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, July 19, 2014

And here's why...

...(for those who might ever have wondered) it is not a fab idea to have your overwhelmingly anxious child's dentist located in a shopping mall you frequent. Beeeeeecause...surprisingly...when three consecutive trips to said mall are purely for dental consults (the last of which ended in Meg and I discreetly trying to dispose of a margarine tub full of puke) certain smurfy lil dudes presume that every visit thereafter will involve more of the same. So it was with a touch of our own anxiety that we went off to run a few errands recently. When merely walking towards the entrance (on the completely opposite side of the mall) Sam transformed into a teeth-chattering, uncontrollably-shaking little bundle of nerves so Meg and I agreed to make it a super fast dash through the necessities, avoiding that side of the mall at all costs. How entertaining to, literally moments later, bump into.....guess who....Sam's dentist. Eeeeeeekk! After a quick exchange of niceties and firm reassurances that Sam was not, in fact, succumbing to hyperthermia we rushed through the centre like a couple of crazy loons and came out on the other end triumphant! I mean really, every puke-deprived outing is something to celebrate, right?
After spinal cord surgery, 2 x testicle surgeries, thumb surgery and a few ENT procedures here and there who would have imagined a dental procedure could be anywhere near as traumatic. After having our original theatre date bumped further along thanks to a doctor and his ego (not even gonna go there) which resulted in an unnecessary additional consultation (which would be the one that involved that dodgy marg tub disposal) we eventually made our way to the day hospital last week Tuesday. On the agenda was the removal of one tooth on the side which the dentist suspected might have had an abscess on it for some time, filling what ever else required it, applying sealant and then the removal of that little front, chipped tooth which was the one we were most concerned about as, having ground the tooth literally down into the gum, Sam had left nothing left to be gripped which meant the tooth literally had to be cut out of the gum. Sam was relatively calm until the moment we entered the theatre. Whether it was the absence of a pre-med, the presence of the dentist or the fact that the gas was administered at a much slower rate than usual...or a combination of all three...Sam freaked out. And by freaked out I mean he kicked, body slammed, smacked and pulled anything and everything he could make contact with. It was by far the most traumatic anaesthetic out of eight, we've ever experienced and left me feeling extremely unsettled and disorientated as I made my way back to the ward. Once the almost two-hour long procedure was over the dentist came in to advise that all had gone well. There certainly had been a nasty abscess on that one tooth which had drained once she pulled the tooth. She advised that both sets of stitches would dissolve in about 8 - 10 days and shortly after that we were on our way home. Over the next couple of days I kept a careful watch on Sam's wounds, focusing mainly on the front one where the tooth had required cutting out as it looked a little more "brutal" than I'd anticipated. On Tuesday morning I noticed that the gum where the abscess had been was very red and inflamed. I took a pic and e-mailed it to the dentist :
She felt that Sam might be having an allergic reaction to the suture and suggested I try removing the stitch. Um...sure...why not? After trying for almost an hour on Tuesday evening, I could not get Sam to stop flapping and head-rolling long enough to get hold of the stitch although he'd quite alarmingly allowed me to fiddle around in this mouth without much protesting. On Wed I took Sam off to the GP to see if she couldn't perhaps remove the stitch but once again Sam's flapping got in the way and so we made our way home with both the stitch and a prescription for an antibiotic to at least try and clear up the infection. On Wednesday evening, desperate to just put all this toothy business behind us, I lay on the bed with Sam and every couple of minutes would snip lightly at the knot and low-and-behold the darn thing came loose after a couple of tugs. Wooo Hooo! Hopefully the antibiotic successfully does it's thing and we don't have to even think about a dentist (nothing personal of course) for another six months.
Other than all things tooth-related, life has been low-key with the exception of a particularly exciting walk around our local pond all thanks to a psycho, stalker bee who mistook me in my violet fleece top to be a giant helping of something pollen filled and despite hysterical screeches and bee-deterring dances (much to the delight of fellow pond-visitors) lay in waiting as we completed our stroll to launch yet another farewell attack. Thankfully the random stroller parts which were hurled at it and frantic swiping and side-stepping eventually allowed us to escape. From now on, only black or grey garb shall be worn on sunny winter days when trying to remedy a bit of cabin fever with a leisurely walk. Pfffft.

One of Sam's current fads...umbrellas! We are so passed the whole "opening an umbrella indoors is bad luck" scenario :D

And for sure the only kid who is more fascinated by the scrolling numbers on the dvd player than the actual dvd playing.
It was several kinds of wonderful to get out of the house on Friday and spend some time with fellow journeying moms, made that much more appreciated by being treated to lunch by the Daniel and Friends Fund ladies, as well as each being sent home with a pack of nappies and tin of Pediasure. It being a different mall to that mall Sam was pretty chilled, despite it being over a busy lunchtime, and absolutely adored all the attention he got and precious new friends he and mom made...a truly blessed afternoon it was...

Many thanks to Marilyn, Kate and Lianie xxx


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