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, October 27, 2009

A Baptism and AA (Angels Anonymous)

THE BAPTISM : Our little Sammy was Baptised on Sunday morning, amidst his usual breath stealing-spluttering-gagging-pig squealy-out of control screaming! Hee Hee! There’s one thing you have to say about Samuel – he truly is passionate about his cry-cum-scream. Hopefully this is a sign that he definitely sees vocal expressions as his choice of communication. I was more nervous on Sunday morning than when Chris and I got married and with excellent reason it seems, Sammy lived up to my expectations. In his defence, his paediatrician believes that Sam suffers from something called Sensatory Integration which makes him hypersensitive to…well…basically EVERYTHING! And that’s why he also seems to suffer from my own self-discovered and self-diagnosed “Weekend Syndrome” – when it’s just Sam, Brampies and I at home during the week Sam is pretty relaxed and easy-going (okay – well most of the time), but over weekends when I tend to spend more time in the rest of the house as opposed to us mainly staying in the bedroom, he becomes quite crabby and irritable. So, we’ve been advised to read a book called “Baby Sense” which my best friend, Olla-Flowa, has sent home with Chris today – I can’t wait to tuck in! At least Sam got to meet some of his cousins Jenna, Micaela, Kayla and Dewald for the first time…which was wonderful and it was a great opportunity to catch up with good friends after the service over a cup of tea and piece (or just maybe “pieces”) of cake, in between babies being fed!

Healthwise – Sam is feeding quite well at the moment and (shush-don’t tell his paed) I even gave him half a teaspoon of rice cereal this morning which he “ate” unexpectedly well and didn’t even gag once and still finished his whole bottle an hour later. His physiotherapy is still going along quite slowly due to Sam’s inevitable screaming through the entire session and, although his head control is still exceptionally poor, we have started to notice that his left foot is loosening quite well. He is also reaching out to touch objects now, although he misses most of the time, and keeps his right hand open quite often and tries desperately to suck his little thumb, but although he manages to get every other finger in this tiny mouth, that angled little thumb just makes it a mission impossible. We still need to have an x-ray of his neck done and we are seeing an ENT specialist on Friday afternoon as, even after two courses of antibiotics for ear infections, he still has fluid in his ears and his nose and throat remain extremely mucousy. Unfortunately, due to financial restraints, we’ve had to “choose” one of the above, so we are rather seeing the ENT first and will then do the x-ray next month. It’s a fairly heart-wrenching situation, no-one wants to have to select which of your baby’s medical treatments he most needs…you want to be able to attend to all his needs, immediately. And that’s why sometimes, even though I have been told so many times that God would only give a baby like Sam to special parents (and I never tire of hearing this) I do wonder though if perhaps the address on this particular stork delivery package was not maybe smudged by rain or something because, honestly, I can think of a hundred other parents who to me seem financially, emotionally and spiritually more suitable to raise a baby like Sam. Emotionally I see myself as a fairly “weak” person – I stress too quickly and quite frankly can become very neurotic at the best of times. Spiritually – I am a fairly “new” Christian as, even though I grew up going to church on Sundays and attended a convent in primary school and prayed sometimes, it all just sort of became habit and I never truly understood the meaning of what Christianity was and it was only a couple of short years ago that, with the guidance and support of my, also, life-coach Olla Flowa, that I really felt committed enough and felt a true desire to want to walk with the Lord. So, surely more “mature” and steadfast Christians would have been a better choice? And financially…oh-my-word…there are just no words to describe how dire our financial situation is at the moment. Sam’s ongoing medical costs, thanks to an exhausted medical aid, are just eating up our entire income every month, which is already compromised due to me not being able to go back to work. So surely more financially stable parents would have been a better choice, parents that could send Sam for every therapy session, x-ray, specialist appointment he needs. But, for whatever reason, God chose Chris and I to be Sam’s mom and dad and I have to trust that he believes we can do it and that he will help us provide Sam with everything he needs. And so I would pray every day that God would answer our financial needs…whether it be by winning the Lotto (just kidding)…winning a much-needed second car…striking oil in the backyard….winning a complimentary bond settlement prize…..stumbling across a bag filled with R100 000.00 in the road, but so far none of these things have happened yet (I know, it sounds a bit ambitious but you have to admit that a bond-settlement competition would be AWESOME – get on it (bank) and don’t forget where you got the idea). And then I remember a story about the guy who was trapped on the roof of his house during a terrible flood and who kept praying that God would save him and every rescuer that came his way he would refuse, saying that God was going to save him but then he drowned and when he faced the Lord in Heaven he questioned why God hadn’t saved him and the Lord stated that he had sent several to save him but the man had refused. And that brings me to….

ANGELS ANONYMOUS : A few months ago one or two people suggested to me that we put our banking details on Sam’s blog as there are perhaps those who, knowing that we are taking some strain financially, would like to make a donation. Although we dearly appreciated the thought, we just didn’t feel it was “right” and to be honest, the embarrassment and shame of admitting that we are struggling prevented us from doing it (guess I just got over that inhibition by posting it on the blog!!). But here I am wondering repeatedly what it is we are doing wrong that is preventing the Lord from answering our needs and in the process am overlooking the “rescuers” he is sending to save us. So, although we still aren't comfortable with taking money from others, we do want to say Thank You from the bottom of our hearts to all the angels we have in our lives who constantly offer their support (I don't mean financially) and prayers and confidence in our abilities…it makes what could have been a cold, dark and deserted road become a luscious green path filled with beautiful flowers, precious butterflies and heavenly-filled scents.
P.S. Chris is going to upload some pics tomorrow – don’t forget to take a look!


  1. Chris and Nicky, God definitely knew what He was doing when He gave you Sam! I'm so pleased to hear about the progress Sam has made. I'm emailing you privately about possible financial assistance.

  2. please mail me some pics of the little guy.good luck and help will come