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)

Wednesday, October 10, 2012

Sleep Wars Continue

The title really sort of wraps it all up, doesn't it? Of course after I jinxed the good night Sam had last Wednesday by blogging about it on Thursday, he's been stirring every evening round 12:30ish...sometimes thrashes around for a coupla minutes...sometimes for a coupla hours...and then falls asleep again after that, still with lots of jerky twitches.  Last night Sam woke the usual time, screamed as if he was being barbarically tortured for an hour or so and then drifted off again.  Perhaps its time to accept and come to terms with the reality that this is Sam's new sleep pattern and find a way to adapt to it.  Don't ask me how one possibly does that...any idea's?

Both occupational therapy yesterday and physiotherapy this morning were a treat though.  Yesterday Sam's OT was trying to encourage him to play with playdough which he kept refusing to touch, although he was quite happy watching her cut out the little burger-and-fries shapes. The little french fry cutter was adorable and of course both Christa and I kept remarking on the little "chips" she was making.  Sam looked at Christa, looked at the teeny playdough shapes, seemed to think "What? Chips? Why didn't you say so..." and promptly tried to put one in his mouth! After I've figured out how to adapt to the new sleep pattern, going to find me an edible playdough recipe...only way we'll get Sam to touch the stuff. 

Strangely enough Sam's been quite relaxed at touching new textures during his other therapies. He's a real character, isn't he? Is joyfully "verbal" and eager to show off his signing during physio and OT, but refuses to do either during speech therapy.  He'll happily mess with kiddies foam on the mirror at speech therapy or spend ages taking foam animals out of a container of water, placing on a mirror and removing again during physiotherapy but refuses any contact with textures during occupational therapy.  I sometimes think we completely underestimate that little mind.

Shopping trips have proven a little easier to manage lately...well up until yesterday that was.  When taking Sam for a walk, I'd started strapping the iPod to his pram with a little velcro speaker attached, which he seemed to love and was quite content to listen happily to He's Got The Whole World in His Hands over and and...and over (beats my squawky rendition which is all we had before).  So when needing to go to the shops last week I thought what the heck, let's give it a shot.  Other than getting a few odd stares at Sam's "dancing" (in other words, serious happy-flapping) it proved to be an awesome hit and we even managed an extremely painful (for us that is) two-hour long hunt through Canal Walk over the weekend.  But in Smurfville all good things come to an end...far too quickly. And yesterday the iPod decided to go on the blink. Disaster. Not only for the shopping benefits, but also because thats the only way we manage Sam through the streching part of his physiotherapy.  Luckily Heidi worked super-quick through Sam's stretching this morning and had finished just as he started seriously protesting.  So...after I've discovered awesomely successful ways of making Sam's new sleep pattern work for us and found a delicious and safe recipe for edible playdough...I am going to design a sensory friendly pram/buggey (with regards to colour, depth and position of the seat, height, etc) with built-in speakers around the frame where one can simply plug in your iPod.  Think it'll work?

But before I get started on the above, we are hopefully headed off for a weekend away to celebrate Sam's Ouma and Oupa's birthdays this coming Friday.  We seemed all good to go until last night when Meghan started coughing and Sam woke up sounding disappointingly croupy this morning.  Just four nights of germ-evasion...that's all we need. Headed off to the shops this afternoon, devastatingly iPod-less, to stock up on immune boosters and the likes.  Holding (angulated) thumbs x

1 comment:


    Edible playdoh. I've never tried any of those, though.

    I'm so sorry that Sam is still having such a hard time with sleep. It's so hard watching them when they are so miserably tired. (((HUGS))) to all of you. Hang in there.