SAM...MORE THAN A CONQUEROR: That darn "Spoke too soon" phenomenon!

Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror

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, March 24, 2011

That darn "Spoke too soon" phenomenon!

If I had a cent for every time I've heard the phrase "I spoke to soon" over the past few months, I'd be one rich lady! Don't the STSG ("Spoke Too Soon Gremlin) and Murphy EVA go on vacation?? It was barely a week since I last posted about Sam being on the mend and here he is, all snotty-nosed, sleep deprived and grumpy again. For now it appears as though it could just be a simple cold but, as all our RTS momma's out there know by now, the words "simple cold" and RTS rarely make it into the same sentence. We are however going to stay positive for now and pray Sam manages to keep anything more serious at bay.

The past week has whooshed by at such a speed, I can hardly believe it's almost weekend already - probably due to Monday's public holiday. The first school term is also coming to an end next Friday, how is it possible we're already ¼ way through the year? Meg has thankfully completed all her tasks/tests for the term, while Luke has only just begun with his exams and has five more to go.

So, what has been happening in our Smurf's life during the past week? The weekend, as always, was pretty low-key and uneventful...on Saturday night we rented a DVD for the kids (can't for the life of me now remember which DVD), Sunday morning Smurf and I ventured out to church with the rest of the family as (quick, someone cover STSG's and Murph's ears) we've had a few vomit-free days. Thankfully I was able to hear a decent amount of the sermon as, even though Sam became restless before the service had barely begun, the nursery has now been rigged with speakers so moms can now listen to the service from there without having to stress too much about a fidgety/fussy babe. Unfortunately, with Sam's fragile immune system, this isn't always going to be an option for us but great to know it's available when he's strong and healthy.

And, still on the subject of being positive, Chris and I and the kids did something really quite entertaining on Sunday afternoon. There was a book/dvd which, a few years ago, became quite the fad called The Secret which I am sure most of you have either heard about or watched/read yourself. Now I don't remember too much about it other than it being a pretty controversial topic about which I still remain sceptical about, but I do remember someone telling a story about how he wrote out a cheque for R1 million (or whatever the amount was) as part of his positive thinking/law of attraction concept. So, in keeping within the spirit of this concept....we went househunting on Sunday afternoon in lieu of the extremely large sum of money we intend attracting into our lives by means of positive thinking! As yet, the large sum of money has not yet appeared....maybe we're supposed to specifically pinpoint a time/date when our particular "wish" is meant to materialise? No, we have not finally lost our minds but we really did do the show house thing just for the fun of "Imagine if........!" I am not sure Meg got the whole "just for fun" concept though as she was already arguing about which room was going to be hers.

Monday morning dawned quite misty and overcast but, as we'd promised the girls we'd take them to the beach, we again packed towels, beach toys and, this time, warm tops and headed off for Blouberg. The only benefit of the cool weather was that we could leave a little later than the last time as the hot sun would be less of a hindrance. However, the disadvantage was that we were then gone during Sam's normal nap time which might have been the reason he was rather grumpy when we first arrived and took some time to "settle" again.

Table Mountain was hardly visible this time!

Believe it or not, beneath those mops of hair are two actual little girls :-D

Sam was at first not at all keen to put his feet in neither dry or wet sand, but eventually relaxed a little.

Sam "mouthing" Chris' shoulder...as he does with practically anything and everything nowadays.

As the morning brightened a little, so did Sam's mood although he definitely didn't enjoy himself as much as the last time.

Sam was not too adventurous with touching the sand and preferred Chris doing the "playing" on his behalf.

Chilling with Dad, Christopher Robin and Pooh and the gang!

Meghan and Chrisna contemplating the cramp-inducing water....

...but still going ahead and wading in anyway, while Chris had to brave the same cramp-inducing water to get the shot.

Would you believe they even asked if they could SIT in the water after "accidentally" getting wet!

Of course we said no, although the thirty-odd other folk actually out on surf boards, etc didn't help our argument. Crazy people!!!!

Sam in mid-conversation. I absolutely HAVE to post a video of him "talking"...it requires such an immense amout of effort and concentration on his part, you really have to see it to believe it. And that little RTS mark on his forehead acts like the "ON AIR" sign you usually see at radio stations because it glows bright red whenever he's speaking.

Sam in one of the, now, few positions he finds threatening.

It's been a challenging couple of weeks because of Sam's health but, for me, watching how Sam's development is being completely devastated by his sensory problems has been by far the most saddening and trying. It took us soooooo incredibly long to get him to sit...eighteen months, tethered spinal cord and all, and now we can't sit him down like we used to on the floor to play because it frightens him too much even if we surround him with pillows, etc. When I used to wait at the school for Meg I used to take him out of his carseat and sit him in the front with me so that he could play or sit and read a book with me while we waited but it's just become an impossible task as the moment I bend down to sit in the car he becomes frantic, grabbing at whichever part of me he can hold onto (my car's interior is predominantly black and dark colours are an absolute no-no with him at the moment) and I can't move either hand to page through a book or grab a toy for him. Sam's PT even suggested to me yesterday that we stop PT until Sam's sensory disorder has been addressed as she can do very little with him at the moment.

And here comes the good news....after weeks of trying to find the "right" OT, we have an appointment next Wednesday with a lady who comes very highly recommended. I am so excited at the mere thought of there being a light at the end of Sam's sensory tunnel....not too bright a light mind you as that would just cause more trouble but bright enough for us to overcome the darkness of the tunnel :) Trying to "fix" something without the advantage of a surgery or medication is just a whole different kind of challenge, but something we best get used to, I guess.

Sam has unfortunately not recovered all of the weight he lost while he was sick and is currently sitting on 9.5kg's but has been eating quite well again and is back to his "normal" amount of milk now. His hair is looking completely unruly again but the sound of our hair clipper completely freaks him out so we are contemplating taking him for his first ever hairdresser cut. Mmmm...not sure about this one, unless I can ask them to close the whole place down while we're busy with Sam's hair in case of hysteria-induced vomitting :) Much to Brampies horror, I tied his hair in a ponytail the other evening (Sam's hair, not Brampies...that really WOULD be a challenge..hee hee) but although it did look kinda cute it's definitely not a workable solution so it looks like we'll be making a hair appointment soon. Hope the guy can work under pressure because of course I'll be taking photo's.

I can't remember if I've ever mentioned Sam's incessant knocking/tapping obsession - which wouldn't be a problem except that he does not do the knocking himself but kindly instructs us to do it. People must seriously think we are all a bunch of looney's because whenever he gets fussy, be it in a shop, at a restaurant, doctor's waiting room - you name it, all we have to do to calm him down is to either tap/knock on whatever surface is availabe be it a cashier's counter, shop window, mannequin (yes, really - ala Chris). And, being the oh so persuasive little Smurf that he is, Sam now even has Meghan trained well enough to know when she is required to knock for him. So, it would be fair to say that by the end of each day, there are a serious number of sore knuckles in this house desperately wishing Sam would learn to carry out his OCD practices himself...

...and what do you know! Finally, SOME progress...okay, granted, not the kind of progress one would normally celebrate but progress nevertheless. Don't for a minute think that he finds this a good enough reason to let any of us off the hook though, Meg still had to knock on the roof of the car all the way to school this morning, much to the befuddlement of our surrounding fellow-travellers.

And, last but not least, a great big shout out to Sam's cousin, Amy, on her 20th birthday today!!!