SAM...MORE THAN A CONQUEROR: Take a bow my anti-special friends

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, February 10, 2014

Take a bow my anti-special friends

I have noted, often with amusement, the very many different reactions that one little word can ignite amongst those who too are navigating life with a differently-abled child/children.

*special*

An almost irrational anger expressed by some when a post is shared repeatedly on Facebook declaring that moms of kiwida's (my new term for kids with different abilities) are special. The awkwardness when someone gushes at what a special job you're doing raising your kiwida's but then the immediate pride when another kiwida mom tells you the same thing.

Before encountering life with kiwida's the word 'special' generally stood for all things good and wonderful...it was a special occasion, I'm wearing my special outfit, you have a special place in my heart...and so on. And then an unexpected diagnosis is thrown at you and suddenly special just ain't so special anymore.

One of the first things I felt when Sam was born (besides mind-numbing, stomach-churning fear) was loneliness, which I'm sure many have experienced too. Not due to lack of companionship but simply because we'd landed in Holland instead of Italy with everyone else. There are so many of us who just want to be one of the crowd, to belong, to be accepted...and 'special' almost certainly hinders that.

But then I encountered another fascinating phenomenon.

Over the passed few months I've encountered many new faces, all smiling through the often heartbreaking challenges of nurturing children with conditions like Aicardi-Goutieres Syndrome, Muscular Spinal Atrophy, Rett Syndrome, Metabolic Syndrome CDG1c, Leigh Syndrome and a few others I can't even pretend to spell, and have noticed that while parents of kiwida's generously compliment other parents of kiwida's on their courage, dogged advocacy and unfaultering love for their children, they themselves struggle to accept the same sentiments. Perhaps that is why 'special' creates such an uncomfortable feeling within us...we don't see ourselves as better or wonderful, we don't see our children's needs as better or wonderful. Simply because we're/they're not.

I have often responded to such well-meaning gestures by saying "you'd do the same" because I truly believe it. Parents of kiwida's discover courage they never knew existed within them, are filled with a passion that sometimes frightens even themselves and strive for conquests that many take for granted...because they have to. And while few would embrace such challenges in any other way, it does not take away from those who already have.

Daily I am inspired by parents of differently-abled children who have taken these uniquely-acquired life lessons and drawn from them the courage and motivation to provide much needed support groups, advocate equal privileges, raise awareness, heck even challenge a legislation or two all while attending to the specific needs of their families. Special? Maybe not. But certainly worthy of a well-deserved bow and applause.