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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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)

Wednesday, January 12, 2011

You're a fighter

Love Notes to a "special" parent......
Sometimes you have an actual person to battle against -- a specialist, a teacher, an administrator, an insensitive family member, a playground bully, your own stubborn child. Sometimes your opponent is less concrete -- a disease, a disability, a milestone that keeps moving away or a skill your child just can't seem to master. And sometimes you end up fighting against yourself -- subduing your fears, conquering your doubts, attacking your insecurities. Regardless of the foe, you're in it to win it. Surrender is not an option. You may negotiate and agree to a treaty or observe a ceasefire, or you may scorch the earth and take no prisoners, but you'll fight the good fight as long as there is any fight left in you -- and then you'll fight some more.

If you have reached the end of all the light that you know, and you are about to step into the darkness unknown, Faith can do one of two things...Either you will step onto solid ground or you will be taught to fly. (Unknown)

3 comments:

  1. So true its the battles that make us stronger human beings....Praying for Luke today hope it goes well Lots of love

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  2. I needed to read that today. I have not been able to comment on your blog lately . But I have been reading. praying for you and your family always.

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