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)

Saturday, September 11, 2021

Standing, while we wait...

 ...not anyone's favourite thing to do, I am sure (?) Waiting. The need to be actively working on overcoming current challenges, whatever those might be, is seldom content with the idea of just waiting. But, ah, what do you do when there's few other options? Usually, my 'waiting' would look more like obsessing, while trying to find that one solution/approach/logic I just must have overlooked, while suffocating in the anxiety/guilt that what I am doing/planning/remedying/coordinating (and and) is just not good enough. It's a control thing. A fear thing. A trust thing. So, when recovery from Sam's Dec 2020 surgery was thrown a bit of a spanner in the works by something as seemingly insignificant as an ingrown toenail, I decided to be more intentional about the waiting this time. So how's that going then? 😁

Well, it's a little all-over-the-place...much like my speech, feet and ridiculous number of forgotten-about cups of tea. And it's kinda hard work...like all the worthwhile things are, of course 😉. There are days when just 'standing' (ironically) in the moment, allowing all the disappointment and frustration to just soak through that mama-bear armour is actually pretty bearable. Weirdly welcome (I sometimes worry that too many things not going quite according to plan, have made me desensitized to feeling those things). Once those feelings have been processed and reflected upon, reading old journals or blog posts to remember other tricky moments which seemed just as overwhelming at the time but which were then overcome (sometimes in unexpected ways) has been wonderfully cathartic. Well, except for those awkward moments when I had to remind myself (with sufficient amounts of cringe) that the author of those all-too-often whiny posts in between, was in fact me 🙈 Hey, even scrolling back on some FB memories, when cringeworthy blogs and/or emotion-bombarded journals aren't available, can do the trick! Anything that triggers gentle reminders of all which has already been overcome. And how. And then? And then there's scripture, prayer and worship.  And hope. And trust. Waiting intentionally. 

Some days.

But some days surrendering the need to control the waiting (because who even should be wanting to control waiting? Well, me. I do!) just seems impossible. And instead of standing there's more of a somersaulting (clumsily so) in between Googling possible new strategies, doubting and regretting my reaction time to that silly little toenail, certain that if I hadn't left it for so long it might not have had such an impact on Sam's foot. And generally just obsessing about what other unexpected spanners might be hiding in the works as a result. The balance right now between waiting intentionally and somersaulting clumsily is not ideal but I am hoping that as the intentional waiting is mastered (or even semi-mastered) it will get better.


Anaesthetic #20something made for a fabulous catch-up nap from far too many leg-spasmy, sinusy-filled, sleep-deprived nights before. Well, for Sam at least!


The toenail of the hour. Who would have thought something so small could have such a huge impact? That that uniquely-designed foot, newly confident in the support it now had from its 'freshly-arthrodesized' right foot, would go from eagerly wanting to walk (and beautifully so) a few months ago to contorting, in an attempt to self-alleviate the painful toe, into a position more compromised than even before the surgery. But oh, those precious moments when Sam walked into his first few post-op physio sessions, barely holding onto Aunty Nicole, or occasionally (without even realising it) would stand on his own. And how beautifully straight the left foot sat just after surgery, the straightest it had been in twelve years! Those moments are filled with hope of more. Aaaaaand, with full recovery from the surgery having been estimated initially at around 10-12 months, we're still well within our timeframe...spanners and all 😂

The song below by Lincoln Brewster has made many a 'waiting intentionally' moment more achievable...even when it is sometimes the cause of a painful auditory assault on those unfortunate enough to be within earshot, as it is huffed-and-puffed out by my headphoned, treadmilling self! It's well worth a listen. 

While I wait


Main

Deep within my heart, I know You've won
I know You've overcome
And even in the dark, when I'm undone
I still believe it
I live by faith, and not by sight
Sometimes miracles take time
While I wait, I will worship
Lord, I'll worship Your name
While I wait, I will trust You
Lord, I'll trust You all the same
When I fall apart, You are my strength
Help me not forget
Seeing every scar, You make me whole
You're my healer
I live by faith, and not by sight
Sometimes miracles take time
I live by faith, and not by sight
Sometimes miracles take time
While I wait, I will worship
Lord, I'll worship Your name
While I wait, I will trust You
Lord, I'll trust You all the same
You're faithful every day
Your promises remain
You're faithful every day
Your promises remain
You're faithful every day
Your promises remain
You're faithful every day
Your promises remain
Though I don't understand it
I will worship with my pain
You are God, You are worthy
You are with me all the way
So while I wait, I will worship
Lord, I'll worship Your name
Though I don't have all the answers
Still I trust You all the same