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
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