Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVED US"


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 Samuel was additionally diagnosed with Epilepsy and there seemed to be yet another condition at play as Sam's development fell more and more behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain MRI which confirmed another condition - Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy as a result of an Hypoxic Ischemic brain injury suffered shortly before/during birth).

This blog serves many purposes...a journal with which to record memorable moments, to vent, to encourage, to enlighten, to celebrate and to provide an extremely real and honest insight into loving and caring for a child with special needs.
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)

Saturday, February 1, 2020

Beware of the Afternoon Nap!


Can you tell someone's happy to be home?

The 'welcome home' surprises did have a little part to play in that initially, but Sam didn't need much more motivation as he busied himself with restoring the house to its usual state of trainwreck as he got down to the business of playing (and I wouldn't change the absolute joy of THAT for anything, especially after he has spent the better part of the last 7 days hunched over in pain). That tambourine is no random gift either. Sam loves the 'flying tambourine' game during music therapy, so much so that he has been trying to mimic it at home with his teeny tiny toy tambourine (although it is nowhere near as entertaining without Karyn Stuart-RΓΆhm 's accompanying charm).

Thankful to have the lil flappy dude feeling better, although the afternoon naps hint at him not being 100% himself yet (I'll take the 99% with a thank you very much though πŸ™πŸ»πŸ’œ) 


#samtheconqueror #rtswarrior #cpwarrior #rubinsteintaybisyndrome #cerebralpalsy #musictherapy

Thursday, January 30, 2020

You can't always trust your gut!


This boy's gut has made for a few really crappy weeks...pardon the pun 😁 Three hospital admissions, coupla kg's down from not being able to eat and keeping everyone on their toes with going from one extreme to the next without any obvious reasons popping up on bloods or the very invasive procedures we resorted to last Thursday. 




 Sam has been pretty much floored by the Salmonella infection which saw him landing up in hospital on the 27th January...just days after having a number of procedures on the 23rd (which procedures still make me cringe at the thought of them) with a suspicion that the infection was picked up in theatre as Sam has not eaten in weeks. 

From Sam's point of view though, the most traumatic part of it all so far has been me trying to remove the plaster from his epidural site... that little bit of plaster lifted up on the left side of the pic - that took like half an hour πŸ˜… The boy's got a healthy covering of hair I tell ya! πŸ™ˆ



At least we managed some #souletherapy between admissions with a walk on the promenade on Saturday, even though we couldn't sway Sam's ghosted appetite with the usual Nutella pancake πŸ€ͺ🍫 When afternoon naps are the order of the day, you know the flappy dude's not himself 😴
#samtheconqueror #rtswarrior #cpwarrior #rubinsteintaybisyndrome #cerebralpalsy #souletherapy





Wednesday, January 22, 2020

Special Needs Parenting : a "NO FREE-WHEELING" Zone


As I have watched the beautiful first-day-of-school photos flooding my newsfeed of my South African FB friends, I have been reminded again of how quickly and significantly our goals and priorities can change. Eighteen months ago having Sam in school was quite high on my list of priorities, one year ago having Sam (relatively) happy and able to thrive emotionally and developmentally in whichever environment necessary became quite high on my list of priorities and saw us returning to homeschooling. This year, right now, having Sam just make it through one day of eating (and, well, pooping) as per his normal would be pretty awesome. Now wouldn't that make an entertaining 'first day' photo???

"The exhaustion of special needs parents" How many times a day I see articles like this whizzing by on my newsfeed. Whizzing because a) my FB is often being glanced at from the side as Sam scrolls to find pictures and videos of friends' kiddos, strangers' kiddos...any kids really and b) because I don't need an article to remind me or my rather small circle that I am exhausted...my (average) eight-hour reply time on messages, repeated "I'd love to, but....." RSVP's on invitations involving anything close to me-time or puffy, saggy, heavily make-upped eyes are evidence enough!! No bashing from my side intended for the special needs parents sharing those posts πŸ’œ Sometimes you're too exhausted to put your emotions into words yourself, so being able to simply share someone else's beautifully penned emotions so similar to your own, is a blessing. I just occasionally feel even more exhausted after reading these articles because a) I'm now feeling saddened and a little helpless about the writer's (and all those who have shared the posts) struggles and b) there will undoubtedly be something in there that I have forgotten to be anxious about!! Oh and, no, my eight-hour reply time on messages is not referring to the night time spent asleep...because then I'd be replying within an hour or two. πŸ˜…

The thing is that over and above the physical exhaustion, the emotional exhaustion and the just being exhausted to your very core (And that feels like an actual thing, not just something you say for dramatic effect. It's like the place that keeps your body functioning when your brain keeps sending messages that your neck and back can't take anymore lifting and carrying of your 40kg flappy extension, the place from which your emotions continue to flow so that, even though you have been exposed to the most unimaginable fears and disappointments, you continue to FEEL and don't become desensitized...and the place from which your spirit's butt gets kicked everytime it threatens to start shedding the essence of who you are. Well, at least that's what my core feels like πŸ€·πŸ˜…) Anyway, where were we...the thing that makes this exhaustion next level is that there is no defined end sight to keep focused on and because sometimes the end sight on its own is cause for anxiety. There is just no free-wheeling on this path. No stretch of road where you can just loosen your grip for a moment and take a second to breathe because in the blink of a heavily make-upped eye you can find yourself needing to navigate over an unexpected bump or swerve to avoid being slammed to the ground when you hit an even more unexpected pothole!

So you're constantly redefining goals and your ways of achieving them and this is not only your goals for next year or next month but sometimes for next week or even the next day! The only thing that keeps you from being completely overwhelmed is that, despite never enjoying that free-wheel zone, you've mastered the art of stealing a glimpse of the beautiful scenery with one eye while keeping the other on the lookout for that bump and being eager to celebrate each successfully avoided pothole as excitedly (and thankfully) as the first one.

