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, July 2, 2012

Same Old Same Old

The past week or so has been a bit all over the place in Smurfville...sometimes diving into anxious waters and then suddenly soaring high...then diving again.  Basically the same old same old.

At Sam's orthopaedic appointment two Thursdays ago, Sam's OS tentatively scheduled Sam's foot surgery for the 26th July to be confirmed once he'd seen the x-rays we were to have after the consultation, as well as further confirmation from the other surgeon involved.  Not the best  news for our little smurf, who I'd so hoped would be able to go at least six months or so before another surgery.  Still, the consultation ended on a high when Dr dT advised us that there would be no charge for the consult as, technically, he no longer saw private patients but that there are one or two children who he can just not get out of his heart...Sam being one of them.  Aside from the obvious financial relief, Dr dT's statement brought tears to my eyes...having a doctor or any other medical practitioner share with you that they too are emotionally invested in your child (especially when there's no financial benefit to themselves) is something quite wonderful. 

This particular high unfortunately received a slight blow shortfly afterwards when the doctor we'd hoped to bring in for Sam's anaesthetic, advised that he would be overseas over that period.  Then, last week Thursday, Dr dT sent me an email saying that Sam's x-rays had shown an improvement on the angulation of that big toe and that, although he was still in the process of obtaining additional input from his colleagues, there was a good chance the foot could be treated non-surgically.  The worst case scenario, being that Sam still needs surgery, we would reschedule to accommodate our anaesthetist as the other surgeon involved could in any case not make 26 July. I replied to Dr dT's email with a very mature "Woo Hooooooo", literally bounced into Grampa's room (rudely interrupting his time with Angus Buchan) to announce the good news, then did an almost hysterical dancing-handclapping jiggy round the lounge with Sam (almost on the verge of tears by now with all the commotion), put Sam down and went in search of some anti-inflammatories for the muscles I'd most certainly pulled!

Our high got a bit shakey again by Saturday when Sam started wheezing and going all croupy on us.  On Wednesday night he started throwing up as well and I dismally saw our little trip to Pearly Beach slowly slipping away. 

But alas, here we are....three sleeps from Pearly Beach with a congested, slightly whingey little smurf but (thank goodness) nothing more serious than that as yet and literally just HOURS away from the Inaugural World RTS Day tomorrow (don't forget to wear your purple and yellow).  Disappointingly, even though I managed to send out a few more articles to various local publications, none of them seem to have been published. I might have had a bit more success if I'd had the time to push them a little harder but unfortunately Sam's been a bit too clingy for me to achieve much of anything over the past few days.  So at least I have the World RTS FB Event to look forward to - although I don't have the foggiest clue how to actually "attend".

Have I mentioned Sam's chair fetish before? If not - Sam is absolutely obsessed with chairs...plastic chairs, wooden chairs, his feeding chair, upholstered chairs, small chairs, huge chairs, tiny dollhouse chairs...and especially blue and brown chairs. Ballet recitals, school concerts and even doctor's waiting rooms are an absolute delight for chair-gazing for Sam.  A few weeks ago Sam added slides to his fetish and now excitedly points out any slides he manages to catch a glimpse of...even if its for a split second in the background of some random tv show or book and even when its not actually even a slide, like the little ramps on the toy car garages, the ramp in his PT's room, etc.  For the first time in his, almost, 3 years in this house Sam's noticed that we have a great big slide in our very own backyard so whenever its warm enough he loves going outside to "slide" (which entails someone holding him and shimmying him down the slide with very controlled movement and then quickly picking him up before he assumes the ever-so-frightening sitting position). 

These pics were taken a couple of weeks ago.....

Now I just have to master the art of drawing slides on the iPad :)

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