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)

Friday, August 30, 2013

Full Circle

As Sam's sensory fears became more and more challenging over the past two years, it was not just his sitting and basic daily mobility movements that required some creative tactics but so too did his physio sessions. When once Heidi had no problems stretching Sam on the wedge on the mat, this became an impossible task.  Up until a few weeks ago, if you laid Sam on the floor, or on anything too close to the floor, he became so terrified that he would just not move...not a muscle...not a finger...including his lungs. He simply would not breathe. His arms would be thrown out in his still-very-present "startle reflex"and he would lie there frozen until you picked him up. Now while the startle reflex still rears its head quite often (which has left both Heidi and I teary eyed after its resulted in a frightened little hand connecting accidentally with our noses) it's definitely toned down quite nicely.  And so too has Sam's anxiety about lying on the floor. I think I might have blogged about this already, but a couple of weeks ago I had no alternative but to lie Sam down on the floor to change his nappy at a friend's house....Sam was so scared that I had to keep rubbing his tummy while changing him to get him to take a breath.  I decided that we honestly just can't go on like that and so every day since then changed his nappy on the floor at home. At first Sam will still get a bit of a fright but within seconds now relaxes and let's you carry on, so 3 physio sessions ago I suggested Heidi try stretching him on the wedge again and not once since then has she had to resort again to placing him on one of the adult physio tables (which for some reason, even though narrow and quite high up, was less frightening for Sam) to do his stretching.  It might seem like a small victory, but it's actually a pretty huge one for us.  Sam's sensory problems have pretty much controlled much of our lives over the past couple of years so to see at least some of them improving brings refreshed hope.  We've not yet reached the point where I can use the vacuum around Sam and I still have to walk around in the middle of Winter with wet hair as hairdryers are most definitely still on the v-word list but it's really not too important right now.  Yesterday while playing with Antoni, Sam did not feel me moving away from him while he sat on the floor (which usually causes that "plank reaction" as soon as he feels I am no longer supporting him) and sat for a good 15 minutes before he got onto his knees and crawled away as if it is something he's never had an issue with. 
This picture is from about two-and-a-half years ago just before Sam had his first attempted testicle repair, which was when his sensory challenges took a major dive.

Today...not in the least bit worried about lying on the wedge and not only breathing but doing some pretty awesome happy-flapping too.
It has been a really loooonnnggg two years :) Watching Sam lose milestones which had taken him so long to achieve, like sitting and pulling himself up into a standing position, etc, really took the wind out of my sails. How could we move forward before we found ourselves back at that point? Well finally, two years later, we are here now...and it feels pretty darn good...and really very exciting.  I cannot wait for the weather to clear up so we can get out there! I don't really know where "there" is but with Sam being able to walk short distances while holding my hand it could be feeding the ducks at the dam, standing watching the kids on the playgym at our local shopping centre, taking a slow walk to the gate at Meg's school :) This morning Sam sat on one of the physio blocks while I put his shoes back on after his session.  When finished I held out my hand, he took it and pulled himself up and we walked to the door. It was such a natural process, something so many folks take for granted. When next you happen to be walking alongside your little one, take their hand and for just a few moments walk WITH is a joy, a heart's desire, too many parents will never have the opportunity to experience.  I am thankful for feeling that joy today xxx

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