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)

Thursday, September 30, 2010

Catching Up

Wow, I can't believe it's been a whole week since I last updated Sam's blog...and since Sam's MRI results. The past seven day's have just flown by and we can't really say that we have anything to show for it, not in terms of "fun" or having done anything constructive in terms of arranging a follow-up appointment with a neurosurgeon for Sam. Well, not until today that is. I was referred to a prof of neurosurgery who, it seems to be, is quite outstanding and after first phoning the hospital from which he works and being told his first opening for us is on 27th October, I contacted him direct and he can now see us on 11th October which is such a HUGE relief. (We will not dwell on the fact that, if I had gotten my rearend into action a lot sooner, we would probably be seeing him this coming Monday already). So, four of the five-day school holidays is behind us already, with tomorrow being the last one. We at least managed an outing or two for the kids even though it was minor things like taking them out for supper last night and to Kidz Playzone this afternoon. Sam seems to be, slowly, improving his tolerance of shops and restaurants again and was quite easy to handle last night (which means that he didn't shriek and scream while either Chris or I were walking up and down the restaurant with him) but this afternoon's outing was a bit more taxing (which means he DID shriek and scream while either myself or his Aunty Debbie walked him up and down). It might be a wild guess, but there's a very small possibility that his low-tolerance might have been aggravated by the fact that by the time we went (round 2:30pm) he'd only had about twelve minutes sleep for the whole day. Unexpectedly, Sam fell asleep on the ten minute drive home (unexpected because Sam + car (usually) = shrieking and screaming, especially when the sun just happens to be shining it's merry self all over the place). I was sooooooo grateful that he was getting at least a tiny little nap which might see us through to bedtime without further S&S that I even sat in the car with him for about another ten or so minutes after we arrived home, before taking him into the house. Don't ya just LOVE kids that don't sleep during the day? Still, let me remind myself that, although he tosses and turns in his sleep as if he's wrestling some invisible smurf which inevitably wakes me up, he does still technically sleep a good ten/eleven hours at night. 

I might have mentioned it before on Sam's blog - I know I've sent an enquiry to the listserv already - regarding the fact that Sam does not seem able to use both his hands at the same time. Apart from the fact that it's quite bewildering to sit and watch him trying to, for instance, turn a toy over with that one little hand while the other hangs limply on his side, it also means that he cannot perform any tasks which would require two hands, like holding his bottle, clapping hands, etc. Well, for about the past week or so, at least once or twice a day, I sit face-to-face with Sam and sing songs which require hand clapping, like B-I-N-G-O and "If you're happy and you know it" and "Wheels-on-the-bus" (What? You didn't know that WOTB now has a hand-clapping verse...tsk tsk). And whenever there's any hand-clapping actions, I slowly take Sam's hands and clap them for him. As ol' Murphy would have it, Chris was sitting with him this evening doing the hand clapping thing (yes, for the first time) and what did our smurf do? Politely tried to clap his own hands once Chris had let go of them!!!! Oh.My.Word! I cannot tell you how exciting and so unbelievably cute it was...and there's more...he even repeated it a second time when Chris called me to come see! On Tuesday, while my dad was playing with Sam, singing some random song to him which might have started with "wheels" and ended with "round" (believe it or not we really do know one or two....or fifty....other kiddies songs, but he just really loves this one) and while singing "the Mommy's on the bus go ssshhhh ssshhhh" he put his finger on his lip to indicate "ssshhh". After repeating the song a good couple of times, as per the norm, when my dad sang this verse Sam took his own finger and put it on my dads' lips! Now, we don't know if it was just pure coincidence as Sam still has a mouth-touching/mining fetish...but we like to think of it as an intential, carefully considered action on Sam's behalf :-)

That's about it in the way of exciting news from our side. I purchased a book last Sunday called "A Different Kind of Perfect - Writings by Parents on Raising a Child with Special Needs" but have so far only made it through the first three pages of the Preface! I am hoping to have completed reading it by the time my special needs "child" is 30!

In closing, in a recent post I briefly mentioned my three cousins Gavin, Caron and Amy. Gav and I were chatting via e-mail this evening about the impact his older brother (Julian) and sister (Vanessa) had on his childhood and the way in which he dealt with his disability (moebuis syndrome). I find Gav's account of some of the memories quite hilarious, but this could possibly be because I was there either experiencing some of these wonderful moments firsthand or experiencing the gobsmacked reactions of my mom and the other family members when hearing about them. I invite you to take a look at the following link http://www.manyfacesofmoebiussyndrome.com/ to first get some background info on the syndrome which will help you understand the humour behind all the "smile" remarks and then on the lefthand side, under the heading "Gavin, updated..." you will find a touching rendering by Gavin on dealing with his disability, as well as his Mom's equally tender account of, especially, the first few years of Gavin's childhood. A quick excerpt from our e-mail....


I'm really lucky to have grown-up in ignorance about it as I see now that I haven't structured my life around it. The first time that I realised I couldn't smile was when Vanessa - in true Vanessa fashion! - was taking a photo of me out on the front lawn. "Hey dummy, stop pulling faces!" She said after I had struck a pose. "But I'm not pulling faces." I protested, "I'm smiling." Vanessa looked at me quizzically. "Don't be stupid, you can't smile!" That's sisterly love for you!  I went into the bathroom and glancing in the mirror gave what I thought to be the biggest, toothiest, ear to ear grin I could muster - and then realised Vanessa had been right! : )

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