Sunday, November 20, 2011

{everyday turkey}

Tomorrow morning, we go pick up Avram's brand new braces.

When we went in for the fitting a few weeks ago, the orthotics people were very reassuring. He won't mind them at all, they said; he'll love the support he gets from them. They fit right over his socks, but under his shoes, and he only has to wear them during weight-bearing activities (so, his feet are free for long car rides or while swimming). And guess what? You can put whatever design you want on them!

How wonderful!

All my worries seemed to have been put to rest, except for one final question:

"How long do you think he will need to wear them?"

"Oh, probably til six or nine."

"Months? Six to nine months?"

"Oh, no, years. Until he is six to nine years old."


Months, I was prepared for. Even one year. But years.


Of course the reel instantly started turning in my head, imagining Avram on his first day of preschool, the first time another kid makes fun of him because he has weird things on his feet, learning how to strap on his braces before he knows how to tie his shoes.

As a new policy, I am trying to not to cry as much.

Not because I think it is wrong or soft to cry, but I know that Avram will soon pick up the hint that I get upset about things. Especially things concerning him. And those hints, those are the hints he will take as to how he should react to tough things, to unexpected news, to other people.

I don't want him to cry or get defensive every time someone asks him why he wears braces, or why he has a scar on his belly. I don't want him to be scared of new people or situations because he feels that he is...different. So I know that I need to start reacting to this kind of news in a way that lets him know that we can take it, that we have Peace in all situations, that just because we have extra challenges doesn't mean that he is any less capable, or smart, or loved.

As I have been watching Avram today, as I have been busy with Thanksgiving preparations and tidying up the house, I am trying my hardest to stay grateful as we head into tomorrow. I mean, we have gone four months without seizures. That's the longest we have gone since the first seizure last Christmas. And his original shunt is still going strong, revision-free for 19 months. That is miraculous. He is pulling up to standing, drinking out of cups, starting to crawl on all fours, doing all sorts of wonderful tricks with his fingers. We have so, so much to be grateful for.

But it seems like every tiny thing, every milestone, Avram has to work for. It took weeks of therapy for him to hold up his head, months for him to bear weight on his legs and arms. If you only knew how much work it took to get this child to feed himself. Every reach, every new skill, we practice and practice.

And practice.

Everything is a battle, behind each step is work, work, work.

I know it is making him tough. I know it is making us grateful: you will never see two people cheer so loudly for someone picking up their own food, or pulling up to standing for the first time, or figuring out how to throw a ball. All the work, the strain, the crossed-fingers, the patient waiting...we take nothing: no step, no "ba", no pincer grasp for granted.

You should have seen this place erupt in cheers when the buddy popped up on all fours for the first time last week. We have been working on that for months; you would have thought he had just solved a Rubix Cube.

Tomorrow morning, we start a new chapter in Avram's story. A few months from now, taking our braces on and off we just be old hat; by next Christmas we will probably think nothing of it.

Maybe someday, new skills will come easier for my little guy. Maybe one day, we won't need the extra help, the therapy. Maybe.

And maybe they won't. Maybe it will always be a battle, a long road of hard work.

And if it is, well, then we will keep on working, keep on cheering.

And if it is, then around here, every day will be Thanksgiving.


Tina M. in Chicago said...

And that beautiful smile at the end of your update makes it all worth it! Hoping and praying that things get easier for all of you.

Anonymous said...

I found your blog through reading another blog, and have just loved reading about your little guy. there is not one doubt in my mind that he will reach his very fullest potential, be happy and hearty, and continue to fill your hearts with joy. All this hard work is an every day ride on the little train that could........keep chugging!

two sevens clash said...

I know that feeling so well! We are totally in the place right now with Leo. Every skill he learns is a joint effort.Somedays it seems so wrong, so unfair that he needs to work for weeks or months for something other kids pick up instantly, but it's so true, that when those kids develop often times the parents don't notice or instead complain about it, while we think it's the greatest thing ever! Here's to taking things slow and steady, and for being able to savor every single triumph! Love to read about little Avram. He's got so much in common with our little man! They should be friends. :-)

Anonymous said...

Happy New Year Avram and family; you have been in my holiday thoughts, and I hope you are happy and well. may the New Year bring peace, peacefulness, and good health to you all.