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)

Wednesday, October 7, 2015

When you're missing a part of you...

...but don't know which one.
It's not like you're consumed with sadness or given to overwhelming bouts of hopelessness, although feeling hopeless certainly does raise its ugly head every now and again. It's not that you no longer find joy in your life or fail to appreciate the wonderful blessings that come your way, in fact sometimes you now find joy in things which before might not even have held your attention for a second or you'd have taken for granted instead of cherishing as a blessing.
You still laugh, still love and perhaps live life more passionately and with more purpose than you did before..."before" being life prior to becoming the parent of a child with special needs. You're a stronger, more determined, more resilient, more vulnerable, more giving, more humble, more thankful, more intense YOU! So much MORE of who you were before. But yet, there is still some part of you that is missing, perhaps a very small part of you but which absence occasionally ignites a feeling of restlessness and anxiousness.
You're fine. Really. Not surrendering to the likes of a diagnosis or three...not completely resigned to sacrificing the dreams you had for your child/children, but real enough to know those dreams might require travelling a path you had not anticipated. But still, you find joy therein as a new path brings people, friends, family into your life you might never have had the pleasure of knowing. You're fine. Really.
And then, as you spend your day posting your support in raising awareness for your child's "third diagnosis"...the one which blindsided you so after having made peace with the first two...peace which had taken years to revel in and find hope hits you. You stare at your screen, you type the words, you acknowledge your tormentor...the missing part of you...the part from which you used to draw unfaltering confidence that it was going to be okay.

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