...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
