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, May 9, 2012

Smurf Wars

Things have been somewhat hairy in Smurfville over the last few days. Sam seemed a littly more "fragile" than usual at the beginning of last week but I put it all down to his teething...not least supported by the fact that he sports two farely red and "thoroughly gnawed" thumbs lately...because them being angulated doesn't attract enough attention? By Wednesday there was definitely something else bugging Sam when we were back to the clinginess, mostly sleepless nights and nocturnal thrashing that Sam is prone to when something is ailing him. Even if I'd had the time to blog, the posts would have looked something like this :

Wednesday, 2nd May

 Thursday, 3rd May

Friday, 4th May
H E L P !!!!

The fourth was definitely not with us on Friday <<cringe>> Sorry, couldn't resist...especially because I only found out round 6pm why everyone was "May the Fourth be with you"ing all day.

In actual fact, when Chris let me know he was on his way home on Friday evening I sent him a text saying "Are you sure you don't want to rethink that?" No point in both of us going down, right?  So run while you can my friend! By Friday evening Sam's eyes were looking really puffy and his cheeks all flushed and somewhat swollen. Mmmm...I told Chris I was quite convinced Sam had sinusitis - had a little experience with that one myself you see, so I could almost "feel" how Sam "looked". 

The weekend was pretty much more of the same so come Monday, off we headed to the paediatrician who, after a thorough examination and usual vomitting that comes with Sam being weighed, said "Mmmm....Sam has a rather nasty sinusitis!" So another ten day course of antibiotics for Sam...the only antibiotic left that we haven't exhausted during the last three months. Sam seemed to have a much more comfortable night on Monday, but last night we were back to the smurfrobatics (nighttime thrashing), now accompanied by additional coughing coming from Meghan's bedroom. Sigh!

Ironically, Sam had his best ever physio session last Wednesday...all thanks to his iPad. It had worked for his previous OT session, so I suggested to Heidi we give it a try for physio as well and, with the exception of one or two moans from Sam when Heidi tried to push him a little, Sam did really long as I kept the apps flowing. So being able to use Sam's iPad to entice/distract Sam with OT and PT respectively, has proven to be quite the added bonus. However, at this point, we are focusing predominantly on speech prompts and signing for speech therapy where bringing the iPad in would not really be beneficial. Usually this would not be a problem as Sam is quite relaxed and comfortable with speech therapy, but on Thursday Sam obviously felt he had to give us at least some therapy resistance for the week and so moaned and protested throughout the entire session. With physio having gone quite well again this morning, let's hope tomorrow's speech session is not going to follow last week's pattern.

That's roughly about where we are at the moment. Sam's Granny is coming for a visit from tomorrow until Monday, which is something to look forward to and other than having to go do a bit of a hunt for a birthday pressie for Tuesday, we have nothing else really exciting planned. Yes! Sam is three years old on Tuesday. Almost hard to is the fact that he now weighs a solid 13kg's (although I have no trouble convincing my aching arms and neck that he weighs that much). Exactly three years ago I was lying in hospital praying that I would carry Sam to 34 weeks, but that just didn't seem to be the plan for us :) 

Giving a lighthearted account of how things have been over the last week or so is quite refreshing and therapeutic...but this time last week lightheartedness was the last thing I had running through me. Disheartened would be far more accurate. We've dealt with it before and will no doubt deal with it again...aggressiveness. Just after his surgery in August, Sam became extremely aggressive and lashed out mostly at me and, with obviously feeling really crummy last week and not being able to communicate it to anyone, Sam resorted to some pretty aggressive (and mostly well-aimed) hitting and kicking. While I know not to take it as a personal attack, it doesn't always soften the blow to one's spirit. It's really only the second time we've dealt with this challenge and by Monday Sam was not only back to his usual affectionate self, but even seemed to be trying to make up for his behaviour last week by dishing out even more love and hugs than usual. When I allow my mind to delve into that dark place, I have to admit that it is something that I find quite frightening. I know, from occasional posts to the listserv or FB group, that behavioural issues as these RTS sweeties (and many special needs kids I would presume) grow older are not uncommon. Almost makes you wish there was a way to prepare yourself for it - but that would just be too easy, now wouldn't it? Still, perhaps trying on Meg's goalie kit might not be entirely unfruitful ;)

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