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)

Tuesday, July 23, 2013

The lifting of spirits...

 ...is becoming quite the challenge with our little smurf. There are very rare moments of happiness and peace throughout Sam's day...occasionally none at all. For the most part Sam is anxious, agitated, distant and pretty darn hostile to most things. It is an incredibly sorrowful sentiment for a mom to share about her child...it is even more sorrowful when we're battling to pinpoint the cause/s.
 
And so we resort to one of the few things which still bring a smile to Sam's enchanting little face...swinging.  And lots of it.
 
 

...we swing when the sun shines...

 

...mesmerised by our swinging shadow.
(Not as mesmerised though as Mom about where his slipper's got to).  


We swing when the sun doesn't shine too :)
 

And, as terribly exciting as what it is standing swinging a little smurf for up to an hour at a time (although not as exciting as the neighbours having to listen to my swinging adapted songs : The Sammy on the Swing goes up and down (Wheels on the Bus), Old Macdonald had a Swing, Hickory-Dickory-Dock, the mouse ran up the swing...the swing struck one, the mouse fell down...and so on and so on) every so now and again we have to actually go inside and attend to life.  But never fear,  Sam's baby swing is near...

Swinging with Barney and Baby Bop
 

Ooooh! So that's where it went.
 

 
 
At best I'd have to say we're stagnating a little with Sam's progress but the truth is there's been slight regression with some things.  While Sam's still taking some "normal" food, we're back to a fair amount of pureed food.  Sam's heightened sensory defensiveness is the most troubling issue right now.  He is, once again, absolutely petrified of the "small things" he was doing okay with just a few weeks ago like being able to...
 
OH!
MY!
WORD!
 
...I was just about to type "being able to stand and cruise along the bath in the evenings". 
 
Where on earth is my mind? I keep saying it's almost as if something happened (eg. a fall) to make him frightened again because even just handling him in your arms is pretty challenging, if you lean him too far backwards or sidewards he freaks out and grabs whatever he can hold on to as if you're about to toss him over the side of a 30-storey building.
 
And I just remembered that a few weeks ago, while standing watching me ready his bath he suddenly released both hands and took a nasty tumble, landing up with a swollen and bloody lip. I think I even posted a pic on FB (I've come to the conclusion that FB is my blog's greatest enemy). Okay, so that's one mystery solved. Now to try figure out why he has become so much more flappy and stim-seeking, frustrated and angry and completely distressed with the slightest bit of social interaction.   
  
Because of the amount of body-bashing Sam does to fall asleep and, during the course of the night, to get himself back to deep sleep, we decided a couple of months ago to change Sam's cot-bed set into the little bed.  However, despite the awesome custom-made bedguard Dad made, Sam refused to sleep in the bed. So, trying desperately to revert back to the things which had previously seemed to work for Sam (he was quite happy throwing his little body violently against alternating sides of his cot, it was us who couldn't bare to watch it) Dad put the cot-part of the combo back together over the weekend. 


Sam's quite happy to sit and iPad in his cot, but he's not doing a whole lot of sleeping in it yet.  Patience.

Sam's sign for "cry".  He keeps instructing everyone to cry. 
 

Random : Taking the Tubbies for a stroll and, even though it leaves little place for his hands, he insists on all four of them coming along :)
 
 
We're starting a new adventure tomorrow...I really have my heart set on it being a blessed adventure for everyone concerned so here's hoping...xox
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1 comment:

  1. PattyJuly 24, 2013 at 2:15 AM

    Hey, Nicky. I'm so sorry to see that Sam is having a hard time. I remember those miserable days well... we went through them as well, and the swing was the answer in our house too. I don't know if you've ever thought about changing Sam's diet, but that is what really helped Stephen. We went gluten-free about 18 months ago, and it changed everything for him. He accidentally got a full gluten meal in June when we were at Disney World, and he was a mess for a few weeks afterwards. I don't know... maybe it will help Sam? (((HUGS))) sister. Keep fighting.

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