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)
Showing posts with label Superstar Smurf. Show all posts
Showing posts with label Superstar Smurf. Show all posts

Monday, September 26, 2011

You *have* to see it to believe it.....

For some time now, when Sam watches his Brainy Baby Numbers dvd, he will hold up which ever foam number they are speaking about at that moment. I have taken a video of this too, a while ago, but my near-hysterical exclamations of joy completely overpower the video so, in an attempt to preserve some element of self-respect, I decided not to post the video.

This afternoon while watching Sam carefully select his numbers I couldn't quite understand why, when he's done it correctly so many times before, he kept selecting the incorrect numbers. My first reaction was to try and correct him but it was only after the second "take" that I realised he was selecting his foam numbers, in the correct order of course, in advance before they actually appeared on the screen. My silence thereafter is a clear indication of how stunned I was.....it's a bit of a long video even though I did stop at number 5 (be sure to turn the volume up so you can hear which number is being counted on the dvd) :


To say that my little smurf blew me away today would be the understatement of the year...Brampies and I barely managed to control the tears when we began to fully comprehend the amazing blessing we'd experienced. How awesome is our God!!!!

Friday, May 20, 2011

Aaaannnndddd....a few steps forward again :)

Remember me whinging roughly about fourteen months ago about our pc crashing and losing not only most of the pics we’d taken over the last four years, but also all my emails and email addy’s due to a teeny weeny oversight on my hubby’s part? Well, if you don’t remember, I certainly do. So you can imagine my horror when, on Tuesday morning, I put on the fourteen-month-old pc we’d subsequently purchased only to see it get caught up in the same restart loop the previous one went through when it crashed! Oh my fragile heart! Meghan and I mourned the loss of our respective Sim-families we were sure we’d lose through the pc’s breakdown. On Wednesday was a national voting day here in SA, so after going and making our mark (or marks to be exact) we quickly drove by the computer place and, luckily, it turns out it was just the pc’s power supply which died. I say luckily, but it cost a pretty penny to have the power supply replaced and I am so hoping that this one manages to exist longer than fourteen months.


On the subject of voting, our little Conqueror Smurf has started becoming extremely strong-willed and often tests our boundaries with regards to who’s actually in control…and of course it’s him. At the voting station on Wed, he refused to offer up my ID document for scanning in order for me to vote, so we had to perform acrobatics to have the lady scan my ID without Sam letting go. At the shops a couple of days ago I bought him a packet of marshmallows to entertain himself with while I quickly gathered my purchases together and again he refused to release the packet of sweets for the cashier to ring up and when I eventually wrestled them out of his hand, he started screaming blue murder. He is extremely adamant about what he wants and, non-verbal or not, makes his feelings inexplicably known. We take the bad along with some good though because, even though it makes handling him in public places, in particular, pretty challenging, the fact that he so clearly expresses what he wants using only hand-gestures and singing/grunting/Sam-glish with the occasional tantrum thrown in when additional emphasis is required, is fairly encouraging…in a stressful, zany kinda way.

