Sam's Mighty Roar

Four weeks ago, today, Sam and I “woke” from our most profoundly sleepless night in thirteen years and, those who know us well, know that there is a significant collection of sleepless nights in the running for that accolade. The Precedex/Morphine cocktail Sam had been fed through the CVP line in his neck after surgery (Supraglottoplasty/Subglottic Stenosis follow-up) ensured a deep-enough post-theatre nap…but just as I was about to unpack my illustration tools for a kiddies’ storybook recently penned, in anticipation of the three sedation-filled days which were meant to follow, Sam’s eyes fluttered open. And there he and I sat throughout that Wednesday night…a 54kg strapping young lad, without the cognitive or communication skills needed to process the absolute terror of his surroundings and all the lines and tubes invading his (already) sensory traumatised body, too petrified to so much as move his head. And an emotionally depleted mom, at her most helpless and heartbroken, watching her precious boy’s tears trail down a bewildered face, frozen into a silent cry, devastated by not being able to comfort him the way he wanted. And I thought about my little book (Sam’s Mighty Roar) which shares (in an age-appropriate way) why Sam’s frustrations and anxieties often end in shouting fits, mentioning anxiety triggers like sensory overloads and the like, but not moments such as these…moments which so many of Sam’s differently-abled peers have to overcome, often with an unintentional disregard of the emotional impact which, with their lack of adequate communication skills, is regularly commended as a “high pain threshold”. On this night Sam’s roar was not so mighty. But his fighting spirit was!

A few hours later when the ridiculously uncomfortable chair I’d had to sleep in (thankfully so, as it kept me fully awake through Sam’s first night) began to feel just the right amount of comfortable for a late-afternoon nap, the first signs of that Mighty Roar resurfaced, prompted by a tummy which, after a 48 hour long fast, was no longer bowing down to anxiety. Jelly was administered STAT and shortly thereafter, despite Sam’s urine catheter removing itself (OUCH), Sam actually settled in for a decent night’s sleep. Fellow DJ’ing parents (Different Journeying parents – not the music kind…although possibly them as well) will relate to the consistent flow of movement and noise in an ICU though, so mom, instead, watched how the moonlight rendered the steady movement of a crane in the harbour as it loaded a ship, a peculiar alien-like illusion and pondered on the many entertaining moments sleep deprivation provides! 

By Friday morning, after doing well on just 10mls of nasal cannular throughout the night, the supernatural healing which had been prayed over Sam by our church community was boasting its glory as both Sam’s oxygen and sedation cocktail were weaned off and, after consuming three helpings of macaroni and cheese (yes…breakfast, lunch AND supper!) and acquiring a new drinking skill, Sam’s feeding tube was removed on Friday evening. Another peaceful night ensued and mom even managed to catch a couple hours of sleep as well, with the occasional wink from my alien friend. Late on Saturday afternoon the planned five-day ICU stay was firmly cut short as Sam made his way home from his 24th surgery (give or take a set of grommets or two forgotten from his medical overview – mom fail #1752). 

The Supraglottoplasty, to repair Sam’s laryngomalacia, was extremely successful (as shared by Sam’s phenomenal ENT surgeon), requiring less tissue to be cut away than originally thought. Sam’s Subglottic Stenosis though is something he will continue to live with, exacerbated by fragile lining of Sam’s airways and making the airway vulnerable to rupture should the incorrect size tube be used during intubation. Hopefully the remedied laryngomalacia will alleviate the need for so many intubations and has already proven its success by creating the airway space for an EVEN MIGHTIER roar! Yes! Who saw that coming?? 

Just a week after the surgery, while still navigating the usual (but oh-so manageable) emotional rollercoaster that follows all of Sam’s procedures (heightened anxiety and clinginess, night terrors which result in even-more-than usual sleep disruption, etc), I found myself in awe of and unimaginably thankful for how incredibly well Sam recovered from the surgery…and, too, for the outpouring of love and care from so many…thank you for all the messages, thoughts and prayers. 

Standing, while we wait...

