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)

Monday, June 11, 2012

Progress vs Regression


Life with Sam...and in general really...has been a little hectic lately - a relentless whirlpool of studying, therapy, ballet concert practices, way too many failed shopping trips, way too few hours in the day, sensory progress, sensory regression and, as always, an unwelcome v-word session or two :) Not made any easier by the fact that Sam's sleeping (Surprise! Surprise!) is still very eratic which doesn't leave much blogging time (or any other time for that matter) during the day and a severe lack of energy, concentration and, quite often, awakeness (on my part, not always Sam's) by 8pm in the evening.

So let's start with the sensory stuff....particularly the "progress" part. For a very, very long time Sam has been tactile (among other) defensive...particularly with balls and balloons. Sam absolutely refused to touch any ball...regardless of it's size, colour or texture. A game of "catch" with Sam would simply involve the ball being rolled to him and Sam nudging it away with the back of his hand, in the direction of someone else who he would then instruct to pick it up and throw on his behalf. A couple of weeks ago Sam slowly and cautiously ventured holding some of his ballpond balls and now occasionally will even (albeit momentarily) hold a spikey or rubbery ball. He still requires a whole lot of motivating to throw the ball but, hey, progress is progress :) Such a basic yet fun interaction a parent takes for granted is being able to play ball with their child so when it's something you really have to work towards, you appreciate it just that little bit more.

And...the regression. Sam has never loved the sound of a vacuum or hair clipper or any of those appliances. In fact, he gets upset if he can even just see the vacuum whether its on or not. But one thing he did seem okay with was a hairdryer. Not that I ever tried to use it on Sam but I could at least sit him in his cot while I blow-dryed my own hair in the same room, without much ado. On Friday evening with the weather being a bit chilly and Sam's hair getting a bit long again I decided to try and blowdry his hair after this bath. To which Sam's prompt reaction was to gag the second I put the hairdryer on and then vomit all over the bed and everything on it. Last night, after Meghan washed her hair, she dryed her hair with the hairdryer in her own room with the door closed while Sam and I were in our bedroom with that door closed and still Sam cried and moaned and pointed anxiously at the door the whole time the hairdryer was on. So for now, balls are in...hairdryers are out.

We have found a temporary solution for the endless struggle to perform basic tasks like change Sam's nappy or dressing him. I say temporary because, if history is anything to go by, if it's a working solution that stays a working solution it just wouldn't be Sam :)  Trying to change Sam's nappy or get him dressed, etc has become a nightmare. Anything that involves Sam lying on his back is a no-no and believe it or not trying to change a child's nappy while they're standing up is just not that do-able...and yes, I have tried. So in pure desperation one day I grabbed the iPod which is mostly filled with kiddies songs and pressed the headphones to Sam's ears and....WooHoo...Wriggly Smurf became Placid Smurf. So now we've found a set of headphones which better fit those elf-like little ears and the iPod lives on the bed which makes for much more relaxed changing and dressing times...although you have to be super quick with vests and shirts obviously.





You can tell which song Sam is listening to by the relevant actions...
"If you're happy and you know it" in this case


Some more regression : about three weeks ago I noticed that when I had Sam on his feet, he would almost always keep his right foot on its toes and Sam's PT mentioned to me that she was really struggling to stretch Sam's right foot and leg. We discussed the possible causes, the scariest being a possible re-tethering of the spinal cord as I have noticed that Sam continously touches and fiddles on his scar. The following week Heidi remarked that the tendon had in fact become even more difficult to stretch and that now she was quite confident that, with Sam not walking yet, the lack of weightbearing was causing the tendon to stiffen which could ultimately start causing some serious problems in the future. I mentally kicked myself for shying away from Sam using a walker/gait-trainer....Sam's physical needs far outweigh my emotional struggles. 

Followed by some more progress : I left the PT session determined to find a way to get Sam "walking" and so every day since then spent two three hours (in stages obviously) walking Sam around the house and garden. Well...every day except for last Tuesday when my back and chest muscles protested furiously, leaving me out of action for almost the whole day. But on Wednesday it was soooooooo worth it when I walked Sam into his PT session...on two completely flat feet :)

And a random "so cute" moment when I left a basket full of laundry in Sam's play area and Sam sort through all the other items, very few his, and then purposefully picked out his blankey while leaving everything else discarded on the floor.



Venturing out in public with Sam has become such an anxiety-filled struggle that we seriously procrastinate about having to go into shops, etc and often resort to one of us staying home with Sam while the other attends to the necessary tasks.  With quality time together being really limited at the moment, having to re-think a basic trip down to the local shops or even attending a church service has become quite sad.  While Sam's iPad is still useful, to a point, in distracting him it is not always possible to carry with to a shop and, understandably so, not always seen as appropriate in places like church or a restaurant.  Hopefully there'll soon be a "progress" note to this particular regression :-)

In the meantime we have found an activity which both Sam and we as a family enjoy and relaxes Sam so much that he usually spends the majority of the outing asleep...





Mommy's super-precious little smurf xxx

1 comment:

  1. Hugs Nicky. There are sooo many days like this where it seems backwards is the only way our child's world goes. But eventually there is a forward movement again and we are encouraged. I have to constantly remind myself during the backward days that "this too shall pass" and one day in the future I will look back on this and barely remember it. You have been so consistent with Sam and I pray that he can overcome this extreme sensory thing and settle down to learning and growing. Hugs, Cindy

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