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)

Saturday, March 5, 2011

Make sure your recreations re-CREATE / Sam's first visit to the Beach!

My friend, SH, was recently chatting about the danger of allowing not only your physical being but also your spiritual, emotional and mental being to become weakened by whatever daily challenges we face...my "friend" being Selwyn Hughes and his "chatting" being one of his daily devotional Bible readings. As we all know, the more our defences/spirits weaken the more of an easy target we become to Satan. So he felt it was important to make sure that your recreations really do re-CREATE your spirit, your drive, your positivity, your faith, etc. Recreations which do little more than instil competitiveness, frustration, disappointment are really, at the very least, pointless if not just more detrimental.

So, as we've been riding a high wave of throwing up and sleepless nights again, we decided to do something plain and simply FUN and RELAXING this morning and just after Sam woke up and had his first bottle, we bundled him and Meg into the car (it was way too early for Luke to roll outa bed) along with some muffins, a spare bottle and some boiling water (thanks Cindy) and, of course, Sam's nappy bag and headed off to Blouberg Beach. We arrived just before 9am in order to avoid the inevitable crowds and heat and figured we'd just give it a half hour go to see how Sam did with this strange new surrounding. Just stepping out of the car was rejuvenating enough, especially when your social life revolves around therapy or doctors rooms and the school carpark. Well, our little smurf enjoyed it so much that we landed up staying just over an hour and the only reason why we eventually left was because a) I actually hadn't thought to pack in any toys for Sam (hey - not used to doing the "outing" thing with Sam...need some practice) and b) Chris had a haircut later in the morning.

It was so incredibly refreshing just having those short sixty minutes and an awesome change of scenery. So, we have already planned another trip to the beach in two weeks time...and this time I'll be way more prepared.


 Sam, quite willingly, eating a chocolate muffin for breakfast.

 Oral aversion? What oral aversion?

 We know that a lot of the RTS kiddies have problems with textures like sand and grass, etc but Sam had absolutely no problem having his feet in the sand and later even allowed me to pour some of it over his feet and legs.

 The water was F.R.E.E.Z.I.N.G and I barely managed a one second tipping in of my big toe before getting cramps but Meg and Chris were much braver...

 Although Meg was not brave enough to give up without a fight when Chris tried to throw her in!
Luckily he was just playing.

 But she chose to rather keep her distance just in case :)

 Table Mountain

 The  Seli1 which has been stranded just outside of Blouberg since 2009

 And then...my camera's batteries died so for the most important pics of Sam actually braving the cold water/sand I had to make use of my phone's camera.


And of course, no place/event goes without some hand clapping!

3 comments:

  1. What a great idea! It's so easy to forget to relax and take time out for JUST fun sometimes. Life can get way too hectic and a change of scenery like the one you just did is such a good idea. As you blogged about " just stepping out of the car being rejuvenating enough..." I as the reader, could smell the the beach.. I felt for that split second that I too had escaped... perhaps I too shall plan to rejuvenate...

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  2. I'm so glad you had a fun outing. It does refresh our spirits to do something new, especially something that we didn't think we could do without it being a burden. Get out! Wade in the ocean! Whoo hoo!

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  3. I am so homesick seeing Table Mountain and the sea some of the things I miss the most. Amy still asks to go to the beach every day something we did in Hout Bay even for just a short while most days. So good for Sam and I love the way he seems to be enjoying it so much. Makes for good sleeping too!!

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