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)

Wednesday, October 13, 2010

And surgery it be

So our appointment with Prof F on Monday went well...not "well" as in Yeah! No Surgery! but "well" as in Prof did a thorough examination of Sam (as always - much to Samuel's disappointment) and, after collaborating with his team for quite some time, explained to us in layman's terms the pro's and con's of the operation. Basically, the tethered cord has already caused some irreversible neurological damage in just these short sixteen months, so the thought of leaving it unoperated on just to allow further damage is so much more terrifying than the thought of Sam having another surgery so soon. For now though, Prof F is overseas and only returning in six weeks so we will confirm a date shortly after his return. In the meantime, Sam is going to see a urologist next Wednesday, to fully assess his bladder issues - not too sure how this is done with a sixteen month old smurf, but should prove fairly entertaining.

Sam has been a little miz today, first thought it might be because of tooth no. 8 which just started showing itself earlier this morning...but by this evening, when he became really irritable and no amount of dancing, singing or jumping could cheer him up, I started wondering if he isn't starting to come down with something...I mean, in all fairness, it has been a whole like six/seven weeks since he last had the chest and kidney infection so he's due anytime now for the bi-monthly illness. Both Chris and I are also feeling a little under the weather, so it's not impossible that Sam's feeling the same way but without having the ability to whinge and moan about it as clearly as Mom and Dad!

Meg had her athletics day today and managed to survive the actual athletics without any major accidents (which is pretty impressive as it seems almost impossible for her to go twenty-four hours without hurting herself) but, at the end of the day, she spotted me driving up to the parking lot to fetch her and tried to run along the fence to "catch up" to the car and, in the process of trying to keep the car in sight, tripped and took a major dive into the concrete which has left her with these really attractive deep purple and red wounds on both arms, both knees and an extra big one on her right side. At least in Winter most of her bruises..and her bruises' bruises...get covered in long pants but when it starts warming up, like now, it's pretty frightening going out in public with her wearing short pants or a skirt/dress because at any time you expect to hear someone stifling a hushed phone call to the child protection unit to report the obvious abuse this little girl must be going through to sustain such marks and bruises. We weren't home long before she fell down the ladder from her bunkbed...tsk tsk. And do you think it makes her more cautious? Not.A.Chance!! I cannot count the times I have caught her balancing on the edge of that bunk bed trying to hang paper butterflies from the ceiling fan, hanging over balconey railings, climbing on top of cars, trying to balance on the beam of wood from which the swing set hangs, balancing tip-toe and soaking wet on the edge of the bathtub trying to take something off the top shelf in the bathroom mid-wash. One night, almost two years ago, Chris and I heard this blood-curdling scream which at first we thought were the neighbourhood cat's fighting as it almost didn't sound human...but next thing Meg came out of her room with a mouth full of blood...AND CHICKEN, as while munching on her dinner (which is always finished like a half hour after the rest of the family) she had been doing somersaults on her bed and misjudged and fallen flat on her mouth...mid-chew. So an emergency room and massively swollen, teeth pierced lip later...and, before the blood on her lip had barely dried, she was at it again.

Let's just hope Sam doesn't get any ideas from her...hee hee!

3 comments:

  1. DARN IT!!!! absolutely amazed that damage was done so soon. Im sorry. Always hoping the best for you. always.

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  2. You just never seize to amaze me with you wonderful humour amidst all the chaos. Must just be because you always know who has your back in all of the many challenges that you face on a daily basis. The toughest of us would no doubt have folded long ago but you just keep us all laughing and amused. Never knew Meg was such a tomboy lets hope Sam is not watching and learning here or you will have double trouble. The under the weather feeling is due to the weather being "under" right now and am wondering who stole the sun. Sam sure keeps you on your toes and the rest of us on our knees, will never stop praying that all goes well for him and you guys. Always in our thoughts lots of love, Anthea

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  3. Hi Nicky, I am sure all will go well with the operation and sam the little fighter he is will recover quickly... Jodie is going for her mri in about a weeks time... Love Vickie

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