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)

Tuesday, April 27, 2010

Hey Guys! How are you all doing? It's been a while, hasn't it? I've been keeping Mom super busy with just generally being me, so she isn't get much time to update my blog...but this morning I decided "Hey, let's give the ol' girl a break" (Of course it helps that Dad's at home to entertain me in meantime). So, anyway, nothing much has changed over the past couple of weeks - I'm still a bit ill, still not loving baby food and DEFINITELY not doing any daytime sleeping, which means that by 4:00/5:00pm every afternoon I am thoroughly exhausted and at any given moment will suddenly just pass out (sometimes mid-scream), regardless of where I am, even slung over Dad's arm. Mind you, I am very considerate of Mom's routine and make sure I don't sleep for more than five minutes so as not to disrupt my supper, bathtime, etc.

I have been working really hard at my neuro-therapy and yesterday morning even surprised Heidi by going the first twenty minutes without any crying or screaming and even rewarded her with an occasional smile. Of course, after those twenty minutes I realised I was neglecting the "show" I usually put on for the other patients in the waiting room and other therapy areas, so quickly made up for my inconsideration by hitting my notorious "window-shattering" high-pitched scream and closed with the vomit-on-the-mat/ball/Heidi routine. I must say, I did myself proud. As much as I hate to admit it - this whole therapy nonsense is actually helping me a little and I manage to sit up unsupported for as long as eight minutes sometimes.
Mom is really battling to find ways to keep me entertained during the day and comes up with all sorts of odd things for me to do, like a playdate with Barney....I mean, seriously, there's only so much interaction I can have with this big, purple, poofey dude and he's even less verbal than me...so as you can imagine, the conversation is just not flowing. But Mom seemed quite delighted (at least one of us is being entertained) and started taking pics so I thought "Why not" and even offered my rattle to Barney to have a go.

Thankfully Mom got the picture that playtime with Barney at this point is just not THAT great, so I was soooooo happy when Aunty Henriette and Janke came to play on Monday. Janke is so cool, she laughs and chats away all the time and even had Meghan joining in the fun (as you can see Meghan has selfishly cut off her long hair - what am I supposed to grab onto now?)
Janke and I were having such a good time, it felt like we'd been friends since birth already....so, just to make sure she knows how much she means to me, I casually placed my hand on her leg to kinda say "Hey Girl...I'm here for you"

Mmmm...this is a really nice colour on you Janke, and the fabric's really soft. Wonder if they make this for boys as well.

Mom and I also attended a really great workshop in the past couple of weeks, given by a wonderful lady by the name of Grietjie. The workshop was all about what sort of toys are best for me and will help keep me as clever as I already am...Mom's already placed an order for a few things, I can't wait till they arrive. I hope she doesn't get any crazy idea's about keeping them as Birthday presents for when I turn one in a couple of weeks time. Mom really liked the workshop and invites everyone to visit Auntie Grietjie's website at http://www.joyfulmamasplace.blogspot.com
Another really wonderful surprise was when Ouma and Oupa came to visit from Stilbaai over the weekend....myself, Meggie and Luke were spoilt rotten again with pressies and sweeties and Ouma and Aunty Janina both knitted beautiful jerseys for me - I felt really special and so loved.

So, that's basically what I have been up to over the last while. We are keeping some special people in our prayers at the moment, like Aunty Janina who had a fairly major operation on Monday, Great-Uncle Andries who has been really, really ill, Aunty Debbie who fell and hurt her leg really badly last weekend, Aunty Cammy who has started on a new journey in her life, Aunty Cindy who is so so so close to welcoming her new baby into the world, Aunty Jacqui as her twins grow bigger and stronger with each and every day, Aunty Tish from our church who has made the ultimate sacrifice and given up her life here in South Africa to become a full-time missionary in Namibia, dedicating her life completely to spreading and teaching the Lord's Word to the people there - what an inspiration she is.
I am sure there are so many others who need our prayers...but I am only little so can't remember them all right now :-)
Hugs & Kisses
Me and Mom








Thursday, April 15, 2010

THE LIFE THAT'S CHOSEN ME

For all our "local" friends and family :

Below is a link to a song by Karen Taylor-Good called "The Life That's Chosen Me". It took me over a week to be able to listen to the entire song without being overwhelmed with tears, it is an amazing message to all "special needs" parents, as well as their families and friends.

http://www.youtube.com/watch?v=84FHZhB5_Y

If the link doesn't work, you might have to copy and paste into your address bar.

Enjoy!

Monday, April 12, 2010

THE FUTURE'S SO BRIGHT.......

..I JUST GOTTA WEAR SHADES!



And? So what if they're Build-a-Bear glasses?

You can make any shades look good if you're as cool as I am!

Oh my word, my poor child...the things we do for a laugh (you should see the "show" we have almost every night when getting him undressed for his bath, he has "legging-hair" and "vest-hair" and "shirt-hair".
CONFUSED?
Maybe this will help....

Seriously though, this isn't the first time we've put Meg's Build-a-Bear sunglasses on Sam and he doesn't half mind them - altho obviously we don't want to damage his eyes. Although, taking his light-sensitivity issues into consideration, maybe a pair of sunglasses wouldn't be such a bad idea.
So, anyhoo, Sam is slowly getting over his viral infection (slowly being the operative word). He sounds just like an old smoker in the morning as it takes a good hour or two for him to cough up all the gunk that is blocking his airways (I know - sorry for the graphics). But at least he was healthy enough for him and I to make it back to church on Sunday ("church" meaning that Chris and kids sit in the church/childrens' church respectively, and Sam and I pace out the foyer, the kitchen, the bathrooms (desperate times folks) and inevitably land up in an empty, darkened classroom with me perched on a teeny-weeny kiddie's chair (being a shorty has some advantages) where, two minutes before the end of the service, Sam eventually falls asleep. Yah! Maybe I should arrive forty-five minutes early so I can "con" him into believing that the service has actually started which then in turn makes him think he's fallen asleep at the end of the service, instead of the beginning. Mmmmm, worth some thought...not sure how the congregation will feel about not putting the lights on through the service and the worshipping and sermon being done in a whisper. Maybe I'm expecting too much...Hee Hee!
Seriously though, it was truly wonderful to be there on Sunday morning, Sam and I had missed a good couple of services and we have such awesome fellowship at our church - knowing such a caring, thoughtful and compassionate community has been an invaluable blessing for us.
With Sam being ill, we have also missed quite a few neuro-therapy sessions so tomorrow we are back into the swing of things just with a new therapist for this one time as Cathy, Sam's usual therapist, is not at the practice tomorrow....here's hoping all goes well (for Heidi's sake, not Sam's - his reaction to therapy takes some getting used to).
So, in keeping within the subject of "bright futures", something for the heart :-)
"One of the blessings of knowing God is that your life journey doesn't need to be like a map-challenged journey. A heart that seeks God's direction will be rewarded with guidance from Him because God DOES have a plan for each of us."
Carolyn Larsen
"The more we count the blessings we have, the less we crave the luxuries we haven't."
William A. Ward