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)

Tuesday, November 1, 2011

In the past fourteen days......

...we've had two speech therapies; one occupation therapy; one very tearful and tantrum-filled physiotherapy; Meghan's school Christmas concert (which had been performed for us as at home several times by then); attended an awesome Saturday morning breakfast at our church blessed with an equally awesome message about clay pots; attended a surprisingly undisturbed sermon the following morning with the help of some chocolate (Yes, at 9:30am); had two ENT consultations - one for myself and one for Sam where it was found that Sam once again has fluid in his ears; spent several days (yet again) filled with frustration as to why grommets/tubes were not inserted into Sam's ear when he happened to be in a hospital; in a theatre, under anaesthetic, accompanied by a letter from another specialist explaining the extensive problems Sam had had with his ears over the previous four months, surrounded by both the necessary equipment as well as the necessary specialist having another ENT procedure; had an appointment with Sam's urologist; tentatively scheduled the removal of the right testicle for the week of 12 - 15 December; realised that if Sam's ears don't clear up by then and grommets need to be inserted shortly, he will be having two anaesthetics barely a month apart; spent another couple of days moping about why it seems to be impossible to simply choose just ONE hospital and take it for granted that EACH AND EVERY specialist there will attend to your child with an equal balance of professionalism, expertise and (last but certainly not least) a comforting degree of compassion and consideration; then spent several hours appreciating how blessed we are that, despite not being able to co-ordinate all Sam's surgeries or even follow-up appointments, we have managed to find some of the most professional, expert, compassionate and considerate specialists available here; attempted to update this blog a minimum of five times; deleted a minimum of five draft posts due to the content thereof becoming irrelevant in the time it took to actually publish; spent several hours hunting down the latest craze in Meghan's clique being "teachers pets" (awesome littly fuzzy creatures with teeny weeny little booklets inside on all sorts of things like learning how to draw, magic tricks, jokes, etc); bought yet another new pram for Sam in the hope that this one will indeed meet Sam's sensory defensive requirements; had a GP visit for Meg who is fighting a particularly troublesome URTI; discovered the Talking Tom iPad app; spent several hours watching Sam grow addicted to the Talking Tom iPad app and all this without taking into account the time it took to give Sam 70 odd bottles, change close to 100 nappies, spend a minimum of fourteen hours putting Sam to sleep, 21 hours feeding him his porridge/food and all the other trivial tasks like stimulating play, sensory brushing, bottle-washing, formula making, supper making, etc. I don't feel so bad about not having updated his blog in fourteen days :-D

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