Other than his unique way of communicating, Sam seems to be daily acquiring new skills again, in addition to having regained his sitting ability. He is still displaying quite severe bouts of startling when I first put him down on the floor to, for instance, play…but the attraction of whatever toy is lying nearby soon overpowers his feeling threatened and we’ve had no additional bumps on the head since my last post about this. He loves…as in ADORES…books and every mealtime, at the least, is an opportunity to go through a few books and look at pictures, point items out, clearly say words, etc. Of course, these books all involve animals mostly, or children at the very least…two things which he eagerly interacts with. So for a few days I concentrated on one particular thing, ie. Pointing out the dogs’ eye in his Dog Peek-a-boo book, and every day I would try and ask him to show mommy the dog’s eyes and by last week he was able to point out the dogs’ eyes. So we remained on that newly learnt skill for a few days and then I asked him if he could point out Mommy’s eyes…which to our delight he did…and then had him point out Barney’s eyes, Daddy’s eyes, etc so that he definitely understand the concept of “eyes” now and also understands that they are something not only unique to dogs  We are now concentrating on “nose” and for the first time this morning he clearly pointed out my nose. He recognizes several items in his Baby’s First Word Book and when you ask him to, can point them out, for eg. Baby, dog, cat, cow. Sometimes he has such an amazing awareness of what is going on around him that it temporarily stuns me because firstly, he sometimes seems more “present” than what Luke and Meg were at his age and secondly, because it is just so unexpected. He has such an incredible understanding of what he is doing like when he is going to do something “naughty” like throw whatever’s lying on the bed onto the floor, he’ll choose an item, look straight into your eyes, shake his head, throw the item and then look at you and laugh that mischievous, shoulder-hugging giggle. Chris and I were sitting with him on the bed this evening, after a multi-handed struggle to dress him after his bath, which bath also ended in wailing protest, while he amused himself with throwing all of our things “overboard” and, with loving tears in our eyes said that, we could not imagine our lives without him. Even though there are so many rough and challenging moments, his remarkable little personality just kinda makes it all worthwhile. Even after that, while I tried unsuccessfully to walk him to sleep for half an hour while he physically fought me to avoid his dreaded slumber, he eventually caved in and moments before falling asleep blessed me with some “ooohhhiinggg” and “aaahhhiiingggg” and a little giggle and then promptly fell fast asleep. Well, at least I think it was aimed at me because by that time his 10.6kg body is dangling at an unimaginable angle from my arms, at great detriment to my poor back, while he strains to keep sight of the ceiling fan…so his pre-slumber serenade could well have been meant for the fan. Nope, we’re being positive right now, so conclude that it was meant for me.

On the health-front, as mentioned previously, we’ve all been battling to fight off the flu or whatever other respiratory ailment has been trying to infiltrate our systems. At this present moment, both Luke, Chris’s and Meghan’s systems have caved, particularly Meghan’s, who has spent the last two nights coughing her way through the most of it. I was convinced that Samuel was well on his way down this path as for the past couple of weeks his OSA is back in full force and effect and he seems quite severely congested at night. Chris, for far more serious reasons, had a doctor’s appointment this morning so I took Sam with and asked him to check Sam out, convinced that he was going to confirm some tonsillitis or a viral infection at the very least, but surprisingly he reported that all Sam’s usually compromised areas (lungs, throat, nose, etc) all look good. So the only conclusion we could come up with is the same reason for the last particularly severe bout of OSA, being the reflux, with the now thinner consistency milk causing excess mucous as he refluxes during the night. Sam’s reflux is still pretty severe and at least twice a day you will hear him refluxing – it makes quite a distinct, inwardly-hiccupping kinda sound…just thankfully without the v-wording for now. He also has actual hiccups countless times during the day so it appears that, although many of Sam’s RTS brothers and sisters outgrow their reflux by the age of one or two, Sam is not going to follow this trend. He has been extremely adventurous lately though with trying out differently textured foods and has, over the past couple of days, eaten some pork sausage (not pureed, obviously), toast, digestive biscuit, skinned orange, French fry/chip and some Milo cereal (although I left this soaking in the milk for quite some time to make the cereal pretty soggy).

The main reason why Sam piggy-backed on Chris’s appointment at the doctor"s was that Chris has been experiencing some pretty distressing chest pains over the past few weeks, which pains worsened to a pretty scary level yesterday afternoon when, while taking Sam for a walk, he and Meg decided to have an impromptu race. The doc had Chris do some cycling for him so that he could monitor his heart rate, etc and after noticing an unusual pattern has referred Chris to a cardiologist with whom we could only get an appointment on Monday. So we wait anxiously for Monday’s appointment and pray that whatever is causing the problem, is not too serious (although are any heart problems “not too serious”?)

Monday, May 16, 2011

Happy 2nd Birthday Sam and way....WAY....too many pics!

And when I say "way too many", I mean like in W.A.Y. too many. And I've only posted about a fraction of them.


So our little Conqueror Smurf is officially (as at 5:24pm today) Two Years old and One Day. We toyed with the idea of throwing him a proper party but thought it best to leave that until a time when he can really grasp the whole "it's my birthday" concept. So instead, celebrated with a little get-together with our extended family, which was just as lovely. And without any further ado....the pics.



 Ooohhhh...look, Mom! An envelope!

 Ooohhh...look Mom, a card!

 Okay, now as much as I love birthday cards, the rest of these goodies are starting to look so much more interesting. Here Mom, you hold this while I dig in!

