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)

Sunday, October 10, 2010

A very busy squirmey wormey.......!

Wow - so I wasn't even sure I was going to lay eyes...or hands...on this pc again before it came time to announce that Sam just turned 21! Our little boy has become extremely busy and just wants to be on the go all the time, which is great....if you're doing the "going" on your own. But when it's Mom (mostly) that's having to be the "vehicle" upon which you do your going then it becomes a little more taxing (pardon the pun). Over the past week and a bit Sam has progressively become more and more that "little boy" that we so often see lurking behind that mischievous smile of his....and oh boy, do I see heaps of mischief ahead of us. Firstly, it seems even the mere mention of a possible surgery seems to have jolted Sam into action as all of a sudden his sitting and "crawling" has improved remarkably. He can now sit unsupported for a good ten minutes. Although he cannot fully bring himself up into the sitting position, if he's lying on a bit of a slant he can actually pull himself up into a sitting position - those little tummy muscles are working overtime and although when he begins leaning a little to one side he still neglects to put an arm out to support himself, he just strains those little abs and somehow manages to bring himself upright again...it's quite adorable watching him and I don't doubt he's going to have a sixpack that Dad would die for! He can also, when sitting between our legs, move from a sitting position into the crawling position, supporting his tummy on our thighs and can move back again from there into the sitting position. He still ADORES jumping and is developing quite the little calf muscles to prove it and loves "walking", which is basically Sam positioned in front of me holding onto my hands and "walking". I say "walking" because unfortunately that little turned-in left foot of his quite severely hinders his stepping at the moment, making it more of a step...crab-like drag....step motion. We are scheduled to meet with his orthopaed in January again and although I considered moving it forward in case his little Sam "swagger" becomes quite habit forming, we are just concentrating on the tethered spinal cord situation for now and will first see that through before we move onto the next issue. Still, swagger or no swagger, Sam is extremely sturdy on his little legs and sometimes even gets irritated with me holding his hands and tries to shake them away. Of course, him being the incredibly tall little 16 month old that he is, his standing position puts his hands at almost the exact same level as Belle aka Kitty which, combined with Sam's still-worrying love for pulling hair, makes for many entertaining moments....for Sam that is, not so much "Kitty".

There's more....there's more....he's making so many new sounds and you can just see that desire for communication simply bursting out of him and, as I think I've mentioned before, he even has different "voices" reserved for different activities like animal conversations, keyboard playing, hair pulling, "throwing" toys, etc. And one final new "development"...Sam has gone from absolutely LOATHING being on his stomach to loving it so much that trying to change him or dress him has become so tricky that I sometimes just leave him "as is" until he's gotten his "crawling" over and done with and then try again later (unless it's a nappy change that is...unfortunately we then have to persevere). But this flip (literally) in behaviour is so so welcoming that it's hard to complain.


Sam has had seven teeth come through since mid-June and his mouth really seems to be driving him pretty crazy as a result. He will chew on anything...ANYTHING! I was standing by the window with him earlier today and next thing he had grabbed the curtains and was chewing on that! 

On to the last resort chewable items, which is his clothes. We have to try keep a bib on him lately, not to help manage the dribbling, but to prevent him from chewing on his actual sweater and sleeves.

 Now, here we have Sam's version of crawling and let me tell you, it's really quite an exhausting exercise and really rather odd as he insists on his arms and hands being under his stomach while he's doing his squirmey wormey exercise. So it first takes some time to get those hands to the side....
 Then he has to lift his bum to get them securely underneath.....

And then he pushes with his legs, squishing that little face solidly down while the little bum stays in the air...presumably for navigational purposes? Who knows!
And so the whole process begins again...and believe it or not, he manages to cover a considerable amount of "ground" this way. For obvious reasons, we've had to restrict his crawling to mainly the bed in order to avoid carpet burns on his face!!
As weird as what the whole process is for us....Sam absolutely loves that he is now a little more mobile and is always quite pleased with himself after doing a few laps of the bed!

A random adoring smile just for Dad!

So, it's been a physically exhausting and busy week, but for all the right reasons, not the usual cause being back-to-back specialist appointments or hospital stays, but filled with the most encouraging, heart-warming, beautiful moments of watching our Sam telling us in now uncertain terms that although his conquests sometimes seem few and far between...it is sometimes many and all at once!

In addition to all the above excitement, Luke celebrated his 17th birthday on Thursday. Yikes! Maybe my physial exhaustion is not completely detached from the psychological disbelief that I now have a seventeen year old son! Moving swiftly along......

We are seeing a professor of paediatric neurosurgery tomorrow morning at 11am so, hopefully, by this time tomorrow we will also know where we stand with Sam's tethered spinal cord story.

2 comments:

  1. Hi Nicky,
    Now that is so amazing all this progress in such a short time. Great news especially the mobility that seems to have gone in leaps and bounds.....watch out there is no stopping him now. Always thought you would be in for a tough time once he became mobile. I love the photos how on earth did you manage to get them in exact sequence with squirmy wormey? Such a happy little chap yet that naughty smile is not there for nothing.....Well done to you the hard work is now all the more worth it.....lots of love Anthea

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  2. Go Sam Go! I'm so glad you've made good progress recently to encourage your mum to keep pushing you. And your communication is great! Keep it up!

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