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, December 1, 2010

Me and my friend, Rian!

Hey Everyone! How are you all doing? I am doing great at the moment, it's been just over three months since I've had any illness which is like a super record for me. And there are so many nice things that come with being healthy like being able to have regular playdates with my friend, Rian. In the beginning I thought the playdates were more for Mom's and Aunty Mandie's benefit so that the two of them could get together and chatter away so I decided I needed to put more effort into it and take control of the situation by showing how much I enjoy spending time with Rian so the second he came into the room yesterday I flashed him a great big smile just to let him know how happy I am that we are friends.

Mom and Aunty Mandie tried to take some pics of us yesterday but Rian loves biting his nails, so I was trying to help bring the picture together by holding Rian's arm.

Rian thought it was quite funny!

And physio's being going well too, I hardly ever cry anymore, much to Mom's and Aunty Heidi's relief.

On Sunday, Ouma and Oupa came to visit from Stilbaai. They brought early Christmas presents for everyone, which are nestled safely under the Christmas tree next to the, now, three presents Meghan has been making for everyone. But my pressie was a great big bag of play balls so Mom thought it would be okay for me to have a go at them now already. I am slowly getting used to them, in the beginning they freaked me out a little but it does help when Mom and Meghan act like goofballs trying to juggle the balls and throwing them around in an effort to make me laugh. They are like SOOOOO embarrassing.

Bathtime is so much more fun at the moment now that I can sit. A few months ago Mom received a gift of sponges from a workshop she attended at Aunty Grietjie's and at first I was quite content to have them sitting on the side of the bath with me or trying to grab them as they float around in the water but recently I found that they are quite nice to chew on as well.

So that's what I have been getting up to lately. I am quite loving my food at the moment and now drink 180mls of milk at a time and finish a whole jar of Stage 2 baby food at every meal - okay, it is the small jar, but it still counts. Mom keeps bugging me with trying to give me all sorts of juice or flavoured water, etc to drink now that the days are getting warmer and warmer, but she just doesn't get that I don't like the stuff - as if my gagging and whinging isn't enough evidence. Thankfully we've had almost a week of no juice-drinking attempts - phew! And I do so love being on my tummy now - bathtime and nappy change times have become my ultimate opportunity just to prove how much. Sometimes it can take up to twenty minutes for Mom or Dad to try and get my nappy and pj's on after my bath, while I roll around like a goofy, naked spinning top on the bed, more often than not still with my sponge/cloth in my mouth. Mom has tried to take some photo's but I am afraid they are just too explicit for this blog...or ANY blog.

It's been great chatting to you all seeing as Mom's always trying to hog the posting - yip, she's a blog-hogger alright! :)

Oh...Oh! I almost forgot. Check out the new link to this really amazing website Mom's had me added to - it's on the righthand side of my blog - just click on the beautiful Prayers for Little Angels picture with the teddy bear.

1 comment:

  1. Hi Nicky,
    Looking very good is little Smurf wow he is doing so well and thankfully enjoying life so its much better for you....praying for this spurt to carry on