Wednesday, June 13, 2012

Concerto in the Key of SMA

While we don't focus on it, SMA takes away quite a bit of what one would consider "normalcy" in life - including the ability to be independent.  Taking Lucy anywhere is a production with two people; doing it with one person can be intimidating.  Fortunately, if I am told that I cannot do something, you bet your sweet asterisk that I will find a way (or goad someone into helping me!)

Walks with Lucy are one of the things that I feel relatively comfortable with, at least as far as SMA is concerned.  She can hold her own respiratory-wise and is pretty good at controlling her secretions.  We take along her pulse-ox and suction, and an ambu bag just in case - we've never had to use it, thankfully.  Other variables (stray dogs, creepos) are less under my control, but what's life without a few calculated risks? :)

So Lucy and I ventured out on our own tonight, to a park that holds summer concerts bi-weekly.  It's a goodish walk from our house, but not so far that I dread having to walk back once it's done.  The weather cooperated and it wasn't sweltering; in fact we needed pants and Lucy made good use of her blanket!

Like any toddler, she was pretty impatient.  We got there while they were still warming up, and she didn't seem to think that they needed to play the same few notes over and over.  They launched into their first song (it was a symphonic orchestra, by the way) and Lucy sang along.  She loves clapping at the end of each piece - but the introductions?  Not so much.  The first time was pretty close to a full-on tantrum as the conductor spoke, but the next few pauses she just hummed peevishly.

We both had a great time!  The lady who was so kind to Lucy last year that she brought along a teddy bear for her on the teddy bear parade night was there.  She came over right away and said she had been looking for us and was wondering if we would come!  She bent over to say hi to Lucy, and Lucy beamed at her. :)

There are many things I cannot do with Lucy - but how could I think of those things while there are nights like these to enjoy?

Like that smirk?  She smiled for one second 
when I held up the phone, and I wasn't quick enough, 
and this is the most she would give me after that.  Stinker.