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)

Thursday, November 4, 2010

Payton's First Birthday Party...Pics (At last)

Okay, so third attempt lucky - that's how many times I've tried to get this post out :)

As I mentioned last week, this past Saturday, 30th October, was Payton's first birthday party. And, thankfully, Sam managed to stay healthy enough for us to attend. We only managed just over an hour's stay, by which time Sam was becoming quite stressed & overwhelmed by the huge number of people there...yes, our Payton is one popular little girl! And it was also Shawn's (Payton's Daddy) birthday the following day so between the two of them it was a celebration of note. I reminded myself mentally the whole morning before the party "Remember to wish Shawn...Remember to wish Shawn." And did I? Of course not, how do you guys know was only when we were leaving, with Chris, Meg & Sam already in the car and me running down the street to say goodbye to Jacqui, Lloyd, Matt & Nic, that I remembered to shout Happy Birthday! Tsk Tsk!

Anyway, Payton's mommy (Tammy) and Granny (Liz) went to so much trouble with the Minnie Mouse themed decorations and everything came out beautifully. Sam of course LOVED the Minnie ears and you could see him looking around expectantly wondering when we were all going to start doing the Hot Dog Dance (still one of his fav's).

Payton with her Uncle Kevin (who it turns out actually belongs to the same church as we do..small world)

As I said...Sam LOVED the ears - this was taken at home, several hours after the party.

As for the pics, Sam did EVERYTHING he could to make sure he didn't make it easy for us to get a good pic..which meant jumping through each shot. And of course, we got to see Sam's RTS big brother Matt, who had several other moms mesmerised by his beautifully gorgeous eyes...and for the first time, Mattie's little brother Nic who is so exquisite he could easily pass for a porcelain doll. My heart warms instantly when thinking about Jacqui & Lloyd and their precious boys, as I know for sure that I would be in such a different place without their friendship and support and the blessing of having them in our lives is sometimes just so overwhelming. So, yes, it was WONDERFUL to catch up with Jacqui & Lloyd as well.

Matt with the broken arm Jacqui blogged about recently. It was so cute to see him signing, cast & all, and of course to hear him speaking. And when I gave him a goodbye kiss on his cheek, he rewarded me with a "Mwah"

That's unfortunately the only pics we got as our camera's battery was running low.

We had a really good time - thanks Tammy & Shawn. 

1 comment:

  1. Great to see you all together! It is SO wonderful to get together with other RTS families!