While making the decision to change our longterm goal and revert back to homeschooling was a tough one, the change has brought with it many MANY glimpses of beautiful scenery...one of these being able to put Sam back into his intervention therapies fulltime which in turn has (with the support and guidance of a truly amazing team of ladies) uncovered some pretty awesome (and unexpected) aspects of Sam's development, worthy of a whole new post of its own! And our short term goal starts with some scopes and biopsies tomorrow to determine why the previously, always-starving kid has not been able to eat for the last six weeks. I won't lie, having 4kg's less of anxious flappiness to maneuver into the car has not been all bad, but watching Sam asking for his favourite foods and then just not being able to eat for any obvious reason has been pretty distressing, especially when you can hear his tummy grumbling. Thank goodness for Pediasure πŸ™ His whole GI tract in general seems to be unsettled, although x-rays and scans have confirmed that there has been no anatomical changes 🀷 On the beautiful scenery side, Sam's six week fast should make this the easiest nil per mouth wait ever (?) from 8pm this evening until 2pm tomorrow πŸ’ͺI Ishall be sure to flood my newsfeed with our own first-day-back-to-eating pics!

Oh...on another beautiful scenery side...I have discovered that black and white photos are great for camouflaging heavily make-upped eyes!



Wednesday, November 20, 2019

In Loving Memory of Chrisna

I have started this post so very many times over the last 5 months. And then restarted it. And restarted it again. But, even though words have always seemed to find me quite easily...well, the written ones at least (and usually at bizarre hours like 02:00 in the morning), my words have failed me miserably lately as I try to find ones which could possibly do justice to this post. How does one recap the many moments...the joys, celebrations, challenges, fears, victories, despair, hope... which have filled our lives over the last (almost) two years? Well, you have to start somewhere...and starting with the life-shattering heartache which has made this blog so vitally important again, would be a good place to start.

Writing has always been an essential part of my processing of, well, everything. Since I can remember, I have always kept journals (often to my detriment as the essential need to protect my journals was seldom as important to me as the essential need to write them πŸ™ˆ). More than just a way to record memories (which memories were in any case often rendered indecipherable, depending on the mood which had determined my handwriting), writing helped me streamline the whirlwind of thoughts and emotions constantly bombarding my mind. And then the digital era arrived. Yay for actually being able to understand the outcome of the processing I had needed to work through said emotional whirlwind bombardment! And although it was, sadly, nowhere near as therapeutic as huffing through a bunch of pages with a grip that left your words indented 30 pages down or as rewarding as the whimsical twists at the end of a "j" or "y" which left a sweet recording that much warmer and fuzzier, it was so much quicker (and clearer) to transfer your thoughts across a keyboard/screen. Well, after you had found the time to put the laptop on, wait for it to start up, sign into the blog, read through your previous post/s to make sure you weren't repeating yourself (as someone who has to occasionally check her calorie counter to remind herself what she had for breakfast so that she doesn't have the same for lunch, this was an important part of the process) and then, finally, start typing. See. Much quicker (?) And then along came Facebook and Insta and it was even quicker and more convenient to share a moment. Sure, you have to 'crop' some of those thoughts a little, like the unnecessary/unwanted parts of a photo. But who wants to read such lengthy Facebook posts anyway right? Plus there are filters people! Oh, the filters! Well, you know who would want to read all those lengthy posts of the last 22 months now? Me.

Our blended family came together in 2007 with no fewer challenges than anyone else's as we navigated each of our individual personalities through a maze of discoveries as we sought the common ground upon which we would rest the foundation of our unique family dynamic. In fact, adding a Lil Smurfy Dude into that blend just 22 months later, we probably had a few more challenges than many blended families. (Did you notice that "22" again? Yeah, me too. Now, if I still had a writing journal, I would have quickly scribbled 10 pages about the possible reasons and potential purposes that the number 22 might have had. Then I would have scribbled a few more pages about the significance of it taking "10" pages to write about the "22", so now there'd be an additional element to factor in. Aaaaaaaaand, now you know why my handwritten journal became too time-consuming).

On 17 June 2019 we lost a beautiful, cherished part of our blended family when Sam's sister, Chrisna, tragically passed away in a car accident, just a month before her crown birthday on 17 July. Desperate to hold on to memories and moments with her, we have spent many hours looking through old photos, revisiting her social media pages just to hear her voice in the occasional shared video, savouring every forgotten/overlooked picture newly discovered. There never seems to be quite enough to so completely saturate your mind that you miss her just a little less. Then I remembered my journals and spent many days reading through them, hoping for forgotten memories. But, as I stopped writing in them many many years ago, having (then) moved over to this blog which, as a public platform, made me cautious about what I shared, it has been pretty devastating to realise that, other than an occasional, briefly-captioned picture on social media, no longer do I have a place to go where emotions and sentiments can be revisited in a way which words alone have the power to indulge...words which would have recorded what a beautiful, caring, inspiring young woman Chrisna had blossomed into. How I looked forward to her time with us, how I loved our catch-ups about her friends and romantic interests, how entertaining it was to walk through local shopping malls with her when literally (and this is no exaggeration) every 3-4 minutes she was greeted (usually with hugs) by peers from her school, her church, her social circles, her many sport activities and often even rival sport teams as people went out of their way to connect with her, how amusing it was to walk along the promenade and notice how many (unnoticed) admiring glances she got or how an after-dinner stroll through the neighborhood on Christmas eve last year found us acquiring the company of an unbeknown to us young man who strategically made small talk with our whole family and then subtly gravitated towards the centre of his actual attention, Chrisna. Nowhere have we recorded how exciting it was to listen to her carefully-considered plans for her future, from how she planned on booking her learner's licence test on the day she turned 17 to the Degree she planned on studying for and her hopes and ambitions for where life would take her once she'd achieved it. And she feared no barriers or limitations, so achieve it she would have. Words which would have shared how grateful we are to have witnessed and been blessed by the grace with which she embraced everyone and how the knowledge that that grace brought with it a comfort in the knowledge that it would help guide her and her step-siblings towards a care plan for Sam should I, in fact, NOT live to my planned ripe old age of 105.

