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)

Wednesday, August 25, 2010

The Wheels on the Bus go......CLAMP! CLAMP! CLAMP!

Or should that be...the wheels on the Hyundai GET...clamped CLAMPED CLAMPED!

This week started out pretty okay - on Monday we had a follow up visit with Sam's orthopaed to see how his thumbs were getting along. I expected to be spending a good one-and-a-half to two hours at the hospital as it would involve first going to see the orthopaed, then down for x-rays and back up again for the results and that's roughly how long it took the first time. We (I dragged Luke along with me and Sam) left home a good forty-five minutes before our appointment as I can NEVER find close enough parking which means we walk a good kilometre or twenty from the car and the weather was looking a bit ominous (still) so I figured I'd give us enough time to drive round the entrance hoping for a leaving patient/doctor. We had a choice of two routes - a) being much quicker and as-the-crow-flies direct but entailed driving along the R300 and N2 highway which are both notorious for a wide variety of issues from terribly inconvenient roadworks to more violent issues like brick-throwing, protesting, blockades, etc. and b) being a more detoured route with loads of traffic lights, congested roads, etc. So I opted for route a) and just as we turned from the R300 onto the N2 noticed a double-cab to the left of us completely surrounded by a minimum of about one-hundred-and-fifty to two hundred people and thought to myself...mmm, people round here sure are friendly - this poor motorist has obviously run out of petrol or something and look at all these folks offering to help out.

Anyway, arrived at the hospital with a good ten minutes "parking search" time but after circling at least three or four times and down to about two minutes left to not only park, but haul myself, Luke, Sam, baby bag, blanket, sound-making baby book all out of the car and up to the third floor. Eventually I resigned myself to a, technically, illegal parking spot which was situated right on a bend. The "technically illegal" part didn't concern me too much because there were at least ten other cars also parked "technically illegally" but was more worried about being parked on the bend. Was literally about to step out of the car when I noticed a burgundy Citroen pulling out of a parking bay across the road, so quickly threw all and sundry back into the car and pounced on the parking spot, practically bumping the Citroen out the way.

As we walked into Dr Carter's rooms we almost didn't have enough time to sit down before he called us in. Took a quick look at Sam's thumbs and sent us down to radiology. Again, as we walked in the radiologist was standing in reception and called us in immediately, Sam was SUPER co-operative and four x-rays took less than four minutes. Back up to Dr Carter's rooms and again straight into his office. He said Sam's thumbs are looking really good, the bone in each thumb is growing beautifully. He asked how physio was going ......

Dr C : So Sam is using his hands again as normal?
Me : Yes
Dr C : And he seems to be moving the thumbs as normal?
Me : Yes
Dr C : And he's grasping objects as normal?
Me : Yes
Dr C : And he's crawling as normal?
Me : Yes
Dr C : And....
Me : Whoaaaaa! Goofy-Crazy-Mamma Say What???

It reminded me of those age-old jokes where the guy falls off the ladder, breaks both arms, both hands, all his fingers, etc and when leaving the hospital he asks the doc with these pleading eyes " Will I still be able to play the piano?" and the doc replies "Yes" and the broken-armed guy leaps with joy, exclaiming how wonderful that was, as he could never play before!

Anyway, two half-consultations, four x-rays and twenty-eight minutes later we were headed out the door, me beaming from side to side and gushing to Luke about how pleased I was that it had all gone so quickly and smoothly and what do we see when we reach the car - my wheel has been clamped! I was in such a rush to grab the "open" parking bay I didn't bother to look where it actually was - which was right in front of a roller-gate at the entrance to another section of the hospital. Thankfully the security guards were still standing there, in the process of sticking the notice to my window and they were so completely understanding (even though they'd been read the riot act by an extremely angry motorist who had had to drive his car over the pavement to get through the gate) and agreed to unclamp my wheel without me having to pay the penalty fine.

On the way home, while still showering the Lord with thankfulness that I'd escaped the clamping-catastrophe, I heard a warning on the radio advising people to avoid the N2 as protestors were blockading vehicles in the midst of a six-day long strike! Whoaaa....let's turn up that thankfulness shower..mmmm, and make a mental note to listen to the radio more often!

On Tuesday we had our carpets replaced, which was kinda like moving house with all the inconvenience of packing, etc but WITHOUT the pleasure of the new house afterwards. The fitters took six and a half hours which meant that Sam and I were basically confined to our bedroom for six and a half hours and the constant hammering and banging works wonders for a child with sensory problems. When they were working close to our bedroom, which was a good couple of hours, Sam literally flinched with each and every hammering/ you know how much hammering/banging goes into 70m² of fitting carpets? A lot! Thankfully, three broken floor tiles and a headache for me and, I am sure, Sam too the fitters left. One good thing came out of the day and that was that Sam's rescheduled MRI was confirmed for Thursday, 2 September.

This morning Sam woke up very moaney and whingey...and after vomitting his cereal up after a particularly inconsoleable bout of crying, was sporting a lovely temperature of 39.1. So, he is sleeping restlessly while I type this with an unrelentless fever still sitting at 38.3 even after three hourly administering of medication. So, I guess we are off to the doc again tomorrow which is a little frustrating as only eleven days ago he finished a sixteen day course of come on Sam, can we at least split the healthy/unhealthy days 50-50....or is this just some kind of MRIphobia, that coincidentally you are sick again...mmm.

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