 ...not anyone's favourite thing to do, I am sure (?) Waiting. The need to be actively working on overcoming current challenges, whatever those might be, is seldom content with the idea of just waiting. But, ah, what do you do when there's few other options? Usually, my 'waiting' would look more like obsessing, while trying to find that one solution/approach/logic I just must have overlooked, while suffocating in the anxiety/guilt that what I am doing/planning/remedying/coordinating (and and) is just not good enough. It's a control thing. A fear thing. A trust thing. So, when recovery from Sam's Dec 2020 surgery was thrown a bit of a spanner in the works by something as seemingly insignificant as an ingrown toenail, I decided to be more intentional about the waiting this time. So how's that going then? 😁

Well, it's a little all-over-the-place...much like my speech, feet and ridiculous number of forgotten-about cups of tea. And it's kinda hard work...like all the worthwhile things are, of course 😉. There are days when just 'standing' (ironically) in the moment, allowing all the disappointment and frustration to just soak through that mama-bear armour is actually pretty bearable. Weirdly welcome (I sometimes worry that too many things not going quite according to plan, have made me desensitized to feeling those things). Once those feelings have been processed and reflected upon, reading old journals or blog posts to remember other tricky moments which seemed just as overwhelming at the time but which were then overcome (sometimes in unexpected ways) has been wonderfully cathartic. Well, except for those awkward moments when I had to remind myself (with sufficient amounts of cringe) that the author of those all-too-often whiny posts in between, was in fact me 🙈 Hey, even scrolling back on some FB memories, when cringeworthy blogs and/or emotion-bombarded journals aren't available, can do the trick! Anything that triggers gentle reminders of all which has already been overcome. And how. And then? And then there's scripture, prayer and worship.  And hope. And trust. Waiting intentionally. 

Some days.

But some days surrendering the need to control the waiting (because who even should be wanting to control waiting? Well, me. I do!) just seems impossible. And instead of standing there's more of a somersaulting (clumsily so) in between Googling possible new strategies, doubting and regretting my reaction time to that silly little toenail, certain that if I hadn't left it for so long it might not have had such an impact on Sam's foot. And generally just obsessing about what other unexpected spanners might be hiding in the works as a result. The balance right now between waiting intentionally and somersaulting clumsily is not ideal but I am hoping that as the intentional waiting is mastered (or even semi-mastered) it will get better.

Anaesthetic #20something made for a fabulous catch-up nap from far too many leg-spasmy, sinusy-filled, sleep-deprived nights before. Well, for Sam at least!

The toenail of the hour. Who would have thought something so small could have such a huge impact? That that uniquely-designed foot, newly confident in the support it now had from its 'freshly-arthrodesized' right foot, would go from eagerly wanting to walk (and beautifully so) a few months ago to contorting, in an attempt to self-alleviate the painful toe, into a position more compromised than even before the surgery. But oh, those precious moments when Sam walked into his first few post-op physio sessions, barely holding onto Aunty Nicole, or occasionally (without even realising it) would stand on his own. And how beautifully straight the left foot sat just after surgery, the straightest it had been in twelve years! Those moments are filled with hope of more. Aaaaaand, with full recovery from the surgery having been estimated initially at around 10-12 months, we're still well within our timeframe...spanners and all 😂

The song below by Lincoln Brewster has made many a 'waiting intentionally' moment more achievable...even when it is sometimes the cause of a painful auditory assault on those unfortunate enough to be within earshot, as it is huffed-and-puffed out by my headphoned, treadmilling self! It's well worth a listen. 

While I wait

Main

Deep within my heart, I know You've won
I know You've overcome
And even in the dark, when I'm undone
I still believe it

I live by faith, and not by sight
Sometimes miracles take time

While I wait, I will worship
Lord, I'll worship Your name
While I wait, I will trust You
Lord, I'll trust You all the same

When I fall apart, You are my strength
Help me not forget
Seeing every scar, You make me whole
You're my healer

I live by faith, and not by sight
Sometimes miracles take time
I live by faith, and not by sight
Sometimes miracles take time

While I wait, I will worship
Lord, I'll worship Your name
While I wait, I will trust You
Lord, I'll trust You all the same

You're faithful every day
Your promises remain
You're faithful every day
Your promises remain
You're faithful every day
Your promises remain
You're faithful every day
Your promises remain

Though I don't understand it
I will worship with my pain
You are God, You are worthy
You are with me all the way

So while I wait, I will worship
Lord, I'll worship Your name
Though I don't have all the answers
Still I trust You all the same

Hope like a child...the greatest supernatural power!

