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, July 23, 2014

Apologies for soiling your charmed life m' lady

Have I mentioned that the little dude now weighs 18kg's? That's the average weight of a 'normal' five year old kid. So the slow weight gain associated with RTS has been conquered...awesome! awesome. Just the 153cm's of mom carrying those 18kg's of awesomeness around is taking a little strain. And while most of Sam's body grows sturdy and strong, those little lower legs seem to be fading just as quickly. So walk the smurfy lil dude must.

Sam is having to re-master his walker. When he first got it, he used it the wrong way round as his fears and anxieties kicked into overdrive when encountering life so far off the ground, without any form of protective shield in front of him. To start with I was just so thrilled to have him straying from his knee-walking at least a little that I didn't consider the repercussions. But seeing that Sam was adopting more of a 'pushing' stance made me realise that he was in no way strengthening his core muscles which he needs to do if walking unassisted is ever going to be an option and also, he was in actual fact being given a false sense of security...much as a baby's walking ring would. No wasted moments though, he simply would just not have used the walker at all otherwise. Baby steps, see :)

Having grown more confident using the walker correctly around the house and at therapies, I decided it was time to hit the big, bad world! Off we went to our local Spar, the same place we tried out the 'incorrect' method. Determined to avoid all things 'normal' the first place Sam heads is....the fruit and vegetables aisle! He has a fascination with, mostly, bananas and pineapples and it is very seldom we leave a store without bananas so if ever you run out, you know where to go.

It would be fair to say that using the walker this way, which makes his dragging right foot a little more pronounced, certainly makes for an awkward-looking gait but hey, my general all round clumsiness and tendency to trip over non-existent obstacles makes me look a little awkward too. His smurfy swagger usually brings a smile from others, occasionally a pretending-not-to-stare stare and sometimes...a little more often than it should...a very purposeful look of disapproval.

Disapproval? Why so?

Because I have dared to expose our 'tragedy' to those who know nought of such things, who resent you for imprinting even just briefly upon their minds the fact that such 'imperfections' even exist.

Sound like an oversensitive mommy rant to you? Tis not! And here's why I the deliverer of this disapproving look squeezed passed our awkwardness, my 13yr old daughter...usually preoccupied with watching herself doing various renditions of 50 Epic Dance Moves in the shop windows or reassuring me that she would not have jayboarded straight into that oncoming car had I not literally grabbed her by the collar...paused mid-Meghaness to note how Sam and I were both being scowled at. Like, wow, really???

Now it's fairly easy to understand why, although I see plenty fellow-journeying moms at therapies or out in force at get-togethers, I very seldom run into them in random places. It's really quite sad, don't you think? Iris House Children's Hospice gifted us all with these wonderful little 'ice breaker' cards for our kiddies...I'm going to ask them to add to Sam's, in big bold print, NOT FOR SENSITIVE VIEWERS! 

Nah...just kidding :D

Thankfully, our little 'really?' moment is completely overshadowed by more heartwarming incidents like when a friend, at the same store, has already packed herself, her family and her parcels into her car and is about to drive away when she spots your smurfy entourage across the parking lot and leaps out to hurry over and say hallo!!! A small happening to some, a meaningful heartfelt gesture to others xxx

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