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 26, 2011

The V-Word Slump

Over the past couple of weeks I cannot tell you how many times I have mentioned my surprise that Sam has been so healthy for so long (TSC surgery not included under "unhealthy"), especially as everyone in our house has done a fair round with flu/bronchitis, etc. I even literally touched wood a couple of times when saying it...because my experiences tell me this works? As posted recently, I had Sam at the doc last Thursday because, after all his difficulty breathing, etc at night, I was pretty convinced there HAD to be something brewing somewhere, be it nose, ears, throat, lungs! I was wrong...well, at that point in time at least. Sam's mucous build-up progressively worsened, albeit remaining clear, and without a fever. By yesterday, after several sleepless nights, he also developed an ominous croup-sounding cough but still no fever. Now, what could be more trying than taking care of a sick and miserable little smurf? Taking care of him while YOU are also sick and miserable!! There has been very little actual sleeping taking place in our home at night, both Meg and, especially, Luke cough through a large part of the night and in our bedroom Chris' sleep is alternately disrupted by first Sam's coughing-cum-choking episodes and then my own coughing and spluttering. Add a whole lot of assignments and tests in prep for next week's exams to that and you've got yourself a surefire recipe for AAAAaaaaaarrrrrrrggggggggghhhhhhhhhhhhh! [Rolls eyes and lashes tongue out in fake suffocating-motion for emphasis]
I have this really annoying tendency to rush Sam off to the doc the split second I notice something which might be a potential illness and always with the same result - that there is little they can do besides some occasional symptomatic relief, unless it becomes a full-blown infection, in which case they will only then prescribe an antibiotic. I really do know and believe this is always the right course of action, yet cannot seem to break this premature behaviour even though I know there is little the docs can do and even find myself starting off the consultations by confessing that I have perhaps rushed in a little too soon. The result? Inevitably we will land up back at the doctor a few days later with a full-blown pneumonia or viral infection which can then finally be treated. So, after yet another "wasted" appt last Thursday I was not sure when Sam's symptoms changed yesterday, whether I should make another appointment or wait it out until there was a devastating fever or at least some green mucous to work with. The thing is Sam's fevers tend to come flying in suddenly at ridiculous temperatures instead of building up slowly and usually results in a hospital stay and with Meg having a hockey tournament on Saturday morning, Sam's Ouma and Oupa coming to visit and Chris' birthday on Tuesday I thought, perhaps....just perhaps.....this time we can catch whatever-it-is before we're already on our way to the hospital's emergency unit in the middle of the night.

Well, would you believe that we got it right this time? (Well, for now at least) I gingerly made another doctor's appointment this morning where we discovered that the whatever-it-is happens to be another bout of croup, but still in the fairly early stages which is why there is no fever yet. With the help of an antibiotic nasal ointment to clear the irritation there, an eye drop for Sam's slightly gooey eyes and, most importantly, some cortisone to neb Sam with we should, with loads of luck, be able to avoid the hospital this time. Or so you'd think, right? Another touch-that-wood bit of thankfulness was Sam's scarce v-wording. Note I say "was". What with the coughing and Victoria-Falls-like post nasal drip happening at the back of Sam's throat the gag reflex and, hence, v-wording are back with a vengeance, savouring its most dramatic appearances for when I have to try and neb him so, so far today I have been vomitted on three times (I can say the word "vomit" now because I know I can't jinx something that is still happening) with one particularly pleasant throw-up taking place in the car again, while waiting for Meg outside school. Almost as delightful as the throw-up that took place about five minutes after taking Sam out of the bath to clean him from the first throw-up.

You know, we have been through a lot with Sam...the surgeries, pneumonia's, kidney and bladder infection, seizures, developmental delays...yet nothing destroys my spirit like the vomitting. I can't explain it, it's like I see it as a personal attack on ultimate enemy! Of course, as I type this I realise how silly that sounds but I guarantee you when it happens again tomorrow and I sit there, not only covered in vomit but also in frustration at the nutrition and medication painfully administered but which Sam would have just expelled from his tummy, in resignation at losing another battle to the vomtting and, the real issue at hand I dare suggest, the fear that I cannot do this and  that I am failing Sam, then it doesn't feel so silly anymore...just really sad.

On a high-note, particularly high in actual fact, Chris underwent a rigorous appointment with the cardiologist on Monday and although Chris' cholesterol levels are dangerously high at the moment (but not nearly as high as what the cost of appointment did to Chris' blood pressure) there seems no need for any major medical intervention at this point, provided Chris is prepared to make a drastic change to the amount of exercise he gets at the moment (so easy to say for someone not living with our feisty and endlessly demanding little smurf) and, more importantly, Chris' diet. Poor Chris! We are not particularly healthy-eaters in our home and love decadent treats but still, for Chris' sake, are all going to make a conscious effort to adapt our diets in order to make it easier (well, most of us that is - thanks for the jam donuts, apple crumble & cream and potato crisps so far this week Brampies). The scary thing is that, when I really sit and consider it, my diet is shocking. Mostly during the day I tend to grab whatever is quick and easy to shove into my mouth, usually consisting of cereal bars, rusks, biscuits, etc and I've never bothered to even have my cholesterol checked purely because of classic stereotype misconception that it's usually the more mature males that are afflicted by dangerous cholesterol. I'm surprised I haven't been slapped in the face with a heart-attack yet? Oh no! Quick.....TOUCH WOOD!

1 comment:

  1. Sorry you've all been sick. Being sick while your children are sick is the worst and should not be allowed!