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)

Wednesday, June 29, 2011

ET phone home....

...from Stilbaai :)

We decided a couple of weeks ago to make another short trip to Stilbaai this passed weekend and I, in turn, decided to stay mum about it because of the uncanny twist of irony that always seems to occur every time I blog about something. I was certain that had I mentioned our intentions, by Friday morning Sam's health would deteriorate and we would not be able to go. Well blog post or no blog post, sure enough on Thursday morning Sam woke up screaming...not crying...screaming and carried on like that for a good half an hour. After a very short morning nap, he woke up screaming again so I thought another ear infection for sure and warned Chris that if we had one more such incident, we'd have to change our plans. But Friday morning he woke up full of smiles and beans so off we headed early Saturday morning. Sam tolerated the four hour drive like an angel, even though he only managed a twenty minute nap the entire trip. He drank his way through two bottles along the road and the half a muffin he ate seemed to keep him content as an alternative to trying to make cereal while driving.

I had checked the weather predictions during the course of the week which, as accurate as always, predicted a 60% chance of rain in Stilbaai so we didn't bother taking Sam's stroller with, thinking it would be too miserable to venture outside. Granted, Saturday was a little miserable with occasional bouts of rain or drizzle but Sunday morning dawned relatively pleasant albeit still quite chilly despite the sunshine. Meghan had been begging to go "fishing" for klipvissies so just before 10:00am we headed down to the beach but with Sam so smothered in fleece tops, hoodies and even a towel for extra warmth, that you could hardly make out the little bundle perched on my lap.


Meghan and Uncle & Cousin Hendrik trying to scare the klipvissie out of it's pool as opposed to actually catching it....

...and it actually worked!

But with the klipvissies trying to avoid the cold water and remaining scarce we took a short walk along the beach...

...gaped in disbelief at the crazy folks trying to surf in the f-f-f-r-r-r-e-eeeezing cold water and then headed home for the awesome brunch Oupa had waiting :)

 

Sam tolerated the drive home again quite well too, with the exception of the last forty or so minutes when he became a little whiny and agitated but nowhere near uncontrollable. In fact, he spent over an hour entertaining himself with the lid of the flask and my barette. He would put the barette into the lid, shake it till it fell out, search for it and then repeat the process over...and over...and over...you get the picture!


Towards the end of last week Sam had begun showing very slight signs of improvement. Even though he was still snoring-choking-apnoeaing his way through every night, it seemed to be easing off just a little but I think we've finally realised the full extent of how weak his immune system is and how important it is to avoid potential triggers regardless of how short or seemingly harmless the exposure is because by this morning he was coughing and vomiting up slime and not only snoring and snorking while asleep or lying down, but even while he's awake and upright.

So it's really quite disheartening that we seem to be going backwards again, with regards to Sam's health. This has been going on now for like five/six weeks and we just don't seem to make any substantial progress. The other problem of course is that with my little procedure coming up on the 11th July (I say "little" with quivering knees and a lump in my throat - a lump not caused by infected tonsils for once) we are leaning more and more heavily towards a postponement. I sometimes wish I could just WILL Sam back to health...don't we all sometimes wish that?

We are still therapy-deprived at the moment. I actually did confirm Sam's PT session for this morning, on Friday, seeing as he seemed to be doing okay but had to phone in at 7:43am this morning...while covered in puke and with a screaming background accompaniant...to cancel. What a totally awesome vision of motherly tranquility and confidence I must have created for our PT :) Although after the number of times Sam's showered our PT and all equipment/accessories within a 2 metre radius with the contents of his tummy, I think they pretty much "get it" by now.

In an attempt to distract you from the rather sorry image I have now created in your minds, I am proud to share that Meghan brought home another great report card achieving 4's for every subject. Why is my tone a little less jubilant that what you'd expect? Because with each evening during the exams ending with Meghan in tears and me sometimes close to it due to utter exasperation at how she could have spent hours upon hours studying but without being able to answer even half of my questions, I asked her to consider how upset she would be if she failed even just one subject or, worse yet, the term and would stress over and over the importance of being properly prepared as the only way to avoid this. Aaahhhmmmm....great theory there, Mom! There's that argument blown out the water! Thank goodness I've a good couple of months to come up with something new...

2 comments:

  1. Hugs to you my friend! I absolutely love reading your blog. It is very well written and I can always sense your true feelings and humour. You are so positive and you inspire me to do better.

    Give my little smurf a hug for me. I hope he smurfs better soon.

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  2. Thanks so much for the lovely comment, Christine...love the "hope he smurfs better soon" xxx

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