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)

Wednesday, September 21, 2011

A One-Smurf Band

I am becoming more and more concerned about our little man's absolute LOVE for tv, especially as he has taught himself how to turn the volume up using the buttons on the tv. Just this morning we had a war-of-the-fingers as I stood behind him with the remote and for every notch I turned the volume down, so he turned it up.The only, very slight, consolation is that he is only interested in watching singing/music or anything to do with numbers and counting. He has no interest in anything remotely cartooney anymore, not even Mickey Mouse Clubhouse which used to be his favourite.

One other not-too-bad aspect is that he has picked up a decent amount of knowledge from his music/number shows, coupled with our daily "lessons" on numbers, counting, colours, etc. (although he does seem to pay more attention to the tv lately and when I am sitting in front of him with whatever activity we are busy with at that moment, he will quite often look passed me and point to the tv - maybe I should make myself a cardboard frame to wear with some background music from a hidden iPod). Anyway, Sam quite often imitates what he sees on the tv especially on his Brainy Baby : Music dvd (as I've mentioned before, all the characters on the Brainy Baby dvd's are children which I think is actually what the attraction is for Sam). So, when the children are learning about musical instruments Sam is keen to participate....







Sam can find a rhythm in *anything* even something simple as running bathwater and, of course, anything remotely rhythmic calls for a serious amount of hand-flapping and head-shaking. He is awfully sweet, this little boy.

We finally got back into our OT routine yesterday and it felt good...well for me anyway. Whenever we are therapy-deprived I feel unsettled and anxious, like we are losing valuable time. I know, doesn't make sense, not even to me :) So it was great to see Nita and Pippa again yesterday, although with the latest surgery and sensory regression, even Pippa noted how defensive Sam is at the moment. It'll probably just take one or two more sessions before Sam's back to his old self again. Next week we've ST and a trip to the hand surgeon to add to our schedule as well and an utterly thrilling trip to the dentist for me, appointment no. 2 in yet another root canal process. I am keen to get Sam to a dentist soon too, although I don't see any obvious cavities or problems and he's quite okay with teeth brushing at the moment (surprisingly), has even taken to sticking his tongue out so I can brush that too. I guess with hair brushing, sensory brushing and teeth brushing he just figures ALL of him needs some type of brushing. I have noticed that his one little front tooth seems to be discolouring a little at the back so am thinking of having it checked out, but will wait until we've our orthopaedic appointment behind us before I subject Sam to any unnecessary trauma by adding another doc to our entourage.

We have had quite a long stretch as well since our last PT, but Sam and I still have our own PT session almost every day. He has gotten awfully cute with his PT exercises and when stretching his hams he does the leg exercises on his own and has even started lifting his own bum now...Heidi would *love* this, she tried at every session to get him to do this, but I am almost certain that if I had to try and coax him to do it during an actual PT session, Sam would just lie there like a ragdoll.

In the middle of typing this blog, I slipped out for my very first EVER Sam-less breakie with Aunty M, while Brampies stayed with Sam.....A-L-O-N-E! And, how do you know our Sam, he had to of course give Brampies a dirty nappy (Brampies' first EVER poo nappy...LOL). It was awesome to just sit back and indulge in some girly chatter while drinking a warm cappucino and munching on a muffin...thanks M xxx. And I got home to a perfectly calm little smurf and equally calm Brampies, with the only "oops" being that Sam has somehow managed to change our tv to black and white and I can't figure out how to fix it.

A short update on Sam's eating and sleeping (short because I am scared to jinx the good stuff) : Sam's appetite seems to have returned and/or his sudden aversion to pureed food has disappeared, whichever was the culprit. Sleeping is still a struggle with some really trying moments, like last night when it took two hours of trying to get him to sleep before eventually caving in and just going to lie with him in our bed. Oh, but at least he is eating again....thank the Lord!
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  1. CindySeptember 23, 2011 at 11:26 PM

    I'm so glad you got a few minutes out...you need more of that! I get so stressed when I don't have someone to watch the kids...everyone notices it and it does so much good for me to have a breath once in a while.

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