did that was developmentally appropriate. My sweet baby girl, my second child, was never typical. I distinctly remember sitting in the hospital NICU asking if this was the start of the rocky preemie road; I was told in no uncertain terms that my child would be 100% fine, a little delayed but 100% fine.

HA! Fucking HA! She crawled at 11 months and started walking at 24 months; we’re still waiting for her to talk. On her second birthday I was told she had Cerebral Palsy, phew, I could handle CP. It wasn’t degenerative and if I pushed and pushed and pushed she’d make progress…and she did. And she still is, except it will stop, soon.

On December 13th, 2013, eight months pregnant with my third child, I walked into a gigantic cluster fuck. There were ten people in the room, one of whom was a social worker. I should’ve known. So there I was round and fat and happily pregnant, walking into my daughter’s neurology appointment with my cherub faced three-year-old baby girl in tow.

BOOM, she has a genetic syndrome!

BOOM, it’s degenerative!

BOOM, there are no cures or treatments!

BOOM, she will have a shortened lifespan!

BOOM, it is extremely rare there is no known research to find a cure or treatment!

BOOM, the unborn baby in my belly has a 25% chance of having the same syndrome!

BOOM, I can never have unprotected sex with my husband EVER AGAIN!

BOOM, my daughter is going to die!

And then the biggest assault of them all…don’t worry we work with Make a Wish all the time. WOW, just WOW! No offense doctor lady, but I don’t give a shit about a trip to Disney right now.

So here we are, almost a year later. My daughter is still making progress, and she’s doing great. My son was born (very shortly after that appointment at 36 weeks) healthy and without the syndrome (I thank God daily). My husband and I are dealing, sometimes not so well, but we’re making it through this uncharted territory.

Our eldest son is starting to understand that his sister is different, and we’re handling those questions as they come. We haven’t really told the world yet, but the few people we’ve let in on our “make a wish” secret are very supportive.

So, what’s my point in sharing this story with you? Well, just that if I could Make a Wish, it’d simply be to not have to Make a Wish.

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