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 17, 2011

Pasty Smurf

We are on Day 4 of Sam’s virus-croup-combo, but it feels more like Day 40. Sam is kind of on a vomit/fever/coughing roller coaster. He goes through stages when it appears as though he might be on the mend, but then next minute he’s losing his breath, hitting the 38 temps and vomiting again. It’s just a LITTLE frustrating!  The roller coaster did kind of end on a “high” tonight with Sam going down with much less drama than the past few evenings so let’s hope it’s a good sign. I have heard that there is quite a potent virus doing the rounds in Cape Town which has so badly affected children as old as fourteen, that they’ve had to be hospitalized. Doesn’t really set the tone for a great festive season having your child in hospital, so here’s hoping the virus makes itself scarce!

At Sam’s doc appointment on 1 December he worked himself up into such a state when the doc examined him that he landed up vomiting all over both him and I (Sam, that is, not the doc – although he too was starting to look a little green towards the end of the consult). So I decided to go prepared at Wednesday’s appointment with Sam’s paed, even though “going complete” meant having to lug along two separate bags : both Sam’s normal “baby” bag (which is already jam-packed) and then a “pull-in-case-of-emergency” bag consisting of a great big towel (which has proven excellent at vomit catching) and a complete change of clothes. And thank goodness I did. The actual examination was remarkably uneventful, with Sam almost falling asleep at one point. At the end of the consult, I had just finished telling Dr B about how badly Sam has regressed with regards to his sensory issues, when he decided to weigh Sam (completely unawares, of course, of how bad it really is at the moment)…which involved Sam sitting on the baby scale…which (with sitting anywhere being a serious No-No at the moment) then involved Sam freaking out and vomiting everywhere!

Dr B opted to send us home anyway, with strict instructions to get Sam keeping some fluids in by the end of the day or, failing which, a hospital stay and IV were inevitable. I pointed out that Sam’s original surgery date had been Dec 14th and that he was probably determined to stick to the original plan of being in hospital then (he doesn’t take well to change, our Sam) so Dr B suggested I make a detour through the paediatric ward on the way out just to satisfy Sam’s need to be in hospital! I was like, “Errr….let me think about that one….of course not!!”

A rather pasty, bleak little smurf :(

Well, we are eight sleeps away from Christmas Day and we have still not done a scrap of Christmas shopping…although having a vomiting smurf accompany us could prove invaluable in lengthy queues! If he doesn’t improve quite drastically over the next couple of days though, I’m afraid all of our pressies are going to be in the form of a stack of I.O.U.’s….imagine?

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