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)

Tuesday, February 15, 2011

Happy Valentine's Day..... all you lucky folks who got to celebrate it. How'd we celebrate? With three helpings of vomit, of course! Still, I mustn't complain - I did get spoilt with flowers and chocolates. On Saturday afternoon Chris got a bee in his bonnet about us going for sushi - WITH Sam! I was so not keen, even though it had been almost two years since we'd last gone out for sushi (not taking into account the once or twice we'd done take-away sushi, but just not the same). By Saturday Sam had gone three days without throwing up so Chris eventually twisted my arm, we loaded every toy/book/rattle into Sam's bag and looked prepared to last at least forty-seven days out in the wild as opposed to the mere forty-seven minutes it took us to drive to the restaurant, gulp the sushi down (after first dropping one of only three pieces of seared tuna on the floor in an effort to not mess soya sauce on seated-on-my-lap Sam while maneuvring loaded chopstick to mouth - how I could do with an extra coupla cm's on each arm) and drive back home! Yip! You read right - FORTY-SEVEN MINUTES! Must surely be some kind of record? Still, even though Sam complained through most of it and Chris looked like a sadly misplaced Jack-in-the-Box having to keep getting up to fetch whichever one of the things Sam had thrown down, it did sort of feel like an accomplishment that we'd given it a go.

Yesterday morning we were off to UCT Private Academic Hospital for a follow-up appointment with Prof F. Sam was great on the way there, fell asleep after driving for just two minutes so the day looked like it was off to a good start. However, the moment we entered the consulting room he basically moaned the whole time. Thankfully, all looks good as far as the surgery and recovery goes which I could finally start seeing myself in both Sam's usage of his right leg and increased urine flow. In fact, whereas it would take me just one nappy change with all his "dribbling" to get an ample amount of urine to test every week, it now takes me almost the whole week as he wee's less often (than the previous every two/three minutes) but with a much stronger flow. 

Leaving the hospital did not see the end of Sam's mood and he cried all the way home. We were literally about two minutes away from home when Meghan's school phoned to say she'd been throwing up, so had to make a detour to first fetch her. Got home, gave Sam a bottle and some lunch. A few minutes later he burped and out came the first eruption, all over the bedroom floor. Few more minutes later, now crying from the upset of having vomited, out came the second...all over the lounge floor. And so the day continued with our Joyful Smurf. Meghan at least was feeling a bit better by the afternoon and thinks it might have been the Valentine's Day ice-creams they all specially ordered at school which, she says, were extremely rich. In keeping with the mood of the day, Sam was especially difficult trying to get to sleep last night which is when the third eruption happened but thankfully the carpet was spared this it all landed on ME!

Today has, so far, been pretty uneventful with Sam being a precious little angel and fast asleep for the last hour. Tomorrow is physio again and Thursday our appointment with the orthopaed which I am so looking forward to, to find out what we can do to help Sam's little left foot which might in turn, help him walk better and sooner. The story surrounding his foot is still very much uncertain. When he was born the foot was turned inward and upwards at an almost impossible angle. We originally thought it was a club foot but after Dr duT aka "Vaatjie" (orthopaed - feet, etc) sent us for x-rays they actually found that there is no extra bone, etc in the foot so an official clubbed foot was ruled out. Then, with the initial diagnosis of the tethered cord we thought that might be the cause but when the, otherwise normally formed, right foot started turning in as a result of the tethered cord we could plainly see the difference. So his little left foot is simply, unexplainably deformed and I am not sure what one could do about it as the actual angle of the foot corrects itself with stretching and pressure but the little extra "bump" just is what it is. Roll on Thursday!

1 comment:

  1. Sounds like we had a similar Valentines! Hope everyone is well soon!