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)

Monday, April 12, 2010

THE FUTURE'S SO BRIGHT.......

..I JUST GOTTA WEAR SHADES!



And? So what if they're Build-a-Bear glasses?

You can make any shades look good if you're as cool as I am!

Oh my word, my poor child...the things we do for a laugh (you should see the "show" we have almost every night when getting him undressed for his bath, he has "legging-hair" and "vest-hair" and "shirt-hair".
CONFUSED?
Maybe this will help....

Seriously though, this isn't the first time we've put Meg's Build-a-Bear sunglasses on Sam and he doesn't half mind them - altho obviously we don't want to damage his eyes. Although, taking his light-sensitivity issues into consideration, maybe a pair of sunglasses wouldn't be such a bad idea.
So, anyhoo, Sam is slowly getting over his viral infection (slowly being the operative word). He sounds just like an old smoker in the morning as it takes a good hour or two for him to cough up all the gunk that is blocking his airways (I know - sorry for the graphics). But at least he was healthy enough for him and I to make it back to church on Sunday ("church" meaning that Chris and kids sit in the church/childrens' church respectively, and Sam and I pace out the foyer, the kitchen, the bathrooms (desperate times folks) and inevitably land up in an empty, darkened classroom with me perched on a teeny-weeny kiddie's chair (being a shorty has some advantages) where, two minutes before the end of the service, Sam eventually falls asleep. Yah! Maybe I should arrive forty-five minutes early so I can "con" him into believing that the service has actually started which then in turn makes him think he's fallen asleep at the end of the service, instead of the beginning. Mmmmm, worth some thought...not sure how the congregation will feel about not putting the lights on through the service and the worshipping and sermon being done in a whisper. Maybe I'm expecting too much...Hee Hee!
Seriously though, it was truly wonderful to be there on Sunday morning, Sam and I had missed a good couple of services and we have such awesome fellowship at our church - knowing such a caring, thoughtful and compassionate community has been an invaluable blessing for us.
With Sam being ill, we have also missed quite a few neuro-therapy sessions so tomorrow we are back into the swing of things just with a new therapist for this one time as Cathy, Sam's usual therapist, is not at the practice tomorrow....here's hoping all goes well (for Heidi's sake, not Sam's - his reaction to therapy takes some getting used to).
So, in keeping within the subject of "bright futures", something for the heart :-)
"One of the blessings of knowing God is that your life journey doesn't need to be like a map-challenged journey. A heart that seeks God's direction will be rewarded with guidance from Him because God DOES have a plan for each of us."
Carolyn Larsen
"The more we count the blessings we have, the less we crave the luxuries we haven't."
William A. Ward


3 comments:

  1. Love those glasses! We did the same thing with Build A Bear glasses last year with Nathan...too funny!

    Sorry your little guy has been sick...it's no fun for anyone!

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  2. What a great idea, thpse build A bear glasses! I never even thought of that. I love all your pictures/ Sam is so cute. I'm glad to hear he is feeling better

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  3. He is so sweet with his glasses on. I love seeing the pictures of Sam.. He reminds me of Noah when he was a baby.

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