SAM...MORE THAN A CONQUEROR: An abundance of FIRSTS!

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)

Sunday, October 30, 2016

An abundance of FIRSTS!

Sam's very first school term (semester) has come and gone..hard to believe that it's been more than three months since I sent Sam's tutor dismal messages about not being able to find the 'right' carer for Sam, which would prevent him from starting the term with every one else just five days later. Yet here we are several classwork activities, one progress report and a very-first parent/teacher meeting later. I still find myself occasionally bordering on disbelief at the unexpectedly painless transition from homeschooled to classroom for Sam...if I've said it once, I've said it a million times...this is just not how I expected things to go. But, have no doubt, there are no complaints about avoiding the resistance I anticipated.

It was incredibly emotional opening Sam's bag up at the end of the term to his report and classwork books, sent home for review. Sam thoroughly enjoyed going through his school books with me and pointing out the activities which were obvious favourites :

As was expected I guess, Sam's immune system did take a bit of a knock and we had a bit more of a troublesome Winter this time round (bar our fab run in with Rotovirus last year). Thankfully we've stuck mainly to URTI's and a coupla bouts of croup (although pretty resistant bouts) which is hardly anything to really complain about.

There have been some other unrelated 'bumps' as far as health goes...a few petit mal seizures (which were accompanied by an uncharacteristically sleepy Sam), the hallux varus in Sam's left foot seems to be worsening at an alarming rate and, just to make sure we're covering as many areas as possible, Sam has two fabulous talon cusps sprouting in that already-funky little jaw of his.

The petit mal seizures seemed to have righted themselves and the.most.painless.blood tests.EVER confirmed that Sam's Epilum levels are spot on. And yes, I can say that Sam having his blood drawn was painless on his behalf because we went into the pathologists late one evening (which should only have made the process more traumatic with Sam not liking his evening routine disrupted), wrapped Sam up tight in a blanket to help get a grip on his (usually) pretty powerful struggling and mentally prepared ourselves for the auditory onslaught which would undoubtedly be assaulting our ears. And yet, although the lil flappy dude was shaking with fear, the needle went in with ease (after a few iffy attempts at locating a vein which is almost always impossible and something we seldom do without anaesthesia) and almost instantly the blood flowed into the tube. And that was that...not a peep, not a tear. The sleepiness largely seems to have righted itself as well, with the exception of one or two random incidents last week. Sam's iron levels came back a little high (just over double what they should be) which was a little unexpected for a kid whose diet consists mainly of gluten-free pasta and he seems to be struggling to regulate his body temperature more than ever before, particularly at night and in the mornings despite usually having on a least one extra layer of clothing than what everyone else has. We eagerly await the new 'medical' year so that we can run a few tests to make sure that there is nothing ominous going on with Sam's pituitary gland.

With 'firsts' being the order of the day...month for that matter...there have been a few more surprises. After struggling to get Sam to tolerate any other liquid other than warm Pediasure, Sam now manages about 100ml of juice from a squeeze bottle when at school! (And, yes, he of course refuses it at home). About a week ago while sitting on the couch reading with him one afternoon, Sam asked me to put his specs on. Sam ASKED to have his specs on!! The very same specs which over the last 7/8 months get flung violently across the room the second they come within arm's reach. So last week I sent the specs to school with Sam's carer, Leeanne, and asked her to just try and put them on for short periods of time...by Friday not only had Sam asked for them again, but had kept them on practically the whole day. While I am a little worried that Sam's eyesight possibly deteriorating may be the cause of his sudden eagerness to wear the specs, on a positive note (other than the obvious YAY for wearing them) it makes me think that Sam is so keen to soak up as much as what he can from his activities at school that he's prepared to do the necessary in order to learn more, which in turn means that he was able to quite effectively REASON through the situation. Not too shabby for an ineducable lil flappy dude hey?

Amongst an overwhelming number of things to be thankful for during this unexpected, yet very welcome, twist to Sam's journey comes one 'tiny' regression and that being that Sam has effectively decided that life from here on forward shall consist solely of home and school! There shall be zero tolerance for any deviation from the, now, extremely limited scope of accepted social activities. There was a short, one-week school break a few weeks ago and already on the Saturday after school closed (on the Friday) Sam was signing "school". By the Thursday I was about ready to go deposit him outside the school gate in anticipation of the Monday's return to 'normal'. The fact that we live 3 minutes away and drive passed the school regularly, does not help at all...LOL! So yeah, the lil flappy dude is not currently in the running for social butterfly of the year but it's an extremely small price to pay for the peace of mind that comes with knowing that he's exactly where he's meant to be.