 Yay, a xylophone from Aunty Cammy & Uncle Damian. Two of my favourite things wrapped up in one...banging and music, although these stick things look far more complicated than my plastic boats/cups.

Seriously Uncle D? This is what I gotta use to hit it with?

 Mmmm...okay, lets try one stick-thing and one toy guitar.

 I say phooey to the stick-thing, lets go with the guitar.


 Oh my goodness folks, I cannot tell you how many of these pics us kids had to pose for.
There were more flashes than at a fashion shoot. Well, it all started out kinda fun.....

 But could ya blame a guy for getting a little distracted?



 Chrisna, Meg and Meg!

 Our two Meg's!

 The "naughty corner"


It took longer to get this bunch to sit still than the kids!

 At long last, the moment I was waiting for!
No, not the blowing out of the candles...yes, all two of them.
Quick guys, help me get rid of this flame...

...so that Brampies/Oom Oupa can cut the cake....

...so that I can eat it!!!! Yay, delish!

This would've been a great family pic save for the teenager who was making like a bat
(and hiding in his cave)

Now you KNOW you've thrown an epic party when it's been attended by none other than Frikkie Bellville!

And what's even better than a xylophone?
Why, a floating xylophone of course!

Once Luke felt safe from the uncool, photo-taking adults he ventured out into the light for a little guitar instruction from the Birthday Boy!
(Boy, aren't teenagers loads of fun?)


And some random pics we took of our little smurf recently!

Happy Birthday Samuel!
You are such an amazing inspiration to us,
Through each illness, surgery, challenge and trial,
your spirit remains strong and passionate.
We cannot imagine a world without your giggling and uncontrollable laughter,
Without your sweet voice,
Without your love,
Without your wisdom,
Without your joy,
Without your many Sam-erisms,
Without the lessons you teach us daily,
We cannot imagine a world without YOU!

Sunday, May 8, 2011

HAPPY MOTHER'S DAY!

A very Happy Mother's Day to all our followers and fellow bloggers! A friend of mine sent a very sweet text message this morning about how a Mom is also a chauffeur, a cook, a nurse, etc. I wanted to add to that list the following : catcher of puke, poo analyser, urine gatherer, gag reflex preventer, apnoea detector, reflux inhibitor, sensory buffer...and so on and so on...but then the text seemed to lose it's charm, so sticking with the original roles for now :)

Sam has been a little under-the-weather over the past week or so. I am watching him closely, hoping to catch the slightest sign of an oncoming illness as there have been minor indications that this might be the case with a particularly stuffy nose at night and a green gooey discharge from his eyes which, although quite common to many of the RTS kiddies, is something Sam only suffers from whe n struggling with a viral infection. But, if a potential illness is at the root of his being unsettled and fussy, he is somehow managing to keep the more serious stuff at bay so I am hoping and praying that health will prevail. I still feel strongly that the thinner consistency milk is contributing to his returned OSA and snoring at night and have had to resort to basically putting him to bed on an empty stomach with his last bottle being almost three hours before he goes to sleep. This does mean though that he wakes up ravenous. One morning last week I lay listening to his tummy grumbling for almost an hour before he eventually woke up which is a little tough for me because I know he does not yet eat close to the amount of food a typical two year old would consume in a day, now to have him going to bed "hungry" on top of THAT worries me. Still, there is a definite improvement with the OSA and snoring on the evenings I stick to this rule.

Yes, so in exactly one week our little smurf will be two years old! The morning of 16th May is going to be glorious because Sam's paed told us in the beginning that the first couple of years are the most difficult and you cannot go saying something like that to an over-emotional, exhausted, borderline neurotic mom and expect her not to take it literally, can you? Of course not :) Wouldn't it be absolutely lovely to have that kind of timeline though? But we don't, so instead we celebrate the challenges and trials we've conquered so far and prepare ourselves as best we can for the challenges and trials the next two years will surely bring. Bring It On, I say...albeit with trembling knees and the most atrociously faked confidence.

