SAM...MORE THAN A CONQUEROR: Great Expectations

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)

Friday, January 18, 2013

Great Expectations

So, in prepping for the upcoming year, I sat down with Meghan and chatted to her about what we expect from her this year...good grades, more responsibility regarding tidyness and helping around the home...you know, the same things we've been "discussing" for the last four years or so. Of course Meghan took the conversation very seriously....for about the two minutes it took her to reach the front door so she could happily resume the bicycle & hula hoop races, hand tennis games, treehouse building, archery competitions and the like which have kept her and her neighbourhood friends entertained literally from sunrise till sunset, almost every day of the holidays when we were at home.

Yip...this sure looks like a kid who's snapped out of holiday mode

Then I sat down with Samuel and shared our expectations for him for the next eleven months. There were no biggies, just a few minor things like learning to either hold his own bottle (Oh, yes please!) or at least a sippy cup...AND.....learning to walk. Now that we've mentally prepared ourselves for these events, we've gone full steam ahead into the necessary "training" required for both of these conquests.

So the sippy cup task is going well! Sam's aversion to holding his own bottle is just so completely mindblowing. I've discussed the matter at length with all three of his therapists but no-one can really say for certain what the problem is. There is definitely a major sensory element involved as he's on the verge of gagging if I try and place his hands on the bottle. There's also a co-ordination and a simple physical ability element involved as Sam cannot grasp the bottle securely in one hand with his little thumb but still mostly neglects using his right hand unless you remind him that it's there when you see him battling to do something with just his left hand. While he seemed relatively willing to touch the sippy cup, albeit quite gingerly, he would not allow me to put the spout anywhere near his mouth. There was a time when I could squirt little sips of juice, etc into his mouth from a squeeze bottle but he's also stopped tolerating that. So....perhaps it will be easier for me to learn to deal with the awkwardness of having strangers look on with confused and (too often) disapproving faces at me bottle-feeding my almost 4 year old son.

With Brampies having moved out at the end of last year, working through each day's chores has become quite challenging so it's been wonderful to have Meghan helping out with Sam where she can.

Don't worry - he's face looks like that when I feed him too...LOL

Sam has become delightfully brave at attempting new textures with regards to food. Of course there has to be at least a one-step-forward-one-step-backwards balance with Sam, so he's not too keen on the squeeze bottles anymore but while reclining comfortably against me while I sat eating my supper one evening, a little hand reached in under my arm and helped himself to some of the food off my plate. The very next evening Sam sat at the counter while I grated some cheese and after I pushed the plate out of my way and, unintentionally, within his grasp Sam helped himself to a handful of cheese as well. Unfortunately though Sam eats extremely slowly so when we're reaching the forty-five minute mark on a "solid food" meal, I resort to pureed food rather just to make sure he's getting enough nutrition.

I am so excited about Sam's signing at the moment...although he first had me a little worried. I've tried to teach him the signs for the things I feel he would most need to communicate to me...like "more" which he picked up a while ago, "bottle" (although it's a Sammified version of bottle as with many of Sam's signs and I am not sure anyone outside of our home would know what he's indicating) and most recently, "sore". Now "sore" and "more" not only sound the same when verbalised but have really similar signs too. Sam easily copied "sore" the moment I showed him but then started using it for "more" as well. Typical, I thought, not only did I NOT teach him "sore", I've now confused his "more" as well.

"Sore"

"More"

Sam, however, painfully reassured me that he had in fact mastered "sore" when he knelt next to me while I packed his toybox away one afternoon and just as I closed the lid, stuck his hand in and got his little finger caught. While crying hysterically, he frantically signed "sore" over and over. Not the most charming way of having to find out but it certainly made me realise that I still tend to underestimate our little smurfy dude sometimes. I am loving that he can tell me whenever he wants a bottle, even though he seems to be having so many more bottles a day than he used to...I can hardly tell him "No" when I am trying to show him that signing will help him get across what he wants. Which makes it quite difficult to decide how to react when I put him into bed at night and each night brings with it a new "ailment" as Sam protests unhappily while signing "sore" and then points to his teeth...or tummy...or knee. Ai!

The Sammified version of "cry" - we are often ordered to cry for Samuel's amusement, especially Meghan in her most melodramatic manner. And often, while he is crying, Sam will passionately sign "cry" just to avoid any misunderstanding that he is, in fact, crying.

As you can see in the above pics, Sam's had another vomit-inducing, shriek-yielding haircut during which he emptied his entire evening's sustenance, including his Faverin, pretty much over everything within a 5m radius...which would include me, as usual. And that is not good. I've completely stopped Sam's Melatonin as it was just making no difference whatsoever to Sam's sleeping and was not worth the trouble it took to get into his system. The Faverin, however, has proved hugely successful so I take great pains to ensure Sam gets it each day...and keeps it in.

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