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, February 21, 2013

Sammy Singing a Lovely Song

video

Sam has being making a new sort of sound. Although I know that any form of verbalising is in no way an indication of whether Sam will speak one day...his "talking" is still terribly amusing and oh-so cute.

We FINALLY made it out to Haven Of Hope Equine Aid Centre this last Saturday.  We have not been there in forever. Sam had such a good time, he even started falling asleep mid-ride.  And never a wasted opportunity for therapy, at one point Thembi's stride slowed down a little but Sam's little body kept on with the "rocking" motion which is apparently really beneficial for his walking and gait development. 


Sam and Aunty Cheryl on Thembi, completely relaxed and enjoying having a far less anxious support behind him, than his Mom ;)


Meg on Knight for the first time...rather chaffed with herself that she's riding the beautiful creature she once saw as being terribly intimidating


Aunty Marili and Sam's friend Antoni xxx


Neil and Elbie, part of HOH's support, doing an awesome job leading Thembi and Jabu for our boys

Talking about walking and gaits...so Sam went to test-drive the walker Solutions had sourced for him. And it was a perfect fit.  Sam took to the walker immediately, doing a couple of laps around the shop amidst cheering from us, the Solutions' staff and even a few contractors attending to some renovations on the premises.  The walker has been undergoing some "pimping" to make it even more comfortable for Sam and is now ready for collection.  We can unfortunately only fetch it tomorrow morning...watch this space for pics :)

Sleeping : Sam had seven absolutely awful nights...throwing himself violently into the sides of his cot for hours-upon-hours.  He had a nasty fall on Wednesday morning (last week), slamming his chin and chest into the tiled floor at home. Since then he repeatedly signs "sore" but his complete comprehension of the "sore" sign is a little troubling lately. Sam signs "sore" for pretty much everything now...everything which possibly makes him sad or distressed...like having to go sleep, not wanting to eat, etc. Anyway, I have worried that perhaps there is an underlying injury from the fall which is bothering him, although he still drinks his bottle and does chew. He just seems to be constantly fiddling his mouth, quite often flinching or in obvious discomfort.  When we saw the dentist at the end of last year, she did point out that Sam still had a few molars to grow into...so this could also be the problem.  He's also battling with a bit of a nasal drip and blocked nose at night which could be causing a bit of a sore throat. Urrrggghhhhhhhh! So tired of guesswork.
But...and it's a BIG OL' BUT....last night Sam went down at about 8:30pm, did not rock/throw/bodyslam himself once during the night and only woke up this morning when I physically had to wake him just before 7am so we could make it to OT on time. 

Awesomeness....as usual, I cannot pinpoint any physical thing I did remarkably different, except for this one thing.  Usually when I pray at night, I start with my "thank you"'s and then move on to my petitions. However I have to reluctantly confess that more often than not, I fall asleep before I've even made it through half of my petitions.  (Embarrassing but true <BLUSH BLUSH). Last night, after experiencing some really scary sleep-deprivation behaviour during the course of the day (especially when driving from physio yesterday morning and finding myself repeatedly drawn to the righthand curb the whole journey) I excused my self-absorption to the Lord and could only manage a pitiful "Dear Lord, please let us have just one night's good sleep...for both mine and Sam's sake".

Need I say more? 

xxx

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