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, October 7, 2011

Torture...pure T.O.R.T.U.R.E.

These are the words that have, very melodramatically, been delivered to me several times over the past few days by my Glee-loving, feigning dizziness, ever-putting-on-a-show daughter. On Wednesday, when we saw the hand OT at Vincent Pallotti, we could not find parking close to the hand clinic so had to park in the hospital's general parking area about 300 metres away from the entrance. I know what you're thinking...she's young, energetic and fit...or so you'd think, AND didn't have a squirmey-wormey smurf on the arm. But alas, when we left the clinic just before noon, it was quite a show she put on complete with moments of nearly collapsing to the ground with the "torture...pure torture" of having to walk so far to the car!

Yesterday was even more of a Meg-atastrophe...not only could we not find parking in the general parking area, we had to park on an upper level parking area, which meant stairs. THE HORROR!!! So again, when we left, it was amidst regular outbursts of "torture...pure torture". She really is such a funny kid. Chris desperately wanted me to take a video of her "watching" Glee the other evening (she watches each episode an absolute minimum of at least four/five times...every....single...day!). Who woulda thought Glee was an interactive programme and required the watcher thereof to mimic every move made throughout the show. You would have thought she'd be able manage the occasional transition between hospital and car then, right? Anyway, Meg has been an invaluable help to me over the past week - it's thanks to her that Kim managed to refit Sam's splint on Wednesday, this time without hysterical screaming which meant a much more effective fit. And yesterday kept Sam occupied through pretty much our entire appointment with Dr dT, so that I could concentrate on what was being said. So I have just reserved tickets for her and and I to go watch the new Smurf 3-D movie this evening...it's a surprise, haven't told her yet.

Oh yes...our mysterious "orthopaed" appointment yesterday afternoon. I was watching an old Hillsong episode while doing my own "torture...pure torture" on the spinning bike last night. It was about negativity and how even a remotely negative outlook effects everything...our thoughts, our actions...our perceptions! Yesterday was a prime example. Here's what I was thinking : last week, when we saw Sam's hand surgeon, I had asked him about the lack of fluidity in Sam's hand movements (eg. when he waves, it is done in a series of jerks as opposed to a flowing movement) and he'd said that he thought it to be a neurological issue. I didn't prod any further because the whole appointment lasted about two hours and of course, by then, Sam was doing his own remarkably accurate impression of Grumpy Smurf. But by the time we arrived back at home the whole "neurological" thing had had plenty of time to mull around in my head and I regretted not asking for more information. Then on Friday morning, when Dr dT's assistant phoned and requested that I bring Sam in, my mind went wild and I figured that perhaps Dr C had also been giving more thought to the neurological thing and done some further investigating and come up with a gloomy diagnosis, but wanted Dr dT's opinion on it before one of them shared the bad news with me! Seriously, that is really what I was expecting. Boy, was I wrong!

The real motivation behind the request was that Dr dT had in fact been researching and considering and researching and considering...and wanted to explain to me, in person, with the aid of graphics and Sam's x-rays exactly what is going on in Sam's little left foot and what the plan is to rectify it (and, to top it off, there was no charge for the consultation). Slightly off the mark I was, I'd say. And, yes...here it comes...I am absolutely loving Sam's specialist's at the moment.

The only drawback (is there ever not one?) is that we might be doing the surgery on Sam's foot a little sooner than I originally anticipated, possibly by the age of 3/3½ which would mean May-December next year, but I was hoping to only do the removal of the right testicle around April (which would mean a eight month gap between this and the last op) but with Dr dT and Dr J (urologist) being at different hospitals we would not be able to couple the two surgeries together, so let's hope we are looking more around the 3½ yrs mark for the foot surgery. I am becoming increasinly anxious about the fact that that little right testicle is wafting around halfway to where it's supposed to be, mostly because of the reaction I get from others, mostly doctors actually, when I tell them. Perhaps we need to bump up that surgery to mid-March, depending on how much time I'll need to recover from the Argus. In fact, now that I think about it, with the Argus officially taking place on the 11th March, I might very well still be cycling it on the 15th (Yes, I do know you only have seven hours to finish)...mmmm, might need some further thought, the op that is....already have a headache just thinking about it all.

Our ST for this morning was cancelled due to an illness in ST's family, so we resume next Thursday. And of course we have little Matt & Nic's birthday parties tomorrow. Yay! for seeing our RTS family again. And, on Monday morning, it's back to PT...Yikes!

Remember this pic :
Sam in May 2010

And here's how much he's grown :

He can barely fit into the swing now and, seeing as he's become too heavy for it to mechanically swing him, he now swings himself. Did I mention that at our last paed appointment, Dr B pointed out that, taking Sam's corrected age into consideration, he is just just touching the very bottom line on a NORMAL...yes, I said it, NORMAL weight graph! 

2 comments:

  1. How our Sam has grown....gosh its hard to believe...........

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  2. Tell Meg that Natalie walks 300 meters to school every day...some days, she walks 300 meters home, too! So exciting to be on the normal charts! Natalie is about 5-15% of normal.

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