Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
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 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.


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 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.

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