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)

Friday, May 21, 2010

HAPPY FIRST BIRTHDAY SAM!

It's almost hard to believe that it's been ONE WHOLE YEAR since our little Smidgey Smurf fought his way into this world...ONE WHOLE YEAR since we first heard the words Rubinstein-Taybi Syndrome...ONE WHOLE YEAR since we left the hospital without the baby we came there to deliver, feeling robbed and devastated of what was meant to be such a celebrated occasion...ONE WHOLE YEAR since I had a single solid night's sleep (with the exception of that very first night Sammy was born, thanx to a MEGA dose of morphine)...ONE WHOLE YEAR since I battled to fit into our shower (it's a really small shower, okay)...ONE WHOLE YEAR since I had a little Smidgey kicking me in the ribs in the middle of the night...ONE WHOLE YEAR since I sometimes had to get up ten times during the night, still half asleep, to use the loo (we're down to only three times now)...Mmm, okay, guess there have been one or two positives there -just kidding, of course there's been heaps of positives like making new friends (whether it be in person or through cyber-connections) and having this whole new group of wonderful RTS angels enter our lives, who teach us every day about courage, hope, patience, love, acceptance, perseverance and, perhaps the most important, to never take anything for granted and to cherish every moment.

Seriously though, thinking back that this time last year our little elf was lying so tiny and fragile in his incubator really leaves you in awe that you have made it so far and not only made it through, but that you've made it through in one piece and can still manage a smile and hey, even a laugh most of the time.


I also can't believe how much Sammy's face has changed since he was born. Of course his "cpap nose" eventually disappearing makes, I think, alot of difference.

So, here we are with our one year old Samuel Christian de Beer (aka Smidgey/Grumpy/Jokey/Barfy Smurf, Little Elf, Little Monkey, Fievel) having just celebrated a whole year of being Sam!



Sam was quite impressed with his very first EVER birthday card which he received all the way from Pearly Beach from his Granny and Aunty Alvie & Uncle Charlie and made sure he savoured and memorised every last word of it, even the barcode on the back (he's sure to be a clever lad this one).


And after thoroughly studying his card he spent some time showing his new friends on Noah's Ark all the other wonderful things you can use birthday cards for (Sam's very into "keeping it green"). Here he's busy demonstrating how to make a.......a.......a......funnel-type-thing?

Another cool new toy that has all sorts of shapes and colours and sounds on it, although the first few days with this toy were touch-and-go as one of the little cars make the sound of a siren which instantly made Sam cry (thank goodness it seems to have passed).


Sam all of a sudden has really started enjoying his baby food (although we're still only alternating between two flavours - oats & honey and creamy carrots & (you guessed it) honey. He even gets excited now when he sees me bringing his little bowl. On Saturday morning I made him pancakes seeing as he appears to be getting over his food-phobia and, if we had to wait for him to get his first tooth I might be too old and bent-over to reach the top of the stove (as it is I barely make it) but it was a no-go, the tiny micro-crumb of pancake hadn't even touched his tongue before he started gagging and coughing. But offer him a piece of cupcake mind you and all of a sudden that hectic gagging reflex disappears. Could it be that my son has a sweet tooth? I really can't imagine where he would have inherited it from seeing as I am a very healthy eater myself (of course my fingers aren't crossed behind my back, really!)


And there you have it....undeniable proof! I wonder what butternut tastes like with honey...and potatoes with honey....and chicken with honey...and pasta with honey!

Sam is still not sitting, although he does occasionally manage a few minutes here and there, but he loves being on his feet...in fact, it's almost a sure-fire way to get him to stop moaning when he's agitated.

Sam's crown that Meg made for him a few weeks after he came home from NICU last year became a little too small (we know that at least one part of his body is growing then), so she was kind enough to make him another one for Saturday.

And yes, we are still doing neuro-therapy every week and even occasionally make it through a few exercises before the scream/vomit assault begins.



