SAM...MORE THAN A CONQUEROR: Same Old Same Old

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)

Monday, July 2, 2012

Same Old Same Old

The past week or so has been a bit all over the place in Smurfville...sometimes diving into anxious waters and then suddenly soaring high...then diving again. Basically the same old same old.

At Sam's orthopaedic appointment two Thursdays ago, Sam's OS tentatively scheduled Sam's foot surgery for the 26th July to be confirmed once he'd seen the x-rays we were to have after the consultation, as well as further confirmation from the other surgeon involved. Not the best news for our little smurf, who I'd so hoped would be able to go at least six months or so before another surgery. Still, the consultation ended on a high when Dr dT advised us that there would be no charge for the consult as, technically, he no longer saw private patients but that there are one or two children who he can just not get out of his heart...Sam being one of them. Aside from the obvious financial relief, Dr dT's statement brought tears to my eyes...having a doctor or any other medical practitioner share with you that they too are emotionally invested in your child (especially when there's no financial benefit to themselves) is something quite wonderful.

This particular high unfortunately received a slight blow shortfly afterwards when the doctor we'd hoped to bring in for Sam's anaesthetic, advised that he would be overseas over that period. Then, last week Thursday, Dr dT sent me an email saying that Sam's x-rays had shown an improvement on the angulation of that big toe and that, although he was still in the process of obtaining additional input from his colleagues, there was a good chance the foot could be treated non-surgically. The worst case scenario, being that Sam still needs surgery, we would reschedule to accommodate our anaesthetist as the other surgeon involved could in any case not make 26 July. I replied to Dr dT's email with a very mature "Woo Hooooooo", literally bounced into Grampa's room (rudely interrupting his time with Angus Buchan) to announce the good news, then did an almost hysterical dancing-handclapping jiggy round the lounge with Sam (almost on the verge of tears by now with all the commotion), put Sam down and went in search of some anti-inflammatories for the muscles I'd most certainly pulled!

Our high got a bit shakey again by Saturday when Sam started wheezing and going all croupy on us. On Wednesday night he started throwing up as well and I dismally saw our little trip to Pearly Beach slowly slipping away.

But alas, here we are....three sleeps from Pearly Beach with a congested, slightly whingey little smurf but (thank goodness) nothing more serious than that as yet and literally just HOURS away from the Inaugural World RTS Day tomorrow (don't forget to wear your purple and yellow). Disappointingly, even though I managed to send out a few more articles to various local publications, none of them seem to have been published. I might have had a bit more success if I'd had the time to push them a little harder but unfortunately Sam's been a bit too clingy for me to achieve much of anything over the past few days. So at least I have the World RTS FB Event to look forward to - although I don't have the foggiest clue how to actually "attend".

Have I mentioned Sam's chair fetish before? If not - Sam is absolutely obsessed with chairs...plastic chairs, wooden chairs, his feeding chair, upholstered chairs, small chairs, huge chairs, tiny dollhouse chairs...and especially blue and brown chairs. Ballet recitals, school concerts and even doctor's waiting rooms are an absolute delight for chair-gazing for Sam. A few weeks ago Sam added slides to his fetish and now excitedly points out any slides he manages to catch a glimpse of...even if its for a split second in the background of some random tv show or book and even when its not actually even a slide, like the little ramps on the toy car garages, the ramp in his PT's room, etc. For the first time in his, almost, 3 years in this house Sam's noticed that we have a great big slide in our very own backyard so whenever its warm enough he loves going outside to "slide" (which entails someone holding him and shimmying him down the slide with very controlled movement and then quickly picking him up before he assumes the ever-so-frightening sitting position).

These pics were taken a couple of weeks ago.....