SAM...MORE THAN A CONQUEROR: A seriously bad case of Festivalisophobia

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, January 4, 2015

A seriously bad case of Festivalisophobia

I remember Sam being "ill" last Christmas but could only recall that we were doing large volumes of v-wording, without remembering the original cause. A quick search on the blog and there it was...a genuine case of same procedure as last year! No real illness, no nasty little bug flooring an otherwise eager-to-celebrate little dude...just a sensory/anxiety system in absolute turmoil at all the change to the usual, thrived-upon routine and a generous dose of Festivalisophobia (fear of Christmas). Not that we've exactly been partying it up, just attempted a low-key trip to a local botanical garden and a quick drive to the seaside, both which resulted in an epic fail. It's like the kid somehow senses that everything's a little busier, little noisier, a little crazier out there and his defensiveness goes into overdrive just thinking about it...and Sam+stress/anxiety=vomit...and lots of it! (Eeeeeewww, yes I know, totally gross). On Thursday I had a brief moment of excitement when a quick temp check showed a lowgrade fever but unfortunately it must have been purely a momentary strain on his system as another check minutes later showed a normal (well for Sam anyhow) temp again. As wharped as it may seem to be wishing your child ill, a simple once-off virus seemed easier to brave than a possibly recurring phobia of all things Christmas. Thankfully common sense set in (not a regular happening, I'll have you know) and after giving myself a mental slap through the face, I reprimanded myself for even entertaining the notion, be it just for a second, that having a poorly, feverish Sam would be better than simple, non-illness related vomit.

In all fairness, sleep deprivation can mar one's judgement and with the exception of one good night's rest last Thursday evening, Sam and I are both running on an average of about 2-3 hrs sleep a night. I kid you not! And that too was happening this time last year, Sam bodybashing himself so severely for hours on end that I eventually have to place pillows around him to prevent him from bruising himself with the incredibly forceful way with which he throws his little body around. The good thing about reminding myself that we did all this last year, is the reassurance that we will move passed all of this once everything returns to normal again. Normal? Bwaaahaha! I crack myself up sometimes!

We did have one truly awesome highlight to our festive season and it was THAT great that it by far overshadows all the not-so-great stuff. I have been corresponding for some time with an RTS mom who lives in another province with her family and their precious little 'Aines who is 4yrs old and also effected by Rubinstein-Taybi Syndrome. Little 'Aines and her family were holidaying in Cape Town and we had the privilege of spending the better part of one day with them. It was wonderful seeing all the similarities between Sam and 'Aines, although 'Aines is a perfectly-behaved little angel while Sam was in full fight-or-flight, arm-swinging-helicopter-style mode (Ai).

As at this very moment, we are about 36 hours vomit-free so lets just hope that we've seen the last of it for a while now. Being able to get out the house a little more often sure would be great too...so here's hoping xxx