I Lied

After I shared Olivia’s story of becoming a Riley kid at the dance marathon this weekend, one of the college students who puts their heart and soul into planning and executing the amazing events that are the dance marathons came up to me and thanked me for sharing our story.

I told him I loved doing it. I nodded at Olivia, who was spinning and dancing around the room in her Barbie Princess Charm School dress and thanked him for all that he does and how he and his fellow planners manage to make the weekend about kids like Olivia.

He told me that it was Olivia and all the other Riley kids who inspire him and the work he does.

I asked him what his major is and it is pre-med. I told him I wasn’t surprised.

He went on to say that he wants to go into research so he can continue to help people.

I pointed out that when your child is diagnosed with a genetic disorder as Olivia was, there’s no cure but that having an answer is sometimes all you need.

Then I lied to him. I said, “I wouldn’t change her anyway.”

That’s a lie. I’ve written before that if I could give O the part of her chromosome that is missing I would. In a heartbeat, I’d give it back to her.

See, we were all caught up in the love that dance marathons inspire. We were being all philosophical and dreamy and isn’t life grand and how lucky are we to have this opportunity to change lives?

But…in the everyday scheme of things? I’d give it back to her. I’d take away the challenges she faces. I’d take away the low muscle tone and her soft voice. I’d give her a strong, loud voice and muscles that do what she wants them to do without so much effort.
I do not think that the missing part of O’s fifth chromosome makes her who she is. I don’t think it would change the essence of who she is if she had all of her chromosomes intact.

Olivia is the girliest girly girl who ever twirled. And she’d be that same twirly girly girl even if she had all of that fifth chromosome. She’d probably just be more twirly, more steady on her feet, louder when she sings Taylor Swift songs.

She might not be a Riley kid and we might not get to go to all these amazing events where she and her sister are treated like celebrities but you know what? I’d trade those things in an instant if I could give O back her complete independence, her fullest potential.

I know that her potential is already pretty good but she has already faced a few challenges and will face more in her life. I’d take those away. I’d ‘fix’ her, if I could. I just would.