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, July 21, 2011

A Merry Martyr

Don't you love how "casual" dads are about taking care of the kids? How they shrug off our, seemingly, feigned exhaustion at the end of each day because when THEY take care of the kids it's just no fuss at all? Well of course it ain't, because if I could spend the entire day just playing with Sam without having to constantly ensure it's constructive, stimulated play, without having to tidy the house, make the beds, wash bottles, make up a day's formula, drop and fetch the other kids from school, do the washing, etc etc....I would also end each day with a smile and a load of energy to boot!

Still, it was a huge relief to hear that Monday night had gone smoothly with none of the usual hysteria that has become synonymous with Chris putting Sam to bed. Such a relief in fact that I decided to take full advantage of Chris' eagerness to see to Sam for the next couple of days and, in anticipation, had pvr'd a good couple of movies I'd been wanting to watch over the past month or twelve, as well as stocking up on some mags to keep me occupied in between my intended movie marathon while seeing my recovery out in bed! Aaaahhh....the joy of disillusionment. I got home from the hospital just past 11am on Tuesday, made my way to the not look in the not look in the not pass Begin, go straight to jail...uhm, I mean, bed! Do not be THAT Mom, I told myself. The kind of mom that is desperate for some rest but when eventually presented with the opportunity to take it (even if it takes a surgery to get to that point), lets guilt and imagined (hopefully) expectations get the better of her. You know the kind, I think they also go by the name of merry martyr...LOL! By Tuesday evening I had washed Sam's bottles, made his formula, put on the dirty laundry and fed Sam. Do I regret it? Of course! I have now either contracted flu or something similar as I have a sore throat, headache, temp, earache and possibly the most entertaining - continuous sneezing which in turn means continuous nosebleeds. Oh Joy! I am sure at least one full day's rest would have made the world of difference but as I, defeated, removed my pvr'd movies from the playlist and placed my unread mags on the bookshelf I had to admit that I have only myself to blame. Sigh! (Although having Papa Smurf demand that I stay in bed might have done the trick - just a thought for when my tonsils come, C).

As for the procedure itself - all went well or as well as it can go with 10cm+ plugs stuck in your nose and sinus cavity and equally long splints sewn into your nostrils. Thankfully the last sinus plug came out on Thursday and the splints on Monday evening. Those first few breaths of air were AMAZING! I even told Chris it felt like I was breathing in too much oxygen at a time for my lungs to cope with...LOL! (Of course that was over a week ago before I got sick) My post-op nose is still a bit tender and raw but the overall experience was not unpleasant, largely thanks to having a truly compassionate and caring ENT!

1 comment:

  1. Ever the little entertainer is our Sam.......I love the ingenuity with which he reaches his target. Hopefully by this time you and Sam are both recovered.....must say the nose job looks pretty good obviously thats is not how it to all