Monday, June 18, 2012

The Emperor's New Hands

Apologies : I got all confabulated with email addresses and passwords and it took me a while to get back into my blog. It's nice to be back in here. As for the big CE school project: all was ready but the ten students. There are students, no doubt, but they are spread too far to reasonably commute to one spot. Maybe that will have to come later. 
      For now, CE marches on; or hug-walks in its own fashion.
      For me, I am happy about the arm splints! So, we finally have some arm splints. It took the kind persistence of Zsuzsi to remind me (now 3 years later) that she wants Blue to use arm splints here and there throughout his day. Bless her determination. On a recent trip to Hungary, she and her husband Artur went to no small lengths to get the splints and a grab bar with suction cups from the Peto Institute. I sent her the measurements for Blue's arms, and somewhere overseas a nice person sat down at their sewing machine and made them for us! Some soft cotton cloth, a few plastic stiffeners, some velcro, and voila! Look at that kid hold on, and he's relaxed, and watching the video, looking at the book, and all this without the heavy wheelchair and stuff. What a breath of fresh air.
      When I begged the PT and OT over here in Canada to please please please get me some arm splints; they refused. So, often I hear that; and my son's arms are starting to look more and more like chicken wings. His hands are looking like they could easily end up permanently bent like accessories instead of useful limbs.
      My stars, why are these things allowed to go on for so many years? It's as obvious as global warming. Anyone with a human body can see what is happening to his legs, arms, and hands; and what am I told to do about it? Get an assessment, put buttons by his head, accept that this happens, and la de bloody da!

 So, as not to spite them nor angrily smite them;
 I did what we could for my little man,
who needs not a "lift" to go the can.
 He has legs, and can stand!
 He prefers it, I proffer;
Nuts to the offer
of gear and gadgets that disarm my son.
He holds, we count past a hundred and one;
He grips at the bar and leans on his arms,
These simple things simply contain all the charms;
drained by "pros" like spaghetti from sauce,
(Things would be different if I were the boss.)
So we sigh and sniffle and stare at the sky,
why can't we just start with HIM? Tell me why;
well, actually don't. I've heard it before,
take out the ef, you're left with a bore.
The ef is from effort, you've seen that before?
Or is this all Greek, you see not what I seek? 
I see him do this each day of the week!
He will, and he likes it; he does, and he do.
One only need try, yet they never knew.

Rhyme, rhyme; waste my time.  Somehow feels a bit better though.

1 comment:

Susie Mallett said...

James, it was lovely to find you back this morning as I get ready to cycle off to our group of now seven children. The numbers are creeping up, it takes time though.

The lines of rhymes were not a waste of time, they made me feel better too, thanks, and it looks like Blue is doing really well with his arm splints.

Thank you for reminding us all that is never too late to learn.