Hope Like a Child

"We all know people who seem to have everything in life—the right house in the right neighborhood or the right pictures on social media of an uncomplicated dinner out on the town with their healthy, normally-developing kids. But happiness is not relative to our zip code or meals. We are mercurial people. We all have our seasons of growth and love and loss and health and hurt. We crave lasting happiness, and we believe that it can be had here and now, at least on some level. It's why fashion has seasons and jobs have bonuses and ad campaigns work. We think more and new will finally be it, even as we know in our hearts that it's not here where we need to be looking. Nobody’s life is perfect. Nobody’s happiness is without its own pendulum swing.This awareness could be one of your greatest supernatural powers as a parent of a child with special needs. You can learn to hope like a child without trying for a manufactured happiness. You could let it settle on you instead, like a soft refrain, soothing and familiar. You can be happy and hope without tying it to developmental milestones or financial plusses or perfect pictures of effortless outings—it need not be contingent on the here and now. 

So go do it. Go be free. Give up the hierarchical pecking order and go low, on the level of a child, and feel what real hope is like. People will find you odd. They will consider you a contradiction, but really, you are living in line with how God designed the world to work. Be where you are, revel in the everyday, and be proud of how dependent you are on your heavenly Parent." -Jamie Sumner

We are on day 80-something post surgery. Christmas and New Year have come and gone and, thankfully, so has the 2-3 hours it took every.single.night for Sam to fall asleep, for the first 70 of those 80-something nights. This really has been our toughest recovery so far. And we're probably only about a quarter of the way to full recovery...well, full physical recovery at least...because Sam does like to throw his whole self into these kind of things and right now, despite the most heartfelt smile with which Sam opens his eyes each and every morning, I fear that he is not coping emotionally with the impact this surgery has physiologically had on him.

Surgery on the morning of 1 Dec 2020 went well. Sam was fairly calm and in good spirits and for both anaesthetic #20 and #21 (being this last one) lay on the table and calmly accepted the mask on his face which is a HUGE improvement from the usual acrobatics he and I used to entertain the theatre staff with when, especially in recent years I a)tried to find a secure way of holding him on my lap but with his face open and non-resistant to the mask and then b) tried to carry the sleeping sag of smurfiness to the operating table without dropping him. Those good spirits did not quite make it back to the ward though and after a couple of hours of trying to kick his legs into the side of the bed, we made a hasty exit from the hospital and headed home, opting out of the night Sam was meant to stay for observation.

The calm before the storm 🤭

They had given Sam a neural block in theatre to help with the pain for the first 48 hours, but I think the sensory challenge of not being able to feel his legs was just too much for him. Nevertheless, once home Sam was a lot more relaxed, although somewhat clingy. 😅 Ooookay! Even more clingy than usual. 

 As Sam has grown steadily to a size not much different than my own, I knew we were going to be navigating a recovery process on a whole new level. Where as with previous surgeries I could just bundle my little Smurf up in my arms and comfort him, often while still going about my normal activities, this healthy 43kg's of Smurfiness doesn't bundle so easily into my arms anymore. Still, when a sore little guy wants to sit on his Momma's lap...sit on her lap he will! 

The extra bit of clingyness has been fairly endearing, albeit challenging...especially when I have done a fair bit of one-handed typing or spent many nightime hours making sure I don't relax an arm or leg a little too much and find myself falling from the tiny corner of bed I have managed to secure 😂

About a week into the recovery process Sam seemed to be experiencing some pretty high levels of pain and discomfort. We took him in to the surgeon's office on Day 10 post op and discovered that he had a nasty pressure sore on the right heel, which would require me to open up the bandages every second day to dress the wound and then re-splint the leg. To say I was freaked out would be an understatement of 2020 proportions. I have dressed all Sam's other wounds, even the spinal cord one. Oh, but this one! Every second morning I woke up nauseous from the anxiety that would be gripping me within a few hours as I handled that right foot, praying that nothing I did would somehow move the little titanium wedge inserted to fuse the ankle bones. By 10 January 2021 Sam was allowed to have the splints off for about a half hour a day so that he could bath and he even managed a little 'swim' on the really warm days (which I made sure to coincide with dressing-change days because the only thing more stressful than having to handle that little foot, was NOT handling it while it floated around in the water! 

