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, May 12, 2011

Caught in the act....

The second I put Sam on the floor in our bedroom, he makes a beeline for the en-suite to immediately get to work on throwing his stacking cups into the shower. What, you might ask, could he possibly find so entertaining about that? I have not the foggiest clue! In the beginning he would spend a good few minutes first banging the cups on all the tiles, which did make at least a little sense what with his OCD banging of things...but now he just goes straight to the "main attraction". Guess I should be glad that he can't yet reach the toilet as this can only be an indication of what's still to come :)

The past few days have had a bitter-sweet tone to them as we near Sam's 2nd Birthday (on Sunday). While it's awesome to think back on all the challenges and trials we've faced and conquered over the last twenty-four months, looking ahead at the future challenges and trials lining up over the next seventy-something years is a little daunting! Who'm I kidding? It's just plain terrifying...the thought of what's to come, that is, and not the thought of me being one-hundred-and-seven years old. Actually, that IS pretty terrifying too!! Anyway, moving swiftly along....

Having this ongoing, internal struggle about where is the "right place" for your head to be is just simply exhausting. Don't expect too little from Sam for fear of under-stimulating him. Don't expect too much from Sam for fear of frustrating and disappointing both him and us when overly-optimistic goals are not achieved. How do you figure out the correct balance? Are WE (Chris and I) capable of figuring out the correct balance? Is there a correct balance? Every now and again I believe my head to be in that "right place" and then something...or more likely, somethingS, go a little differently to what I had envisioned and I just lose my place and occasionally, like now, it takes some time to find my way back there. I think the first step I took in that direction was (as mentioned in my previous post) completely aborting this whole idealistic notion that we as a family and as individuals are heading towards this wonderful, highly anticipated, victorious utopia over the battle that is RTS where we will one day eventually function as a "normal" family again. This is not at all to say that I have not yet accepted my son as being disabled/differently-abled, but merely that I have not yet found peace in mastering the "perfect" way to mother, nurture and prosper my disabled/differently-abled son. The good news is that, usually (fingers crossed), these low days seem to fix themselves as soon as whatever trying issue we are dealing with at that time, also seems to lessen or disappear. For example, like the fact that hearing constantly about how our RTS sweeties are prone to temporarily losing one or more abilities/skills once a new one is mastered, does still not quite prepare you for when your little smurf finally learns to crawl but then somehow loses the ability to sit unsupported! I mean, really? It's not like he has THAT many skills to play with in the first place...couldn't he have temporarily lost the ability to gag? Hey, I'd genuinely settle for even a TEMPORARY recession on that one. Or how about the swift hand co-ordination he masters when adeptly pinching a handful of hair? I could most certainly have come up with way more creative abilities to offer up for a short time. But, alas, it is apparently not up to me so for now we have had to resort back to propping him up with cushions when seated on the floor after him having bumped his head quite severely on three different occasions over the past few days, when he just seems to forget that he can actually sit and flops backwards. It's really quite heartbreaking and makes you begin to fear even bigger milestones, like walking, in case they come with just as large regressions.

But enough depressing regressing for now :)  

In the midst of all this doom and gloom, conqueror smurf is still making some headway at least in other areas, aside from throwing his toys into the shower! A while ago I pursued sign language quite aggressively with Sam but despite all my efforts, he seemed to show little aptitude for it. Recently, however, he gave me a clear indication that he might now be ready for us to try again when, after watching the Tweenies perform "Old Macdonald" for about the fiftieth time in a row, he imitated quite distinctly their actions (which are almost identical to the actual signs) for duck and cow. He also automatically assumes the two-fingered piano pose the second you say the word "chopstix" to him (thanks Barney) and will politely commence a very charming rendition of the song, air-piano style! The only snag here is that Sam cannot lift his arms even up to shoulder height so you have to watch impeccably to determine whether he is doing the action for chopstix or for cow, as there is barely a two centimetre distance differentiating between the two. 

As far as therapies go, we are still concentrating on OT at the moment as it really does seem to be having a huge impact on Sam's SID. There has been a slight setback after Sam's three falls, where he has become a little fearful again of being placed next to certain objects, etc. but hopefully we'll move through this quickly. It is still quite frustrating having to juggle, due to financial restraints, between which of Sam's therapies he requires the most at that given time and it is something that I believe greatly effects how you feel about your competency as a parent so it was with a little bashfulness and quite a sad heart this morning that I had to advise Pippa (Sam's OT) that I would have to replace at least one of Sam's weekly OT sessions with a PT session soon. I am currently reading (or trying to) Martha Beck's "Expecting Adam" and have recently read through a passage where she writes some angels are invisible, many aren't. Well, Pippa is one of those that aren't invisible because, without a moment's hesitation, she told me that as Sam is doing so well with OT at the moment and it is obviously having a wonderful impact on him, she would hate for him to have to miss any sessions and would rather charge us a discounted tariff in order for us to be able to afford his weekly OT sessions, as well as fitting his PT in as well. How amazing is that?

Talking about angels, since Sam started crawling he has been very scarce at church, with Chris and I alternating Sundays so that one of us can attend and the other can stay with Sam. We are not yet sure how well having a crawling Sam in church might pan out but are determined to give it a bash this Sunday so watch this space for the result!

And in closing, a pic of Sam giving Barney a ride on his "wheels"!


  1. Hugs to you, Nicky. I completely understand you when you say it's hard to know how much to push and how much to let it be. I just take it one day at a time and try to not think too much about the future. Today is plenty to worry about!

    And about conquering RTS and getting back to normal, you'll find a new kind of normal (isn't there an RTS blog with that name? :) and you'll be content in it. It may not happen right away (ours didn't happen until Natalie was closer to 3...and yours may happen sooner or later.) You are VERY well on your way to being there, but you'll only recognize it in looking back, not at the moment you don't expect it, and then you'll suddenly see you're there!

    Regression is SO hard. But it is a sign that our kids CAN do something...but now they're working on something ELSE. It doesn't make sense, but none of this does...we just learn to accept it and move on. As I say to Lukas, Having a bad attitude won't make it better, but having a good attitude will (I preach to myself a lot when I'm talking to him).

    Hugs, and have a great time at church. I find that low expectations help me call everything a success when it's over.