Thursday, October 17, 2013

Even in Australia..

I deal with a lot of stuff with my kiddos.  I usually don’t talk about it except to maybe other SN Mamas because only they understand.  Usually things are pretty good around here.  I’m used to dealing with our insurance company, Medicaid, our pharmacy, way too many doctors, three different DME companies, four different therapists, pretty much everything.  It all just rolls around and it’s life.

I like this quote.  I’m going to buy a plaque of it with my birthday money:

It is what it is, but it will become what you make of it.

I love the quote.  It’s a positive twist to an old maxim that got me through Bella’s hardest days.

But today I got hit in the solar plexus.  Today in therapy our OT (who is a Saint and miracle worker – I adore the woman and all she has done for my kids!) took the time to explain to me about our senses, about near and far senses, about the vestibular system, about pain, about neurons, and about Alex’s very underdeveloped sense of touch.  Now his sense of hearing, his auditory system – that is amazing.  He can echolocate.  He explores and discovers with his ears.  I thought we were doing well in the touch department . . . until today.  Not so much.

He knows the things he is familiar with.  He knows hard and plastic.  He has developed rhythmic sequences of actions.  His head banging, his twirling of sticks, his finger flicking.  He has a prescribed set of actions that he repeats to gain input.  He is not exploring new and unfamiliar things.

I listened to her.  I watched him. 

As she was leaving, I told him about the squirrels, that they have been busy building their nests.  We have many small twigs and leaves on our porch.  I stopped myself  - I was telling him.  So I sat on the porch and tried to get him to use his little hands to “see” what I was talking about.  There are so many leaves here.  Nope.  It was new.  It was different.  He was NOT going to touch a leaf.

This cannot be.  He can’t not use his sense of touch. (double negative on purpose!)

I am determined more than ever to have him discover something new every day.

(now the rant…)

I HATE that Alex is blind!  If I could give him my optic nerve, it would be done.  The brain bleed that stole his vision stole so very, very much!  It makes me mad.  It makes me sad.  It breaks my heart.  I hope that I get to see Alex on the morning of the First Resurrection when he opens his eyes and sees…….sees God’s beautiful world for the first time.  I want to see that!

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