Those are cherished moments and sentiments which we can never get back, but which didn't all make it onto Facebook or Instagram. So I am leaving them here. Where I can find them always. And as a reminder that the abundance of unspoken words which we too often fail to share because we are too tired/afraid/proud/self-conscious/cautious may never have the opportunity to find their power.

❤️ How we miss her ❤️

A minute's worth of life...a trivial thought for some.
What difference would one minute make when your time with us is done!
But if that minute could share an overflow of the words within our hearts,
We'd be careful not to waste a second and would know just where to start.
Just one minute to say we love you, more than you'll ever know.
A love that's filled with admiration for the grace with which you'd glow.
A minute to say you amazed us with the woman you became,
With the adoration and respect with which so many voiced your name.
A minute to tell you proudly of the countless lives that you have touched,
A truth your humble heart would quickly dismiss as not that much.
A minute to say we miss you, more and more with each new day.
A yearning freshly fuelled with each forgotten photo that comes our way.
A minute to listen closely as you'd tell us not to fret,
Your unwavering zest for life just one more thing we can't forget.

A minute for one last chance to hug you tight and know you're near.
To have you sing just one more time
"Cause I don't care when I'm with my baby, all the bad things disappear"
A minute to share a promise that your life will remain our inspiration,
And that we will use each minute that we DO have with love-filled purpose and intention.









Saturday, January 6, 2018

Conquering ain't for the fainthearted....

...which is why I leave that up to Sam while I stumble clumsily along wondering which year it is! 2018??? I'm still easing myself into 2017!

"Stumbling" could well describe the manner through which we've approached the past few months...if stumbling could be an appropriate way to get through a four-month-long-relentless-battle-with-ear-problems-with-an-ear-polyp-for-extra-pizzazz-and-a-touch-of-precocious-puberty-sprinkled-with-funky-mouth-issues kind of phase?

Let's go alphabetically (hopefully my literacy skills do not fail me as atrociously as my numerical skills) :

Ears - Sam developed a rather nasty ear infection (in his 'good' ear, sadly) in August. The subsequent treatment thereof was not terribly effective and, three months later, resulted in a polyp and a still lingering infection. Said polyp had to be removed urgently right then and there in an ENT's room (without any sedation or even pain meds) as we only found out about the polyp at that time and leaving it untreated for an additional couple of days (it was a Friday) in order to arrange a theatre date, was not an option. Sam was extremely traumatised by the procedure :(

Funky Mouth Issues - Sam has significant dental overcrowding on his right side and as a result, has an adult tooth which has been trying to drop down for about six or seven months but is being blocked by three other teeth. There seems to be no consensus between the medical role players involved on how to deal with this and so Sam now has an adult tooth which is wanting to bulge randomly through the side of his gum and is causing him immense discomfort :(

Precocious Puberty - after Sam sprouted some rather adult looking hair earlier this year, an MRI revealed that Sam's M.I.A. little testis, which we thought had given up its ghost, is quite snuggly tucked away in the inguinal canal and happily testis-ing away. The immediate concern was that of the high risk of tumours with undescended testes, which would explain why Sam's body was in puberty a year or five too soon! Earlier this year??? #eyeroll Earlier last year! The MRI was revisited and it was concluded that (thankfully) this little testis is tumour-free!With there being several possible causes behind Sam having "testosterone levels of an adult male" (as described by the endocrinologist), the next step was to confirm that Sam is indeed in puberty and then to pinpoint the reason. A bone age test confirmed the Precocious Puberty and it was concluded that it is likely a complication of the type of Cerebral Palsy Sam has. So what now? While (for several reasons) it would be preferable to have our M.I.A. testis safely relocated to Casa del Scrotum, the fact that it is sitting extremely high up in the canal and would need to bypass a significant amount of scar tissue (from the previous surgery) poses a great risk of arriving home damaged! With me having already demanded that the other testis be ousted several years ago #me.winning.always. any damage to our last survivor would not be great. So we shall leave him be for now and do aggressive monitoring for tumours while PP wreaks havoc on Sam's system...both physically and emotionally. The physical changes sure are something to get used to...but the aggression levels are just something else! That, combined with all the other issues going on and having to deal with it all without having the luxury of verbalising your discomfort and extreme emotions, has made for one (often) grumpy little guy. I have seriously considered soundproofing at least one room in the house for fear of having the Police and/or Child Welfare show up one day to find out what all the hysterical screaming is about! And it ain't changing soon folks, as we are going to let the puberty run its course for Sam's longterm benefit.

But, as always, despite there having been a few bumps along the road lately...there have been some amazing moments too. Sam has been taking more and more independent steps and has on occasion managed a good five or six metres on his own! You do have to sort of trick him into thinking you're supporting him, but as soon as his confidence starts overpowering his fear, there'll be no stopping him I'm sure. Aaaaaaaand...Sam has discovered the joy of PRESENTS! So much so that I had to hide any unopened gifts this Christmas which were not for him. His birthday this year is going to be an absolute treat. Once all our 'nigglies' have been sorted out, 2017 is going to be a great year!!



