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 17, 2012

The Birthday Boy!

On Tuesday, 15th May, our little conqueror celebrated his third Smurfday (ala Kym-Maree - I've stolen it, but thank you xxx). As the messages streamed in from everywhere through all mediums, I realised just how many lives this little smurf has touched.

As always with Sam, celebrations are kept very low-key and while I would adore throwing Sam a lovely themed birthday party (Yes - even though it would sport way too many Lala's and Po's) it would more than likely be more for my beneift than Sam's. We'll wait it out another year and perhaps by this time next year Sam's sensory issues might have subdued a bit and a proper birthday party would be more enjoyable than stressful for Sam....those words do sound awfully familiar though. I'd like to think that, despite still been woken up at the crack of dawn for an OT session, Sam had a relatively pleasant day with visits from Aunty's Mandie and Cammy, not to mention a sweet haul of new toys. Fairly subconsciously, we've noticed that pretty much anything we buy lately in the way of a "toy" always has some or other educational/therapeutic element to it and so desperately wanted to buy something this time that was purely just for fun. The mission, however, was unsuccessful. The only thing "fun" we did give Sam was a really basic remote control train, to perhaps satisfy his OCD button-pressing fetish, but with a little boy who even jumps at the sound of velcro tearing the train just scared the living daylights out of him :)

Besides Sam turning three, not much else has changed in Smurfville. With the exception of two nights this passed week, Sam's nighttime sleeping (daytime naps aren't even worth a mention) is still largely disrupted and eratic and I don't expect it to improve anytime soon. Getting him to actually fall asleep is also still fairly challenging. When Sam was ill I couldn't resist but resort to walking him to sleep again but, when collecting another set of iBuprofen tabs (to ease the pain of shushing 13kg's to sleep), our local pharmacist subtley pushed a brochure across the counter for a local rehab clinic....making me think that perhaps it was time to rethink the whole thing...or find another pharmacy perhaps?

So, we're back to Sam going down in his cot, which is pushed flush up against our bed, while either Chris or myself lay next to him until he falls asleep....Sam that is, although sometimes Chris beats him to it. The thing is, while Chris is extremely disciplined in not interacting with Sam while they lie there, I cannot ignore him when he "talks" to me....which in turn leads to it taking sometimes 45 mins to an hour for Sam to fall asleep, especially when a little hand reaches over and tousles your hair or taps on your leg. Quite often though the tousling becomes tugging and is accompanied by a few slaps across the face or whichever other part of your body the smurf can get in contact with. This morning, after Sam slapped me a couple of times on the head, I moved my face out of his reach. Not to give up so easily (he is a conqueror of all things after all) Sam grabbed my hand and sort of threw it at my own head a couple of times, as if to say I don't mind who does the long as there's slapping going on. It's so incredibly difficult not to laugh then.

I read an article recently about how important it is for moms/primary caregivers to take really good care of themselves, especially moms/caregivers of special needs children. It is suggested that you get as much sleep/rest as possible, eat healthy, take yourself to the doctor when necessary, etc. I found it quite entertaining really because if all those things were so easily achievable, would there be such a thing as an exhausted mom? I considered sending in my own article which would state that for quite some time I've survived on an average of 2-3 hours sleep a night (and not always in one go), medicate myself on whatever I can find lying around the house when sick and over the past week or so have consumed a diet predominantly of tea and biscuits and, as far as I can tell, I am still walking around....albeit a little shakily...hehehe. I'll keep you updated on the T&B diet as it's terribly convenient especially if Brampies is around, as he makes a cup of tea literally on the hour. It's just so easy to grab a cup of tea, (almost always) stick it in the microwave, grab a biccie, dunk it and of course, share it with Sam....fuel for me and entertainment for Sam all in one go. I mean, who really needs vegetables....protein...calcium...carbs...or clothes that fit....right?

At Sam's OT session this week we discussed the options available for getting Sam to sit and walk, including the use of a walker or gait trainer (pics below) :

Up until Tuesday, I really thought I had this whole "acceptance" thing down. Now I am really not so sure. Of course I know the statistics, the very large scale of development for our RTS children and even that a number of Sam's RTS siblings make use of walkers. But yet the thought of seeing Sam in one is very literally breaking my heart and it's difficult to even type this without wanting to just burst into tears. I just took it for granted that Sam would crawl and then walk, even if it's at his own pace, but both Sam's OT and PT feel that having a transition step from the one to the other would benefit Sam. Me? I am petrified that once Sam starts using the walker, he'll never stop. And it's especially frustrating that a year ago he was pulling himself up and coasting along the furniture...and now we're having to consider this.

I know that, like everything else, I'll get my head around this...and hopefully my heart too. We did research the cost of importing a gait-trainer from overseas (apparently the ones available in SA are just not as good) but were a little shocked when the prices hovered around R4 000-00. Thankfully, the PT that works with Sam's OT has one we could "borrow" for Sam for a while so by this time next week we should know if it's an option for Sam.

We've known for some time that Sam is going to have his foot operation round about three-and-a-half years old and often spoke about how challenging it was going to be keeping Sam off his feet for the six weeks that the pin stays in....I even remember saying once or twice that maybe it would be better if Sam hasn't started walking properly by then, purely to make that part of the recovery easier.  Now I sit and wonder if perhaps I have not, yet again, invited this particular challenge in....


  1. The fear of Sam not walking is the same as my fear that Stephen won't talk. I mentally fought against his use of the AAC for so long, thinking it meant I was giving up somehow... but I'm certainly not - I'm just bridging the gap between an inability to communicate and the development of speech. Does that make sense? I KNOW in my HEART that Stephen will some day be able to communicate with his words (he does say a few things on occasion, and with more frequency now), but... Keep this in mind - Sam DOES move around! That knee walking is ADORABLE!!! A gait trainer or walker will just help him get over the hump. (((HUGS)))

  2. Happy birthday Sam! I know you will walk in time, whether it's with a gait trainer or without. But there are lots of smart people helping you, so I know you're in good hands. Hugs, Natalie