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)

Wednesday, April 20, 2011

A Swinging Easter

I know it's only been a few days, but I am almost certain that in six month's time I will still not be 100% used to seeing our little smurf crawling around and, even more exciting, exploring. The fact that he's crawling is pretty amazing on its own but add to it his overcoming his fears and sensitivities to his surrounding is pretty darn close to unbelievable, especially looking back at where he was a month ago. Yay for OT! Prone to beating myself with the relentless why-didn't-I/we stick eg. why didn't we do OT sooner, why did I stop the Nestargel, why did I re-start the Nestargel....ya da ya da ya da...comes one of my most crushing why-didn't-I/we's.....

Why didn't we put a swing up in the house earlier? And this is why.....

Sam is loving it and although having it in the middle of the lounge/living area is not the greatest idea, decoratively speaking, it means we can do several things while keeping him entertained and being close to the tv for Barney time isn't a bad idea either.

With all the exciting new things happening in Sam's and, therefore, our lives it would be quite easy to lose sight of what time of the year it is....mmmmmm..well with the exception of the thousands of Easter eggs which have been displayed in every shop since 26th December, that is. In keeping within our spirit from last year, we gave the kids their Easter eggs on Sunday already as, although we don't want them to have to feel "left out" when all their friends are drowning in chocolate bunnies, we don't want them to lose focus on what Easter is about and come Good Friday and Easter Sunday have them more excited about the anticipated sugar rush than the spiritual meaning of this period.

At this point a very quick side-step is required to say this : "Hi, I am Nicky and I am a chocaholic! I have been a chocaholic, probably, since the first day I was born (thanks Dad) and my addiction intensifies with age, as my family will testify." The only time I have even mildly considered cutting down on chocolate was when I was expressing breastmilk for Sam and even then had to resort to two blocks of dark chocolate as opposed to going cold turkey. The day Sam went on to AR formula I think I polished off a whole slab of chocolate and could probably count on one hand the number of days I have gone without chocolate since then. In my defense, I have to blame my Dad who is as addicited to chocolate as what I am.

Okay, you will understand the significance of this side-step soon.

At our Sunday service our minister urged us to carefully consider our lifestyles over the coming week, at least, in order to even just try and comprehend the emotional turmoil Jesus was enduring in the week leading up to his being betrayed. Now as kids growing up in the Catholic Church and having to give up something for Lent we almost always chose something we weren't that fond of anyway (I remember giving up liquorice one year but honestly don't think I'd eaten it even once in the year leading up to Lent). So Meg and I chatted about what we would like to offer up and although things like homework and vegetables came up, eventually agreed on chocolate. Yip, after just receiving this enticing collection :

Of course it doesn't help that at, what seems like, half hour intervals my dad keeps offering us chocolate (he's offered me a block while I sit typing this, can you believe it?) and kept telling Meghan last night "Just take a piece!". She has stayed strong thought but keeps insisting that the bunnys' eyes are watching her! It has been kinda fun spurring each other on, think next year we'll try the full 40 days even though we no longer belong to the Catholic church.

More seriously, we are focusing on the Bible story surrounding Easter from Meg's Bible The Children's BIBLE Story Book (Retold by Anne de Graff & beautifully illustrated by Jose Perez Montero) and in keeping with the spirit of what our minister spoke to us about on Sunday, here is an excerpt :

"Jesus was asking the Father to protect all His followers for all time. He was praying for people like you and me. When He had finished, He led them into the garden.

There, He took Peter, James and John. They went off alone together. Jesus was very upset. He said, "My soul is torn up inside, to the point of death. Stay here and keep watch." He was going to talk to His Father. Then He said, "Pray that you won't be weak tonight." Jesus went off by himself to pray.

A short distance away from the disciples He fell onto the ground. "Oh, Father!" Jesus cried out, "If it's possible, don't let Me go through this pain. My Father, isn't there any other way, must I go through this?" Jesus knew God wasn't making Him do anything. Jesus had to chose to obey. That way God could work miracles. He could offer all people for all times a chance to start again and be clean with God.

Jesus looked up at the stars. He said, "Father, I am willing to do what You want."

Jesus in the garden called Gethsemane on the Mount of Olives

1 comment:

  1. Oh Nicky this is so awesome and I so agree with you that this time of year is so very special in our lives......where would we all be if Jesus had said "sorry Father I cant do this its too hard"? What a sacrifice it must be to give up chocolate especially for you and hope Dad does not win this one. When we choose the right path all the miracles follow. Sam in his swing is just too much so who care about the decor looks pretty darn good to me......Spending time with my sisters this Easter is very special to me...lots of love