(Such a professional job there on those swim trunks)

 

Keeping Sam occupied has been an interesting task. There have been many, MANY, ice-cream runs to the beach,way too many YouTube videos watched and just way too many Snapchat photos taken. And when we got bored of Snapchatting ourselves, we resorted to Snapchatting toys and even Grampa. The boredom struggle was real! At that point there were just two goal posts to keep in focus, the six week follow up with the orthopaedic surgeon (where I thought we'd be receiving the go-ahead to start weaning off the splints...at least at night) and the, yet unconfirmed, day Sam would be able to start putting some pressure on the ankle. Until then, we snapped, danced, YouTubed, read and entertained away the 14 hours a day Sam spent on the couch as moving him around was just too tricky. 

🤫🤫🤭🤭

At long last AFO day came along, being this past Wednesday - 10/02/2021. The fitting of the AFO's went well, with Sam putting up a minimal resistance...quite understandable considering he had, by that stage, become extremely attached to his splints and often asked me to put them on as soon as I had taken them off and the new AFO's are a little firmer in their correction. The excitement was real! Christmas had finally arrived. I even titled my journal entry that morning "AFO DAY"! 

And then something went wrong when Grampa and I had to get Sam back into the car after the fitting. Sam's car phobia has reached a whole new level (I find myself saying that a lot lately, about a lot of different things), as car trips have been limited to when Dad can transition him into and out of the car, so trying to put a frantic, flailing not-so-little-anymore dude in the car without the benefit of having him take some weight on his foot in the process proved impossible and whether it was that Sam's right ankle just landed up in a compromised position or whether his resistance forced him to push down onto the foot, which has not only felt no weight on it in over 2 months, but would have had its first weightbearing inflicted rather aggressively on it, as opposed to a more gentle transition into its new position. Either way, Sam got sore, really sore. And by the time we got home he couldn't move and was crying in pain. At that point it was impossible to tell where the pain was coming from as EVERY movement seemed to cause pain. It was easily hands down the most helpless I have felt in almost 12 years 😞

I removed the AFO's and tried to gently "feel" which parts of Sam's body seemed to react the most to manipulation and at that point he reacted the most to his back. I gave him a generous dose of Ibuprofen and went to bed beyond disappointed at how the much anticipated "AFO DAY” had turned out. The pain meds definitely was the pain but by the morning Sam was flinching and crying again so, after discussions with Sam's physiotherapist (a profound pillar of strength during this whole ordeal) and Sam's paediatrician, Sam was admitted on Thursday morning. Sam breezed through his 3rd Covid-19 test and a string of x-rays and sonar scans to try identify the source of his pain. There was a brief period where we thought I might have fractured his rib with the ridiculous amount of twisting and fighting Sam had put up the previous day in order to avoid having to go into a car. And, all things now considered, I might well have chosen to rather push him the whole 48km's home in his wheelchair if it meant dodging this latest curveball. Thankfully the cringeworthy flood of tears I gracefully subjected Sam's doctors to when hearing that I was possibly the cause of adding even more pain and discomfort to an already tricky recovery, was all for nothing when the x-ray came back okay. By Friday morning we had narrowed the causes down to lower back (almost exactly where Sam's spinal cord surgery had been), his right hip...and then of course, his right ankle. Sam was of course keeping us on our toes by reacting with discomfort to all three of those areas🤦

Further radiology ruled out any spectacular injuries to the back and hip, so right now we seem to be dealing with a hurt ankle/foot on top of the already sore ankle/foot! So AFO Day has officially been postponed. We see the orthopaedic surgeon again on the 22nd, where we will do more x-rays to see how well (?) the ankle bones have fused together and I am just praying that Wednesday's incident has not been severe enough to affect the process. 

