Sometimes Reality Stinks

This kid hit the jackpot.  Last week a friend
gave him 13 size 5 onsies.  Big onsies are
considered "special needs" 'cause most kids
that size don't wear them.  And like anything
else "special needs" there's a crazy price tag
on them.  He is soooo much more comfy!

Thursday, May 21st, 2015

You know how you're going along, everything is great, and then something smacks you upside the head?

Yeah, just had one of those.

Aaron's been doing well, and I've been enjoying (okay, mostly) the month of May.  Around here, May is much busier than December.  We had choir concerts (yes, multiple), band concerts, ballroom concerts.  There were grade school and special needs school performances.  Final soccer games (again, multiple) and soccer tryouts.  Job interviews (not me), and just the normal everyday goings on.  And it has been good.  I enjoy watching my kids enjoy what they're doing.

Plus some fun times for me, including a great Heart Moms lunch last weekend.  There was a new mom who sat between me and a friend of mine.  My friend's daughter has Trisomy 13, and while she turns nine the week after Aaron turns five, her life expectancy is pretty much the same as his.  In other words, they've already outlived more than 95% of their peers.

This new mom asked us how we dealt with it, knowing our child had lived longer than they were "supposed to," knowing that we have no idea how long we have with them, and knowing that unless something happens to us, we will be at their funerals.

We told her we don't think about it.  We shove it in the back of our minds, way, way back, and leave it there.

But sometimes, it creeps out. And sometimes it charges out.  Tonight it was somewhere in between, and I don't even know if it's really "something" or not.

We were at the band concert, and Aaron was with us.  When the Jazz band started playing (and they were really good!) Aaron got startled.  But he was a little off before, too.  But his body started jerking, and spasming.  And it continued, even when I took him outside.

Was I seeing seizures?  Maybe, possibly.  I know it sure brought back what the future will bring in spades.  I decided to just get him home and watch.  Whatever it was, and it continued all the way home, stopped once he got in bed, thank heavens.  We don't have a seizure protocol or seizure meds.  Our only option if they continued was to call in help.

Here's hoping for a quiet, restful night.

Friday Morning:
Aaron did have a very calm, quiet night.  I did a little research and yes, being startled, especially by a loud noise, can bring on seizures if you're prone to them.  Many, many kids with his challenges have them and there have a been a couple times over the last few weeks where we thought he might be having one or two.  We're going to have to look into this.

Reality is too much to take in heapfuls, 

but sprinkle it sparingly upon life's path and most can tread it lightly. 

~Terri Guillemets