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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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, August 13, 2011

And surgery No. 4 already on countdown..

It's a little over twenty-four hours since Sam came out of theatre after having his adenoids removed and, more importantly, his undescended testes brought down...or should I say, partially brought down. My source of reassurance over the past couple of weeks building up to yesterday's surgery was that if we could get through Sam's TSC surgery, we could pretty much get through anything, right?

Wrong! The day started off badly with us misjudging the morning traffic into town so we arrived almost 40 mins late, then instead of the original one-and-a-half hours guestimated surgery time, Sam was under for an extra hour and eventually came out of theatre just before 11am, after going in at 7:45. And obviously there had to be a reason for the extra time, which reason could only be a complication. The complication - Sam's right testicle was sitting too high up for them to bring it all the way down in one go without damaging the blood vessel which would in turn cause the testicle to shrivel up and die. So instead the teste has been brought partially down and attached to a blood vessel to kind of hold it in place for six month's, when the urologist will have to go in again to try and finish the process. As if that wasn't devastating enough, for the first time Sam really battled to come out of the anaesthetic and the nursing staff were less than attentive (even though we were in high care) and at one stage left Sam screaming for 45 mins and only came to check on us after he'd thrown up. Sam seems to have been more traumatised this time than with the TSC surgery. He is in full sensory overload at the moment, we can hardly touch or move him without him startling or crying, even tho he's on the same painmeds as the last time, which pain meds had him doing all kinds of acrobatics regardless of the long cut in his back. Disappointment and anxiety are setting the mood at the moment, having to accept that Sam has to go through this all again so soon :(

There is one thing though that does lift the spirits and that is once again the number of messages, well wishes we've received and genuine concern shown from good friends and family, among others from Monique, Henriette, Sara, Laura, Ina, Rone, Aunty Bernie, Elaine and especially Aunty Mandie, Aunty Cammy, Granny, Brampies and Aunty Anthea and precious cousin Amy...thank you so much for keeping us and, more importantly, little smurf in your thoughts...xxx

"Family isn't always blood. It's the people in your life who want you
in theirs. The ones who accept you for who you are. The ones who
would do anything to see you smile, and who love you no matter what."

2 comments:

  1. We just know that our prayers were answered and what can we do we just have to love little Sam so much?

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  2. I'm so sorry this was such a tough event...I pray he recovers soon!

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