Wednesday, July 14, 2021

14 Years of 5p-

Although Olivia was two years old when finally diagnosed with 5p- syndrome, obviously, she’s been living with it her whole life.

At the time of her diagnosis, her doctor, the lovely, wonderful Dr. S told us that when Olivia is older, she will get to decide who knows she has 5p- and who doesn’t.

At the time, I was torn. I mean, yes, I want her to be able to pick and choose who knows what about her. But I also kind of wanted the world to be able to see her struggles so that people would be kinder and maybe more patient. Yeah, we all know how that works, right?

I learned early on that having an ‘invisible disability’ is a double-edged sword. There are benefits and drawbacks. Isn’t that how it is with most things in life, though?

We’ve always been open with family about O’s diagnosis. There was no reason to keep it a secret. She is who she is and she’s perfectly awesome even with her diagnosis. Yes, yes, I would STILL give her back that missing part of her chromosome, even these fourteen years later. I would take away that struggle because the world is hard enough to fit into without extra complications.

Anyway!

While at my aunt’s house over the 4th of July weekend, we were all sitting around a table, just doing what families do. My aunt said something about O’s syndrome as she was talking about my cousin H’s daughter and her struggles and my nephew stopped my aunt.

“Wait,” J said. “There’s something wrong with Olivia?”

Olivia looked at him and said casually, “I have 5p- syndrome.”

He looked confused and asked, “What does that mean?”

I explained about the missing chromosome and told him about how things are sometimes harder for Olivia and take her longer to figure out. Olivia is 357 days older than J (to save everyone from doing dreaded math, that’s 8 days short of being a full year older.) I told J that when he started walking when he was 13 months old, Olivia, at just over two years old, saw him doing that and figured if he could do it she could too, which is about when she started walking.

He grinned at that and the subject was dropped.

But it made me think. J hadn’t known that Olivia has a syndrome. To J, she’s just Olivia. A little quirky, maybe a little different but not ‘wrong.’ Sure, she has some weird habits (flapping, stimming, being immature for her age) but again, to him, that was just Olivia.

And that warmed my heart. It reminded me of that day in the doctor’s office all those years ago. It made me thankful for ‘invisible’ disabilities, and how because of them, my daughter is just Olivia, all her idiosyncrasies just adding to what makes her special and loved by family and friends alike.

1 comment:

Julie said...

Fourteen years of an absolutely beautiful miracle and her momma!!