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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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, July 2, 2015

People = Happiness

Hey...happy second day of the second half of 2015! Didn't know that was a celebrated event, did you? Nope, me neither...it was originally drafted as "Happy LAST day of the first half of 2015"...then it became "Happy FIRST day of the second half of 2015...here's hoping I don't have to resort to "Hey, happy THIRD day of the second half of 2015!
 
Well, it's been a pretty eventful ending to the last half of the year, I can tell you. Kate and Lianie, the Chairperson and Social Director respectively of the Daniel and Friends Fund, invited me out to dinner on Tuesday, 9th June. I was ever-so-slightly curious about their motives and conjured up a host of impressively colourful possibilities, none of which came anywhere close to the actual reason which was...to ask me to join the Daniel and Friends Fund team as Marketing Director. Well, you could've slapped me upside the head with a piece of raw pork...or maybe salmon? Yip, lets go with salmon...I do like salmon...so, you could've slapped me upside the head with a piece of (preferably smoked) salmon and I would not have been more blindsided by surprise.
 
And it was a matter of hitting the ground running with our very first, official meeting just a couple of days later at a local bistro. In case you were wondering, the 'our' there refers to myself and young Sam who had to tag along. Was I stressed? Um, yup. Sam and restaurants is never a fabulous combination, so Sam + restaurant + needing to pay a decent amount of attention was pretty daunting but nevertheless, off we went and 2½ hours later we were headed home again without a trace of a meltdown or the vomit that usually accompanies it. Whoop whoop!
 
 

A few days later Sam attended his friend, Theo's, birthday party and again surprised us with being uncharacteristically calm and even had a bit of go on the jumping castle...well, on part of the jumping castle at least :D 
 
With this new and refreshing outlook on social activities, I found myself actually looking forward to our next outing, which was a get-together the following Saturday to meet some new moms who were keen to join our Daniel and Friends Fund Family. The whole experience felt a little surreal to be honest...could getting excited about socialising and being able to plan outfits instead of vomit-friendly venues have become our normal again? I was too petrified of jinxing the moment by even entertaining the notion but can assure you I sure hoped so because, surprisingly enough, vomit-friendly venues and activities are not floating around in abundance. Too quickly though, I became blas√© about this "new" Sam and when Bramps offered to sit with Sam the following Tuesday when I told him we had a meeting with the Auditor, I ever-so-arrogantly informed him that Sam would be FINE! Less than an hour later, Sam was anything but fine...sharing an enthusiastic screech and protest session with everyone within a 5km radius of the auditor's office, not excluding us lucky few who had front row seats.
 
Has it blown my confidence at persevering with having Sam with me at future gatherings? I think I'm about to shock myself with my own revelation...NO! Not at all...here's why - because when Sam went into meltdown mode that Tuesday, no-one judged, no-one seemed to think any less of either Sam or myself...no-one even flinched, not a beat was skipped...not even by the poor auditor-guy who's first encounter it was with Sam. I've heard a lot of moms with special needs kids, particularly those with sensory-related/autistic challenges, share with despair that one of the things which hurts them the most is that when strangers/ill-informed people witness a child having a meltdown, it is more often that not presumed to be due to bad parenting. Of course that would bother me, but it's never my first thought...my first concern always is that they will think poorly of Sam, only witnessing those few short moments of how he reacts to anxiety but not the very many more moments when he can be oh-so charming, super smart and, yes, even a very tender and loving little boy. I really do struggle with the fear of having Sam's spirit...the essence of who the little dude really is...obscured by the superficial reactions he succumbs to due to challenges related to his diagnoses...and this fear in turn initiates an anxiety in me of making him vulnerable to such by exposing him to circumstances which stress him out and then cause these reactions.  
 
Huh?
 
Okay simply put...I want the people I like to like Sam. I want the people I like to spend time with to like spending time with Sam, even though he has an occasional ear-shattering, nerve-assaulting meltdown. And the key then, for me, to being able to still enjoy socialising and having strong, supportive friendships is thus...spending time with people who understand, who empathise but don't pity, who encourage without patronising, who accept without condition...who get me and my babe, you know, my people. Oh my word...there you have it! The conclusion, finally...
 
TO FIND HAPPINESS ALONG YOUR SPECIAL NEEDS JOURNEY, GO FIND YOUR PEOPLE!
 
But before we can go jumping headfirst into a metre-long schedule of events though, we first need to rid Smurfville of the nasty bug which has Socialite Smurf floored :(
 
A four-hour long nap yesterday afternoon (about his third nap for the day) actually had me a little panicky as I struggled to wake the little dude up. Eventually I decided to give him a nice Epsom salt and destress crystal-filled bath, which is a surefire way to hype Sam up. Seriously. And just minutes later our promisingly vomit-free day was shattered by a double top-and-bottom explosion. Today has been not much different, even though we're almost on the 36th hour of this particular 24-hour bug and Sam is well into the second hour of a nap. This time though I'll just make the most of the gap to blog!
 
Aaaaaaand talking about blogging...one of the things entrusted to my care as part of the Daniel and Friends Fund team is blogging for them. Oh yeah!!!! Gosh, you cannot imagine how excited I am! One of my biggest struggles with Sam's blog, apart from the obvious lack of opportunity to update more regularly, is trying to keep my topics Sam-related. I don't always succeed there, do I? Pffft! In all fairness, you'd have to be in my head to understand the chaotic hoard of stories and thoughts gathered there, desperately seeking an out...
 
A split-second glimpse!
 
Seriously, at any given time I have at least three different books saved on my pc, all in various stages of being documented...so being blessed with another outlet through which to perhaps share some of these captive sentiments is pretty darn amazing. 
 
Please do pop over and visit our Daniel and Friends Fund Blog - I do promise to at least make an attempt at remaining focused on the point at hand xxx

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