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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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, June 18, 2017

As the parent of a differently-abled child...

...how hard should you push? How sure can you be that you're allowing enough consideration for health, physiological and emotional wellbeing. How sure can you be that you're not allowing too much consideration? And on which one of those would you most prefer to err?

A few years ago (and by "few" I mean ten or so...and that's where I'm leaving it), I travelled a fair distance to work each morning making my way into the CBD via either bus or train. Because I cannot pinpoint the exact year, I cannot remember exactly which mode of transport is relevant to this story but as I am leaning towards 1996/1997 (yes, okay...so a little more than ten years maybe) I am inclined to believe it is the bus. Travelling what seemed to be the same route a few times, was a young man who appeared to be roughly the same age and whose constant companion was his remarkable guide dog. So many times I watched the intriguing pair navigate the busy streets along Cape Town's Foreshore and brave the city's public transport (which was a courageous enough task for even the sighted) and could not help but stare intensely at the young man, hoping for the slightest sign of sight because my heart broke a little each time I saw him, at the thought of his having to encounter such formidable challenges each and every day...alone.  While my memory is a little sketchy about the minor details (like whether we were travelling by bus or train, what with them being so similar and all) after all my "intense staring", it would be fair to say that I'd have recognised his face anywhere!

A week ago our NPO held a fundraising event and the guest speaker was a gentleman by the name of Hein Wagner - A blind man with vision. Hein, who now lives predominantly in Sweden with his lovely wife and daughter, hails from South Africa and had travelled to his country of birth alone to speak at our function. I had read his biography a hundred times by then, had copied it into several media documents...but had never thought to look at any pictures. Hein's lifetime accomplishments read like something out of an incredible feel-good movie. Few sighted men could achieve all that he has, so to say I was excited and very nearly intimidated to meet him would be fair. Hein entered the venue on the arm of a colleague and my heart stopped. Yes it had been about...ahem...ten years (give or take another ten) but that face was all too familiar. His presentation was profound! Amongst other things, Hein spoke about how grateful he was to his parents for insisting he learn to become independent, placing him in a boarding school for visually-impaired students 100km away at just five years old! While I have no plans to ship Sam off to boarding school (although this is a traditional punishment I have threatened all of my children with), Hein's message inspired me to rethink the way in which I approach Sam's challenges and, in turn, the attitude I instil within him to approach those challenges.

Having done several rounds with many of the obstacles Sam struggles with the most already, I thought it was worthwhile revisiting the more fundamental tasks which, although perhaps appearing "basic" to many, would make a significant difference to our daily lives. So first up was independent feeding - with the complex puzzle which makes up the lil flappy dude's brain, one of his trickiest challenges is fine and gross motor planning leaving eating independently as something we have not yet been able to master. This weekend seemed as good a time as any to try again...
video
video

Sam's movements lately seem to be hindered by an increasing amount of tremors and shakiness, but after a few more tries he really seemed to get the hang of manipulating the spoon which also seemed to ease the flow of his movements a little. A change in utensils (I foresee mountains of dirty dishes in my future while we figure this out) and Sam was not only more comfortable with the process, but was even scooping up stray food from his chin!

We will of course spend some time on this new goal before we move on to something else (and right now I can't even imagine what that something else would be) but, as with any form of progress for a child with specific needs, the joy of seeing how impressed Sam was with himself and the encouragement of what a little perseverance and motivation can do, was pretty darn awesome!

And so...did I ever find out if Hein is in fact the young man who I witnessed so many years ago? I'll never know!! My lacking self-confidence and social awkwardness prevented me from asking him outright, despite him being very friendly and approachable. I have considered indulging in some Facebook creeping (because once you've been an intense starer there's little else more inappropriate) to see if I might come across a photo of him at around twenty years of age but the thought of finding him with a short, trendy hairstyle then like he wears now as opposed to the long, almost shoulder-length bob I remember the young man having then, would be strangely disappointing. So, for now, I fancy the idea that Hein Wagner is in fact the blind, young man upon whom my senseless sorrow was wasted as while I thought he was out feeling overwhelmed and vulnerable, he was in fact out conquering and overcoming πŸ’œ



Wednesday, June 7, 2017

Does he know...

...that he is different? I've wondered about this often before but could never really come to a solid conclusion and, honestly, wasn't sure it mattered much. About a month ago we sat in the ENT's office...I say "sat" but mean "flapped, whinged and occasionally shrieked"...with Sam becoming increasingly agitated as our wait ticked past an hour. The younger, more mobile patients (all 'typical') provided Sam with a momentary distraction as they played on the mat, hopped around, etc. but once that moment had gone (all 5 seconds of it) Sam resorted to taking occasional swipes at them, especially whenever one sprightly young kiddo entered his personal space...which personal space, with about 4x4m² being shared by four other children, had had to become remarkably conservative!

