So I think I have mentioned how Sam's physiotherapy sessions usually run but just in case I haven't - we start off in the neurotherapy room where Heidi works on balance, crossing midline, transitioning from kneeling to standing, some roller and mirror play, etc. I'm sure most of you are pretty familiar with that drill already. However, when it came to lying Sam down on the mat for some serious stretching, he used to have one hectic smurfy-wobble. If the poor little dude won't even SIT on the floor because of all his SID issues, what are the chances he'd be happy lying, right? So for quite some time now, Heidi finishes Sam's therapy off on the normal physiotherapy tables attending to all his stretches while he lays, quite calm and relaxed, with the speakers from the iPod whispering all his favourite tunes ("He's Got The Whole World" is the current favourite) into Sam's ears. A few months ago Heidi started introducing Sam to the walking trolley but, as expected, he was petrified of being left holding on on his own so Heidi would support his torso as he walked himself over to the therapy tables. Last week, however, Heidi sneaked away mid-walk and Sam quite happily continued the walk on his own. For fear of distracting him and initiating a fall, I opted against whisking my phone out to video the scene...but this week I was prepared!!!
I watched the video over and over and over with excitement. But then, still quite unexplainably, it made me heartsore. And I had to stop watching it. I've thought about the whole incident alot over the last few days, trying to figure out how such a huge achievement for Sam could possibly make me sad. It's difficult to put into words but I think most of the time I tend to see Sam as "normal". His little unique way of being has just so completely become our normal that I don't always think about how the outside world sees him. Watching him in the video, he seemed so incredibly fragile and almost *lost*...I don't even know if that's the word I am looking for. My heart just suddenly became extremely heavy with all of the struggles and challenges he faces each and every day...and maybe, just for the briefest of moments, I desperately wanted him to be a *normal* three year old...the outside world's normal, not ours.
Is that terrible?
In my defense, we are severely...and I mean SEVERELY as in literally walking into walls, forgetting destinations en route, having serious speech malfunctions...sleep deprived in Smurfville. In 62 days we've had 2 nights of proper sleep (being from 9pm till round 5am without any significant waking episodes) and 3 nights of somewhat-disturbed sleep, as last night was...sound sleeping from 9pm till round 1am and then about 3 hours of that soul-destroying rocking/violent head banging before Sam eventually exhausts himself and has another hour long nap or two. The other 57 nights start with the rocking/head banging within an hour of Sam going down. We have now resigned ourselves to having to put Sam through a sleep study. I do know that many of Sam's RTS siblings have undergone a sleep study, some of them more than just on one occasion, but I also know that Sam (the very same Sam who tolerated having his blood drawn with some pretty mild whimpering and then proceeded to indulge in some projectile vomiting when Doc Paul simply placed a plaster over the tiny puncture wound) is not going to do too well with having his head and chin covered in probes and tape for 24 hours. But if the sleepless nights aren't enough motivation to find a way, then trust me that having to manage this little smurf the day thereafter, sure is. Let's just say that there are tantrums a-plenty and leave it at that.
When not fighting sleep or throwing tantrums so severe they measure on the Richter scale, Sam's current favourite pastimes are lots and lots of swinging...almost always accompanied by his music...
Some serious contemplation after a particular window drawing episode I Facebooked about:
I attended my 20 year High School reunion last Saturday...and it was *awesome*. Not just to see everyone and catch-up but also the pure bliss of having a couple of hours breathing time. I sneaked into the house at 12:50am...just in time to catch Sam on his 1am wake-up call...so Sunday was a super interesting day...LOL! But it was still so worth it...looking forward to our 20yr and 1month reunion on the 27th of this month...woo hoo!!
Okay, perhaps a little too eager then :)
Me and the gals, Sam and Debbs. Can't believe my head was still wafting around everyone's knees despite a mean pair of wedges I was wearing (which wedges also contributed to a very attractive bruise I was sporting at the reunion, after wiping out at home before I even left.
Absolutely have to get out more *sigh*)