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)

Sunday, May 8, 2011


A very Happy Mother's Day to all our followers and fellow bloggers! A friend of mine sent a very sweet text message this morning about how a Mom is also a chauffeur, a cook, a nurse, etc. I wanted to add to that list the following : catcher of puke, poo analyser, urine gatherer, gag reflex preventer, apnoea detector, reflux inhibitor, sensory buffer...and so on and so on...but then the text seemed to lose it's charm, so sticking with the original roles for now :)

Sam has been a little under-the-weather over the past week or so. I am watching him closely, hoping to catch the slightest sign of an oncoming illness as there have been minor indications that this might be the case with a particularly stuffy nose at night and a green gooey discharge from his eyes which, although quite common to many of the RTS kiddies, is something Sam only suffers from whe n struggling with a viral infection. But, if a potential illness is at the root of his being unsettled and fussy, he is somehow managing to keep the more serious stuff at bay so I am hoping and praying that health will prevail. I still feel strongly that the thinner consistency milk is contributing to his returned OSA and snoring at night and have had to resort to basically putting him to bed on an empty stomach with his last bottle being almost three hours before he goes to sleep. This does mean though that he wakes up ravenous. One morning last week I lay listening to his tummy grumbling for almost an hour before he eventually woke up which is a little tough for me because I know he does not yet eat close to the amount of food a typical two year old would consume in a day, now to have him going to bed "hungry" on top of THAT worries me. Still, there is a definite improvement with the OSA and snoring on the evenings I stick to this rule.

Yes, so in exactly one week our little smurf will be two years old! The morning of 16th May is going to be glorious because Sam's paed told us in the beginning that the first couple of years are the most difficult and you cannot go saying something like that to an over-emotional, exhausted, borderline neurotic mom and expect her not to take it literally, can you? Of course not :) Wouldn't it be absolutely lovely to have that kind of timeline though? But we don't, so instead we celebrate the challenges and trials we've conquered so far and prepare ourselves as best we can for the challenges and trials the next two years will surely bring. Bring It On, I say...albeit with trembling knees and the most atrociously faked confidence.

Sticking with past conquests, Sam's crawling is still fascinating us...but is now also keeping us frightfully busy. He explores EVERYWHERE and gets into EVERYTHING! Almost our entire house is carpeted, with the obvious exception of the bathrooms, kitchen and a small area in front of the fireplace and of course these are Sam's favourite places to be as tiles + plastic object = joyful, delightful banging! As much as what I so looked forward to Sam reaching this much anticipated milestone, I knew that with it would come even more required attention and care. Of course, having a house that is split on three levels makes for even more stress as, even though each level is only three steps apart, three steps are certainly enough to cause a little, fairly unco-ordinated smurf to go tumbling and, even more horrifying, break something. And the fact that he is super-quick on those little hands and knees doesn't help either. Thankfully, for whatever reason, he has not yet attempted to crawl head first down any of the steps and, quite surprisingly, will stop at the edge, contemplate it for a while and then turn around. This is so weird because he has on several occasions tried to simply crawl straight over the edge of the bed and displays absolutely no fear at the distance between the bed and the floor. So his newly acquired mobility means even less "free" time for me to take care of the usual daily tasks but does create more stimulating explorations for Sam around the house.

 I leave a number of Sam's toys on the floor for easy access but this, of course, means our home looks like a mini-train wreck for the major part of each day.

 It's not too clear in this picture, but Sam has started making blowing motions with his mouth. Just in time to blow out his candles next Sunday...nah, probably not! But still kinda cute.

 He is also spending a fair amount of time on his knees which, although in this picture he is holding on to the bed, when he manages it without support is great for developing balance for walking later. At this point his overall balance is still quite poor and he topples over quite easily.

 One of the first things he always does when on the floor in the lounge is goes for the box of Jenga blocks on the shelf, he then promptly knocks them onto the floor but then ever so sweetly tries to put them back on the shelf. With Sam's initial oral aversion he would not take a dummy or teething ring and the Jenga blocks, which are made of a fairly soft wood, have proved to be a satisfactory substitute as he almost always has one in his mouth. The softness of the wood seems to provide just the right amount of sensory resistance for him, without hurting him but this does mean that the entire box of blocks, apart from being hopelessly incomplete now and distributed throughout the entire house, is also covered in tiny elf-like tooth indentations.

 Some more knee time.

 And is this not one of the areas in the home a tiny smurf should most be avoiding? Well, Sam is not interested in the "shoulda's" obviously and spends most of his time banging on the tiles or the grate of the fireplace. So guess whose going to have a cold home this Winter?

 Some pics of Meg's new "baby", BiBi! Sam has of course christened BiBi with at least two or three good helpings of hair pulling. Thankfully BiBi has become extremly wary of Sam which makes for some adorable entertainment watching Sam chasing her on hands and knees.

 BiBi took an instant liking to Sam's high chair and, in an attempt to keep her off it, Meghan tried to get her used to her own doll's high chair. It distracts Bibi for a short time, but it isn't long before you find her curled up on the seat of Sam's high chair.

As I mentioned previously, my mom spent the last twelve days with us before heading home to Pearly Beach. For Mother's Day I bought her a lovely little photo frame which says "I love Granny" on it, but couldn't find anyplace that could print a photo on time for me to actually make it part of her gift. (Obviously it's a fairly popular idea?) Anyway, this is the picture that was meant to have gone into the frame. It took close to 30 shots to get all three of these rascals smiling at the same time, especially with Sam sneakily turning round at random intervals to make a grab at Meg's hair. Sam's hair pulling and, especially, biting has become quite a challenge to deal with...but that's a post for another time :)

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