Little's Life

Little's Life

Wednesday, February 8, 2012

Baby Steps

Little Bit was referred to early intervention services a year ago this month.  This was before we knew about his Duchenne, before we knew he had anything life long or life threatening.  In the past year of therapy, Little has just turned into an entirely different being.  He couldn't do anything by himself other than roll over.  There was no crawling, to pushing himself up to sitting, no cruising, no bearing weight AT ALL on his legs, and no voluntary reaching of his arms over his head.  Had our 1 year assessment with Kentucky 1st Steps this morning and all 4 of us were just so so so so proud of how far he's come.  He hit ALL of his 1st year goals!  I was skeptical that he'd hit the big ones, like walking and drinking from a straw (and I think the therapists were, too)  in just a year, but Little One worked his heiney off and blew us all away.  He's definitely deserving of the 3 week therapy break he'll get starting at the end of the month.  This tiny boy has been so brave, so determined.  He has had to work 10 times harder than a tot without muscular dystrophy to master even the slightest of motor skills.  Skills like holding his own bottle - most of you take that skill for granted with your child.  You might even be a little bothered by him or her grabbing and holding onto the things in your hands like his/her life depends on it, but Andrew couldn't do that until he was about 14 months old.  Do you know that Little Face can't kneel?  Can't jump?  He can't even pull his own socks off.  That's how weak he is.  In church Sunday, he saw his friend, who I will call "Nugget" clasping her hands together during prayers. I didn't even realize he couldn't do that - it was so adorable watching him try.  There are just so many things Andrew cannot and will not ever be able to do.  But he can walk.  

He walked and walked and walked and walked.  I think he was at it for 20 minutes last night.

I was so proud.  Those were the longest walks he's ever taken!  But just as we were getting relieved and excited that he seems like he'll be able to walk down the hall to his room by himself one day, he collapsed.  Just crmbled to the floor as the muscles in his legs gave out.  Mister held him for a minute and let him rest then set him back up on his feet.  He instantly dropped to the floor again.  It was like a punch in the gut from the Duchenne Goblin.  Well, more like a dead leg, really.  Like "Haha!  Don't get too excited, I'm still heeeeeeeeeeeeeeere.  Don't forget about meeeeeee!"  I could see it in Mister's face as he held him - that realization that all of this progress is just masking the DMD, not curing it.  I hate seeing that in his eyes.  Mister doesn't like to talk about what's going to happen to Andrew, it's just too difficult for him to face right now.  So seeing him having no choice but to acknowledge it last night while cradling Andrew on the floor of the hallway was rough.  I wanted to cry, but I didn't want Mister to feel any worse.  It was just so bittersweet to see Little take his best walk ever, but completely wear out his muscles doing it.  I just kissed them both and thanked God for the time I have them.

I hate Duchenne.

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