Still, doing splints 24/7 is not helping that pressure sore heal completely, but at least the wound has closed completely and just appears to be a little irritated now. The difference in Sam's foot immediately after surgery compared to now is HUGE. The bruising was there one day and gone the next and had it not been for EPIC FAIL AFO DAY Sam's foot would be boasting a pretty impressive swelling recovery! What the heck, we'll boast anyway 😂

The colour of those toes really gave me a fright, but by the time I had to start dressing the foot just 10 days later it was almost completely gone. Just remarkable! 

 

On a funny note (because there's always an entertaining selection of those with these kind of things) I decided to give Sam's splints a bit of a makeover after we saw the orthopaedic surgeon on 10th January because, had everything gone according to plan, the next time he would see Sam would be after AFO DAY...now I get to revel in yet another bout of cringeworthy Nickyness. In my defence, I had just 30 mins within which to cover the splint with padding and then fabric, by hand, as 30 mins was the length of time Sam was allowed to be splint-free at that point. 

Extreme Makeover : Splint Edition

Let's pray that January and February are not setting the tone for the rest of 2021! For now Sam and I are living our best hermit lives, indulging in lots of binging (YouTube for Sam and #bingejesus for me), embracing the art of slimming down (social media for me and apparently any form of constructive stimulation for Sam 🙄) and trying to fuel a (pretty desperate) hope that there is a purpose as to why things are working out the way they are 🤞

📖At that time the disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?”  He called a little child to him, and placed the child among them. And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven.  Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven.

Matthew 18:1‭-‬4 NIV

#samtheconqueror #rubinsteintaybisyndrome #rtswarrior #cerebralpalsy #cpwarrior #bingejesus #arthrodysis #healing #hopelikeachild #hope #morethanconquerors #conqueror

2020 - THE YEAR THAT KEEPS ON GIVING...

 ...uncertainty, curveballs, heart palpitations, stress migraines, anxiety attacks. You know, all the good stuff. I feel like one could publish a blog post made up entirely of 2020 memes and GIF's 😅 

And here we were, quietly minding our own business (and all those who know Sam and/or live within a 5km radius of our house have just gone "Wait! What? Quiet??"), breathing a welcome sigh of relief as this year draws to a close that, other than scaling down our already scaled-down social life and having missed so many precious therapies, the pandemic and its host year has not impacted our lives too terribly and we have certainly (almost) come out of 2020 with far less significant hardship than many others. In fact, I daresay, there have been many blessings as a result of the pandemic and its subsequent lockdown...a nudge to relook at the things we place the most value on and (more importantly) take for granted, a (not too) subtle reminder to make the most of opportunities to enjoy friendship and interacting with others when the choice to do so is still within our control, a welcome break from the usual respiratory illnesses Sam is niggled with every few weeks. And the blessing of being 'still' which (as for most special needs parents) didn't mean having a few spare hours every day to just sit and read a book, splash around in some new creativity or whatever other joy might have indulged the soul. Rather, it was more of a slowing down and being more present with the need to juggle the usual day-to-day special needs parenting around therapies/specialist appointments, etc. been forced into pause.

The rushing around to and from activities did bring with it a hidden benefit though...an element of physical activity for Sam which I completely underestimated. While Sam needs his wheelchair for distances, when we're on our usual trips to therapies and other activities I rather "walk Sam" (support him from behind while he walks) and even if it's just driving somewhere, we still have to walk to and from the car. But then all of that stopped. And the 'still' resulted in some heartbreaking regression for Sam's beautifully-unique feet. A few weeks ago Sam's default mood started swaying heavily towards grumpy. I just couldn't figure out what the cause was. The fact that he was spending more time on his feet again after such a long period of predominantly knee-walking, just didn't occur to me. We had had a consultation with the orthopaed fairly recently (in May) who confirmed that the original plan of action for that little rocker-bottom foot was still the same - major surgery when Sam is 14/15 to fuse bones together and some equally cringy plans for the collapsed right foot.

