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...
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)

Friday, November 27, 2009

STANDING STILL........

….that’s what it feels like Sam and I have been doing for the last two weeks….standing, suspended in mid-air, surrounded by a glass bubble which is like one huge, circular tv upon which we watch the world carry on with all its normal daily happenings.

Samuel is not doing great at the moment – his daily sleeping is virtually non-existent and his nightime sleeping is filled with constant “snorking” and sudden gasps for air every time his tiny little airways become obstructed, which means continuously interrupted sleep. So, as Monday’s appointment with the ENT looms, it looks like we are with almost certainty heading for an operation. The thought of his tiny little 3.5 kg body being put under anaesthetic terrifies me, nevermind the RTS-related complications with anaesthetic, we have to believe that this will be the best for our little Sam and so will have to trust in God to keep him safe should we need to go this route.

On a positive note – Sam’s neuro therapy on Monday went great, without Meghan’s rattle-shaking assistance! By ‘great” I mean that the first fifteen minutes was scream-free, which is a major step for us. Sam’s head control does seem to have improved once again, after taking a bit of a dip, and he managed to push himself up completely on his two tiny little matchstick arms, when placed on his tummy (yip – which he still loathes….his arms that is, not his matchstick arms….LOL).

So, we wait in nervous anticipation for the outcome of both the ENT and paed’s appointments on Monday.

“Jesus came to give us abundant life, but not a trouble-free life. Part of the abundance He offers those who belong to Him is the power of his Spirit to overcome what others cannot. As believers, we have the power of the Holy Spirit to help us deal with circumstances differently than non-believers do.”
Joyce Meyer

“…In this world you will have trouble. But take heart! I have overcome the world.”
John 16:33

5 comments:

  1. Hang on friend! Time will make this journey easier!! Thinking of you.

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  2. I am thinking of you as well. I hope Monday's appointments give you some answers. Good luck..

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  3. Good luck in the appointment hope it all turns out the way you hope for and i will be prying for you all!

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  4. I'm in your bubble with you, in spirit. Nathan gasped for air at night as well. Once we had his tonsils out, it greatly improved. He no longer has outward signs of apnea.

    Peace be with you during this difficult time.

    Your little guy is just gorgeous!

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  5. thinking of you and christiaan all the time,but i love showing sam's pictures for my friends...he is just the most cutest baby

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