Just kidding!






Wednesday, October 4, 2017

You know that point you get to...

...where you know you've FINALLY mastered this special needs parenting thing?

Nope? Well, me neither! In fact, I think I'm moving further and further AWAY from THAT point...like it occasionally flits a little closer to taunt me and I shakily breathe a 'we've-got-this' sigh of relief and then next thing it hightails away from me and I'm left reeling in a whirlwind aftermath of W.T.F's!

It's been a rather busy 3 months...magazine articles, 1 year schooliversary, meds fail, testis hunt, die-hard viral URTI's, flourishing receptive communication and and...

Sam's story is featured this month in a very popular local magazine, although the shoot for the article was done in July already.


The actual shoot was loads of fun, complete with hair and make-up and Sam, who just loves the camera, did really well. The only downside of the morning was Sam's ever-increasing fear of being in a car, as we travelled 45mins to the venue...and then back again. It's something you really have to see to completely comprehend but because holding my phone while Sam is frantically grasping at my neck/hair/face/clothes/arms as if I am about to ease him over the edge of Nanga Parbat's Rupal Face as opposed to over the annoying arm of his booster seat, catching it on video has proven a little tricky. So you will just have to take my word that the lil flappy dude does not do great with cars...eight years on, sometimes up to six or even eight into's and out of's a day and yet each time I open that car door, panic hits him like it's the very first time.

It's this very irrational anxiety which led us to probably one of our worst medication epic fails. With Sam's anxiety levels really affecting his quality of life and with him having been on his current anxiety meds since he was 2 years old, we decided to replace his Faverin with Serdep which, on paper, looked like a better fit (Sam's absent seizures have also increased and the risk of seizures is statistically higher with Faverin), plus the longterm use of the Faverin might have made Sam's system too accustomed to the Fluvoxamine so a change in med seemed like a good idea...until we did it. Said system was not as impressed with the change as we'd hoped and Sam's days became just one emotional turmoil after the other. At the same time, an EEG confirmed that we needed to increase Sam's epilepsy meds AND, for good measure, Sam suddenly sprouted some very adult-looking hair in his nether region indicating that a certain little testis we had presumed lost (and inactive) to the flappy dude's innards was, in fact, not all that inactive after all #gasp!!!

I make light of the situation, but I can assure you that almost every morning for two months I stood clinging to the gate of Sam's school in very-near despair, listening to the amazing team of ladies at Edu-Play Early Learning Centre reassure me that they would cope with Sam's completely over-the-top emotional state and accommodate what behaviours they needed to at that time...and those reassurances and encouragements were, without a doubt, both mine and Sam's saving grace!

I say "were" because Sam is once again back to his version of a "happy place" and our days are no longer filled with unpredictable bouts of emotion, aggression and insanely-pitched  screeching. We switched Sam back to the Faverin after 2 weeks of giving the Serdep fair chance and Sam's system has also now adjusted to the increased dose of Epilum. That darn little testis though...that's a whole other issue (and venting-full post on it's own), but in short, we have to try bring it down again which is not great news as, above spinal cord surgery and thumb reconstruction surgery, Sam's testicle surgeries (this will be the third) always seem to knock him the most. The fact that the little bugger has been hiding out in the inguinal canal for a good 4 or 5 years already means that we aren't doing any more considerable damage by waiting till the beginning of December to do the surgery so that a) Sam has at least had a couple of months to enjoy some (relative) calm before we slap him with another round of trauma and b) he gets to enjoy his Christmas concert and the festivities of the end of the school year.

Thankfully, through all the issues
over the past few months, Sam's
love for school has not been
affected. The fact that some of his
favourite people are there sure
helps. It's crazy to believe that on
18 July he'd been at Edu-Play for 
a full year already!


To close off, there has been a sudden flourish of receptive communication on Sam's part. His receptive language has always been good and we've even noticed him picking up on some Afrikaans words...but more than once now he has reacted to something that was said in a conversation in his presence, but not directed at him. It's been really quite amusing, with a flappy conqueror's twist of course, eg...a few nights ago Sam whacked his head a startling shot on the wooden headboard. Sam has an incredibly high pain tolerance, but still feels the initial pain completely, in other words, he feels the pain...reacts, but then has so (almost sadly) become accustomed to pain that he will continue functioning despite (I believe this is very much an RTS thing). Anyway, he knocked his head but instead of crying momentarily and then moving on as usual, he sobbed for over half-an-hour afterwards and was extremely heartsore. My neurotic, mama-brain went into overdrive of course and imagined all sorts of devastating consequences which might have made this head knocking different to the hundred others #eyeroll. About two days later Sam was rubbing his left eye and I mentioned to his dad (while Sam seemed preoccupied with his iPad) that his eye seemed to have been troubling him ever since he'd knocked his head. Sam (who was on the bed again at the time) calmly put the iPad down and, albeit it very cautiously and in super slow mode, replayed him falling and knocking his head. It was the cutest thing ever because, of course, it came complete with fake tears and the need for more of the same hugs and cuddles as well  πŸ’œ

  




Sunday, June 18, 2017

As the parent of a differently-abled child...

...how hard should you push? How sure can you be that you're allowing enough consideration for health, physiological and emotional wellbeing. How sure can you be that you're not allowing too much consideration? And on which one of those would you most prefer to err?