Sam's discomfort became more and more obvious though, to the point that he was flinching with most of his movements. Still, I could not figure out what was wrong...my first thoughts were his back or tummy (which has taken a liking to fecal loading lately 🙄). In hindsight, most of his discomfort was when he had his AFO's on or had just had them taken off and, seeing as he generally had them on for 6-8 hours at a time, that was pretty much most of his day. As Sam's emotional state deteriorated and desperate attempts to ask him where he was sore revealed nothing (does the circulating overwhelming heartache of 'non-verbal' ever go away?) We even planned on increasing/adding anxiety meds in case it was all emotional/psychological. The frustration of not being able to figure it out is second only to the frustration that there were so many clear indications that I missed! Thankfully (and I know I've said this before but I am going to say it again...and probably 100 billion times more before our journey ends) Sam has been truly blessed with THE most amazing pillars of encouragement, support and expertise in the shape of his therapeutic and medical team! Aunty/Princess Nicole became increasingly concerned about the tightness and tenderness of Sam's left foot, to the point where she personally went to the orthopaedic surgeon's rooms to ask if Sam could piggyback off an appointment I had last week for my shoulder...the alternate which would have been to wait the usual 6 or so weeks for an appointment. The orthopaed confirmed Aunty Nicole's suspicions that what I had originally thought was merely 'normal' pressure points from the AFO's, are actually the foot's bones making their way through the side of the foot. In other words, Sam might land up with "holes" in his foot. So, our three-year plan for foot surgery has turned into a seven-day plan. Doing major surgery on the left foot now is still not an option as we need to be sure that Sam has stopped growing first but there are some things that can be done which can hopefully take some pressure off the left foot and get it safely to 14 years 🙂 So tomorrow the orthopaedic surgeon is taking Sam into theatre for neurolysis of the calf muscles on both legs (which will lengthen his calf muscles and minimise the degree at which they are pulling on his feet) and then he is going to go ahead and fuse the ankle joint of the right foot through Arthrodesis Subtalar Joint  surgery so that the kid has at least one stable foot. 

I am fighting off bouts of anxiety which threaten to smother me a little...not around the procedure itself, but more the recovery. The same feisty warrior spirit which carried Sam through all his other, more serious surgeries, is still the same as always! What isn't the same is the Mom : Sam ratio (although, with the help of lockdown, I have managed to keep it slightly in my favour). So, where in the past I could just carry the lil dude around on a pillow or cuddle him on my lap, post-op TLC might look a little different this time. We are at a point where I cannot pick Sam up unless he is already in a standing position so his not being able to weight-bear is going to bring an interesting twist to the situation. If anyone knows of some exercises which do a super-speedy beefing up of one's core and upper body strength, feel free to flood my phone!! 

Thankfully, I have a feisty warrior spirit of my own I can draw strength, courage and peace from...and it is rooted in He who is faithful, loving and unimaginably generous with His grace. 

This tattoo has a bit of a charming story to it...I had it done a few years ago. It was not what I had originally envisioned for my next tattoo (which are there to whisper the words my soul is often too overwhelmed to hear) but for some reason, at the very last minute, these are the words I chose. And the skin had barely healed when a challenging season filled with uncertainty, failures and hopelessness found me not only regretting my choice, but on very many days unable to even look at the words which seemed to burn into my skin as they taunted me. 

 Two years later, after that 'challenging season' seemed like a walk in the park compared to what 2019 had in store, on 11 November 2019 those words burnt into my soul again. But this time the intensity of their weight on my skin...and my life...was welcome. So, I am trusting that our longterm plan for Sam's feet has been curveballed by He whose answer to my prayers for Sam to walk one day, is being presented in a way much more glorifying than the blueprint I had dictated 🙏

#samtheconqueror #rubinsteintaybisyndrome *RTSwarrior #cerebralpalsy #CPwarrior #isurrender #morethanaconqueror #bingejesus #mustardseedfaith

THE MAGIC OF EQUINE THERAPY

You know that indescribable feeling of pride and hope and pure joy every time your differently-abled kiddo takes a step forward in a new direction for the first time? Well, I gotta tell you, each week's equinetherapy is like experiencing that feeling all over again for the first time! Today was Sam's third session after a three month period without horses due to Covid-19 and considering how his very first few sessions last year saw us spending an entire session with having only coaxed Sam forward by two steps, I prepared for the worst. But, first day back, and Sam was literally shuddering withexcitement as we made our way towards Whiskey and he pretty much blew me away. You can read about the benefits of horse therapy on paper...even marvel at a video or two...but only when you experience the holistic healing firsthand do you really grasp the MAGIC.

