SAM...MORE THAN A CONQUEROR: Apologies for soiling your charmed life m' lady

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, July 23, 2014

Apologies for soiling your charmed life m' lady

Have I mentioned that the little dude now weighs 18kg's? That's the average weight of a 'normal' five year old kid. So the slow weight gain associated with RTS has been conquered...awesome! Well...um...mostly awesome. Just the 153cm's of mom carrying those 18kg's of awesomeness around is taking a little strain. And while most of Sam's body grows sturdy and strong, those little lower legs seem to be fading just as quickly. So walk the smurfy lil dude must.

Sam is having to re-master his walker. When he first got it, he used it the wrong way round as his fears and anxieties kicked into overdrive when encountering life so far off the ground, without any form of protective shield in front of him. To start with I was just so thrilled to have him straying from his knee-walking at least a little that I didn't consider the repercussions. But seeing that Sam was adopting more of a 'pushing' stance made me realise that he was in no way strengthening his core muscles which he needs to do if walking unassisted is ever going to be an option and also, he was in actual fact being given a false sense of security...much as a baby's walking ring would. No wasted moments though, he simply would just not have used the walker at all otherwise. Baby steps, see :)

Having grown more confident using the walker correctly around the house and at therapies, I decided it was time to hit the big, bad world! Off we went to our local Spar, the same place we tried out the 'incorrect' method. Determined to avoid all things 'normal' the first place Sam heads is....the fruit and vegetables aisle! He has a fascination with, mostly, bananas and pineapples and it is very seldom we leave a store without bananas so if ever you run out, you know where to go.

It would be fair to say that using the walker this way, which makes his dragging right foot a little more pronounced, certainly makes for an awkward-looking gait but hey, my general all round clumsiness and tendency to trip over non-existent obstacles makes me look a little awkward too. His smurfy swagger usually brings a smile from others, occasionally a pretending-not-to-stare stare and sometimes...a little more often than it should...a very purposeful look of disapproval.

Disapproval? Why so?

Because I have dared to expose our 'tragedy' to those who know nought of such things, who resent you for imprinting even just briefly upon their minds the fact that such 'imperfections' even exist.

Sound like an oversensitive mommy rant to you? Tis not! And here's why I know...as the deliverer of this disapproving look squeezed passed our awkwardness, my 13yr old daughter...usually preoccupied with watching herself doing various renditions of 50 Epic Dance Moves in the shop windows or reassuring me that she would not have jayboarded straight into that oncoming car had I not literally grabbed her by the collar...paused mid-Meghaness to note how Sam and I were both being scowled at. Like, wow, really???

Now it's fairly easy to understand why, although I see plenty fellow-journeying moms at therapies or out in force at get-togethers, I very seldom run into them in random places. It's really quite sad, don't you think? Iris House Children's Hospice gifted us all with these wonderful little 'ice breaker' cards for our kiddies...I'm going to ask them to add to Sam's, in big bold print, NOT FOR SENSITIVE VIEWERS!

Nah...just kidding :D

Thankfully, our little 'really?' moment is completely overshadowed by more heartwarming incidents like when a friend, at the same store, has already packed herself, her family and her parcels into her car and is about to drive away when she spots your smurfy entourage across the parking lot and leaps out to hurry over and say hallo!!! A small happening to some, a meaningful heartfelt gesture to others xxx