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)

Monday, December 7, 2009

From Zero to 38.8 in 20 seconds!

Okay….well maybe not zero to 38.8 in twenty seconds, but definitely at least 36.8 to 38.8 in twenty seconds….okay maybe not in twenty seconds…more like half an hour. No, I am not talking about the speed at which I am picking up weight (then it would be from 50 to 100 in twenty seconds (kg’s that is), or pretty close thereto). We’re talking about Sam’s temperature on Thursday which, after two convulsions, took us to hospital where we spent that night and the better part of Friday. So, our little Christmas Elf (more about that later) decided that now was as good a time as any to catch a viral infection and throw in a little pneumonia just to make it more interesting. As always, Sam absolutely loved the change in his environment and with the added pleasures of oxygen, a drip and three really uncomfortable looking “probes” (which kinda looked like those clampy-thingies you attach to your car battery when needing to jumpstart it) made it a very challenging thirty-odd hours. But the awesome nurses at the unit made us as comfortable as possible and Sam has a great paed who always makes sure he covers all ground where Sam is concerned and takes his time when speaking to us and seems really concerned, not only about Sam’s welfare, but also with Chris and I, which really makes our lives so much easier.

So, our little man is feeling a lot better today and although we are still having to battle with getting his antibiotic down (loads of fun and games I tell you, which usually involves some serious gagging, screaming, vomiting) he had an excellent night last night and slept from 9pm until 5am this morning – yahooooo!!! But, no, this time I am not foolish enough to say “hopefully the start of a new routine” because I said that the last time and it was a one-in-a-month happening. Daytime sleeping is still not great, but hey – I can live with that as long as he sleeps at night.

Sam was meant to go in for his adenoids and grommets on Thursday, but we are going to postpone that to give him a chance to recover completely. We are also giving neuro-therapy a skip today as well.

But, let’s backtrack a little, Saturday before last we attended our annual Church Xmas dinner and Sam wore a stunning little Christmas hat which my sister bought for him with “Baby’s First Christmas” written on it – it was soooooooo cute and of course awarded him loads of attention when we walked in (pics to follow soon). The eating was a bit tricky (with Chris and I doing the usual eat-and-hold swap) but it was great to spend a wonderful evening of fellowship with our friends and also for me to be doing something remotely “social” again as my outings now seemingly only consist of medically-related appointments.

So things are slowly winding down now as all the year-end functions like prize-givings, concerts, ballet recitals, etc come to an end and the start of the five-week holidays begins. We are hoping to undertake a “road-trip” (my first ever at age 35 – blush blush) nothing major, just a two-day trip to my mom in Pearly Beach and then a couple of days with Chris’ folks in Stilbaai – Sam’s health permitting of course. We will first have to see how the next couple of weeks go – we have sort of prepared ourselves for having to cancel at the last minute if he does not seem strong enough, although the kids would pretty much be devastated I think, so we are holding thumbs…and praying of course…that it all works out okay. And of course we have checked…and double-checked…with all related parties that there is some sort of emergency room or doctor on call in both towns as they are both fairly small, quaint little towns a fair distance away from “bigger” towns.


… facing the truth. It is useful to remind myself that the word itself comes from “humus”…and, in the end, simply means that I allow myself to be earthed in the truth that lets God be God and myself His creature. If I hold on to this it helps prevent me from putting myself at the centre and, instead, allows me to put God and other people at the centre.

(Esther de Waal – Living with Contradiction)