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, August 26, 2009

A sign?

On Friday, 1st May 2009, I picked up a book I had bought several weeks before by Dick Dobson. The very first story was about a thirteen year old boy, very healthy and athletic and excelling in tennis, who is diagnosed with muscular dystrophy. His dad is devastated, but the boy becomes the comforter and the one reassuring his dad with comments like "I don't need legs to serve God". The story goes on to explain how this particular boy's mission for God transcends any physical limitations he could face in a lifetime....the boy's name was Samuel. I went ice cold - were we been prepared for something?

One week later I was admitted, Samuel was still not growing and my doctor felt that keeping him in a womb that was not supplying enough oxygen and blood could be fatal. A week after that our Samuel was born.....and he was so beautiful and so small and so beautiful and so fragile...and oh, so very very beautiful. When we were told he has Rubinstein-Taybi Syndrome it was almost too difficult to believe because he was so perfect, except for his little unique thumbs and toes. But both Chris and I knew instantly that, no matter what the diagnosis, to us he is perfect and a gift from God. The Lord has entrusted him to us and I can only believe that our little Samuel has a precious purpose here on Earth and it is going to be an exciting and inspiring journey finding out bit by bit exactly what the Lord has planned for us. This tiny being is meant for something wonderful, something great and just as Hannah entrusted her Samuel to the Lord, so we place our Samuel tenderley in the Lord's hands.

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