The Kids Are Not All Right
The summer of 2019 is when we started our first GoFundMe. We had often had financial struggles before the summer of 2019, but those hot months found us languishing in a Children’s Hospital while our 2 year old son fought to keep 4 inoperable brain tumours from taking his life.
Friends and strangers alike — from all over the world — were our port in this storm. Donations and prayers and kind words on Facebook posts. Harrison’s fight was our fight was their fight. Hashtag Harrison Strong.
Barely 6 months later, Covid began to spread and we had to reduce our contact with the outside world only to hospital appointments. Not only was there no vaccine for a disease running rampant, our little boy had started a radical chemotherapy treatment that might stop those brain tumours in their tracks, in a trade that would leave him incredibly immunocompromised. His little sister Evie was still a baby, blissfully unaware of the world that she’d been brought into.
For that first year, it felt like everybody banded together because we were all in the same boat. We were all struggling to keep working, pay bills, raise our kids and keep them safe. The same $20 got passed between all of us like a joint at a party that said, “you belong, you’re gonna make it.”
Most of us masked up, all of us mourned as death tolls rose. Misinformation *was* out there, claims of a “plandemic”, resistance to community sacrifice — but they felt like outliers. They still annoyed the shit out of me, though, so I naively thought if I kept using social media — my only accessible platform — to share our stories and experiences in isolation, it would make a difference. Surely the faces of my children stuck at home, surely my tiny son in a hospital gown could move molehills. Surely my life-saving hysterectomy that got delayed by months, surely my nearly dying of a subsequent blood clot in a swamped ER would help them see the light.
Time passed, the vaccine came, hope burst forth — and nothing changed.
You know what they did see, though? Tyranny.
You know what they did move for? A trucker convoy. In-person church services. A flight to Mexico, which was still a “free country.”
You know whose GoFundMe made hundreds of thousands of dollars in a matter of days while my family couldn’t pay rent or buy food? A pastor whose family got “evicted” from a Ronald McDonald House (read: simply, peacefully relocated) because they refused to wear masks or be vaccinated around sick kids. Their OWN sick kid.
Why should I expect them to care about mine?
I feel like I’m living in an alternate reality. Nearly 3 years Inside, 3 birthdays and Christmases alone — 1,000 days scrolling my phone and watching everyone be perfectly fine living without us is enough to make me question everything. (And I’m only seeing half of the people I used to; my fierce protection of my children and their human right to safe accessibility has cost me a lot of friends.)
I am online sharing my highs and lows because that’s the only way I can get them to see me, see us. But no one sees how my son is covered in scabs from his medication, how he can’t tell us where something hurts, how he covers his ears and runs away as soon as he sees his sister. No one sees how my daughter gets so excited to go in the car, only to be told that the park has too many kids, or discover that the beach is way noisier than she can process. No one sees how she screams when we pull in the driveway because she doesn’t want to go back inside the house. No one sees the meltdowns, the wailing, the sleep regressions, the lack of social skills, the knots in the hair, the iPad as a third parent when we just can’t function anymore. Eating another microwave pizza in the bathtub because eating and THEN standing in the shower is too exhausting, getting into bed before 8pm just so the day can be as done as we are.
And we — these precious, hot messes — are expected to enter the school system in 19 days? Are you kidding me? This is one of the biggest milestones that we should have been excited about all summer, but all we can think is:
Will they listen and learn? Will they make friends? Will their teachers understand? Will anyone change their diaper? Will they get sick? Will they catch up? Will they have fun? Will they run away? Will their peers be kind? Will we get called to pick them up because they’re too much? Will they know we still love them? Will they finally be happy?
I’m trying not to let my anger turn into bitterness, I really am. I didn’t and don’t expect people to stop their lives forever. It’s just that some of them never tried. Or they did all the right things for awhile, and then the government said it was time to “live with Covid” so they carpe’d their diem and moved on.
We don’t fit in this new world. We are disabled, neurodivergent, sick and traumatized as hell. Our lives should have mattered, but you know the old saying. Out of sight, out of mind.