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, October 10, 2011

Bye Bye Charity Bond...Bye Bye Now

Okay, so let's start off with the bad news (not that there's any particularly good news to compensate, but maybe I'll think of something before the end of the post) - we have had to give up our hope of organising a charity bond for RTS to ride in the March 2012 Cape Argus Cycle Tour as we needed a minimum of ten riders to participate. Apart from our original aim, which was to raise awareness of RTS, I was hoping to use any monies which may have been  donated to put towards trying to organise our own little RTS South Africa conference some time next year. So, I am a little disappointed but also conscious of the fact that perhaps I should have tried to get the group together a little sooner. Chris and I will still ride, in whatever get-up we agree on by then (we are both leaning towards a Smurf theme) and will then look to perhaps a more successful attempt for the 2013 if that isn't enough notice, then I just don't know :)

On Saturday we got to share in the birthday celebrations for both Sam's RTS brother Matt's birthday and Matt's equally adorable baby brother, Nic. It was great catching up with our little RTS family and seeing in person how much all the little kiddies have grown and progressed. I hope we get to do it again soon. Here are a few pics from the party, but there's a couple more on my FB page :

Sam and his RTS sister, Peyton, with their beautiful big sisters

Loved this one of the three RTS sweeties...Sam looking at Matt look at Peyton

Peyton with her Dad

and Sam with his Dad

The two girls, Tayla and Meg, just chilling. These two have become such good friends in such a short period of time which I think is a real blessing waiting to happen for a time when either or both of them might need someone (other than a parent) to talk to, who can truly relate to their circumstances.
(and please do note those gorgeously huge and lovely strawberries which were offered in super generous portions at the party...I can still taste them now...Delish!)

Yesterday was a bit of a frustrating day...firstly went off to church with Sam, who was particularly fussy and disruptive, so I had to leave the main church even before the worshipping was finished. Off to the baby room which has now been equiped with a tv, so not a bad alternative except that both the little boy and other mom already there were both coughing and sniffing something tried to hang around outside with the sunday school kids who were painting various items to place in the church garden, like rocks and little boards (BTW awesome idea, whoever's it was) but Sam threw a tantrum when I wouldn't let him open and close the entrance door. So back inside to the foyer of the church and kitchen area which, of course, has loads more doors worthy of tantrum-throwing requests. Then, to top it off, Sam decided to make a poo which is always such an awesome experience because, due to his aggressive sensory defensiveness at the moment, I cannot get him into the "lying down" position without him squealing hysrerically. So, Plan B? Have you ever tried to change the dirty nappy of a not-yet-walking two year old, with them in a standing position? No? You gotta try's very entertaining.

Later yesterday afternoon went off to my cellphone service provider to renew my two-year contract, just like I did two years before now. But they would not allow me to renew because I cannot provide them with employment details!! why would I not be able to provide them with employment details...let me think....Oh Yes, it's because I am unempoyed...just like I have been for the last three years...which means, and I'll go slowly here for you, unnamed service provider (but whose name starts with a "c" and ends in a "c")so that you don't get lost...that I was unemployed the last time I renewed my contract as well. Which contract, I have to point out, has not once over the last eight or ten years ever been paid a single day late! Just had to get that out there.....Uuurrrggghhhh!

In closing, a short video of what a little smurf has to do when he has outgrown the weight limit on his mechanical swing...why, he swings himself of course :)

Oh, P.S., thought of some good news...this morning I washed my face with TRESemme Shampoo with a lower sulfate cleansing alternative and with added Aloe Vera and Avocado...which means my face will be protected against damage and breakage the whole day! How awesome is that?

*Oh Happy Days.....*

1 comment:

  1. Love the glad you had a great get-together!