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, August 2, 2014

Let's assume...

...that the Lil Smurfy Dude has spent approximately 1800 days on this Earth and that, on average, he threw up every fourth day. That's a good average because sure there have been stretches when he would go weeks without vomiting but there have also been stretches when he would vomit two...three...sometimes four or more times every day, so it's certainly a good average. That would put us at about 450 throws up over 5 years and allocating a generous 150 throw ups to alternate landing spots, it would be fair to declare that I have been drenched in a healthy dose of eau de puke at least 300 times over the last 5 years. Three.Hundred.Times!!! Now if you are sitting (on a Saturday night of all nights) considering calculations of this nature, you know you have been puked on one (or 299) too many times.

So 300 would have to be some kind of record right? Definitely worthy of a mention in the Guinness Book of World Records? A quick chat with my pal Google advises otherwise. There was a young gent considering an attempt at being
The best at throwing up but with his regurgitation being voluntary I hardly think it's a fair comparison. An interesting article on
How to vomit without making a mess did come up...I'm going to share it with Sam...will let you know how it works out.

Now who would have expected to learn such fascinating facts on such a boring mommy blog?

Another fascinating fact...the only thing I hate more than Sam vomiting is Sam vomiting ON ME! And last Sunday's incident has so far been the most spectacular. Sam's most recent sensory overload is caused by too many people standing up suddenly around him. It happened the previous Sunday at the end of the service when I took a little longer to perch his 18kg self on my hip. Luckily quickly running out stopped the gagging just in time. Last Sunday, however, Chris and one or two other gents stood up to collect the tithes instantly causing Sam to gag. It being the beginning of the service I thought I would give it an opportunity to pass before rushing out. Not the wisest decision. After the 3rd gag I knew we were in trouble and got up to leave but it was too late...a moment later partially digested Pediasure and Futurelife exploded into my face and hair. Luckily the ground was mostly spared as the excess of the explosion was beautifully captured in the loose folds of the polo neck I was wearing.

Tomorrow we shall go accessorised with at least one marg tub and with any luck will not spend the entire service in the car.

No comments:

Post a Comment