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, January 4, 2011

What's the only thing worse than a child that cries himself to sleep every night.......

A child that cries himself to sleep TWICE every night!!

Well, here we are....sleep deprived, baggey-eyed and pretty much clueless as to what could possibly be going on with our little Smurf. Okay, perhaps not clueless, but sleep-deprived and baggey-eyed nevertheless. On Sunday night, contrary to my post, Sam went down for the night with a lot more ease than the previous night...well the first time at least. Sure he moaned and fought me off like the Conqueror that he is (After all, how can we praise him for being a fighter but then expect him to be submissive when it's easier for us?) so after forty-five minutes or so of carpet-pounding and several elbow's to the ribs, he fell asleep. The second time round was also not too traumatic (for us, that is) and he fell asleep quite quickly again. But for about a four hour period, every few minutes, his little body jerked as it does with the startle reflex. And when his body eventually lay still, his little hand kept jerking/making-grasp-like-movements. Now, I don't know if a sensory/reflex problem can apply when you're asleep?

Last night he screamed himself silly, BOTH times he was put to sleep (like clockwork, he wakes up crying at about 9:45pm every night). He thankfully had none of those little jerky-type movements, but moaned quite often. Also, he has this kicking-thing....now I know that rocking, swaying, tapping, etc are all forms of self-stimming...has anyone ever heard of kicking as a means of self-stimming? Well, it kinda seems like that's what he's doing....he'll do it for four or five minutes, even in his sleep....just kicks his legs out in front of him (but they must be making contact with something...he'll move until his kicking the side of the bed, your face, your tummy...he's not really THAT fussy as to what he's kicking). As a family, we said we want to eat more healthy this year, exercise more, etc (Gee...this all sounds sort of familiar) but I think Sam is taking the whole exercise thing just a LITTLE too far....we're not that dedicated that it calls for middle of the night aerobics Sam...or would that be Smurfercising!

So, now we're trying to decide which is the lesser of these two "evils"....falling asleep more calmly but having a good few hours of jerky-episodes through the night...or screaming himself to sleep but with regular intervals of smurfercise during the night. Well, we've received referrals to two OT's, hopefully one of them will be able to help us ASAP so that we'll have a few more "bedtime options" to choose from :-)


4 comments:

  1. Oh Nicky, I am praying that this too shall pass. The OT thing is the best option but the sleeping pattern is something else, maybe its got to do with the trauma of surgery or maybe he just needs something to settle him down again have you spoken to the Paed. Could it be pain related, its never a good idea for these little scraps to cry themselves to sleep. I so feel for you and of course poor Sam who cant tell anyone whats up. God bless

    ReplyDelete
  2. Hi Aunty Anthea. I've just made an appointment with Dr Bristow for 3pm this afternoon, so here's hoping there's nothing else causing Sam's unhappiness other than the trauma of the op. Weird thing to hope for...but there it is!
    Hugs

    ReplyDelete
  3. Nicky, let us know what the dr thinks? Good luck for tonight! Will be thinking about you and little Smurf.

    ReplyDelete