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, November 1, 2010

Locked in my Heart

Over the past almost-eighteen months there have been so very many people who have left an everlasting footprint on our journey's path...some are family members, some are old friends, some are new friends, some are medical staff who have gone over and beyond what their "job" simply requires them to do to show that they truly care about Sam. All these people are so important to us - I have blogged about this before :) Besides the obvious blessing of having these people in our lives, is that we are able to tell them how special they are to us.

And then there are some who have unknowingly touched my heart :- About two weeks ago while whirlwinding through the shops, as has become the norm to accommodate Sam, I noticed a mom and a gran with what looked like about a seven-year old beautiful little girl with long brown hair tied in two pretty little bows, white leggings, a dark-pink top and super-rosy cheeks. Mom was looking slightly tense while she made an attempt to get her daughter to try on a pair of white shoes but nothing seemed out of the "norm" other than that the little girl seemed to have quite a generous helping of energy. A few minutes on while heading towards the till to pay, mom and daugther came whizzing past us helter-skelter through the aisles while in the midst of a terrible struggle to win control over the trolley which Jenna (the little girl) was trying excitedly to maneuver away from mom, completely caught up in her own little world totally oblivious to the commotion she was causing. I know her name was "Jenna" because as the couple flew past us, amongst appalled stares from other shoppers, I caught a glimpse of the desperately embarrassed look in mom's eyes while she cried in frustration "Jenna, I am going to smack you!" As we recovered from the near head-on collision that would have involved Chris and one Woollies trolley I turned around and noticed that the little girl was wearing a diaper and all of a sudden felt like I really had been hit by a trolley...or a lorry for that matter! And instantly my heart went out to mom and Jenna and I wanted to turn around and find them and tell mom it was all okay - not all the shoppers were rambling around wondering what kind of a mother she was for allowing her child to be so uncontrollable or mentally reaffirming what course of disciplinary action they would have bestowed upon poor Jenna...I wanted to tell her that we understood, but she was gone. Meg and I walked up and done the aisles while Chris stood in the queue but they had instantly disappeared.

Friday's story is a little more joyful...again, after zooting through the shop on Friday afternoon for wrapping paper for Mattie's and Payton's birthday pressies, we were walking up and down trying to assess which queue was the shortest. After Meg and I had finally resigned ourselves to the fact that the queue Chris was already in was indeed the shortest at that time, we had to "excuse me please" through the other shoppers which had since joined Chris' queue. After my last "excuse me please" to the couple directly behind Chris I went to stand in front of them with Sam on my arm. The woman's face instantly lit up in delight as she started laughing out loud then, after shoving her handbag into her husband's hands, snatched Sam from me while exclaiming to her hubby how cute Sam is, told him to look at Sam's hair, at how Sam was laughing at her....and so on and so on. Anyway, this went on literally the whole time until it was our time to pay, amidst amused shoppers and just before we turned to leave she asked how old Samuel was (yes - she already knew his name by then) and when I told her & after she commented about how tiny he is, I explained very briefly about RTS and she told us how that just made him even more special than he already is and then she told us that she has Turner's Syndrome and that she cannot have children. She gave both Sam and I a hug goodbye and as we turned to leave, exclaimed loudly to Sam that she loves him.  Once in the car getting ready to leave the parking lot I told an unconvinced Chris that we should go find them (amongst the three hundred odd cars parked there) and give them our contact details "just for sommer" (a South African term meaning "just because") but finally sanity prevailed (Hey, there's a first time for everything!) Still, deep down I wish I HAD stalked them down like a looney because the nine or ten minutes which that beautiful, amazing young woman spent in our lives has left an incredible impression and I really wanted her to know that. But now, all I can do is pray that, with the help of our awesome God, that she will one day become a mom.

There have been others, many others, whose compassion and empathy you can truly "feel" even with the briefest of meetings, as they will tell you how wonderful Sam is and wish us strength and grace. So while I know we've still to really do our "time" with people who will be more judgemental than understanding, I also know that in this particular part of the world, in this particular time there are so so many wonderful, caring people just wandering around waiting to make your day :-)

2 comments:

  1. Once again your great sense of humour is so infectious. A really awesome story and yes the world is so full of incredible people and somehow they just seem to find you in the most strange places. You had just encountered one of the Angels that roam around working their magic when we most need it. Sam is of course so irresistible and friendly and through him you will still meet many many such angels, just as I have done.

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  2. beautiful! i agree that we should acknowledge other special kids as people, especially during difficult episodes...we all need the encouragement!

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