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)

Tuesday, January 27, 2015

Courage and Hope

While writing my last blog post, I had to drench up every last scrap of self restraint to keep from sharing that, as at that date, we'd had 6 full night's of uninterinterrupted sleep! SIX NIGHTS! HALLO!  And of course, this blog being abundant with jinxability made me wary of saying anything until enough time had passed to make the issue 'safe' say maybe six or seven....months.But come the 13th I was bursting to tell somebody. Celebratory-worthy matters are hard to come by lately so to have to keep one under wraps for so long was killing me. And boy did I share...with anyone who was willing to listen...and even those who weren't. And what do you think happened?

Yip! It was back to 3-4hrs of bodybashing each and every night. By midway last week I was too scared to get behind the wheel of a car. Managing an average of about 2 hrs interrupted sleep each night was not making for fabulous judgement calls. And of course when there's no sleep, already fragile behaviour becomes even more volatile. And what better place to put this thoroughly entertaining behaviour on display than at your big sister's brand new high school and the very many events which have required attendance. Yikes! There were more narrowly-escaped projectile moments in the last week than in the whole of last year.  So of course, we retreat into our safe haven and watch wistfully from the windows at those going about life.  

I have the utmost respect for parents who have the courage to ignore the stares, dismiss the judgements and just continue going out and living life despite the challenges brought into the mix by Autism. I have yet to find that courage. Right now every inch of me wants to simply keep Sam in our safe place where he is comfortable and protected from opinions which might overlook the awesome little person he is because of not being able to see passed the challenges brought on by sensory/anxiety overload. 

Thankfully, an appointment which was meant to have happened last year but got postponed due to Sam's Gingivostomatitis, happened yesterday afternoon. It could not have come at a better and more much-needed time. For now I am going to make the most of the sleeping smurf beside me but can tell you that


Sunday, January 11, 2015

I had a dream...

...or would that be, I have a dream!

Up until the wee hours of this morning I always thought that, should we find ourselves blessed with just one miracle, I would most definitely want that miracle to be speech, more so than walking...although it certainly is a struggle to have to determine which of the two would really impact ours, but mostly Sam's, quality of life the most.

It seems my heart knows though...I had a dream this morning shortly before waking up, we were at some sort of eatery, Sam and I watching the children play on the grassed area below from a patio. The children were 'zooming' around, pretending to be aeroplanes while a cinema-style big screen on the border of the play area showed movies. Sam stood next to me, clutching desperately to my hand for support and stability, as he does now. He gestured towards the play area and I slowly guided him towards the steps, which he navigated awkwardly. But once on that playground Sam started trying to walk faster and faster, straining against my hesitance to let go of his hand. I urged him over and over to wait, reminding him that he couldn't walk. Suddenly he pulled free of my hand and started running, arms outstretched in aeroplane-style. I just fell to the ground in complete and utter awe, watched him run two wide circles and then flop down on his back laughing with delight, as kids do.

The moment was exquisite...there's no other way to describe it. I've dreamt before that Sam could speak and that was super exciting...but this was something else, just pure, raw, overwhelming joy.

It is a dream I will cherish forever, or hopefully just until it becomes a reality...

Sunday, January 4, 2015

A seriously bad case of Festivalisophobia

I remember Sam being "ill" last Christmas but could only recall that we were doing large volumes of v-wording, without remembering the original cause. A quick search on the blog and there it was...a genuine case of same procedure as last year! No real illness, no nasty little bug flooring an otherwise eager-to-celebrate little dude...just a sensory/anxiety system in absolute turmoil at all the change to the usual, thrived-upon routine and a generous dose of Festivalisophobia (fear of Christmas). Not that we've exactly been partying it up, just attempted a low-key trip to a local botanical garden and a quick drive to the seaside, both which resulted in an epic fail. It's like the kid somehow senses that everything's a little busier, little noisier, a little crazier out there and his defensiveness goes into overdrive just thinking about it...and Sam+stress/anxiety=vomit...and lots of it! (Eeeeeewww, yes I know, totally gross). On Thursday I had a brief moment of excitement when a quick temp check showed a lowgrade fever but unfortunately it must have been purely a momentary strain on his system as another check minutes later showed a normal (well for Sam anyhow) temp again. As wharped as it may seem to be wishing your child ill, a simple once-off virus seemed easier to brave than a possibly recurring phobia of all things Christmas. Thankfully common sense set in (not a regular happening, I'll have you know) and after giving myself a mental slap through the face, I reprimanded myself for even entertaining the notion, be it just for a second, that having a poorly, feverish Sam would be better than simple, non-illness related vomit.

In all fairness, sleep deprivation can mar one's judgement and with the exception of one good night's rest last Thursday evening, Sam and I are both running on an average of about 2-3 hrs sleep a night. I kid you not! And that too was happening this time last year, Sam bodybashing himself so severely for hours on end that I eventually have to place pillows around him to prevent him from bruising himself with the incredibly forceful way with which he throws his little body around. The good thing about reminding myself that we did all this last year, is the reassurance that we will move passed all of this once everything returns to normal again. Normal? Bwaaahaha! I crack myself up sometimes!

We did have one truly awesome highlight to our festive season and it was THAT great that it by far overshadows all the not-so-great stuff. I have been corresponding for some time with an RTS mom who lives in another province with her family and their precious little 'Aines who is 4yrs old and also effected by Rubinstein-Taybi Syndrome. Little 'Aines and her family were holidaying in Cape Town and we had the privilege of spending the better part of one day with them. It was wonderful seeing all the similarities between Sam and 'Aines, although 'Aines is a perfectly-behaved little angel while Sam was in full fight-or-flight, arm-swinging-helicopter-style mode (Ai).

As at this very moment, we are about 36 hours vomit-free so lets just hope that we've seen the last of it for a while now. Being able to get out the house a little more often sure would be great here's hoping xxx