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, January 27, 2015

Courage and Hope

While writing my last blog post, I had to drench up every last scrap of self restraint to keep from sharing that, as at that date, we'd had 6 full night's of uninterinterrupted sleep! SIX NIGHTS! HALLO!  And of course, this blog being abundant with jinxability made me wary of saying anything until enough time had passed to make the issue 'safe' say maybe six or seven....months.But come the 13th I was bursting to tell somebody. Celebratory-worthy matters are hard to come by lately so to have to keep one under wraps for so long was killing me. And boy did I share...with anyone who was willing to listen...and even those who weren't. And what do you think happened?

Yip! It was back to 3-4hrs of bodybashing each and every night. By midway last week I was too scared to get behind the wheel of a car. Managing an average of about 2 hrs interrupted sleep each night was not making for fabulous judgement calls. And of course when there's no sleep, already fragile behaviour becomes even more volatile. And what better place to put this thoroughly entertaining behaviour on display than at your big sister's brand new high school and the very many events which have required attendance. Yikes! There were more narrowly-escaped projectile moments in the last week than in the whole of last year.  So of course, we retreat into our safe haven and watch wistfully from the windows at those going about life.  

I have the utmost respect for parents who have the courage to ignore the stares, dismiss the judgements and just continue going out and living life despite the challenges brought into the mix by Autism. I have yet to find that courage. Right now every inch of me wants to simply keep Sam in our safe place where he is comfortable and protected from opinions which might overlook the awesome little person he is because of not being able to see passed the challenges brought on by sensory/anxiety overload. 

Thankfully, an appointment which was meant to have happened last year but got postponed due to Sam's Gingivostomatitis, happened yesterday afternoon. It could not have come at a better and more much-needed time. For now I am going to make the most of the sleeping smurf beside me but can tell you that


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