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)

Thursday, September 1, 2016

Are We There Yet?

Okay....are we okay yet?
The first five years are the most challenging...after that, everything seems to settle and you'll be of the most regularly-shared reassurances we were offered during those first years.  Gosh...Year 5 became my desperately sought-after utopia, if only we could make it to that benchmark, then we'd be OKAY!
Except...we didn't get okay! Instead we got Belgium and Belgium was pretty sucky as it came in the form of an additional diagnosis, Cerebral Palsy. That is just so not how it was supposed to go.  Initial diagnosis at birth - Rubinstein-Taybi Syndrome. Great, got speaking, feeding issues, ineducable...blah blah blah. Or so according to Sam's (then) paediatrician.  So, shatter all dreams for your littlie and try and just get through each day at a time...and literally at that stage because the little dude wasn't quite sure he wanted to do this whole ventilation-less breathing thing or leave his entertaining game of musical incubators in the NICU so for the first few weeks, each time entering the NICU was accompanied by crushing waves of nausea and fear about whether Sam had managed to make it through the night without slipping back to High Care.  But then we linked up with other parents of RTS kiddos...parents who were a more accurate and encouraging source of information and support than any medical journal and/or individual divulging said information...and we discovered okay, where children with RTS DID in fact thrive and learn and communicate (perhaps not verbally) and went to school and were so very educable.  So...kept the eyes focused on that five year mark and bulldozed ahead through therapies and surgeries and doctors' appointments and regressions and illness and and and...because at the end of all those draining challenges was our okay.  Except, literally days before our five year mark, our okay got ever-so-slightly crushed with the results of an MRI which explained why Sam was not yet quite achieving milestones other RTS peers had by his age. 
I think I kind of gave up on okay.  I certainly was not going to go setting new benchmarks because the tricky combination of Sam's diagnoses (Yeah, we got to officially throw Autism in there as well) meant we no longer had a clear guide as to what to expect when, with no similarly effected children to draw measure from.  So, benchmarks are just not our thing it seems.  I felt kind of lost.  Actually, I felt very lost.  There was no longer a plan with a somewhat defined goal.  We were goal-less.  Goal-less is not great I tell you, it can suck the motivation and spirit to keep going right out of you.  So we threw goals out the window and just went with whatever was working for Sam at that moment.  And, at that stage, it was one-on-one tutoring with as little social interaction or change of routine as possible.  And that worked really well, for a while. 
But by mid-way through last year things changed.  With no experience in teaching and/or educational guidance whatsoever, I ran out of stimulating things to challenge Sam with...and he became extremely bored with the work I was doing with him.  Aggravating the situation more was the disruption of our every day routine after I joined the Danniel and Friends Fund and while I was revelling in having something so exciting to throw myself into, Sam was doing just the opposite.  Still, there were no schools which I felt were adequately able to withdraw the immense potential lurking beneath the lil flappy dude's packaging and so homeschooling it stayed. 
And then 2016 happened :
Where Sam finally overcame his fear of sitting on unfamiliar objects
and ventured onto a (for all intents and purposes) "Mickey Mouse"
one Sunday morning...granted after much coaxing from Dad.

And the newfound courage to try new things lingered a little longer.
And we added a member to our family - Chipolata aka "Chippy"
who first caused incredible disruption in our home as Sam battled
with the idea of having his place of comfort so vigorously invaded
by this not-so-welcome addition.  But before long, the two had bonded
and now every day upon arriving home from school, Sam first spends
a few mins with Chippy (who, if he was human, would most definitely
be just as flappy a dude as Sam) offering his hand to Chippy for some
crazy-affectionate licking and nibbling.  
Um...did you spot it...THAT!
At the beginning of the year Sam and I started attending one-on-tutoring sessions at a newly opened school closeby, Edu-Play.  The sessions went extremely well. Sam completely soaked up what was being shared with him as the activities were being tailored specifically to Sam's style of learning and the patient, accepting and genuinely caring atmosphere of the facility made Sam feel comfortable and safe.  At the end of the second term, Sam's tutor, Carlyn, suggested finding a carer/facilitator for Sam and enrolling Sam in fulltime classes.  Neither my mind nor my heart could work my way around the idea.  I'd given up on the idea that Sam would ever do something as "normal" as go to school, especially here in South Africa where not only are schools for differently-abled children limited, but schools which can cater for as unique a combination of diagnoses as Sam's are very nearly non-existent. Even as I started the process of trying to find the right carer for Sam, I don't think I ever really considered it becoming a reality.  And it almost didn't.  Finding a carer for Sam proved more tricky than I'd anticipated and it was literally two school days before Sam was meant to start that Leeanne happened upon our little flappy dude. 
So, on the 18th July 2016 I drove Sam and Leeanne to school for the very first time.  To be able to indulge in an activity so normal and taken for granted by so many others, is without words.  Sam's unexpectedly comfortable transition into his new routine still has me a little surprised, but reassured that he is happy.  As Sam nears the end of his seventh week in school, the novelty of each trip to and from school remains.  Over the passed couple of weeks Sam has been trying desperately to communicate more, becoming extremely frustrated when I am not able to fathom the signs he has resigned to making up himself when I do not grasp what he is trying to say.  It is a frustrating process, but also an encouraging one which I am sure can be built on to try and shape a way forward for some form of effective communication medium for Sam.  Being the only child in the school who is not able to walk, Sam has also started taking one or two steps on his own, although he is still extremely fearful and cautious.  On several occasions now he has stood completely independently to be able to use both hands to sign to me.  There was a nasty fall that happened a few weeks ago with one such incident, but the anticipated regression which would usually come with such a fall was short-lived and seemingly quickly forgotten.  The extent of Sam's progress over the last month-and-a-half is something I would simply not have imagined and without a doubt I know that Sam is where he is supposed to be right now, tapping into yet-to-be-discovered potential.  It makes my mama heart burst with pride.  And as I read the daily reports about what Sam has done at school, look at pictures of his daily activities and still occasionally glance over Sam's very first Playball report, unpack his lunchbox and prep his schoolbag for the next day I sigh and dare for a moment to entertain the idea that I think we have finally made it to okay.