SAM...MORE THAN A CONQUEROR: Special Needs Parenting : a "NO FREE-WHEELING" Zone

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, January 22, 2020

Special Needs Parenting : a "NO FREE-WHEELING" Zone

As I have watched the beautiful first-day-of-school photos flooding my newsfeed of my South African FB friends, I have been reminded again of how quickly and significantly our goals and priorities can change. Eighteen months ago having Sam in school was quite high on my list of priorities, one year ago having Sam (relatively) happy and able to thrive emotionally and developmentally in whichever environment necessary became quite high on my list of priorities and saw us returning to homeschooling. This year, right now, having Sam just make it through one day of eating (and, well, pooping) as per his normal would be pretty awesome. Now wouldn't that make an entertaining 'first day' photo???

"The exhaustion of special needs parents" How many times a day I see articles like this whizzing by on my newsfeed. Whizzing because a) my FB is often being glanced at from the side as Sam scrolls to find pictures and videos of friends' kiddos, strangers' kiddos...any kids really and b) because I don't need an article to remind me or my rather small circle that I am exhausted...my (average) eight-hour reply time on messages, repeated "I'd love to, but....." RSVP's on invitations involving anything close to me-time or puffy, saggy, heavily make-upped eyes are evidence enough!! No bashing from my side intended for the special needs parents sharing those posts 💜 Sometimes you're too exhausted to put your emotions into words yourself, so being able to simply share someone else's beautifully penned emotions so similar to your own, is a blessing. I just occasionally feel even more exhausted after reading these articles because a) I'm now feeling saddened and a little helpless about the writer's (and all those who have shared the posts) struggles and b) there will undoubtedly be something in there that I have forgotten to be anxious about!! Oh and, no, my eight-hour reply time on messages is not referring to the night time spent asleep...because then I'd be replying within an hour or two. 😅

The thing is that over and above the physical exhaustion, the emotional exhaustion and the just being exhausted to your very core (And that feels like an actual thing, not just something you say for dramatic effect. It's like the place that keeps your body functioning when your brain keeps sending messages that your neck and back can't take anymore lifting and carrying of your 40kg flappy extension, the place from which your emotions continue to flow so that, even though you have been exposed to the most unimaginable fears and disappointments, you continue to FEEL and don't become desensitized...and the place from which your spirit's butt gets kicked everytime it threatens to start shedding the essence of who you are. Well, at least that's what my core feels like 🤷😅) Anyway, where were we...the thing that makes this exhaustion next level is that there is no defined end sight to keep focused on and because sometimes the end sight on its own is cause for anxiety. There is just no free-wheeling on this path. No stretch of road where you can just loosen your grip for a moment and take a second to breathe because in the blink of a heavily make-upped eye you can find yourself needing to navigate over an unexpected bump or swerve to avoid being slammed to the ground when you hit an even more unexpected pothole!

So you're constantly redefining goals and your ways of achieving them and this is not only your goals for next year or next month but sometimes for next week or even the next day! The only thing that keeps you from being completely overwhelmed is that, despite never enjoying that free-wheel zone, you've mastered the art of stealing a glimpse of the beautiful scenery with one eye while keeping the other on the lookout for that bump and being eager to celebrate each successfully avoided pothole as excitedly (and thankfully) as the first one.

While making the decision to change our longterm goal and revert back to homeschooling was a tough one, the change has brought with it many MANY glimpses of beautiful scenery...one of these being able to put Sam back into his intervention therapies fulltime which in turn has (with the support and guidance of a truly amazing team of ladies) uncovered some pretty awesome (and unexpected) aspects of Sam's development, worthy of a whole new post of its own! And our short term goal starts with some scopes and biopsies tomorrow to determine why the previously, always-starving kid has not been able to eat for the last six weeks. I won't lie, having 4kg's less of anxious flappiness to maneuver into the car has not been all bad, but watching Sam asking for his favourite foods and then just not being able to eat for any obvious reason has been pretty distressing, especially when you can hear his tummy grumbling. Thank goodness for Pediasure 🙏 His whole GI tract in general seems to be unsettled, although x-rays and scans have confirmed that there has been no anatomical changes 🤷 On the beautiful scenery side, Sam's six week fast should make this the easiest nil per mouth wait ever (?) from 8pm this evening until 2pm tomorrow 💪I Ishall be sure to flood my newsfeed with our own first-day-back-to-eating pics!

Oh...on another beautiful scenery side...I have discovered that black and white photos are great for camouflaging heavily sleep-deprived eyes!