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)

Friday, June 17, 2011

Believing - We Receive

Life's resources have been a little on the low side lately...physical resources are low because fighting a particularly aggressive bout of sinusitis/tonsilitis makes caring for a really sick little smurf fairly tricky, financial resources are low because dealing with ongoing illnesses which in turn call for ongoing doctors' appointments and medication with a medical aid which funds were exhausted about two months ago is also fairly tricky (especially when looking at Sam's scheduled follow-ups with specialists for the next couple of months, not to mention his intervention therapies) and spiritual resources are low as well as a result of not being able to regularly attend services or even find a gap during the day for some "alone" time for prayers or Bible reading. I've tried leaving it till I go to bed, but this hasn't proven too successful :) The danger in this is that the longer you're without spiritual influence, the more often thoughts of "Well, what's the point anyway?" come sneaking their nasty little way in.

So, on Wednesday, I decided it was time to put a stop to this downward spiral and set myself a goal, to somehow manage at least two prayer sessions during the course of the day and to have read at least one Bible passage. The prayer sessions were a little easier than anticipated and the Bible reading took place at the kitchen counter while simultaneously trying to gulp down a sarmie and make Sam a bottle, while Brampies battled with a particulary clingy Sam for a few minutes. Seeing as I have missed a good few daily readings, I decided to start on 15 June and work my way back (it made sense at the time) and I managed to work through the 14 June as well.

A quick side-step : It is important to note at this point that part of my petitions earlier that morning was a request for Him to at least acknowledge that He hears our prayers and hasn't completely forsaken us.

As I was about to head out of the kitchen, I glimpsed the devotional for 13 June. It said :

"Believing - We Receive

If anyone is thirsty, he should come to Me and drink (Jn 7:37)

Are you thirsty? Then drink. "Now this is the confidence we have before Him: whenever we ask anything according to His will, He hears us. And if we know that He hears whatever we ask, we know that we have what we have asked Him or" (Jn 5:14-15). Here are the principles:

Confidence - "the confidence we have before Him:"
Conversing - "we ask anything"
Condition - "according to His will"
Conviction- "we know that He hears whatever we ask."
Consequence- "we know that we have."

I thought - here's the acknowledgement I was asking for.

A short while later I received a text message from Sammy's great-aunty Anthea. She said that she'd put in a request for us to be considered by two of our local radio stations for their respective "random acts of kindness" programs.

I thought - here's the acknowledgement I was asking for.

A couple of hours later our minister showed up for an impromptu visit to see how Sam was doing and to pray for us.

I knew - He hears us.

Now, there's been no miraculous healing going on overnight, no huge lump sum of money anonymously dumped into our bank accounts...what there has been is a slow but steady improvement of Sam's health over the past two days and the comforting knowledge that, despite the saying that when times are hard friends/family are few, we still have family who care enough about us to put themselves out there in an attempt to ease our burdens.

So, Sam is still coughing terribly and his nose may as well have been glued shut with cement, but he's been wanting to play more as opposed to just lying on my lap for hours on end and he's even been rewarding us with that good ol' smurf charm and laughter. I am not expecting much relief for myself until 11 July, when I will be going under for the ENT procedures mentioned previously but as long as Sam is doing better, it's all good. I know my insistance at trying to treat Sam at home may have seemed incredibly unreasonable...not to mention the inconvenience of the "please help" emails I had to send Sam's paed when it looked like we were losing the battle (Dr B's inconvenience, not mine) but that's why I keep stressing the importance of surrounding ourselves with specialists/doctors who can relate to your circumstances on an emotional level, as well as a professional level. Let me give you a prime example : at Dr B's office on Friday, when about to examine Sam, I asked him if he wanted me to remove Sam's shirt and vest. He said it's best to keep both on because Sam will probably moan. I thought - Nah, it's warm in here and Sam seems pretty calm and settled, let me take the shirt off so that Dr B can examine him more comfortably. What do you think happened? Sam started squirming and whining in protest! The lesson? When your doc knows your child as well (and very occasionally better) than you do, you're in good hands :)

 In the midst of all our chaos, Sam has had a haircut...well - half a haircut at least (the reason why there's only a front view..hee hee).




  1. I am so humbled by this post and will continue to pray and do whatever it takes........and yes if we believe it we will see glad that Sam is getting a little better. He is in such good capable hands and what a blessing to find such Medical people.....our God is sure great!!!!

  2. Glad to hear Sam is getting a little bit better. Your family is always in my thoughts and prayers.