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)

Thursday, February 14, 2013

Uncertain...

...of my emotions about tomorrow. 

Over the last few weeks I've been on a mission to find Sam a walker.  What an experience...an incredibly frustrating one.  Particularly when you realise that some companies are quite at peace with taking advantage of your near-desperate quest to benefit their own financial gain.  The last quote we had was an amount of R34,500.  I could only laugh....what do you even say to that?  Sure! What the heck, I'll take seven...a different colour for each day of the week. Eish!

Last Thursday Brampies took a picture of the walker we've been looking at to a company he remembered manufacturing medical equipment. This company in turn referred him to another company, quite close to home. Sam and I then went in on Friday morning (on the way back from his opthalmology appointment - which got a thumbs-up) and found the staff wonderfully helpful.  They assured us they would do their best to try and find, at the very least, something similar to the Trekker or even modify one of their current walkers (mostly for adults) to accommodate Sam.  I just received a call from Maryna from Medical Solutions to say they've managed to bring a walker down to Cape Town which they think would be suitable for Sam...and asked if we'll come in to "fit" it tomorrow.

Every time I picture Sam in a walker, I get butterflies in my stomach...which butterflies seem to have an invisible string attached to my tear ducts which then go into super-overflow. I know I've blogged about this before and for a good reason - I just can't seem to move past it.  Who knows why? I have such an emotional block about this silly walker. I know Sam NEEDS to be more mobile - for all sorts of reasons : development, independence, medical (those little knees)...even physically, so that those little calf muscles can work on becoming as solid and muscular as his awesome little thighs (or "hams" as Chris calls them).  So - common sense (what little I have) sends a message to my brain saying "WALKER = GOOD THING". And then...right outa nowhere...my heart butts in, slamdunks a "WALKER =  HEARTSORE"...knocking my common sense message right outa play.  

So it's going to be a really interesting shopping trip tomorrow ;)

Praise The Lord - There's always something good to share though, isn't there? Sam has had his Buzz Lightyear ride-on since he was about 18months old.  Since his sensory/anxiety issues went South almost 2 years ago, he seldom sits on it and when he does, he is doubled over in pure fear. The same goes for the little rocking horse you can see in the photo background.  On Tuesday morning he was kneeling on the floor playing with the horse and asked to sit on it.  For the first few minutes, I held him around his trunk as I usually do, while rocking Sam, the horse and myself.  Excruciating cramps in my calf muscles eventually meant I had to stand up for a short while to relieve the pain...and would you know, the little dude was quite calm.  I then sat on the floor next to him for a while and it was a good few minutes before he asked to come off.  I waited a while and then thought I'd try the Buzz Lightyear car.  "Joy!" screamed my heart... AND my aching back. Again Sam was quite calm and happy to sit unsupported. Progress is progress, no matter how small or "every day" it might seem to some. 


So adore this little boy - my heart wants to explode with love when I look at him xxx


And too for my little Mommy 2IC (posing with her Academic Merit Award and Badge she received for her 2012 final grades).  Chris and I ventured out for a (very) short while last night in I-honestly-don't-know how long.  Sam was apparently relatively okay until he spotted a video of me on his iPad, then became quite distressed and started crying. Meg picked him up and walked around the house with him singing Twinkle Twinkle Little Star until he was feeling better. She also helped Brampies change his nappy. 
She's such a good girl and Sam knows it too - he rocked himself to sleep earlier, clutching a photo of her to his chest. 

xox

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