Do you have a sourdough starter?
Are you making a carby creation in your oven right now?
If you’re not (like me) then what the hell are you doing with your life?!
That’s how I feel, anyway.
Don’t get me wrong, baking bread and trying new hobbies is an awesome way to spend the freed up time many of us have. I think it’s great and am genuinely enjoying seeing my friends’ post their creations (both faily and delicious-looking).
Buuuuuut.
That ain’t our life.
What We’ve Actually Been Doing During COVID-19
The boys are loving being at home more!
We are trying our best to do all the PT, OT, speech and other therapies the boys need every day but often, it feels like an impossible target to reach “everything.” I feel like we’re doing pretty good, though.
Still, my work comes nowhere close to that of the boys’ professional therapists, so I can’t wait until COVID quarantine is over so that they can get back to the pros. I worry if this goes on for too long that they could regress in skills, especially Jaxon (Axel is more self-motivated at his current stage).
We had to cancel our preplanned trip to Toronto for our 3rd CME physio intensive at SMILE Therapy for Kids, which would have been end of March. I was so devastated! We would have had to cancel regardless of COVID as Jaxon had his 8th emergency brain surgery just a week before we were supposed to go, and just as COVID-19 began to hit Canada. The surgery was much more involved than his previous, as he now has 2 active VP shunts and it required abdominal surgery, too (so no intense physio until just very recently).
We have had a few medical appointments during the quarantine, most done virtually except for one, and everything else has been 100% cancelled. Here where I live, only essential services are open and pediatric therapy, PT, etc is not considered essential…
Axel’s sedated hearing test was also cancelled, which I am a little worried about because his left ear has had a significant reduction in hearing, now bordering on moderate-severe loss, when it was testing normal just last year, so the audiologists are concerned. No idea when that can be rescheduled (after COVID…).
The weather has been gorgeous here though, so it’s been nice to get out for walks and that’s pretty much it! My husband is still working his usual job (luckily, essential) and one of us has been going out once a week to one grocery store for food (and okay, wine) and that’s it.
And, like usual, I have been working at nights after the boys go to bed, often til 1-2am and then up at 6 or 7… 7 days a week. It’s tiring.
Resources/Toys/Virtual Therapy
Here are some things that have helped get us through this quarantine!
Virtual Therapy
We have been doing weekly PT and OT virtually from SMILE Therapy for Kids, seeing the amazing Jessica and Kali! You can find out more about booking sessions here. They also have awesome daily exercise challenge videos on Instagram to inspire you.
We’re also doing weekly PT from our regular private physiotherapist Nitin at Kids Physio Surrey. They’re also open for virtual session booking, too. Can’t wait to be back in the clinic, though!
At-Home Therapy Equipment
I bought a few new things to help us with our home exercises. I’ve wanted to get these things for awhile but held off because our place is SO small… but now, screw it… lol.
Bosu Ball (great as a balance board, for sitting and core work for kiddos, and push ups for mom lol)
Step Stool (stepping exercises, both up the step and if you turn this one over, stepping in and out – kinda a cheap version of the official CME boxes 😉
Some other things I already had but work great: The UpSeat, therapy ball, wedge pillow, and Wilbarger brushes.
The Downside: Fear of Shunt Failure/Hospitals
To be honest, we’ve lived this isolated life ever since the boys came home from the NICU.
With their health issues and being preemies, etc, we were instructed to by the doctors. Especially during fall/winter flu and RSV season.
Any time of year, we avoid large crowds, we grill people on if they’ve been sick in the 2 weeks prior to seeing us before making plans, and we’re cautious about too much public exposure (malls, restaurants, etc).
To be fair, it’s not SOLELY a fear of germs that keeps us mostly away from people. Most of the time, it’s just exhaustion. I’m so tired after a week of the aforementioned hauling, lifting, driving, appointments that I just don’t have it in me to do something fun and go out… which involves more packing, hauling, lifting and driving…
(This quarantine has made me realize this is true more often than I thought, which also means I’m going to be more forceful about pushing back “useless” appointments and more vocal about the fact that yes, my schedule IS unrealistic and if a hospital scheduler doesn’t like it, that’s just too bad… We’ll see how it goes, no one has cared when I’ve mentioned it before.)
So, this type of life isn’t new for us.
But, it’s scarier. Because before, there wasn’t the potential threat of our health system being so overwhelmed that there may not be a bed, ventilator or surgical team for Jaxon, for example.
With his complex hydrocephalus, there is a chance one or both of his active VP shunts could fail at ANY TIME. Literally 5 minutes from now maybe. It is unpredictable and very real, with 4 brain surgeries and 7 hospitalizations for this issue in the past 5 months alone. Many people don’t seem to understand when I say we live with this threat every day – it’s true.
During regular times, there’s always a fear we won’t be able to get to the hospital fast enough. Twice now, within minutes of getting there, Jaxon has had to be rushed to the trauma room in ER and emergently intubated, because his heart rate and breathing were so low (due to increased brain pressure from the shunt failure). That’s twice in the last 4 months…
And now, with COVID-19, the fear is also VERY real that should this emergency happen again, there may not be the resources that he needs available in the moments he needs them. Hours or minutes of delay could be life or death.
THANKFULLY, where I live, this is NOT our reality right now. BC has done an excellent job (in my opinion) of flattening our curve so that our hospitals are not overwhelmed with cases and we have plenty of open beds available, at least for now. This is incredibly reassuring to me as a parent of medically complex children.
I can only hope it will stay this way so that our system doesn’t get overwhelmed.
So for those who think the measures taken have been an “overreaction,” you need to realize that the result APPEARING like an overreaction is the ENTIRE POINT.
If it didn’t LOOK like we overreacted, the outcome then becomes very different.
And it’s not just my kid’s issues. It’s people who get in car accidents and need emergency care. It’s heart attacks, strokes, sports injuries, work accidents – all sorts of other “normal, regular” emergencies that happen. With a system overloaded by COVID-19, people in these sort of “everyday situations” would die unnecessarily due to lack of resources.
So STAY THE F HOME and WASH YER DANG HANDS.
The Good Parts of Quarantine Life
Fears aside, like I said before, this quarantine life does have an upside too.
Mostly? Pajamas.
Wine. Time to have 3 coffees a day. Cooking at home and eating healthier. Realizing how lucky we are and being thankful for all we have (like that we both still have jobs, even though it’s tough to manage 24/7 care of the boys with me working at night).
And doing all that in pajamas, basically.
The quarantine/isolation/distancing/whatever it’s called where I live due to COVID-19 has both changed my life in many ways, and almost not at all.
The big one is that I’m not running the boys to 1-3 appointments every single day, rushing around, spending most our day in the car, no time (or restful opportunity) for them to nap, rushing through meals, feeling guilty about not doing enough PT and OT due to being out at the hospital for appointments, or quite frankly, at some that are just a waste of time, yet seem obligatory.
SO THAT’S NICE.
I am LOVING all the time at home. Sometimes it feels a bit prison-y but mostly, I’m just glad to not have to pack up their mountains of stuff, feeding tubes, etc and break my back all day lifting them up and down stairs, in and out of the car, stroller, etc.
It’s a much slower pace of life, being at home, and I love it. (Although I really need it to be over soon cuz they also need to get back to physio/other therapies and I need to buy some new bras like ASAPPPPP ok. Thx.)