A few years ago (and by "few" I mean ten or so...and that's where I'm leaving it), I travelled a fair distance to work each morning making my way into the CBD via either bus or train. Because I cannot pinpoint the exact year, I cannot remember exactly which mode of transport is relevant to this story but as I am leaning towards 1996/1997 (yes, okay...so a little more than ten years maybe) I am inclined to believe it is the bus. Travelling what seemed to be the same route a few times, was a young man who appeared to be roughly the same age and whose constant companion was his remarkable guide dog. So many times I watched the intriguing pair navigate the busy streets along Cape Town's Foreshore and brave the city's public transport (which was a courageous enough task for even the sighted) and could not help but stare intensely at the young man, hoping for the slightest sign of sight because my heart broke a little each time I saw him, at the thought of his having to encounter such formidable challenges each and every day...alone.  While my memory is a little sketchy about the minor details (like whether we were travelling by bus or train, what with them being so similar and all) after all my "intense staring", it would be fair to say that I'd have recognised his face anywhere!

A week ago our NPO held a fundraising event and the guest speaker was a gentleman by the name of Hein Wagner - A blind man with vision. Hein, who now lives predominantly in Sweden with his lovely wife and daughter, hails from South Africa and had travelled to his country of birth alone to speak at our function. I had read his biography a hundred times by then, had copied it into several media documents...but had never thought to look at any pictures. Hein's lifetime accomplishments read like something out of an incredible feel-good movie. Few sighted men could achieve all that he has, so to say I was excited and very nearly intimidated to meet him would be fair. Hein entered the venue on the arm of a colleague and my heart stopped. Yes it had been about...ahem...ten years (give or take another ten) but that face was all too familiar. His presentation was profound! Amongst other things, Hein spoke about how grateful he was to his parents for insisting he learn to become independent, placing him in a boarding school for visually-impaired students 100km away at just five years old! While I have no plans to ship Sam off to boarding school (although this is a traditional punishment I have threatened all of my children with), Hein's message inspired me to rethink the way in which I approach Sam's challenges and, in turn, the attitude I instil within him to approach those challenges.

Having done several rounds with many of the obstacles Sam struggles with the most already, I thought it was worthwhile revisiting the more fundamental tasks which, although perhaps appearing "basic" to many, would make a significant difference to our daily lives. So first up was independent feeding - with the complex puzzle which makes up the lil flappy dude's brain, one of his trickiest challenges is fine and gross motor planning leaving eating independently as something we have not yet been able to master. This weekend seemed as good a time as any to try again...

Sam's movements lately seem to be hindered by an increasing amount of tremors and shakiness, but after a few more tries he really seemed to get the hang of manipulating the spoon which also seemed to ease the flow of his movements a little. A change in utensils (I foresee mountains of dirty dishes in my future while we figure this out) and Sam was not only more comfortable with the process, but was even scooping up stray food from his chin!

We will of course spend some time on this new goal before we move on to something else (and right now I can't even imagine what that something else would be) but, as with any form of progress for a child with specific needs, the joy of seeing how impressed Sam was with himself and the encouragement of what a little perseverance and motivation can do, was pretty darn awesome!

And so...did I ever find out if Hein is in fact the young man who I witnessed so many years ago? I'll never know!! My lacking self-confidence and social awkwardness prevented me from asking him outright, despite him being very friendly and approachable. I have considered indulging in some Facebook creeping (because once you've been an intense starer there's little else more inappropriate) to see if I might come across a photo of him at around twenty years of age but the thought of finding him with a short, trendy hairstyle then like he wears now as opposed to the long, almost shoulder-length bob I remember the young man having then, would be strangely disappointing. So, for now, I fancy the idea that Hein Wagner is in fact the blind, young man upon whom my senseless sorrow was wasted as while I thought he was out feeling overwhelmed and vulnerable, he was in fact out conquering and overcoming πŸ’œ



Wednesday, June 7, 2017

Does he know...

...that he is different? I've wondered about this often before but could never really come to a solid conclusion and, honestly, wasn't sure it mattered much. About a month ago we sat in the ENT's office...I say "sat" but mean "flapped, whinged and occasionally shrieked"...with Sam becoming increasingly agitated as our wait ticked past an hour. The younger, more mobile patients (all 'typical') provided Sam with a momentary distraction as they played on the mat, hopped around, etc. but once that moment had gone (all 5 seconds of it) Sam resorted to taking occasional swipes at them, especially whenever one sprightly young kiddo entered his personal space...which personal space, with about 4x4m² being shared by four other children, had had to become remarkably conservative!

The doorbell rang and I cringed inwardly at the thought of having to tap into even more adept ninja moves, intercepting Sam's frustrated swipes at now FIVE moving (and thankfully, blissfully unaware) targets. A youngster of about 12 quietly entered the room with his adult companion. With my back being to the door and my neck currently alternating between despairing states of immobility or excruciating pain (but Yay! for still half-gracefully being able to carry 30kg's of flappy dude around right?) I had a limited view and decided a not-too-welcomed bear hug was needed by Sam at the very moment the newly-arrived patient had to brush by our chair into the room.

Surprisingly, no swipe...no smack...just the most magnificent smile as Sam watched the boy take a seat in the corner and pick up a magazine. As he settled quietly into his chair and I was able to glance more easily at the newcomer, I found myself suddenly fighting back overwhelming emotion as I instantly recognised his Down Syndrome characteristics. For the rest of our time in the waiting room Sam smiled, happy-flapped and ooooo'd admiringly at the very reserved youngster, the other energetic and now also agitated kiddies having suddenly become invisible. Sam has always shown recognition of other physically differently-abled children, for instance, when walking in a busy shopping mall he will quickly point out a child in a wheelchair, but this was more than simple recognition...it was a resonating of shared journeys and an instinctive knowledge that Sam and this boy were the same kind of different! Understanding this 'recognition' when the object of Sam's attention is in a wheelchair or walker or similar means of support is pretty easy, but his intrigue this time round would not have been triggered by any outward 'hints' and although incredibly heart-warming, has left me somewhat unsettled. 

