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)

Wednesday, August 21, 2013

The Good, The Bad and the Ugly

Let's start with THE UGLY   and work our way back :)

This is a letter received by the grandmother of 13 year old Max Begley, a child with severe Autism, in Newcastle, Ontario, Canada. The letter is self-explanatory and has pretty much gone viral on the net, been covered in the news and probably been read by a decent number of parents to children with disabilities.  I can go on and on...and on...about how despicable the letter is and what an appalling character this woman has. But, although I am sure she is one of few who had the audacity to actually vent her feelings about how she views people with disabilities, I am just as sure that she is not alone in simply having had these thoughts. The news report showed short clips of a lovely-looking young boy, excitedly bouncing his ball around and jumping up-and-down with all the attention and support the community is offering the family and I thought "Heck woman! Imagine what you'd say about Sam in 9 years time!"
So instead of going on and on...pffft...can I just ask whoever might be reading this post who does not happen to be the parent of  a special needs child, just please DON'T be this woman. Don't disregard a disabled person's life as a waste of body parts, don't ignore that they have feelings just like you and your children do, don't instantly condemn their behaviour just because it is something you have no knowledge or understanding of, don't frown upon their parents as being lacking in the way of discipline and guidance when you see a disabled child struggling to cope with his/her social environment, don't fail to bless a disabled person with your smile just because you think it might go unnoticed or, worse, not be worth the trouble....don't not respect them...don't not accept them...don't not love them...Yip, that's about it.
The bad is actually kind of relevant considering the above. Sam has developed this new sort of grunt-type sound and his love of his newly acquired sound is growing as quickly as what his dislike for attention is and his, seemingly, growing frustration with not always being able to communicate properly.  It's two of Sam's most challenging Sammerisms at the moment....if he does something cute or clever he'll point at me to show his dad or Brampies or whoever...but then when the person looks, he gets so upset and protests with this loud type of grunt.  Also, when he's refusing to do something like lie down for a nappy change, he uses this same sound.....going completely bright red from the neck up and causing his little RTS moodlet on his forehead to almost glow. Honestly, this may sound crazy, but it sort of looks as if Sam's trying desperately to actually SAY something and becomes frustrated and angry when he can't verbalise his thoughts.  If we're in public and someone happens to look at him or, horror of horrors, talk to him he instantly gets agitated and a-grunting we will go.  It's almost a little sad to see it when you're not busy worrying that the poor little dude could burst a blood vessel at any moment.
If I choose to endulge myself in the thought that Grunty Smurf is in actual fact trying to get his brain and his tongue/mouth on the same page, I would have to brag that it's not the only bit of remarkable progress we've had over the passed week.  Sam's absolutely atrocious "driving"of his walker has had me just a tad concerned and when I eventually had to resort to moving all the furniture safely (well kind of) up against the walls to avoid them being shredded by his bumper-car-manuevres, a fleeting thought of whether he would ever grasp the concept of walking lurked in the back of my mind.  At about the same time last week I decided to go full steam ahead with a gluten-free diet for Sam. It requires a little more effort and creativity where meals are concerned but it's definitely getting easier and Sam doesn't seem too concerned that gluten-free foods are definitely not as tasty as the good ol' unhealthy stuff. So, take a little fear (that he might not walk) add a little motivation (derived from the hope that I'm doing something useful with Sam's diet) and one gets a surprising amount of dogged determination. I decided last week that it was Sam and I...and his walker. And for two days every half hour or so I put him in front of the walker and made him stand up into it on his own and get down again on his own which were two of the biggest issues Sam struggled with when becoming more comfortable with the walker. On Thursday I was standing in the kitchen, the walker left in the passage and Sam happy-flapping in front of the tv.  Next moment Sam's head bobs out of view....and back in again, just a little higher this time...and around the corner he comes with his walker. Of course I went berserk with uncontrolled excitement which made him grunt at me in defense.  But how could I not....and now, almost a week later, it's still kind of surreal to see him calmly pull himself up and waddle away. His driving skills are not much less shocking than before but his sudden confidence is astounding.  As cruel as what it might seem, one day I really need to take some video's just to show the type of fears Sam deals with when having transition through "normal" day-to-day movements...sitting, lying down, etc.  But for now, you'll just have to take my word for it that this is all pretty huge. 
Sam is so confident about the whole thing now that sometimes he pulls himself up with his walker...walks like two steps...gets down on his knees...pulls himself back up, almost like he himself is having trouble believing that he was once so scared. And even though Sam's using the walk back-to-front it still building his confidence up even further, he now walks with me holding onto just one of my hands, he's started pulling himself up again in his cot and on furniture and even manages to manipulate himself around on his teeny weeny little chair so he can get off all on his own. He's exploring new parts of the house which previously he avoided, even though it's almost exactly a year since we moved here. Now I don't know if it's the gluten-free effect making his little brain streamline certain input more clearer or if it's me borderline harrassing the poor kid to the point of tears (mine, not Sam's) to get this or possibly a combination of both but it does feel so soooooooo good to see a little progress. No wait, to see a LOT of progress :)
We're even confident enough to play tenpin bowling in our walker 
And what we don't knockdown with the ball, we simply ride over
Going for a walk

Climbing off the chair

I know that these might seem like such trivial accomplishments but my-oh-my for a kid whose mobility sometimes causes him such fear that he forgets to breathe, it ain't so trivial at all xxx

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