The doorbell rang and I cringed inwardly at the thought of having to tap into even more adept ninja moves, intercepting Sam's frustrated swipes at now FIVE moving (and thankfully, blissfully unaware) targets. A youngster of about 12 quietly entered the room with his adult companion. With my back being to the door and my neck currently alternating between despairing states of immobility or excruciating pain (but Yay! for still half-gracefully being able to carry 30kg's of flappy dude around right?) I had a limited view and decided a not-too-welcomed bear hug was needed by Sam at the very moment the newly-arrived patient had to brush by our chair into the room.

Surprisingly, no swipe...no smack...just the most magnificent smile as Sam watched the boy take a seat in the corner and pick up a magazine. As he settled quietly into his chair and I was able to glance more easily at the newcomer, I found myself suddenly fighting back overwhelming emotion as I instantly recognised his Down Syndrome characteristics. For the rest of our time in the waiting room Sam smiled, happy-flapped and ooooo'd admiringly at the very reserved youngster, the other energetic and now also agitated kiddies having suddenly become invisible. Sam has always shown recognition of other physically differently-abled children, for instance, when walking in a busy shopping mall he will quickly point out a child in a wheelchair, but this was more than simple recognition...it was a resonating of shared journeys and an instinctive knowledge that Sam and this boy were the same kind of different! Understanding this 'recognition' when the object of Sam's attention is in a wheelchair or walker or similar means of support is pretty easy, but his intrigue this time round would not have been triggered by any outward 'hints' and although incredibly heart-warming, has left me somewhat unsettled. 

Because of having Sam's learning potential constantly undermined due to his physical challenges, finding a school which focuses on his cognitive abilities rather than the physical has been life-changing. With Sam suddenly seeming so perceptive to those around him though, I can't help but wonder what the effects will be of his being the only physically-disabled lil flappy dude in his school. I do see occasional inklings of frustration emerging (okay...maybe "occasional inklings" is a little conservative #eyeroll) but because in my heart I know that he would not thrive anywhere else, hope that I can find a way to instil upon Sam's heart the very thing I spend a decent amount of my time advocating for...that being "different" is not only okay, it can be a pretty profound state of being. Wish me luck xxx


Mother's Day this year was one for the books (or blog in this case) as it came complete with a school-made Mother's Day card from the lil flappy dude. Although I am pretty sure that Sam's not particularly invested in the sentiments of Mother's Day as, of course, every day is in fact Sam's Day (just kidding) he sure did seem super-chuffed with his card!


And immediately after Mother's Day the lil flappy dude went and turned EIGHT! With his birthday falling on a Monday, he had  a small celebration with his classmates, which he was just as super-chuffed about...especially because there were balloons involved, the object of Sam's most passionate love-hate fascination.



And immediately after his birthday (like literally the next day) Sam went into theatre for his umpteenth number of grommets and for us to finally have an opportunity to intervene and hopefully provide some relief from the nasty issues those talon cusps have been causing. 

The grommets were a breeze, as always! The talon cusps were filed down so that they now lie flush with the gum/palate and then a little of the surrounding gum was cut away to make room for the bulk of the cusp which has yet to grow out. Sam had also made light work of grinding another two teeth down into the gum. Luckily these were both still milk teeth which could be extracted to make way for the yet-to-make-an-appearance adult teeth. The work on the talon cusps proved a bit of a bloody affair and Sam was not entirely impressed with the generous mouthful of blood he woke up from anaesthetic with (apologies for the graphic details). Since the procedure, now three weeks ago, we have had a rather challenging time getting Sam to drink fluids. Follow up consultations have reassured that his mouth, throat and ears are all looking really good so it has been a little exhausting trying to figure out what the issue is, which issue is now causing some very unwanted bladder problems. For a host of reasons (which I am not going to go into now) Sam still drinks mostly from a bottle. Knowing his complicated sensory system, the chances are that the first few bottles after the procedure caused a significant amount of discomfort (we were warned this would be the case) and so Sam has now developed a negative association with a bottle. With another kid this could perhaps have been a blessing in disguise, an opportunity to animatedly introduce an alternate, way more fun drinking apparatus! This is, however, Sam...so I'm pretty much doing WWF-style moves while squirting small amounts of liquid down his throat. Could it possibly have gone any other way πŸ˜‰  

And, in closing, some recent school pics...just because πŸ’œ




Sunday, April 30, 2017

Layered

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 kid...at school...holding a paintbrush! It might seem a little blasΓ© 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 birth...it 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!