SAM...MORE THAN A CONQUEROR: I keep thinking to myself....

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)

Thursday, July 11, 2013

I keep thinking to myself....

...I must remember to blog about this and I must remember to blog about that. And then I don't. Blog or remember, not necessarily in that order. But I was adament I would blog tonight, so blog I will...even if there's nothing of particular interest in the post.

So, matter of no particular interest No. 1 : Sam has a lovely, white "spot"on his tonsil. It's been there for some time, just nowhere near as big as what it is right now and from what my good friend, Dr Google says, it's not going to be getting smaller on it's own...or with assistance. #sigh There are also signs that the little smurfy dude might be coming down with something. Meg is slowly getting over a bad case of something nasty and Brampies has just picked up that something nasty so I guess it's inevitable that Sam will be welcoming the something nasty into his system any day now. He's already not eating or drinking quite the same and fiddling non-stop in his mouth. Oooohhh, I just remembered one of the blog items to remember. At Sam's previous physio session he suddenly started scratching frantically in his mouth, particularly on his tongue. Both Heidi and I were a little taken aback and I watched him like a hawk after his PT session as I was sure then already that he must be starting with a sore throat. Luckily it never happened again that day, or for the rest of that week either. The very next PT session it happened again! Within minutes of starting Sam was going frantically at his tongue. Have you ever heard of anything so strange? I know Sam doesn't always love physio but this brings a whole new meaning to the saying "it leaves a bad taste in the mouth" :/

Ah, another blog item to remember...my good friend, Marili (mommy to Sam's horse-riding partner, Antoni), introduced us to a wonderful group of ladies who belong to Iris House Childrens Hospice (I know I mentioned them in my last blog). Anyway, a couple of weekends ago we received an invite to the opening of a new McDonalds for Meg and Sam. Meg unfortunately could not make it, but we went along with Sam and had so much fun.

Being out in public with folks who are not going to stare at Sam's flapping/humming/spinning or look on in obvious disapproval at our ill-behaved and probably undisciplined little boy's "tantrums" when Sam has a meltdown, sure is a new and refreshing experience. We received another lunch invitation this afternoon to celebrate Mandela Day as a treat by a restaurant in a local shopping centre next Thursday. Of course I RSVP'd straight away and cannot wait to meet more of our new Iris House Family.

Even though we're meant to be in the throws of Winter here in South Africa, we have been blessed with some really wonderful weather which absolutely cannot be wasted staying indoors. We're fortunate to live just minutes away from a lovely little dam/pond and enjoyed a glorious walk there yesterday afternoon. I so understand the precarious situation our low dam levels might be leading us into here but, man-oh-man, I do so love warm, sunny days...so at the risk of getting shot down by my environmentally-cautious friends (Brampies being one in particular who literally cringes every time I say this)...bring on Spring!

Aaahhh...the good old days when Sam still napped (even if just for 20minutes) during the day. Although taking a look at that smile, you'd think he'd slept for a good hour or two. Daytime naps have, quite sadly, become a thing of the past with Sam which brings a whole new meaning to "suicide hour(s)" in this household.

I know I wanted to mention that I'd seen the odd post on Facebook over the past week or so about a couple of Sam's RTS siblings being subjected to unkindness and, I guess more accurately, discriminatory behaviour simply because of their being differently-abled and I had fully intended to have a quick quirp on this but, frankly, I am too tired. And even if I wasn't, would it really make a difference? The sad truth is so many people judge others by how they look, how they perceive their behaviour and manner, what value that individual can bring into their own shallow lives. Ít's not something that's going to miraculously remedy itself. The refreshing truth though is that there are still enough kindhearted spirits wondering around, who see passed a diagnosis and special needs, to give one hope and the strength to carry on. xox