Monday, November 7, 2016

Sharing Her Story

My mom joined me and my girls this past weekend in Bloomington, Indiana for the Indiana University Dance Marathon.

IUDM is an annual event that is put on to raise money for Riley Hospital for Children. We’re invited to attend this event as a “Riley Family”. Olivia was finally diagnosed with 5p- syndrome when she was two years and three months old by a developmental pediatrician at Riley. She had her heart scan, her kidney ultrasound and an initial x-ray of her spine at Riley.

We found a doctor who looked beyond Olivia’s beautiful face and saw a sick child and a mother who was doing everything she could to find answers.

We’ve been attending dance marathons since Olivia was four years old. We’ve climbed on stage and I’ve held a microphone while Olivia stood either beside me or in front of me as I tell the tale of her birth, the first few months when she cried pretty much all the time, the doctors who told me she was too pretty to have Cri du Chat.

I talk about how when she was two and still not walking, I asked her regular pediatrician for a referral to Riley because while he’s great at diagnosing ear infections and strep throat, he wasn’t all that proactive when it came to Olivia and her lack of meeting any milestones at all.

This year, though, I mentioned something I’d never said before. I told the audience, “This might be the last year I tell her story. I think she’s getting to a point where it embarrasses her and since it’s her story, well, it’s her choice if it gets shared.”

And they cheered. They cheered because this amazing girl who will be ten in twenty days is mature enough to make these kind of decisions. She’s smart enough to know her own mind and can tell me if something makes her uncomfortable. And I’m empathetic enough to listen to her, to understand that maybe it’s her time to make the call.

There is so much more to talk about from this weekend but for now…we might have just shared O’s story on stage for the last time but this doesn’t mean I’m done talking about her in smaller groups or here. I mean, she IS one of my favorite subjects and it’s still important to get it out there that a 5p- diagnosis isn’t the end of the world. It can break your heart for a minute but then you realize that your baby/child is still who they were in the moments before you heard the words Cri du Chat/5p- syndrome and you take them home and you love them and you expect amazing things out of them and they surprise everyone every single day with their strength, their joy, their stubbornness, their tenacity. And you surprise yourself with your ability to love someone so much, so completely and so unconditionally.

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