Because of having Sam's learning potential constantly undermined due to his physical challenges, finding a school which focuses on his cognitive abilities rather than the physical has been life-changing. With Sam suddenly seeming so perceptive to those around him though, I can't help but wonder what the effects will be of his being the only physically-disabled lil flappy dude in his school. I do see occasional inklings of frustration emerging (okay...maybe "occasional inklings" is a little conservative #eyeroll) but because in my heart I know that he would not thrive anywhere else, hope that I can find a way to instil upon Sam's heart the very thing I spend a decent amount of my time advocating for...that being "different" is not only okay, it can be a pretty profound state of being. Wish me luck xxx


Mother's Day this year was one for the books (or blog in this case) as it came complete with a school-made Mother's Day card from the lil flappy dude. Although I am pretty sure that Sam's not particularly invested in the sentiments of Mother's Day as, of course, every day is in fact Sam's Day (just kidding) he sure did seem super-chuffed with his card!


And immediately after Mother's Day the lil flappy dude went and turned EIGHT! With his birthday falling on a Monday, he had  a small celebration with his classmates, which he was just as super-chuffed about...especially because there were balloons involved, the object of Sam's most passionate love-hate fascination.



And immediately after his birthday (like literally the next day) Sam went into theatre for his umpteenth number of grommets and for us to finally have an opportunity to intervene and hopefully provide some relief from the nasty issues those talon cusps have been causing. 

The grommets were a breeze, as always! The talon cusps were filed down so that they now lie flush with the gum/palate and then a little of the surrounding gum was cut away to make room for the bulk of the cusp which has yet to grow out. Sam had also made light work of grinding another two teeth down into the gum. Luckily these were both still milk teeth which could be extracted to make way for the yet-to-make-an-appearance adult teeth. The work on the talon cusps proved a bit of a bloody affair and Sam was not entirely impressed with the generous mouthful of blood he woke up from anaesthetic with (apologies for the graphic details). Since the procedure, now three weeks ago, we have had a rather challenging time getting Sam to drink fluids. Follow up consultations have reassured that his mouth, throat and ears are all looking really good so it has been a little exhausting trying to figure out what the issue is, which issue is now causing some very unwanted bladder problems. For a host of reasons (which I am not going to go into now) Sam still drinks mostly from a bottle. Knowing his complicated sensory system, the chances are that the first few bottles after the procedure caused a significant amount of discomfort (we were warned this would be the case) and so Sam has now developed a negative association with a bottle. With another kid this could perhaps have been a blessing in disguise, an opportunity to animatedly introduce an alternate, way more fun drinking apparatus! This is, however, Sam...so I'm pretty much doing WWF-style moves while squirting small amounts of liquid down his throat. Could it possibly have gone any other way πŸ˜‰  

And, in closing, some recent school pics...just because πŸ’œ




Sunday, April 30, 2017

Layered

When you hold your breath while signing in, for fear of being asked for a password you know you can't remember, then you know it's been too long. Almost a cool FIVE months. Wow! When opening Sam's blog I attempted a mental timeline of all that has happened over the last five months but, truth be told, I couldn't put together an accurate timeline of the last five MINUTES! You chuckle good-naturedly but, oh, I kid you not. So here's my Plan B...I've gathered what pictures I have left of the lil flappy dude (after my SD card threw me to the curve and dumped my almost 1000 pics and videos into some never-to-be recovered black hole) which I will post together with whatever details and emotions I can remember of that event. For the sake of deeming this post at least somewhat readable, we shall start with the most recent pictures first. If, after the sixth picture, the content reads along the lines of "And here is the lil flappy dude at a place where he was doing some stuff and I was feeling bleh" then feel free to simply ignore the words and scroll through the pictures!





Car trips have always been a little tricky with Sam, with the only car in which he feels reasonably safe in being my car. I often joke that even if I had to win a whopper of a Lotto, I'd still be driving around in my little red Clio because the alternative would be Sam never leaving the house. Very occasionally though we need to leave the house as a family and little Clio's do not make for fabulously spacious vehicles, so a trip in Dad's car becomes necessary. After a short time (about 30 minutes or so) Sam will eventually relax enough to breathe and perhaps even allow some circulation to return to the arms clutching so frantically to his seat. This will, however, only happen if the backseat has been reserved for Sam and I alone. Try as we might, fitting a 6.3ft man and two teenage girls into the front of a Hyundai has not yet been successfully achieved though so there have been odd moments when Sam has been required to share "his" backseat with someone else. These trips do not go well and usually find us aborting our outing because no social activity has yet proven worthy of the unbearable screeching we need to endure en route. In desperation one afternoon (and because my traumatised brain had convinced itself that Sam had sucked all the quality oxygen into his lungs in order to maintain such an impressive tone of screech), I opened the window. Hallelujah! The kid went from crappy to flappy in 0.03 seconds. Our relief will be short-lived for sure as we are tentatively stepping into Autumn and the joy of driving with an open window might be a little less attractive in Winter. I say that but instantly hear the flappy dude's spirit mutter "Winter Schminter!"



At the end of last month, Sam went on his very first school outing. After almost ten months, I'm still sort of getting used to the kid being in school so his first school outing was pretty huge! Outings remain an unpredictable phenomenon in Smurfville. The ones you expect to result in chaos don't and those you feel are "safe" have you searching for a hammer and nails with which to board yourself and the flappy dude up inside the house for months thereafter. With my woodwork skills somewhat lacking, I decided to prepare for a, hopefully, hammer-free ending and arrived at Butterfly World a little earlier in order to figure out how Sam-friendly the place was, as well as to mark out possible exit routes. Well, the kid blew me away! We could have been going on a tour of the local butchery for all Sam cared. All that mattered was that his friends were there, along with his beloved teachers and Sam spent the morning in flappy blissfulness! He was even keen to touch (most) of the creatures during the reptile show...a little more keen than mom I dare say!





