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)

Tuesday, February 9, 2010

POWERNAP...SCHMOWERNAP!

As you can tell from my many….MANY….blog entries, our Sam is still not looking too favourably on this whole sleeping-during-the-day nonsense. In fact, it’s become such an overwhelming problem that I have recently diagnosed him (yes…of course I am qualified) with SDI, being Selective Daytime Insomnia (naturally). The reason why I say it’s “selective” is because, miraculously, when he falls asleep while we are holding him and don’t put him down in his cot, this ferociously debilitating condition completely disappears and he’ll nap for a good hour or even two. However, dare to wander down the passage, in the direction of his cot and the second you start bending over to lay him down, those precious little eyelids start flickering and before you know….nap time is over!!! If I didn’t know any better, I would even say it’s become like a game to him…last week, as usual, he fell asleep in my arms and if his Nestargel was the self-making kind where you just put all the ingredients in the kitchen next to the stove and return in thirty minutes to a jug of ready made formula or if his bottles were the self-cleaning kind with the same concept…..I would have been more than happy to let him sleep in my arms. But alas, neither is the case, so I quietly and deftly (well..kind of) got up and ever so slowly walked to the room, my heart racing every time I made the slightest noise..not even breathing, in case that woke him…but as I bent over the cot and started to lower him, this angelic but victorious smile appeared on his face and next thing those big blue eyes opened…and there we stood, me bent over the cot in mid-air not sure whether to go up or down…and little Sam..oh-so pleased with himself. If it wasn’t so exhausting, it might even be funny…okay, well it is still a little funny, sometimes.

So…the most sleeping we manage during the day is maybe ten, maximum twenty-minute powernaps….but (again)…alas…our Sam has brought a whole new meaning to the POWERNAP concept. Where I always thought a powernap mean sleeping for at least thirty to forty-five minutes…Sam says MINUTES…SCHMINUTES…to that and has adopted a whole new ONE MINUTE..powernap. Of course, every day by late afternoon he is a real ol’ grumpy smurf so any kind of task like, feeding, bathing, nappy changing, etc results in his usual hysterical, screaming fit. We were midway through one of these episodes last week (or rather Chris was as he was holding him at the time) when after vigorously fighting the sleep-monster, Sam eventually fell asleep mid-scream in Chris’ arms. Well, we didn’t even have time to breathe a sigh of relief…we only got as far as….S..I..G (which took about 45 seconds) and next thing this awesome smile appeared on Sam’s face and those big eyes opened and there, right before our very eyes, lay this seemingly well-rested, ready-for-action, happy little boy. The problem with this wonderful powernap is, if you happen to leave the room for a minute or two, you don’t know whether the nap has happened or not…it can literally go by in the blink of an eye.

Anyway, Sam obviously overheard me complaining about this and so to teach me a lesson about learning to appreciate what he DOES do instead of mulling over what he DOESN’T…after doing quite well with his night-time sleeping, the past few nights he has started waking up at 1am and, let me tell you, it’s been a lesson well-learnt. SWEET DREAMS EVERYONE!

6 comments:

  1. jesus has just started this too, he will not want to sleep during the day, but after reading your blog i have dicided not to complain i dont want to be waking up in the middle of the night! :) good luck! hope he lets you sleep...=)

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  2. Noah was a horrible napper when he was around Sam's age. He would sleep like 5 or 10 mins then wake up.. Now, he loves to sleep.. Hope you get some rest tonight.

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  3. Oh Nicky. I really feel for you. I so so so hope he grows out of it soon. It must be exhausting for you!. I am amazed you have your sense of humour - it is really one of your strengths, and I suspect more than once it has saved your sanity. All the best!

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  4. Hi, Nicky don't worry you are not alone, Jodie does EXACTLY the same thing. Her powernaps are between 5 and 10 minutes, now what can a mommy do in ten minutes? Make Nestargel of course :-)

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  5. I So remember those days..... It's a phase.. but one that's not much fun.... Your writing makes me laugh out loud. I love it!
    Here's to All of you getting some sleep soon.

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  6. Sawyer didn't nap very well for awhile and would only take the power naps as you described. It ended eventually and he take a s good nap during the day. I hope it's just a phase and you can get some rest, I know how tiring it is when you don't get any sleep. We are trying to work on his night time schedule, hopefully this is just a phase as well.

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