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)

Thursday, November 7, 2013

Remember remember the 5th of November,

A day which brought joy equal to no other!

Sam has a book. Scrap that. Sam and I have a book, well several of them by now. He has this really interesting need for me to draw things relevant to whatever we might be doing/watching.  For instance, if we're watching Mr Tumble I will have to draw the spotty bag, Mr Tumble's house and occasionally even Mr Tumble himself.  If we're counting, I'll have to draw numbers. If we're sitting at the kitchen counter I'll have to draw the things he can see...the chairs, kettle, etc.  To be fair, most of the drawings are fairly hideous due to the rather challenging pace at which they need to be drawn, but certainly do reflect Sam's obviously vivid imagination as often I see absolutely no resemblance to the object of focus in my drawing, yet Sam will gesture excitedly in confirmation. 

Recently Sam has taken a liking to the biggest, most amateurish (and, needless to say, most embarrasing) of these books accompanying us out in public and I dare not leave home without it.  Driving while he pages through the book for the millionth time can be quite challenging as he expects me to acknowledge each page when he taps it enthusiastically.  On Tuesday on the way to fetch Meg from school was such a moment and while I try to (sometimes) fake a quick glance and guess what he might be looking at, in an attempt not to pancakerise the newly hatched goslings wandering around the local pond, I failed to even fake-glance.  After hearing him tap the page exaggeratedly, a small smurfy voice suddenly beckoned. "Mamma"

Any overshow of excitement with Sam usually ends in him crying so it took every ounce of self-control I could muster (and trust me, I am far from abundant in self-control with these things) to calmly stop the car, turn around and say "Clever Sam", acknowledge the drawing of Tinky Winky's bag he'd been trying to show me and then continue driving on to the school focusing through tear-filled eyes.  Once we got to Meg's school I straight away tried to get Sam to repeat it, but all he could manage was his usual "Vavava", with which he seemed just as pleased...

We've yet to hear another "Mamma" but believe me when I share that I attempt, several hundred times each day, to help Sam's brain find the path back to that wonderful place.
Sometimes the depth of Sam's sensory dysfunction completely blows my mind.  It took almost a whole year before Sam mustered up the courage to crawl down the really very short passage in this house, into our bedroom where he would sit in front of the mirror playing his drums or doing silent renditions of Heads, Shoulders, Knees and Toes (given away only by his actions), but suddenly about three weeks ago he became too fearful of entering our room again. The other day I decided to remove the curtains we'd hung over the blinds as they seemed to make the room too dark.  Within minutes Sam crawled into the room to admire himself in the mirror.  I did a quick calculation and realised he'd stopped coming into the room when we'd hung the curtains. No wonder moving house knocked the kid sideways...and a little to the rear too :)
Ah, sleeping ongoing battle indeed.  There was no substantial negative on nights four and five of the Clonodine, just that it doesn't work every night. Wednesday was a good night, Sam fell asleep within 20 minutes and only started bodybashing round 5am. Last night took the all too familiar two hours of bodybashing and a violent nosebleed before he eventually fell asleep, only to start thrashing again round 2am.  Makes me wonder if the Clonodine is contributing at all. Sam's system seems to have the most warped habit of doing well on a new med for the first four/five days and then somehow Smurfanity prevails and blows the new med out the water...or blood. So we've done Epsom Salt baths, Rescue Remedy, Valerian Root drops, Melatonin, Neurontin and now Clonidine. Honestly, could there be anything else to try? Perhaps I need to try all of these things together? On me!! Heck, there's a thought...with any luck I wouldn't even be aware of any smurfy bashing going on.  Hehe! Just kidding.

Rolled himself to sleep in a pillow pancake ;)
We're still trying to limit Sam's kneewalking but it becomes more and more difficult with each day as he grows increasingly frustrated, not only at having his mobility and independence curbed but also because most of his self-stimming is done on his knees. After Tuesday's little moment, I wondered to myself which of the two would be the most beneficial to Sam, if we could somehow guarantee that he would at least master one of the two, walking or speech...I think we'd definitely opt for speech, but still remain hopeful for both xxx

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