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)

Friday, March 16, 2012

"Conquer.....

"...conquer verb defeat, beat, vanquish, triumph over, overcome, overwhelm, overpower, overthrow, subdue, subjugate, get the better of, control, master, deal with, cope with, rise above"

If you look at what the word "conquer"means it would be fair to state that, at the moment, there is not a whole lot of conquering going on in Smurfville...especially where illness is concerned.

Sam has, as I suspected, tonsillitis again. He is on yet another course of antibiotics, Orelox. The only upside of the Orelox is that it tastes hardly as horrid as the Augmentyn, so hopefully Sam will manage the entire course as opposed to the despairing percentage of Augmentyn he actually managed to ingest with the last tonsillitis. Although I say this with fingers crossed because just minutes earlier, he threw up his entire dose of Zithromax. Trying to remember what needs to be given and when has been a little challenging today as Sam  needs the two doses of Orelox, two doses of probiotics and one dose of Zithromax (in addition to all his other "normal" meds) and the first lot cannot be given within two hours of each other.

On the lighter side....when getting Sam ready for his doctor's appointment yesterday I removed his nappy, grabbed the urine sample container and "sternly"instructed him to "wee" so that I could take a sample with...of course not in the least bit expecting Sam to obey. Low-and-behold, Sam grabbed his urine-expelling body part and promptly wee'd....all over himself, his hands, the bed...but also into the container (which my aiming assistance of course). The incident had Chris and I in handclapping squeals of amusement, it was just so funny - as if Sam had genuinely understood and, more outrageous (taking his exceptionally strong will into consideration), obeyed!  This morning, when I put Sam down to change his nappy I noticed it was fairly dry...but as I removed it Sam again guided his hands to THAT part of his body and proceeded to wee and then, while I stood there deciding whether to laugh or moan, looked at me as if to say "And now? Where's the handclapping and laughter?" So I obliged, clapped my hands half-heartedly and smiled while grabbing every towel within my grasp to clean up yet another mess.

A couple of hours later, when again changing Sam, the exact same thing happened...although this time with a little less enthusiasm from my side, if the truth be told. Can you believe the little smurf? Sometimes he's just too clever for his own good...and mine :) Gosh, imagine what an awesome potty-training opportunity this would have been if Sam was walking!

2 comments:

  1. Can you get a potty for his room or wherever you change his diaper most? Then if he gives the signal, you could put him on it? I know he's not walking, but it seems to precious to ignore his signs that he knows what's going on...

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  2. You know, I bet he'd be ok with a small trainer potty... I started putting Stephen on one before he could walk (so I guess around 19 months or so?) because I was tired of him toileting in the bathtub (every. single. time.). He was actually trained fully around 3.5 years. I'm sorry poor Sam is sick again. That stinks.

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