#samtheconqueror #rubinsteintaybisyndrome #rtswarrior #cerebralpalsy #cpwarrior #milagroequestria

REMAINING THANKFUL

3rd July is #worldrtsday and usually by now I've decided on a few images,  slapped a few words together about why awareness days are so important and, flip, some years even had a t-shirt or two printed 👊 This year, with all the Covid-19 uncertainty and additional concerns heaped on top of the 'normal' concerns most special-needs families face, reflecting on a life without Rubinstein-Taybi Syndrome seems to be occupying my mind more than usual...a life without watching you go through endless medical interventions, without  watching a beautiful and incredibly receptive little mind struggle with a body which robs you of speech, without watching you innocently forgive attitudes and behaviours you shouldn't even know exist, without the daily (or nightly) mind-numbing fear of what will happen to you when I'm gone. And then I think about the 11yr old boy you would be without RTS...I can almost hear that non-stop, sing-song voice chatting my ear off, imagine a feisty little character asserting himself 100 times a day as his beautiful and incredibly receptive little mind continuously amazes me. Kinda like the non-stop, sing-song voice which fills my every day as you go about your conquering, kinda like the beautiful mind that almost-daily amazes me with the wonders it has stored in there alongside an awareness of your vulnerability, against which you assert that little feisty character. Give or take a surgery or ten and (hopefully) minus a backhand or twenty (Sam's, not mine 😜) you'd be the exact same little guy. Just without the invaluable life lessons...without the unique opportunities to shine...the precious RTS family bonds...and without the funkiest hair any kid could ask for! Do I wish away the heartbreaking challenges and hardships that medically-fragile and differently-abled people have to endure? Every minute of every day! But never will that overshadow the thankfulness and gratitude for the soul(e) this journey has shaped. Happy World RTS Day to our Rubinstein-Taybi Familia 💜

#samtheconqueror #rtswarrior #cpwarrior #rubinsteintaybisyndrome #worldrtsday

Happy 11th Birthday Sam!

For the first time in six years (and only the second time in eleven years) I decided to throw Sam a birthday party this year. And then Covid-19 happened. Bleh. Luckily, my over-zealous self had bought one or two presents way in advance (and even a Blippi-themed accessory or two) so we could still have a small celebration. For the umpteenth time in the last few months I am reminded of the importance of grasping all opportunities, whatever they may be. The past year has been a fairly profound year for Sam...he has grown and developed in so many new ways! This does not mean that this year has been any less challenging than others...in fact, I daresay it has been one of the toughest, with Sam's mind and character blossoming at a beautiful pace but forever trapped within the physiological boundaries dictated by his diagnoses, which boundaries result in the most devastating frustrations. Thankfully, focusing on those many 'blossom moments' makes it easier to push through the frustrations. Without a doubt, Sam would not have experienced this last year in quite the same way had it not been for the phenomenal team of ladies guiding him through his intervention therapies...they have shaped his courage, his determination and his newly discovered adventurous side in ways I never thought possible 💜

Although there was one birthday wish sorely missed this year and the fact that Sam's RTS sister Ally's journey celebrated their shared birthday in heaven for the first time today, we still cherished the low-key celebration we were blessed to spoil Sam with ❤️
#samtheconqueror #rtswarrior #cpwarrior #rubinsteintaybisyndrome #cerebralpalsywarrior

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-Röhm '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 🙏🏻💜) 

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

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 😅 The boy's got a healthy covering of hair I tell ya! 🙈

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 🤪🍫 When afternoon naps are the order of the day, you know the flappy dude's not himself 😴

#samtheconqueror #rtswarrior #cpwarrior #rubinsteintaybisyndrome #cerebralpalsy #souletherapy

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 💜 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. 😅

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 🤷😅) 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 🙏 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 💪I 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 sleep-deprived eyes!

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 🙈). 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.

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!

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(lip)'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  💜