Monday, November 19, 2012

ups and downs

"You might have to just wait until she's 2 to find out what she'll be like at 2 and wait until she's 5 to see what she's like at age 5."

Our pediatrician said this to me in June, back when I took Millie in for her 12-month checkup. We were just about to go in for her genetic blood-draw and he was trying to prepare me for the possibility that we wouldn't get a diagnosis for Millie.

And while we did get a diagnosis (trisomy 16q), his words seem to carry more weight for us these days.

We don't know what her future will be. No one does.

In some ways, not knowing is hard. It's impossible to plan for the future if the whole thing is  unknown. Will Millie start talking? Will she ever live on her own? Will she completely flourish in therapies? Five years from now, she could be completely fine. Is that likely?

But in many ways, not knowing is OK with us. No one knows what she won't be able to do, so her whole support team - us parents, her therapists, etc. - works under the opinion that she will be able to do it all, with help. There are no known limitations, so we don't have a dozen people giving us a list of what she won't be able to do.

And that's a good thing.

I won't lie and say that this is easy. The whole thing is hard: watching her resist liquids, struggling to adjust to her new medications, whimpering every time we arrive at the hospital for her therapies.

But it's helping. We know that. Millie has officially "graduated" one physical therapy session a week! She is going from physical therapy twice a week to just once. She is making great strides there.

We just haven't seen that same progress yet with speech. And feeding.

Granted, she's been through a lot more PT than the others - today marked her 40th physical therapy session - but, still, we would like to see some progress in those areas. If not verbal speech, some kind of communication

We have faith that she will get there.

We're optimistic that she'll show similar progross.

But some days it's hard.

I went to our local pharmacy late last week. It was, I think, my eighth visit there in eight days.

The technician greeted me with a sympathetic smile, "Amelia just isn't having a good week, is she?"

Then she saw the prescriptions - twice-a-day anti-seizure meds and a packet of emergency seizure-control meds - and I could see it in her eyes, as she began to understand: This isn't a kid with a bad week; it's a kid who's got a few tough battles before her.

About that time, Millie caught my eye from her seat in the shopping cart, looked up at me and grinned.

I bent down to kiss the top of her nose as she arched her head backward, throwing it forward to collide with my forehead.

BONK.

She laughed hysterically. It's her favorite game these days.

Yeah, she's got some struggles.

But, man, that kid loves life.
- Bethany :)

1 comment:

Anonymous said...

All of you are so amazing! I can just picture her bonking her head and smiling! Sending lots of hugs..mom