SAM...MORE THAN A CONQUEROR: Change the plan but never the goal

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)

Saturday, November 30, 2013

Change the plan but never the goal

Cannot believe it's the last day of November. And I've only blogged once this whole month, so had to attempt at least one more post, albeit short. This time of the year is notoriusly "crazy" as the school year comes to an end and brings with it all kinds of activities like concerts and prizegivings, etc amongst having to study and write exams, Meghan that is. We've only three school days left for 2013 and I can safely say that the entire household, Sam included, is looking forward to a little "chill" time.

Sam's behaviour is all over the place...we have surprisingly harmonius days, like Friday, when the little dude was the most charming smurf around. All smiles and co-operation during his physio session and sweet and friendly during a shopping trip immediately after physio, which is normally taboo with a capital YIKES! Followed by a day of up-and-downing in the car getting Meg to her different commitments. Today he has been completely unruly, throwing anything and everything he can get his hands on, causing mutiny during Meg's ballet prizegiving and just generally being grouchy. I am hoping that once our routine settles down again we'll see a little balance restored. Even when life is a little more peaceful Sam tends to act up on weekends when, inevitably, his daily routine is disrupted.

We have had quite significant improvement with Sam's walking. I ditched the towelling wedgey I'd fashioned on Sam's walker as, although it was providing the security he needed when using the walker, it definitely made his walking a little awkward. So, with Plan A proving unsuccessful, I fashioned Plan B...an old, stretchy belt attached to the walker which provides just enough security around Sam's trunk without hindering his movement. And, even more exciting, is that Sam has started pulling himself up on things again.

Success! Now Sam's more than happy to spend more time in his walker #phew

Heck yeah!

With Sam's testing all kinds of boundaries over the last few weeks I decided it was time to bring in some serious reinforcement when disciplining him and introduced a naughty chair. His first few sits were really quite traumatic for Sam, with his having sensory challenges with transitioning to and from a sitting position, but by the second day his being placed on the naughty chair was an opportunity for him to discover just how quickly he could "cute" himself out of punishment.

On Thursday Sam had his very first haircut at an actual hairdresser. The hair salon I had made the appointment with is super cute, decorated in true kiddies style with individual tv's and dvd players at each cutting station. As soon as we walked in though Sam started gagging purely from having to encounter a completely unfamiliar environment. Of course getting him to sit on the chair was not an option but the stylist cutting his hair was refreshingly patient with him and pulled up a seat we could both sit on, which is where she eventually succeeded in taking a few worthwhile snips.

The result (try as I might, I could not get this pic to rotate )...

There's been not a single other "Mamma" uttered at all :( But we persevere with getting Sam to repeat our very many requests to do so....or any other words for that matter. But oh my gosh, the kid's signing vocabulary grows by the day as he astounds us often with signs he has learnt himself from watching Mr Tumble or his iPad. His developed a bit of a defensiveness to water again, which is quite disappointing as Sam's evening bathtime has always been one of our favourite daily activities. Now, within minutes, he's throwing his bath toys on the floor and splashing around in frustration like a looney. I'm hoping this too will settle down soon, as I would often hang over the side of the tub, my face bare inches away from Sam's, and prompt some of our most intense speech therapy sessions.

So, with Christmas being just 25 days away, I guess it's time Smurfville considers putting up some Christmas decorations and an actual tree. I have to admit I am ever so slightly apprehensive about the entertainment value said tree and decorations are going to provide for Sam...watch this space!