My first-ever, school-made Valentine's Day card from my warrior! Well, my first-ever Valentine's Day card from him at all for that matter. But this kid...at school...holding a paintbrush! It might seem a little blasΓ© for some, but you need to have felt the hopelessness of having your child's potential repeatedly overlooked...the guilt of not being able to provide him with the guidance and expertise he desperately needs to thrive...the fear of him never knowing the joy and excitement of friendship, to be able to fully appreciate the profound hope Edu-Play and seemingly insignificant treasures, like a precious little painted heart, ignite within you. 


This one's a bit of a toughie...meaning, I am not yet in a good space with it all. On 3rd February Sam had an MRI and EEG after having experienced a change in both nature and duration of the, till then, very erratic seizures we were used to. We had tried to do an EEG before but when the lil flappy dude started resembling the Tasmanian Devil in his attempt to escape the sensory-overload of the electrodes, we surrendered after just 17 minutes with absolutely nothing worthwhile having been recorded. I had little hope for this EEG being any more successful. Surprisingly, Sam tolerated a full 20 minutes. No, not much longer than the previous EEG, except that this time there were enough "spikes" recorded during those 20 minutes to warrant an additional diagnosis of Epilepsy to our existing Rubinstein-Taybi Syndrome, Cerebral Palsy and Autism diagnoses. Sam struggled a little with the two hour anaesthetic needed for the MRI, which was to scan both his brain (for possible causes of the sudden change in seizure activity) and his spinal cord (to rule out re-tethering) but thankfully after about an hour-and-a-half his oxygen levels and blood pressure returned to normal. 

The MRI confirmed the previous MRI's reports of Periventricular cysts and the RTS-related partial absence of the Corpus Collosum. However, this most recent report specified something new...static encephalopathy. It is effectively another form of Cerebral Palsy to add to the Periventricular Leukomalacia, but it is too an additional form of brain damage which was not there three years ago...and that's the part which has me unsettled. Sam's paediatrician reassured me that it is a non-regressive disease but does mean that developmental milestones not yet acquired, will most likely remain so...unacquired. For Sam, those developmental milestones include things like walking, effectively manipulating a spoon, etc. 

While thankful that my Sam does not deal with heartbreaking medical issues like many of our friends do, there is still a sadness that comes with placing yet another obstacle (or two for that matter) on his path. There is also an underlying feeling of guilt which I cannot shake, despite knowing that it is something many mothers of differently-abled children deal with. Both the PVL and the encephalopathy are caused by oxygen-deprivation in utero and/or during birth...it is incredibly difficult not to dwell on decisions which were made by both my gynae and I during the last few weeks of my pregnancy...decisions which were undoubtedly instrumental in the difficulties Sam now faces. It does not end there...there is an irrational but incessant need to go back to where I was eight years ago, devoting every waking hour to Sam and ensuring I was doing everything within my power towards helping him progress...and on top of that a final layer of guilt that I am not doing that now. 

You get my eluded "good space" now? 

I can tell you one thing, with his RTS diagnosis at birth in 2009, Sensory Processing Disorder added in 2011, CP and Autism added in 2014 and Epilepsy and Encephalopathy added now in 2017...there is not a damn you're getting the flappy dude near a radiology department in 2020!! Lol! 

But, in true warrior style, we keep on keeping on and will find our way back to that good space. Till then...

Sam celebrating his friend, Ethan's,
birthday at school.


Happy to do tasks he refused
to do at home. Go figure!


Sam and Leeanne, his dedicated and
ever-patient carer.


Again...a puzzle I donated to the school
cos Sam refused to do it at home. Cheeky
monkey! Lol!





Saturday, December 3, 2016

TEETH, FEET AND A FIRST EVER SCHOOL CONCERT GONE SMURF-SHAPED

Woo Hoo! A blog post! This is like, what...my sixth one for the year! Really quite pitiful, if I do say so myself, especially as there are so very many things going on in the Lil Flappy Dude's life that I could probably easily blog every day. 

Where should we start....let's start with some of the not-so-fabulous stuff and, as always, end off with the good stuff. 

Teeth! Teeth? Yes, really...teeth. Of all the issues we'd prepared to deal with when Sam was diagnosed with Rubinstein-Taybi Syndrome I not once expected TEETH to be such an issue.  What the doc should have said when giving us the low-down on RTS was "Child will have walking issues, feeding issues, breathing issues, sensory issues, spinal cord issues, testicle issues, speech issues, orthopaedic issues, digestive issues BUT out of ALL OF THOSE issues....the one which will challenge you the most is TEETH!!" Okay, I'm being a little melodramatic...which is completely out of character...but still.  So we were nearing the end of the three months we had to wait to see what that little talon cusp was going to do and were thankful that the area around the talon cusp had seemed to settle (after lots of infection and inflammation) when a couple of weeks ago Sam started refusing to eat and drink again.  I thought it was just another round of irritation so had a look inside Sam's mouth and was not too happy to see another talon cusp coming through.  Another three-month wait here we come.  With (I think) most of the Rubinstein-Taybi kiddos having developed talon cusps, the issue itself is not anywhere close to being considered medically "serious" or anything like that, but it's all the spin-offs from this "small" issue which are really quite frustrating. 

