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!