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)

Saturday, December 25, 2010

This time last year........

Found this pic taken at BCC Christmas Dinner last year. Well, the physical changes are obvious like the extra four kg's we now carry around on our arm and the ten new teeth, which were nowhere to be seen then, but it's the changes not visible to the eye which are amazing like Sam's much-appreciated appetite for food...and sweet goodies too, his being able to sit, starting the motions of learning to crawl, ever-loudening voice and increasing desire for stimulation and interaction.  He's had a busy year, our little Smurf, filled with three chest infections, a couple of viral infections and one kidney infection, five hospital stays, two surgeries, approximately forty-odd therapy sessions and countless upon countless throw-ups, thousands of precious smiles, scores of uncontrollable, tummy-erupting laughing and more sneaky hair-pulling incidents than Meghan cares to remember.

On this our sixth day after surgery, Sam is a little more painful and uncomfortable than the past few days as we've decided to start weaning him off his pain meds so he had a not-too-pleasant night last night and was quite miserable this morning. Instead of having him go "cold turkey" and seeing how upset he was this morning, we've put him back on a half dose of the meds for another day or two and then try again without from Monday. The thing about the meds is that, although I obviously do not want him to have to endure any unnecessary pain, I am a little worried about the affects of having been on them for six days now and am also worried that, while pretty much painfree, he is hindering his healing by being as active and super-busy as always.

Today we are going to try Sam with some sitting up....but in between that, we'll still be.....
Spending time in the pram
and lying around on the "Christmas Bed" we made, watching tv or
playing keyboard with Meg and Dad
Lying under the grapevine while dad takes care of the OCD knocking for Sam
Having Brampa and Meg sing Mickey Mouse Clubhouse songs

Sam's "sore" area which has somehow managed to stay pretty much in tact considering the amount of rough and tumbling Sam has put it through - quite remarkable. 

And just a random pic of our precious little boy!

We are very relaxed and low-key today, my mom is coming down tomorrow to spend a couple of days with our family and, of course, to see Sam. So, to all our family, friends and loyal followers - we wish you a Blessed Merry Christmas and thank you for being a precious part of our journey so far. 

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