As always, Sam's first line of defence is to throw some hectic oral sensory aversion at me and refuse to eat or drink...a little annoying but, oh, we've done our time with this stunt and it eventually comes right.  The more worrying problem is that he steps his teeth-grinding up a level or ten.  We've already had to cut the remains of one ground-down tooth out of his gum which caused the subsequent adult tooth to come out sort of in the front of the gum as opposed to out the bottom of the gum because it could not break through the area which had been stitched closed after the procedure.  Now, with there being more irritation in his mouth, Sam has managed to completely grind down yet another tooth into the gum and has another two, mere days away from going the same way.  I get that Sam's REALLY into doing things a little different (because after all DIFFERENT IS COOL!) and I'm really into embracing all that funky difference. But every now and again maybe doing one or two things in the normal way...like just having your teeth come through the right spot in the gum...would be quite fab. 

Funny story though...when we were done with our most recent sensory-instigated fast, the lil dude decided that he was done with pureed foods. Yay!! Of course, we've been here before, but this time it really is looking promising.  We last had pureed food a little more than a week ago ("we"?...because I make a habit of eating pureed food?) and have done really great with sliced beef and chicken, just the minced meat remains a very expressive no-no.  So the meat might have been cut up really small. Like REALLY small...like to about what I'd imagine an ant's portion would be. But still, progress is progress so it most definitely counts.  Only time will tell how long we will be doing ant portions of food though because Sam's sensory issues and digestive issues are not usually keen on parallel progress...but here's hoping!

Random funny story...Sam watches a bit of tv in the morning when he wakes up so that I can try get all the morning tasks seen to.  If Sam has not woken up by a certain time, I usually put a movie on (always Teletubbies Bedtime where Alex sings "Wake up sleepy head"...pretty cute hey?) quite loudly, but on the odd occasion that Sam wakes up before that, he sticks his hands out from under the blanket and before even opening his eyes will sign whichever movie he wants to watch...and it's never Teletubbies Bedtime. You sort of have to see it to appreciate it, but basically he'll be lying dead still (which generally only happens from about 5am onwards) and all of a sudden two little hands will frantically pop up and sign the desired dvd in an exaggerated and very cheeky way...which is so odd, because our lil flappy dude is NEVER cheeky (*exaggerated eyeroll).

Seeing as we're currently into all things -free (puree-free...sleep-free) we decided to have another shot at nappy-free...or as close to that as we can get.  WARNING : POTTY-TALK TO FOLLOW! Previous attempts have been a bit tricky.  While you can get Sam to pee on demand, he doesn't quite seem to grasp the concept of telling you when he has the need to go (there had been a degree of damage to his bladder prior to the spinal cord surgery but there was almost a remarkable improvement after the surgery which in my layman's mind would say that Sam should recognise the "urge" to pee, but specialists' opinions seem unclear).  This might not seem terribly problematic but when attempting to potty train the last time, we found ourselves in a situation where Sam would only urinate when I took him to the toilet, he just refused to pee in a nappy.  The challenge with this is that he freaks out when sitting on the toilet, so he needs to stand...which would ordinarily not be an issue...except that the lil dude obviously cannot stand unassisted.  So I land up supporting him, which leaves those little funky hands free to roam the toilet. Eeeeek! At home this is thankfully a little less of an Eeeeek! but this method of peeing means that Sam using a public toilet is not an option.  The tricky part comes in when you're doing a four-hour trip to Stilbaai and the dude won't pee in his nappy and cannot use a public toilet. You see? Tricky indeed.  Luckily I spotted this nifty little item on Facebook recently...

...and we're giving it a go...and a rather successful go at that.  We've gone days where Sam has only used one nappy the entire day and he seems to have gotten over the idea that he cannot alternate between nappy and toilet (even though it was actually pretty awesome that that was his mindset).  The only minor obstacle here is that I haven't quite yet figured out how I'm going to go about sticking little green, froggy urinals in every public bathroom we might ever need to visit in the greater Cape Town area.  It's a little all over the place for now but it's a start (again)...an awfully tricky start...but a start nevertheless.

And we're almost on to the really good stuff (nay...awesome stuff).  Last bit of trickiness comes in with those funky little feet.  After acquiring some rather entertaining physical issues (a hip which keeps clicking out...a knobbly-thingy protruding from my neck...and and) I thought it might be best to stop carrying our 25kg's of smurfiness around.  Understandably the lil dude was not too excited about having to abandon his go-to mode of transport, being mom's hip, but now seems quite keen to walk into school (assisted of course) in the mornings...unless we are late (which, ahem, almost NEVER happens) then hip it remains.  So, lil dude is keen to 'walk' and mom is keen to have something vaguely resembling an aligned body back at some stage - it all sounds pretty peachy.  Which it is.  Except for these uniquely-designed little feet :



While it's pretty awesome to see how steadily more confident Sam is becoming on his feet, it's a little worrying that these little feet seem to get more funky by the day.  Sam is not very keen on walking with his AFO's on, but walking without them seems to be worsening both the Hallux Varus in the left foot and the over-pronation in the right foot. So, the problem - Sam needs to walk.  Sam does not want to walk with AFO's. Sam's feet are thus becoming more funky.  The solution? I am clueless. For now. 

And on that terribly constructive note...here's the AWESOME!

My precious little, triple-diagnosed, previously deemed "ineducable" and only worthy of "a place to put him so I could go on with my life" flappy dude took part in his FIRST EVER school concert.  This mama's heart near exploded with pride and awe as I watched him...what an incredible kid! What an incredible inspiration! What an incredible school for being able to recognise the potential which lay hidden in the non-verbal, sensory-dominated labyrinth in which Sam waited to be discovered.  Thankfully though, before I could embarrass myself by turning into a blobbering mushy mess, my not-so-little-anymore very flappy and terribly cheeky dude decided to throw a Sam-spin on things...see for yourself xxx