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)

Monday, April 16, 2012

Roses are red,

Little smurfs are blue!
I'm almost certain
That something's on the brew!

Something is most definitely bugging our little smurf :(  He has been really moaney and whingey this past week, but most frustrating is his sleeplessness. We've gone through this before a few months ago where he spends hours upon hours at night thrashing and whipping himself around. I cannot leave him in his cot because he inevitably gets hurt, so he lands up in the bed which means I spend a large part of the night covering my head for protection...kinda like in those war movies when the soldiers crouch down, arms draped over their heads, quivering in fear...except it's little hands and arms I'm trying to avoid and not grenade-debris. Mmmm...which brings to mind helmets - perhaps worth a consideration? Although I can't imagine how comfortable I'm going to be sleeping with a helmet on. By Saturday I was pretty sure I'd be waking up....uhhhh, let's rephrase that...getting up ("waking" would imply that something remotely resembling sleep takes place) with a blue eye one morning in the near future - watch this space!  So again we're faced with the frustration of not having Sam be able to tell us what it is that's irritating him, if he has any pain or discomfort...or whatever. I had an idea it could be his ears because the last time he carried on like this at night, his ears were filled with fluid. But our RTS kiddies have these really awesome in-your-face ear canals and if you have a small and powerful enough little light, you can actually see quite a decent amount of what's going on in there, although obviously not entirely what condition the eardrum is in. I could see, though, that the little grommet/tube is still securely in place on both sides, there's no fluid or anything leaking out which presumably would happen if there was something funky happening in those ears. Sam's tonsils are looking much better than they have in a long while, still slightly enlarged but not at all red and minus those little white follicles. Urine tests check out fine - so I am good and solid stumped (Yes, again)...and can do nothing more than just wait it out and hope that whatever the problem is, it will either blow over on its own or reach a point (like a fever or obvious infection) where we now know for sure that Sam has a good reason to have taken on his Grumpy Smurf persona again.

Grumpy or not, we headed off to Haven of Hope on Saturday morning...moaney, whingey smurf in tow (or should I rather say...on arm) with the hope that perhaps a little interaction with his equine friends might improve Sam's mood. However, Sam seemed to prefer staying in the car watching his Teletubbies dvd (oh the joy...just can't escape those "hawwo-ing" little creatures) while Meg and Chrisna had an awesome time with the beautiful Prince and rather-cheeky Thembi. Every time I ventured near one of the horses to just say "Hi" and have a bit of a petting, Sam protested and, ironically enough, the only one he seemed willing to have anything to do with was Strawberry the pony. In Sam's defense, the wind was howling quite hectically and the weather was a little miz so perhaps he just wasn't in the mood to be outside...or inside...or awake...or asleep...or left to entertain himself...!!!! H-E-L-P!!!  (Hee Hee)  Hopefully our next visit to HOH sees little smurf in a much better mood!

Surprisingly enough Sam had a relatively peaceful sleep on Saturday night and only woke up after 8am...which was wonderful for me, but not so great for the little doll Sam kidnapped from our church's cryroom last Sunday, which we intended returning this weekend. The good news though, despite Sam's clingy and challenging mood continuing through the rest of the weekend including last night, is that I will soon have my rugby-player physique back...particularly the neck and little smurf (who just doesn't seem so "little" when you're carrying him around on your arm for a good eight to ten hours a day) has decided to revert to his original method of falling asleep - which is me shushing him in my aching arms, singing horrendous, out-of-breath renditions of "The-Wheels-on-the-Bus" or "Mocking Bird". Nothing like a little regression to give you a swift kickeroo on the rearend as a reminder to completely and totally cherish progress when it happens.

Couch-Potato Smurf

Soon-to-be-renamed Spice!

The latest arrival at Haven of Hope, all the way from Stilbaai - Knight!

Thembi and Dollie watching Chris watch them...while waiting for the girls to return from their ride

A brief moment, en route to see Strawberry, where Sam allowed Chris to carry him.
He looks so tiny for a little boy who is turning 3 years old in less than a month :)

So, that's been our week in a nutshell - obviously with all the usual therapies and, now that the school term has started again, afternoon activities for Meg and more of the same for this week. On Thursday, Sam has a dentist appointment which I am really looking forward to. Yes...really! Sam's teeth have taken a real beating with all his antibiotics and acid reflux and lost a large part of his front tooth when doing some mouth-stimming on Nemo (Sushi anyone?). I have been dreading the inevitable dentist's appointment but after spending ages Googling and asking both nearby special needs schools and some of Sam's medical team for a referral to a dentist who specialises in children and has experience with special needs kids, Sam's Aunty Anthea referred us to a lovely lady, Dr Shirley Lim, who is coming out all the way from Hout Bay to see Sam in the comfort and (taking Sam's SPD into consideration) security of our home. Once Dr Lim has assessed what treatment Sam requires, she has also advised that when Sam has his foot surgery at N1 City in September she would be prepared to travel out again to do the necessary work while Sam is in theatre - so love avoiding unnecessary anaesthetics!

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