"Just" 5p-

I was talking to a co-worker yesterday and in the midst of the conversation, I heard myself say, "Well, she just has 5p-."

And I stopped right there.

Just? She JUST has 5p-? Good Lord!

To back up, we were talking about social security benefits and how I've heard that it's easier to be approved to receive them as a child than it is as an adult.

I went on to explain to my co-worker that we have no idea how far Olivia will go. So far? She's amazing.

And yes, she'll always be amazing as far as Im concerned.

But...will she someday be able to hold down a job and live by herself?

We just don't know.

I explained that at this time, she doesn't seem to have any of the complications that can sometimes accompany various syndromes. She's healthy, she's aware, she's mobile.

So is there any such thing as 'just' having a chromosomal disorder?

I didn't mean to come across as flippant in my conversation. I feel like we got so incredibly lucky with Olivia. As this point in her development, she's very high functioning (as well as high maintenance.) But I'm well aware that that might not always be the case.

I go back to the moment we got her diagnosis. She was just a couple of months past two years old. I'd found 5p- when she was about eight months old and mentioned it to her doctor, who poo-pooed me and waved me on my way. I looked at Olivia and thought, "Well, she doesn't really have any of the physical features, so maybe he's right..."

But I always came back to that cry. That tiny little cry of hers when she was in the NICU. That cry that told every single person in the room that MY baby was crying. The cry that when she was about six months old and we were out and about one afternoon, we were asked while at WalMart, "Do you have an exotic bird in that carseat?"

And then at Dairy Queen, the cashier asked if we had an angry cat in our car.

That cry.

But I kept thinking that her doctor was smarter than I am. I'm just the mom.

So when our new doctor, our developmental pediatrician, walked into that room and confirmed the 5p- diagnosis, all I felt was profound relief.

Finally! We had some answers.

And I'd done enough research to know it wasn't degenerative. Olivia is Olivia. She'd already shown how much more she could do than doctors several decades ago would have expected out of her. We'd take our little gir who 'just' had 5p- home and let her set the pace, (while continuing therapies, if only to give her the very best chance of proving everyone wrong.)

Obviously, right now we're taking things one day at a time. She's four, for Pete Sakes. (That one was for you, Julie.) Each day brings it's own challenges, whether you 'just' have 5p- or not.

But yeah, that social security issue has been on my mind quite a bit. Any Ohio moms out there with any advice on this one?