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, November 13, 2010

Can you see the resemblance?

Well, its been some time since I last posted a pic of myself so thought "What the heck.....?"

Okay, so there are one or two minor discrepancies like the colour of this woman's hair, the nice frilly nightgown and dressinggown she had time to put on before bed as opposed to the first mismatched pair of pj's she could grab out of an already darkened room shared with baby (although the slipper-less feet are definitely familiar), the absence of the lovely swollen glands, squelchy ear-noises and sore throat that feels like she's been taking her tea with milk and two blades please...the result of leaving a particularly bad case of tonsilitis to, hopefully, clear up on its own (like its known to do?) before eventually resorting to her doctor for a much-loved course of know, the kind that leaves you feeling about as energetic as a slug who's been taking his tea the same way, but with two puffs of cottonwool as well (always reminds me of that movie with Jim Carey called Me, Myself and Irene" where he gets a bad case of drymouth after taking his medication - I can sooooo relate right now). But add another ten teeth to that baby's mouth and you've got the splitting image of Sam (give or take a shattered window pane or two which usually comes hand-in-hand with Sam's high-pitched screaming). Oh...and of course...that glorious head of hair is missing!

Seriously - we're having a really interesting time as, apart from my tonsilitis, Sam is becoming increasingly more fussy, a time when Mom kinda needs to be on her best form for. I keep thinking that perhaps he's caught some of my germs and is battling with a sore throat or earache or something, so took him off to the doc on Thursday morning just to make sure but she could find no signs of infection or anything nasty at all, other than his rather swollen mouth as the result of cutting, now, three molars. So, I am really hoping that it is merely his teething causing all the drama at the moment, but still remain sceptical because his reflux is also giving us a run for our money at the moment, carpets plus freshly peaking-reflux = not the greatest of scenarios. Another worrying factor is that, although it is one of the most common RTS conditions, Sam never really did battle with constipation as I know many of his RTS siblings have. However, this seems to be changing as even though I am giving him the maximum amount of Duphalac he can have on a daily basis, his tummy is really giving him some problems - something I know can aggravate reflux as well. So we bought some Movicol this afternoon, of which Sam has had his first dose, and are hoping it solves at least this problem.

As for the rest of the clan, the girls are practising frantically for their Christmas Concert taking place on 5 December, as well as wrapping up all the end-of-the-year activities like assessments, class/extra-mural parties, etc. while I count down the days to our next appointment with Prof Fieggen on 22 November. Luke is being...well...Luke, which doesn't involve a whole lotta anything other than playing playstation, playing pc games...(the usual 17 year-old-boy-stuff). Sammy's Granny (my mom) is coming down next week Thursday (which also happens to be her birthday) from Pearly Beach, for a couple of days so we are really looking forward to that and then Sammy's Ouma and Oupa (Chris' folks) are coming down the following weekend from Stilbaai for a visit as well. Last year we made an effort to spend some time in Pearly Beach and Stilbaai but we are not sure what Sam's recovery is going to be like after the surgery so have decided to just play it low-key this year and stay at home :)

1 comment:

  1. HI Nicky
    Just a little feedback on Jodie's constipation as we stuggled for months with enema's etc, with the help of the RTS family, Jodie's constipation has cleared up now for about 5 months. We have changed her milk to pediasure... this also assists with the growing. We havent been using duphalac at all, maybe ask your paed?