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, January 4, 2011

What's the only thing worse than a child that cries himself to sleep every night.......

A child that cries himself to sleep TWICE every night!!

Well, here we are....sleep deprived, baggey-eyed and pretty much clueless as to what could possibly be going on with our little Smurf. Okay, perhaps not clueless, but sleep-deprived and baggey-eyed nevertheless. On Sunday night, contrary to my post, Sam went down for the night with a lot more ease than the previous night...well the first time at least. Sure he moaned and fought me off like the Conqueror that he is (After all, how can we praise him for being a fighter but then expect him to be submissive when it's easier for us?) so after forty-five minutes or so of carpet-pounding and several elbow's to the ribs, he fell asleep. The second time round was also not too traumatic (for us, that is) and he fell asleep quite quickly again. But for about a four hour period, every few minutes, his little body jerked as it does with the startle reflex. And when his body eventually lay still, his little hand kept jerking/making-grasp-like-movements. Now, I don't know if a sensory/reflex problem can apply when you're asleep?

Last night he screamed himself silly, BOTH times he was put to sleep (like clockwork, he wakes up crying at about 9:45pm every night). He thankfully had none of those little jerky-type movements, but moaned quite often. Also, he has this kicking-thing....now I know that rocking, swaying, tapping, etc are all forms of self-stimming...has anyone ever heard of kicking as a means of self-stimming? Well, it kinda seems like that's what he's doing....he'll do it for four or five minutes, even in his sleep....just kicks his legs out in front of him (but they must be making contact with something...he'll move until his kicking the side of the bed, your face, your tummy...he's not really THAT fussy as to what he's kicking). As a family, we said we want to eat more healthy this year, exercise more, etc (Gee...this all sounds sort of familiar) but I think Sam is taking the whole exercise thing just a LITTLE too far....we're not that dedicated that it calls for middle of the night aerobics Sam...or would that be Smurfercising!

So, now we're trying to decide which is the lesser of these two "evils"....falling asleep more calmly but having a good few hours of jerky-episodes through the night...or screaming himself to sleep but with regular intervals of smurfercise during the night. Well, we've received referrals to two OT's, hopefully one of them will be able to help us ASAP so that we'll have a few more "bedtime options" to choose from :-)


4 comments:

  1. Oh Nicky, I am praying that this too shall pass. The OT thing is the best option but the sleeping pattern is something else, maybe its got to do with the trauma of surgery or maybe he just needs something to settle him down again have you spoken to the Paed. Could it be pain related, its never a good idea for these little scraps to cry themselves to sleep. I so feel for you and of course poor Sam who cant tell anyone whats up. God bless

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  2. Hi Aunty Anthea. I've just made an appointment with Dr Bristow for 3pm this afternoon, so here's hoping there's nothing else causing Sam's unhappiness other than the trauma of the op. Weird thing to hope for...but there it is!
    Hugs

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  3. Nicky, let us know what the dr thinks? Good luck for tonight! Will be thinking about you and little Smurf.

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