And all the hard work (the hard work being the crying and tantrums which he puts a whole lot more effort into than the actual therapy) leaves Sam absolutely exhausted and, on a rare occasion, he even passes out for at least like ten minutes.


So, what else have we been up to the past week or so - well Meg had her very first official choir Eisteddford. It was so precious, when they first started singing I became so emotional and then I noticed how the rest of the audience were reacting with delight and loads of "aaawwwhhh's" and that made me even more emotional. This whole emotional thing is really snowballing lately - you should see how I bawl my eyes out every time someone else gets voted out of Idols, regardless of whether I actually liked them or not...in fact, even adverts make me cry lately.
Anyway, then we had an unbelievable three week+ struggle with our medical aid to get them to approve Samuel's Synargis injections for the RSV season 2010 because apparently been born two months early with lung disease, being ventilated for 7 weeks after his birth and having pneumonia twice in a couple of months is just not reason to believe that he might be vulnerable to RSV/Pneumonia! Hallo - is there anybody in there? So, eventually we received authorisation for Sam to have four of the five injections during the period April - July, but get this - they only approved it halfway through May!!!! Now, taking that the injections are given at four week intervals I have yet to receive their proposal suggesting how on earth this is a solution. Stay tuned - if not to this blog, to CNN for any reports of a short, sobbing, chocolate-mouthed crazy lady assaulting the staff at *beep beep* with rotten eggs or something equally vile. Of course you'll know its not me because I don't do chocolate, being a healthy-eater and all that.
We've also had lots of backing-and-forthing in preparation for Sam's op on 3rd June to have his thumbs straightened, as well as a full glaucoma examination. Of course I am terrified...it'll be the first time Sam is having anaesthetic which is more scarey to me at this point than the looming six weeks in splints he's going to have to endure. But I am meeting with the anaesthetist on Tuesday, 1 June to go over all the necessary concerns....and unnecessary concerns as well. I think the most frightening is that it's not at our usual hospital with our usual team so I am feeling a little "out there" at the moment. But the surgeon doing the operation seems really wonderful and we've had some awesome advice from Matthew Tooke's daddy as well which has helped ease the fear a little and I am sure after meeting the anaesthetist the only worry left will be the actual operation and recovery period (and maybe if I keep telling myself that I might actually believe it).
Tomorrow Meg and I are going to an ice-skating party....or at least Meghan is the one invited, but seeing as I am going to be there I may as well go round the ice once or twice (providing they have Medics or at least an oxygen tank nearby). And we have plans to get together with another RTS sister of Sammy's, Payton (6 mnths), sometime over the weekend which is going to be AWESOME. I will definitely post pics.
In closing, we are ever so thankful that we have such amazing family and friends who really made Sam feel special on his first birthday, we are thankful that although there have been some challenging times there have also been the most amazing & blessed times as well, we are thankful that we get to begin yet another year with our little Sam. And as always, we know there are those who desperately need our prayers and tonight we are thinking especially of : Aunty Dot, Kevin, Angel, Yvonne and Marc & their families as they grieve the loss of their husband/dad, Andries ; little Jesus as he battles again with his lungs & breathing ; the Tookes and our "Little Grabber" as his journey is faced with yet another challenging condition which sees him and his family moving to Schmolland!

3 comments:

  1. Happy Birthday Sam! I LOVED being one year old...every year is more and more fun as I learned how to play and move and get into everything. I know this will be a great year for you.

    Hugs!

    Your friend,
    Natalie

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  2. hi sammy you are so looking so happy!!!!good luck with the operation.I'm sending your b day pressie with gandpa and grandma!love Janina

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  3. Happy Birthday Sammy! Little blue smurf... so cute. You have come a long way and look at how well you are progressing! Keep it up. We are all so very proud of you.
    I loved seeing all your pictures and mommy has such away with words, I'm always laughing when I read your blog!
    Can't wait to read all about your playdate with Payton. Hugs to you and mommy and thanks for keeping us in your thoughts and prayers.

    Christine and the Grabber

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