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)

Sunday, April 30, 2017


When you hold your breath while signing in, for fear of being asked for a password you know you can't remember, then you know it's been too long. Almost a cool FIVE months. Wow! When opening Sam's blog I attempted a mental timeline of all that has happened over the last five months but, truth be told, I couldn't put together an accurate timeline of the last five MINUTES! You chuckle good-naturedly but, oh, I kid you not. So here's my Plan B...I've gathered what pictures I have left of the lil flappy dude (after my SD card threw me to the curve and dumped my almost 1000 pics and videos into some never-to-be recovered black hole) which I will post together with whatever details and emotions I can remember of that event. For the sake of deeming this post at least somewhat readable, we shall start with the most recent pictures first. If, after the sixth picture, the content reads along the lines of "And here is the lil flappy dude at a place where he was doing some stuff and I was feeling bleh" then feel free to simply ignore the words and scroll through the pictures!

Car trips have always been a little tricky with Sam, with the only car in which he feels reasonably safe in being my car. I often joke that even if I had to win a whopper of a Lotto, I'd still be driving around in my little red Clio because the alternative would be Sam never leaving the house. Very occasionally though we need to leave the house as a family and little Clio's do not make for fabulously spacious vehicles, so a trip in Dad's car becomes necessary. After a short time (about 30 minutes or so) Sam will eventually relax enough to breathe and perhaps even allow some circulation to return to the arms clutching so frantically to his seat. This will, however, only happen if the backseat has been reserved for Sam and I alone. Try as we might, fitting a 6.3ft man and two teenage girls into the front of a Hyundai has not yet been successfully achieved though so there have been odd moments when Sam has been required to share "his" backseat with someone else. These trips do not go well and usually find us aborting our outing because no social activity has yet proven worthy of the unbearable screeching we need to endure en route. In desperation one afternoon (and because my traumatised brain had convinced itself that Sam had sucked all the quality oxygen into his lungs in order to maintain such an impressive tone of screech), I opened the window. Hallelujah! The kid went from crappy to flappy in 0.03 seconds. Our relief will be short-lived for sure as we are tentatively stepping into Autumn and the joy of driving with an open window might be a little less attractive in Winter. I say that but instantly hear the flappy dude's spirit mutter "Winter Schminter!"

At the end of last month, Sam went on his very first school outing. After almost ten months, I'm still sort of getting used to the kid being in school so his first school outing was pretty huge! Outings remain an unpredictable phenomenon in Smurfville. The ones you expect to result in chaos don't and those you feel are "safe" have you searching for a hammer and nails with which to board yourself and the flappy dude up inside the house for months thereafter. With my woodwork skills somewhat lacking, I decided to prepare for a, hopefully, hammer-free ending and arrived at Butterfly World a little earlier in order to figure out how Sam-friendly the place was, as well as to mark out possible exit routes. Well, the kid blew me away! We could have been going on a tour of the local butchery for all Sam cared. All that mattered was that his friends were there, along with his beloved teachers and Sam spent the morning in flappy blissfulness! He was even keen to touch (most) of the creatures during the reptile show...a little more keen than mom I dare say!

My first-ever, school-made Valentine's Day card from my warrior! Well, my first-ever Valentine's Day card from him at all for that matter. But this school...holding a paintbrush! It might seem a little blasé for some, but you need to have felt the hopelessness of having your child's potential repeatedly overlooked...the guilt of not being able to provide him with the guidance and expertise he desperately needs to thrive...the fear of him never knowing the joy and excitement of friendship, to be able to fully appreciate the profound hope Edu-Play and seemingly insignificant treasures, like a precious little painted heart, ignite within you. 

This one's a bit of a toughie...meaning, I am not yet in a good space with it all. On 3rd February Sam had an MRI and EEG after having experienced a change in both nature and duration of the, till then, very erratic seizures we were used to. We had tried to do an EEG before but when the lil flappy dude started resembling the Tasmanian Devil in his attempt to escape the sensory-overload of the electrodes, we surrendered after just 17 minutes with absolutely nothing worthwhile having been recorded. I had little hope for this EEG being any more successful. Surprisingly, Sam tolerated a full 20 minutes. No, not much longer than the previous EEG, except that this time there were enough "spikes" recorded during those 20 minutes to warrant an additional diagnosis of Epilepsy to our existing Rubinstein-Taybi Syndrome, Cerebral Palsy and Autism diagnoses. Sam struggled a little with the two hour anaesthetic needed for the MRI, which was to scan both his brain (for possible causes of the sudden change in seizure activity) and his spinal cord (to rule out re-tethering) but thankfully after about an hour-and-a-half his oxygen levels and blood pressure returned to normal. 

The MRI confirmed the previous MRI's reports of Periventricular cysts and the RTS-related partial absence of the Corpus Collosum. However, this most recent report specified something new...static encephalopathy. It is effectively another form of Cerebral Palsy to add to the Periventricular Leukomalacia, but it is too an additional form of brain damage which was not there three years ago...and that's the part which has me unsettled. Sam's paediatrician reassured me that it is a non-regressive disease but does mean that developmental milestones not yet acquired, will most likely remain so...unacquired. For Sam, those developmental milestones include things like walking, effectively manipulating a spoon, etc. 

While thankful that my Sam does not deal with heartbreaking medical issues like many of our friends do, there is still a sadness that comes with placing yet another obstacle (or two for that matter) on his path. There is also an underlying feeling of guilt which I cannot shake, despite knowing that it is something many mothers of differently-abled children deal with. Both the PVL and the encephalopathy are caused by oxygen-deprivation in utero and/or during is incredibly difficult not to dwell on decisions which were made by both my gynae and I during the last few weeks of my pregnancy...decisions which were undoubtedly instrumental in the difficulties Sam now faces. It does not end there...there is an irrational but incessant need to go back to where I was eight years ago, devoting every waking hour to Sam and ensuring I was doing everything within my power towards helping him progress...and on top of that a final layer of guilt that I am not doing that now. 

You get my eluded "good space" now? 

I can tell you one thing, with his RTS diagnosis at birth in 2009, Sensory Processing Disorder added in 2011, CP and Autism added in 2014 and Epilepsy and Encephalopathy added now in 2017...there is not a damn you're getting the flappy dude near a radiology department in 2020!! Lol! 

But, in true warrior style, we keep on keeping on and will find our way back to that good space. Till then...

Sam celebrating his friend, Ethan's,
birthday at school.

Happy to do tasks he refused
to do at home. Go figure!

Sam and Leeanne, his dedicated and
ever-patient carer.

Again...a puzzle I donated to the school
cos Sam refused to do it at home. Cheeky
monkey! Lol!

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