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)

Tuesday, December 21, 2010

Day 2

Sam - 6:42am

I've had a really peaceful night's sleep, despite the trouble it took to get me there. When I woke up yesterday afternoon it took me some time to realise that firstly, I was not in my cot at home or in mom's arms and secondly, I had all these pipes and tubes attached to me which just reminds me of that awfully long time I spent in NICU. The sister quickly gave me something for the pain but panic had already set in and it wasn't long before I'd crossed that inconsolable line, leaving me rolling and thrashing around in the cot in what could have appeared to be a comical rendition of the horizontal twist. Of course, my panic became everyone else's panic that I was going to hurt myself or, worse yet, cause a leakage of spinal fluid which is why it is so important for me to be lying flat and still. It was quickly decided to rather sedate me. While the nurse prepared the meds, mom was allowed to give me 50mls of milk...if you can call it that. It's actually more like trying to drink your porridge or a cheeseburger, as dad had to super-thicken the milk. As if that wasn't bad enough, along came mom with a syringe containing 4mls of seriously vile-tasting sedative. Now, if you don't know me very well you would think BIG DEAL! WHAT'S 4mls? And then I'd have to educate you on how I do NOT take any other liquid in my mouth other than my milk and, very rarely, some tea. So, 20mins and some choking, gagging and crying later the sedative was down the hatch. APF (Awesome Prof F) then came to check on me and I thought it a good idea to keep the folks on their toes a little longer, so by the time he'd entered the room and was listening to mom and dad frantically trying to explain that I really HAD been trying to wreak havoc, I lay sweetly and peacefully in my cot, the picture of gorgeous blue-eyed tranquility. Thank goodness for mom (who was secretly scanning the room in search of a hidden camera which might testify to their claims) restraint (or lack thereof) got the better of me and it was back to the horizontal twist.

If there's one thing I've learnt over the past 19mnths it's that parents sometimes take really long to train...I mean,there I was...dripped, cathetered and cut open, in a strange room, with strange sounds and strange smells and still I was expected to just quietly and calmly put myself to sleep, NOT in mom's arms, which is how I always go to sleep? Really? APF, being the APF that he is, then said that mom can hold me as long as I stay flat. Yah for me and YAH for mom. So, although it proved a little challenging logistically, I was soon in mom's arms and just as quickly fast asleep.

I am not sure what the rest of today holds but I do know that I have an incredible and divine God who watches over me...Who brought me safely and successfully through my surgery, Who has instilled his love and caring in so many which shows in the number of sms's and call's mom has received about how i am doing, Who gives mom the strength to care for me and face my challenges with me, Who has a whole team of angels watching over me...some in heaven, some here on Earth.

Mom - 2:30pm

Our little smurf has had a rough day, has been really uncomfortable and troubled since about 8:45am and has only now fallen asleep, two sedatives and numerous painkillers later. He also managed to desemble his catheter again and tear the plaster loose on the catheter and drip three times each. Wailed PLEASE HELP ME's to all and sundry (me that is, not Sam) and APF has just been to check on Conqueror Smurf and agreed that the catheter can be removed, which removal Sam performed himself while the sister was still taking the tape off! Sam's feeds have been increased as his reflux seems to be keeping itself in check so the drip will probably come out as well. Nothing symbolises healing like the removal of tubes!!

1 comment:

  1. Nicky - sending you HUGS and to Smurf who is being so brave. May each day get a little easier. Shout if you need ANYTHING!