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, April 12, 2010

THE FUTURE'S SO BRIGHT.......

..I JUST GOTTA WEAR SHADES!



And? So what if they're Build-a-Bear glasses?

You can make any shades look good if you're as cool as I am!

Oh my word, my poor child...the things we do for a laugh (you should see the "show" we have almost every night when getting him undressed for his bath, he has "legging-hair" and "vest-hair" and "shirt-hair".
CONFUSED?
Maybe this will help....

Seriously though, this isn't the first time we've put Meg's Build-a-Bear sunglasses on Sam and he doesn't half mind them - altho obviously we don't want to damage his eyes. Although, taking his light-sensitivity issues into consideration, maybe a pair of sunglasses wouldn't be such a bad idea.
So, anyhoo, Sam is slowly getting over his viral infection (slowly being the operative word). He sounds just like an old smoker in the morning as it takes a good hour or two for him to cough up all the gunk that is blocking his airways (I know - sorry for the graphics). But at least he was healthy enough for him and I to make it back to church on Sunday ("church" meaning that Chris and kids sit in the church/childrens' church respectively, and Sam and I pace out the foyer, the kitchen, the bathrooms (desperate times folks) and inevitably land up in an empty, darkened classroom with me perched on a teeny-weeny kiddie's chair (being a shorty has some advantages) where, two minutes before the end of the service, Sam eventually falls asleep. Yah! Maybe I should arrive forty-five minutes early so I can "con" him into believing that the service has actually started which then in turn makes him think he's fallen asleep at the end of the service, instead of the beginning. Mmmmm, worth some thought...not sure how the congregation will feel about not putting the lights on through the service and the worshipping and sermon being done in a whisper. Maybe I'm expecting too much...Hee Hee!
Seriously though, it was truly wonderful to be there on Sunday morning, Sam and I had missed a good couple of services and we have such awesome fellowship at our church - knowing such a caring, thoughtful and compassionate community has been an invaluable blessing for us.
With Sam being ill, we have also missed quite a few neuro-therapy sessions so tomorrow we are back into the swing of things just with a new therapist for this one time as Cathy, Sam's usual therapist, is not at the practice tomorrow....here's hoping all goes well (for Heidi's sake, not Sam's - his reaction to therapy takes some getting used to).
So, in keeping within the subject of "bright futures", something for the heart :-)
"One of the blessings of knowing God is that your life journey doesn't need to be like a map-challenged journey. A heart that seeks God's direction will be rewarded with guidance from Him because God DOES have a plan for each of us."
Carolyn Larsen
"The more we count the blessings we have, the less we crave the luxuries we haven't."
William A. Ward


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3 comments:

  1. BrandiApril 13, 2010 at 1:17 AM

    Love those glasses! We did the same thing with Build A Bear glasses last year with Nathan...too funny!

    Sorry your little guy has been sick...it's no fun for anyone!

    ReplyDelete
  2. ChristineApril 13, 2010 at 3:46 PM

    What a great idea, thpse build A bear glasses! I never even thought of that. I love all your pictures/ Sam is so cute. I'm glad to hear he is feeling better

    ReplyDelete
  3. AnonymousApril 13, 2010 at 9:51 PM

    He is so sweet with his glasses on. I love seeing the pictures of Sam.. He reminds me of Noah when he was a baby.

    ReplyDelete

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