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)

Monday, August 31, 2015

Potential Capped

Statistics vary considerably on the number of people in South Africa living with disabilities, but the estimation is somewhere right up there round the 3 million mark.  Of those 3 000 000 people, anywhere between 500 000 - 900 000 will go unschooled.
 
500 000 - 900 000
 
As in somewhere between half-a-million to almost ONE!MILLION! children will be robbed of their right to an education simply because the inclusion infrastructure in this country is as flawed as our ability to collect efficient stats. Urrrrgghhh!
 
"Ineducable"! (One of the words used to describe Samuel's prognosis when he was born) 
"Considered incapable of being educated..."  
 
Many of you have heard the following a million times over so feel free to skip to the next paragraph - this word ineducable...capable of stripping one of every ounce of hope you might manage to salvage for the future. A word that instantly became my personal demon, to the point that I became near-obsessed with doing everything in my power to expel it from our vocabulary. Numbers up to 20, all letters, colours, shapes mastered by the age of 3...applying counting skills, a signing vocab of near 200 words...capable of reading just as many words...all by the age of 5 and despite having three separate conditions affecting his brain. 
 
Yet, at just six years of age my son has been rendered ineducable...not because he does not possess the potential to learn, but because there are no facilities available to guide him towards that potential.  Schools for physically/neurally disabled kids? Yes! Schools for children with Autism? Yes! Special Needs Schools for children who are equally challenged by both? As scarce as hen's teeth! Mainstream schools which would consider accepting a child whose brain functions brilliantly but has not yet found the right "sync" with the rest of his body? You've got to be kidding!!!
 
It is beyond sad.  This kid, reading through his dictionary.... 
 
 
 
 
...this kid deserves to have his potential recognised and catered for, especially by a country shrieking daily about the horrendous crimes of discrimination.
 
 
Vent over xxx


Monday, August 3, 2015

The Darkness Cometh!

And by "darkness" I am referring to that depressing, life-halting, germ-yielding, just-plain-dismal time of the year otherwise known as Winter! Bleh. Yes, I am a classic Seasonal Affective Disorder sufferer who finds it incredibly difficult not to succumb to irrational bouts of envy when seeing her overseas friends posting pictures of all things Summer...just can't help it, sorry guys! Thankfully, a little S.A.D. (a rather appropriate acronym, or what?) has been the least of our worries the last Winter or two...but YIKES! did Sam ever make up for it this time round.
 
A couple of days after my last post, the little dude landed up in hospital with Rotovirus. It absolutely floored Sam, who spent almost a solid week napping his time away...and we're not talking Sam's usual mickey mouse naps of like fifteen/twenty minutes. We're talking like 3-4 hour naps! Yes, really! Then you know for sure that the lil dude's struggling. Sam was discharged the Sunday and by the Wednesday morning we had to make another trip to the ward after Sam woke up sporting a 40.3c temp. I was pretty sure it was the remnants of that darn Rotovirus, hanging on to wreak its last bit of  havoc, but Prof Prof seemed to think it was something new brewing. Nah, I thought. No coughing or congestion...definitely Rotovirus. By 4pm that afternoon Sam was coughing and snotty. #sigh
 
I tried to manage with some OTC meds for a couple of days, but by the Saturday I had to admit defeat and accept a script for Celestamine. My lack of warrior spirit might well have been influenced by my own coughing and snotty constitution, forming an all-round, family partaking (with the exception of Papa Bear) in some pretty nasty flu. 
 
It is not unusual for Sam to struggle with sleep and a general sense of being unsettled after a hospital stay - it is the very reason why I try to cope at home with his illnesses before resorting to admission (obviously without leaning towards negligence of course). With the exception of the first night in hospital, Sam slept through every night...waking only to protest aggressively whenever a nurse came in to check his stats. But from the first night at home, Sam battled with sleep...the first few nights found him bodybashing himself around between midnight and 2am-ish, but soon we were back to our old demon...bodybashing anything from 11pm till 4/5am each morning. I don't know how I coped with this before, but this time round neither Sam or I managed the severe sleep deprivation well at all. Last week Tuesday we headed off back to Prof Prof, after almost a week's surviving on just 1-2 hours sleep each night. After advising that Sam's throat was a little irritated, probably caused by a nasal drip, and that his gums were looking a little fragile thanks to him cutting his molars...we headed home with a new script. Yay! Sam's teeth generally take MONTHS to eventually make their way through.  Months with only a couple of hours sleep a night? "Sure, we can do that!" she says laughing hysterically!

Although the meds certainly did help some, I kept thinking back to those night's of blissful sleep in the hospital despite Sam actually being really ill. The major difference between hospital and home was that at home Sam was still sleeping in our bed, smack-bang in the middle to prevent him from hurting himself when bashing, while at the hospital he slept in his own bed. So Thursday we decided to go out on a limb and move house without the actual benefit of a brand new house....in other words...rearrange our bedroom, which in turn meant rearranging almost the entire house! Sam's bed was relieved of the storage facility it had merely become and pushed snug up against our own bed (baby steps). And? Well, with some very light bashing every night around 1am every night, Sam has been sleeping comfortably there ever since.  As much as what he wants to sleep in our bed, being in his own bed is obviously far more comfortable and, it seems, partly responsible for his disrupted sleep.  And of course the quality of sleep I am getting being able to actually relax my muscles without the fear of falling off the 10cm little scrap of bed I was left to rest on each night, is quite delightful too.  Sam's still battling with his teething, his super-flushed cheek and relentless teeth-grinding tells me so...but he is at least getting a decent amount of sleep at night now. And who knows? Maybe the next six years will see us actually moving his bed a couple of cm's apart from ours....the sky's the limit folks.
 
 And some pics to catch up the last month...the parts which weren't spent sick in bed :
 
 
 
Sam's bestie, Smokey rabbit, and Sam having a moment
 
 
On the 18th of July, The Daniel and Friends Fund families were treated by Reach for a Dream to an awesome morning at the Aquarium. Sam was so well behaved and lasted a full five hours with only a very minor meltdown in the beginning when I stepped away for a few minutes.  We were so very proud of him :)
 

 
 
 
 
Family snap xxx 
 
And, thanks to our little germ-fest, with the exception of multiple doc visits and shopping sprees to our local pharmacy, that's really the only exciting stuff Sam's been up to!!! Roll on Summer xxx