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)

Friday, June 12, 2015

Shared paths - Here's to you, my friends!

About a week ago, as notifications from our Daniel and Friends Fund Whatsapp Support Group assaulted our phones at what seemed like a message per second with topics ranging from cupcakes, to unicorns, to wine, to flooded houses, to unicorns, to family, to wine, to unicorns, to beautifully hand-made bags, to our children, to unicorns...and so on and so on, I sat back for a moment as a thought hit me...I have had more friends, more social interaction, more laughs, more inspiration, more feeling accepted in the last year than what I've probably had at any other time in my life.
But that's not how it's supposed to be when you have a child with special needs, is it? You're supposed to be broken, sad, withdrawn...ALONE!!! Well, for a long time that person would invade my life every now and again...would break down the wall I'd built with humour and a positive attitude to keep those very negative emotions away...and I'd have to begin all over again. So, what changed? Well, out of all those wall-breaking elements, just one thing thing which makes the world of difference to how we cope with the struggles of parenting children with special needs.
Please don't misunderstand, it's not like every family member and friend ditched us...changed their telephone numbers, moved house and the like, abandoning us and running for the hills. While there have been friends that have not made it along this path of ours, I in particular have been blessed enough to have the endless support of my family and a couple of friends who have not only stuck by my side, but who go the extra mile to show support and love.
That's not the "alone" I'm referring to. I'm talking about people who understand having to trade that new car for chronic meds, satellite tv for therapies, birthday parties for hospital visits, milestones for plain old get the idea. Suddenly the path you've shared with old friends splits. If the friendship is meant to survive, between the two of you'll build a make-shift path in the middle which lands up being more solid and reliable than either of the other two. But sometimes it's necessary to each go your own path so for a while we feel alone. And then, when we least expect it, we walk Smack. Bang. into others walking that very same path. There's healing in a journey shared. That's just the way it is.
I Googled "Why is support important in special needs parenting?" Loads of posts popped up with the practical reasons - sharing experiences with medical practitioners, providing information on tried-and-tested solutions, etc. I can't even remember most of the other things. But having friends who just get mention of it! Yes, all the other points have merit. But you may be super proactive in approaching intervention therapies, a Phd waiting to happen from sponging up as much information as possible, have a ten year plan in place for your kiddo's potential development, have great respite care, enough buckerooni's in the bank to pay for the medical care of ten children with special needs and yet, still, I dare say you are not being honest with yourself if you believe you can come out of this on the other side a whole person, without having had at least one person who has shared, firsthand, your hopes...your fears...your determination...your courage...your challenges.
Joining a support group purely for emotional reasons is not a "maybe" once you've attended to the really important stuff. It's a "have to" if you are wanting to tackle the really important stuff with a healthy mind and heart. Truth. xxx

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