Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Saturday, November 3, 2012

Smurfy Swagger...this is how I roll (2)

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...

 ...or iPadding.

 Sam is seriously addicted to his Signing Times app at the moment but it apparently only has the desired effect if he is nose-to-screen with the iPad, at the very least...there might even have been some licking involved.

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 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*)

1 comment:

  1. Your little angel is WALKING!!!! I get your issue, though - I had a hard time when Stephen was using a push walker too. Once he moved on to not needing it, though, whatever my anxiety was resolved itself.

    As for the sleep study, I don't know how it works there, but here in the US, they only need 7 sleep hours for a sleep study, and that's just for insurance purposes. Our tech actually told me that they can get a good idea of what's going on after only an hour! Maybe it would help to practice some ahead of time with putting stuff on Sam's face? Stephen did a lot better with his first study at age 2, than he did for this last one when he is almost 6. Maybe Sam will surprise you? But I agree that it's time to figure out what's going on an how to help you all sleep better.