Sticking with past conquests, Sam's crawling is still fascinating us...but is now also keeping us frightfully busy. He explores EVERYWHERE and gets into EVERYTHING! Almost our entire house is carpeted, with the obvious exception of the bathrooms, kitchen and a small area in front of the fireplace and of course these are Sam's favourite places to be as tiles + plastic object = joyful, delightful banging! As much as what I so looked forward to Sam reaching this much anticipated milestone, I knew that with it would come even more required attention and care. Of course, having a house that is split on three levels makes for even more stress as, even though each level is only three steps apart, three steps are certainly enough to cause a little, fairly unco-ordinated smurf to go tumbling and, even more horrifying, break something. And the fact that he is super-quick on those little hands and knees doesn't help either. Thankfully, for whatever reason, he has not yet attempted to crawl head first down any of the steps and, quite surprisingly, will stop at the edge, contemplate it for a while and then turn around. This is so weird because he has on several occasions tried to simply crawl straight over the edge of the bed and displays absolutely no fear at the distance between the bed and the floor. So his newly acquired mobility means even less "free" time for me to take care of the usual daily tasks but does create more stimulating explorations for Sam around the house.


 I leave a number of Sam's toys on the floor for easy access but this, of course, means our home looks like a mini-train wreck for the major part of each day.

 It's not too clear in this picture, but Sam has started making blowing motions with his mouth. Just in time to blow out his candles next Sunday...nah, probably not! But still kinda cute.

 He is also spending a fair amount of time on his knees which, although in this picture he is holding on to the bed, when he manages it without support is great for developing balance for walking later. At this point his overall balance is still quite poor and he topples over quite easily.

 One of the first things he always does when on the floor in the lounge is goes for the box of Jenga blocks on the shelf, he then promptly knocks them onto the floor but then ever so sweetly tries to put them back on the shelf. With Sam's initial oral aversion he would not take a dummy or teething ring and the Jenga blocks, which are made of a fairly soft wood, have proved to be a satisfactory substitute as he almost always has one in his mouth. The softness of the wood seems to provide just the right amount of sensory resistance for him, without hurting him but this does mean that the entire box of blocks, apart from being hopelessly incomplete now and distributed throughout the entire house, is also covered in tiny elf-like tooth indentations.

 Some more knee time.

 And is this not one of the areas in the home a tiny smurf should most be avoiding? Well, Sam is not interested in the "shoulda's" obviously and spends most of his time banging on the tiles or the grate of the fireplace. So guess whose going to have a cold home this Winter?

 Some pics of Meg's new "baby", BiBi! Sam has of course christened BiBi with at least two or three good helpings of hair pulling. Thankfully BiBi has become extremly wary of Sam which makes for some adorable entertainment watching Sam chasing her on hands and knees.

 BiBi took an instant liking to Sam's high chair and, in an attempt to keep her off it, Meghan tried to get her used to her own doll's high chair. It distracts Bibi for a short time, but it isn't long before you find her curled up on the seat of Sam's high chair.

As I mentioned previously, my mom spent the last twelve days with us before heading home to Pearly Beach. For Mother's Day I bought her a lovely little photo frame which says "I love Granny" on it, but couldn't find anyplace that could print a photo on time for me to actually make it part of her gift. (Obviously it's a fairly popular idea?) Anyway, this is the picture that was meant to have gone into the frame. It took close to 30 shots to get all three of these rascals smiling at the same time, especially with Sam sneakily turning round at random intervals to make a grab at Meg's hair. Sam's hair pulling and, especially, biting has become quite a challenge to deal with...but that's a post for another time :)

Wednesday, April 20, 2011

A Swinging Easter

I know it's only been a few days, but I am almost certain that in six month's time I will still not be 100% used to seeing our little smurf crawling around and, even more exciting, exploring. The fact that he's crawling is pretty amazing on its own but add to it his overcoming his fears and sensitivities to his surrounding is pretty darn close to unbelievable, especially looking back at where he was a month ago. Yay for OT! Prone to beating myself with the relentless why-didn't-I/we stick eg. why didn't we do OT sooner, why did I stop the Nestargel, why did I re-start the Nestargel....ya da ya da ya da...comes one of my most crushing why-didn't-I/we's.....

Why didn't we put a swing up in the house earlier? And this is why.....





Sam is loving it and although having it in the middle of the lounge/living area is not the greatest idea, decoratively speaking, it means we can do several things while keeping him entertained and being close to the tv for Barney time isn't a bad idea either.

