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)

Thursday, August 19, 2010

DELICIOUS GENES

I didn't think it would ever happen, at least not within the next ten years...or twenty, but it really does seem like Sam is getting used to his neurotherapy. We have had at least two, could possibly be three already, sessions which did not leave Cathy and whoever else happened to be at the practice at that time, being washed out the front door in a flood of vomit, tears and (sorry for the graphics) snot! Although most of the praise goes to Sam of course, I do have to mention that the common factor in these last sessions is Meghan though who runs around like a mad thing shaking rattles, singing "Wheels on the Bus" and whatever else she can do to distract him. Sometimes it's almost as if he is enjoying it all (well, who wouldn't enjoy a show like that) and then all of a sudden he remembers "Hey, what am I doing man. This is work, remember, not fun......" and then it looks like we're headed for disaster. It's so funny, but Sam sort of has this type of "silent" cry stage when it's like he knows he SHOULD be crying but he really doesn't feel like it....so the lip goes, the little eyes get squeezed shut...then the mouth opens wide and.....NOTHING! And then he takes a breathe and WWWWAAAIIIILLLL...the little siren is eventually jumpstarted. He is such a character, my little smurf.

But back to NT - so Sam is still not sitting, although we are really caught between trying to figure out if it could be as a result of the tethered cord or simply just Sam being Sam, because yesteday Luke and I had him on the bed and got him to sit for a good three or four minutes (while we were entertainting him with WOTB of course) and he didn't look too uncomfortable in the sitting position, which he sometimes does. But, lucky for us, they have these wonderful things called MRI's which means we don't have to rely on our own guesswork after all, so we should know within the next couple of days when Sam's has been rescheduled for. Sitting aside, however, Sam has been doing quite well with his "crawling", seeing as we really only started focusing on it last week. He can spend up to seven or eight minutes on his hands and knees and although he can't yet co-ordinate the moving of his hands and knees without collapsing, he has started rocking back and forth. So this is like SUPER exciting for us, because although Sam's "alertness" does seem to progress, although slowly, there's basically been no change in his achieving those more physical milestones. It's really quite mindboggling because if you hold two of the animals from his Noah's Ark toy in front of him, one being the horse (which is the only one he knows so far) and say to him "Where's the horsey?" he reaches for the horse or when you ask him "Where's the kitty?" he immediately looks to the floor to look for her. When you say to him "High Five, Sammy" he'll lift his left hand, but yet he can't hold his bottle or sit, etc. it's just so incredibly fascinating. Sam's babbling has also increased much to our delight and now that there's a tooth at the top of his mouth as well, each "word" is sort of bitten off with a Sam-version of a tooth grind, if not completely uttered through his teeth nashing....even when I wash his face, he catches the washcloth in between those little teeth and we have a playful little tug-of-war.

Here's a pic of Sam and Cathy practising his crawling, with Meghan doing what she can to keep him focused (although in this pic it actually looks like she's taking a bit of a nap).


I think one of the fairly disheartening areas of having a child with special needs is that, to a varied extent, they inherit more of the syndrome's characteristics than their mom's and dad's. Don't we all love pointing out which of our most endearing traits our children have inherited (while, under hushed tones, blaming the less appealing traits on our spouse). Well it seems that the gene responsible for the incredible "love" (I was tempted to say "addiction" but not sure if I could speak on behalf of Chris) Chris and I both have for food was just too much for Sam's particular Chromosome 16 to stand firm against because he most definitely has inherited this. You can absolutely NOT eat anything in front of him and that tiny little elf mouth starts eating imaginary whatever it is you are eating. And, sensory integration issues or not, he has no sensory problems with food. And I ABSOLUTELY ADORE IT! I will never take for granted the absolute joy you experience at being able to treat your little one to a chippie, a cookie, a marshmallow, a piece of orange, some biltong and even, believe it or not, some spinach and feta pie. Fair enough, he only takes tiny little bites and chews that tiny morsel so so thoroughly, but just knowing how so many of these precious little RTS angels battle with eating problems makes this seeminly insignifant ability just such a relief and really quite joyful. I do have to be careful though because Sam most definitely favours sweet things and, although he is nowhere near being overweight or even average weight at just 7.2kg's, I do not want to permanently influence his food preferences and, ultimately, put him at risk of obesity when he gets older.

I have to say that I am really quite proud of Meghan and Luke, they are both really wonderful with Sam and are always eager to play with him, even though (especially for Meghan) it usually means at least one fairly OUCH-moment when he manages to grab a handful of her hair. He still has this really testing habit of hair-pulling and he definitely knows what he's doing because he gets so excited, even his voice changes pitch. It's bad enough when you're sitting down and he grabs your hair, but on three occasions (and both in the shops on top of it) he's managed to stick out that little hand at just the right moment and grab Meghan's hair while she's walking in front of us, which means DOUBLE OUCH for Meg.



But, moving along onto a far more worrying topic......HAS ANYONE SEEN OUR MISSING WINTER! Seriously, I am NOT a Winter person or, rather, I wasn't until last Summer when we battled so with Sam's sensory issues which were heightened by the warmer temperatures and brighter daylight, etc. and I just couldn't wait for Winter so I could wrap him up when he slept, etc. Well it would be generous to say that we've had two weeks of proper Wintery days. It's totally absurd, especially considering we're less than two weeks away from Spring. I don't even think I've worn a quarter of my Winter clothes (and this time it's not just because I can't fit into them anymore) and haven't once yet put a jacket on.
But of course, the kids are loving it and even Luke got into the mood by helping out with some gardening. Oh No, hang on...that's not right - it's all coming back to me now. He's had his privileges taken away again for one of his usual offences and was trying to work off some of his "time". Phew, got myself worried there for a second when looking at this picture. Although Meg and Luke spent more time discussing what needed to be done, than actually doing it...with Max supervising the lot of course. Chris' and Luke's bright yellow shirts provided some lovely entertainment when a group of "bug-type-thingies" mistook them for two giant yellow flowers and started attacking them.

2 comments:

  1. Your winter went the same place our summer went! Let me know when you find it! I'm so glad he's doing well...and getting the therapy down. It will help him so much and he has so much of it ahead of him, it's great that he's finally "enjoying" it...maybe that's too strong of a word..."tolerating" it? Go Sam!

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  2. Oh it all sounds so exciting especially the crawling bit well done to you and Meghan for such a great job. The funny thing about special needs children is that we sometimes forget that they are a lot more than their syndrome and more often its just their personality coming through. This seems to be the case with Sam he has such a delightful little character and is only exercising his own will.....I just love that about this little ones. Great that you now have to assistant gardeners even if they only discuss what needs to be done a great bit of family time and the garden is the best place. Hope Sam joins in sometimes soon with Summer on the way. I wish Sam could see the 6 little Egyptian geese that hatched in my garden 3 days ago with his love for animals it would keep him amused for ages. Lots of love to you all and well done on all your many achievements with Sam's development you are doing it just right. God bless

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