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, January 22, 2011

That Sneaky Little Smurf

Our little conqueror woke up full of beans this morning :) It can sometimes take Sam a good hour or more from the time he starts stirring in the morning until when he eventually wakes up and this morning was no exception. Sometimes he's in the bed with us when he wakes up but last night he stayed the whole night in his cot. Hanging from the top of the cot is a little flower mobile (yes, I know, a bit "girly" for such a tough conquering smurf - but the flowers have lovely little smiley faces on them so that changes everything) and we don't need to peep over the side of the cot to see whether he's moving because whenever he does, the flowers start shaking like crazy. So this morning he stirred for a bit...then one little arm stuck straight up in the air for a minute....then he started "oooohhhhiiingggg" to the flowers while starting his morning smurfercising (kicking the sides of the cot). Chris and I lay watching the flowers, waiting for him to start moaning because we had not put him in the bed yet but instead the flowers suddenly went still and the "oohhhiiinnggg" also stopped. No way! What are the chances he would have fallen asleep again? Aaahhhmmm...NO CHANCE! But peeping over the side of cot was two of the most gorgeous blue eyes ever, watching us in utter bewilderment as to why he was still lying in his cot. We had such a good laugh - Sam has recently occasionally managed to find himself on all fours so it's great to see him gaining some strength in those little arms and shoulders.

But anyway, that was not the highlight of the day...although it was definitely an endearing start. I think I've mentioned before that Sam is not able to use both of his hands at the same time, he either uses one or the other which means that he can't do things like hold his little toy drum in one hand and bang it with the drumstick in the other, he can't hold his bottle because it's just too big to fit into that one tiny hand and, perhaps the most disappointing for me, he cannot clap his hands and, oh my gosh, I so L.O.V.E. it when a baby claps their precious little hands together and that's something I've really missed seeing Sam do.

Sam loves music, or even better, music video's of Barney or Hi-5, but especially Barney's Clapping Song. If I tell you that we watch Barney's Clapping Song a minimum...and this is an absolute minimum...of thirty times a day you would think I was exaggerating a little, but you'd be very wrong. Thank goodness we have three different versions of the same song (phew) which does help a little but that song has been our WAITING saving grace...waiting for x-rays, waiting in the doctor's rooms, waiting for Meghan at see, I cleverly recorded a copy onto my cellphone as well so wherever we go we always have Barney to resort to. Now as much as what Sam loves this song, all he ever really does is smile and occasionally do some flapping when its on, he's never made any kind of inclination towards trying to imitate what he's seeing. Today an amazing thing happened...yes, you've probably guessed by now - Sam clapped his hands...but that's still not the highlight, it's WHAT initiated his hand clapping. Chris was walking around the house carrying Sam and singing to him and all he SAID (without any visual encouragement as Sam was facing forward) was "Sammy, clap hands"....and? Sammy clapped hands!! You could have knocked us all over with a feather, I can only imagine what the neighbours were thinking about the excited squeals emanating from every open window and door and it didn't stop least every twenty minutes someone was asking Sam to "clap hands" just in case he'd managed to forget. Let me tell you, he's made up for a solid twenty-month's hand clapping in just one day.

Try as I might, I just couldn't capture the two little hands actually coming together

 Precious little boy :)

But wait, it doesn't end there. Later this evening we were sitting with Sam singing "If you're happy and you know it, clap your hands...." but we only do the first two verses to keep it simple (the second obviously being "...stomp your feet"). At first Sam didn't respond to the handclapping part but eventually started catching on, so Chris decided to skip the "stomp your feet" to focus just on the clapping, but Sam automatically lifted his foot to carry out the second action.

There is a slight low-note in that we found a little lump last night under skin at the top of Sam's cut and just can't imagine what it could's much wider than what it is long and is not attached to the scar at all, as it moves independantly. But there doesn't seem to be any other indication that something might be wrong so are trying not to focus on it too much until I can chat to Prof F about it on Monday (hopefully). And it does help still being deliriously happy after all Sam's little conquests today - they make the more "challenging" moments of the past couple of days seem oh-so insignificant.  



    We are doing the happy dance with you!!!!!!


    What an amazing day you have had!!!!

  2. Hee Hee...I just so knew YOU would get it Jax! Love you guys!