With all the exciting new things happening in Sam's and, therefore, our lives it would be quite easy to lose sight of what time of the year it is....mmmmmm..well with the exception of the thousands of Easter eggs which have been displayed in every shop since 26th December, that is. In keeping within our spirit from last year, we gave the kids their Easter eggs on Sunday already as, although we don't want them to have to feel "left out" when all their friends are drowning in chocolate bunnies, we don't want them to lose focus on what Easter is about and come Good Friday and Easter Sunday have them more excited about the anticipated sugar rush than the spiritual meaning of this period.

At this point a very quick side-step is required to say this : "Hi, I am Nicky and I am a chocaholic! I have been a chocaholic, probably, since the first day I was born (thanks Dad) and my addiction intensifies with age, as my family will testify." The only time I have even mildly considered cutting down on chocolate was when I was expressing breastmilk for Sam and even then had to resort to two blocks of dark chocolate as opposed to going cold turkey. The day Sam went on to AR formula I think I polished off a whole slab of chocolate and could probably count on one hand the number of days I have gone without chocolate since then. In my defense, I have to blame my Dad who is as addicited to chocolate as what I am.

Okay, you will understand the significance of this side-step soon.

At our Sunday service our minister urged us to carefully consider our lifestyles over the coming week, at least, in order to even just try and comprehend the emotional turmoil Jesus was enduring in the week leading up to his being betrayed. Now as kids growing up in the Catholic Church and having to give up something for Lent we almost always chose something we weren't that fond of anyway (I remember giving up liquorice one year but honestly don't think I'd eaten it even once in the year leading up to Lent). So Meg and I chatted about what we would like to offer up and although things like homework and vegetables came up, eventually agreed on chocolate. Yip, after just receiving this enticing collection :



Of course it doesn't help that at, what seems like, half hour intervals my dad keeps offering us chocolate (he's offered me a block while I sit typing this, can you believe it?) and kept telling Meghan last night "Just take a piece!". She has stayed strong thought but keeps insisting that the bunnys' eyes are watching her! It has been kinda fun spurring each other on, think next year we'll try the full 40 days even though we no longer belong to the Catholic church.

More seriously, we are focusing on the Bible story surrounding Easter from Meg's Bible The Children's BIBLE Story Book (Retold by Anne de Graff & beautifully illustrated by Jose Perez Montero) and in keeping with the spirit of what our minister spoke to us about on Sunday, here is an excerpt :

"Jesus was asking the Father to protect all His followers for all time. He was praying for people like you and me. When He had finished, He led them into the garden.

There, He took Peter, James and John. They went off alone together. Jesus was very upset. He said, "My soul is torn up inside, to the point of death. Stay here and keep watch." He was going to talk to His Father. Then He said, "Pray that you won't be weak tonight." Jesus went off by himself to pray.

A short distance away from the disciples He fell onto the ground. "Oh, Father!" Jesus cried out, "If it's possible, don't let Me go through this pain. My Father, isn't there any other way, must I go through this?" Jesus knew God wasn't making Him do anything. Jesus had to chose to obey. That way God could work miracles. He could offer all people for all times a chance to start again and be clean with God.

Jesus looked up at the stars. He said, "Father, I am willing to do what You want."

Jesus in the garden called Gethsemane on the Mount of Olives

Sunday, April 17, 2011

He just couldn't wait, could he?




Who couldn't wait?

Why, Sam of course!

Couldn't wait to do what?

Well, this........






And this....




Being rewarded with some love from Aunty Minnie Mouse and Uncle Damien.
Aaahh...I mean, Aunty Cammy!

Sam is officially O.F.F.I.C.I.A.L.L.Y crawling! It seems almost unreal - wow! I posted last week that, after his little exploratory crawl last Tuesday, I thought he might be crawling properly by his 2nd birthday in a month's time...but even though I said it, it was more of a wistful fantasy than something which could really become a reality. So we are sooooo incredibly proud of this little boy, still managing to haul in some milestones while struggling with his SID. WELL DONE SAMMY!

Sam also now has a lovely swing hanging from our ceiling. Our house, especially the living areas, is starting to look more and more like one massive daycare centre as opposed to a lounge/sitting room, etc. We've even toyed with the idea of just going the whole hog and removing all "big person" furniture and just Sammy-fying the place :) but then again, it could be the lack of sleep talking!!!