Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror
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)

Saturday, April 9, 2016

Shame, Superheroes and Acceptance

Wow! Just over two months since I last blogged! Hangs head in shame.
 
What's been happening here in Smurfville? I think I would need to be able to make some sort of sense of it all myself to be able to communicate it in a way that would in turn have it make sense to someone else. But I don't. So I can't.
 
Again, no major life-threatening matters clouding our skies nor anything which most would consider detrimental to one's quality of life, but yet they are issues which are just that...
Sam's eating issues are still erratic and perplexing, yet thankfully there has been some improvement this week.  For a long while he became so resistant to food that not only would he refuse eating it himself but would act out against anyone who was eating near him. This week, for the first time in months he asked for what used to be one of his favourite snacks - mini Marie biscuits. He did throw the bowl, contents and all, after two biscuits but it was a start. The next day Sam ate almost half of my toasted sarmie and seems to be back on track with eating again, which would've been great if we hadn't simply traded eating issues with drinking issues.
 
As those who know Sam personally are aware, he has a major sensory aversion to moving liquid of any kind...a water-hose running, water moving/splashing behind him in the bath and, always most entertaining, liquid in a bottle. Yes, at almost 7 years of age, Sam still drinks from a bottle...for two reasons :
Firstly, his oral defensiveness is so severe that trying to manoeuvre anything else besides his Avent teat passed his lips is a no-go. Also, he never closes his mouth around anything besides the teat...be it a straw, pump bottle, cup...whatever.
Secondly, Sam never had and still doesn't seem seem to have a natural swallow reflex, so even if you did manage to get him to close his mouth around a spout or whatever, he would more than likely choke on whatever liquid I'd managed to get into his mouth. Even after 6+ years on a bottle, he still sometimes chokes or somehow manages to get the milk up his nose, especially when I've tried to thin the Pediasure a little to try dilute some of those calories.
 
So warm Pediasure from a bottle has been his only form of hydration for many years. And still, Sam has never been 100% comfortable with even the bottle. A minimum of 5 bottles a day, every day, for the last almost-three years (because it took him 4 years to conquer enough sensory issues to simply touch the bottle) was met with the same process...the bottle would be handed to Sam (always at the precise temperature) and Sam would hold the bottle to his mouth and mentally prepare himself for having the liquid in his mouth. You think I'm exaggerating...being a little melodramatic perhaps? Close friends and family know the process well and have even joked good-naturedly that it looks as if Sam is first praying for his milk.
 
Despite there being some regression with the whole drinking thing, it has brought with it an unexpected benefit. While I can live with the refusal to eat, with Pediasure providing more than ample nutrition for it not to be anything more than a little disappointment at another step back, not drinking as well had me worried to the point of desperation. When pouring Pediasure into the lil dude's mouth from a cup/bottle lid resulted in such bad chokes that the milk would eventually spew from his nose, not to mention the amount of Pediasure which was being wasted as it poured from his never-closing mouth, it was time for some tough love...in the way of a Winnie The Pooh squeeze bottle. Granted there is no contact between lil dude lips and the bottle, but squeezing the milk in sure is a whole lot less messy and after a nasty choke or two, Sam seems to accept the squeeze bottle as a means of drinking and even seems less fussy about the temperature of the milk so big YEAH for not having to carry flasks of boiling water and a jug everywhere with us.
 
As it turns out, Sam's teeth seem to have been the problem with the drinking issue. His adult teeth push through before the baby ones fall out so in two separate places there were two teeth in one socket and I could actually hear the teeth grinding against each other when he drank, causing (I'm sure) the most horrific sensory repulsion. Since the one tooth has now fallen out (and escaped into the Bermuda Triangle that be the lil dude's digestive system...pretty much like every other tooth he's lost naturally) and the second loose tooth is slanting at an odd angle, drinking over the last 24hrs has been almost back to normal except that Sam will not place the bottle in his mouth himself...almost as if he doesn't trust himself to do it without creating that awful grinding again.
 
A re-visited challenge we're finding probably the most difficult is travelling. Sam has always been terrified of being in a car, but was least anxious when in my car with the most challenging part having been getting him into the car. Often there were frantic handfuls of hair grasped...little nails tearing at arms and neck when the 2 second manoeuvre to settle him into his carseat would require an ever-so-slight backwards tilting. But once strapped in, he would settle down quickly and that was the end of the panic. Recently though, when we've needed to travel as a group to a meeting or the like, I've had to put his carseat into a friend's car...which of course would not only result in the most aggressive car transitioning but a lil dude so panicked that his white-knuckled hands would not let go of the arms of his carseat, back arched in super-defensive extension and breathing happening in short, shaky gasps...even though I was sitting next to him providing deep-pressure comfort across his torso. Obviously I did this once too often because gone is the comfort he found only in my car and instead each and every trip we've made over the last couple of weeks has been reacted to as if in a strange car. It's fairly exhausting and any effort in the way of tidy hairdo's is destroyed within seconds of trying to get Sam into my car, replaced instead with what leaves me looking like I've been involved in the most heated of cat fights, with random loops of hair gone astray from my once-tidy ponytail and scrawly scratches for extra affect. Of course there's an upside...I've often joked that even if I won the lottery and could afford the most extravagant of vehicles, my little red tjok-tjorrie would still have to make do...but hey, now that the comfort once associated with that little red tjok-tjorrie is gone, there could be no more perfect time for an extravagant vehicle. Now to see about that lottery ticket....LOL!
It's too easy to become frustrated, impatient and despondent when facing some of Sam's challenges.  But can you imagine spending 90% of your life captive to one fear or another? Simply trying to create an idea of what it might be like lends me the confidence to say that I would not have managed to overcome many of the issues Sam has....so whether we're screeching like a loon in the middle of a shop,  nearly suffocating ourselves with the fear that goes with being in a car lately or diving face-first into a bath full of water because a ripple of water moved behind us...Sam remains my SUPERHERO!
 
April is Autism Awareness month and while Autism is just one of Sam's three diagnoses (together with Rubinstein-Taybi Syndrome and Cerebral Palsy-Periventricular Leukomalacia) it has, for some time, been the condition we struggle with the most as it is predominantly responsible for creating the challenges we battle when dealing with what should otherwise be simple day-to-day tasks...and so we are as passionate about raising awareness for Autism, as for the other two conditions.  Having said that, Sam's t-shirt sort of sums it up...
 
AUTISM AWARENESS IS SO LAST YEAR...IT'S TIME FOR ACCEPTANCE!
 

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