Four Years Gone

In the next room, sounds of school float out my daughter’s bedroom door.

“When we’re done with this, we can take a break. But I need you to choose which one is your name.”

It’s been nearly a full year of these sounds. For the first part of it, I had to sit next to her. Then I learned that if I just hovered out of sight, she would perform better. I may have also failed high school gym again (I did not do well on the final.)

Every day for the past year, I’ve watched her teachers and staff go above and beyond their call of duty. Her teacher had to rethink their entire curriculum, which was based on community outings and job training. They learned more about Microsoft Teams than they ever dreamed, and how to keep classroom routines despite constant changes. They have been there 135%, meeting every challenge.

Yet I can’t help but think of this year as lost.

Not because of learning. When Maura was in preschool, her teacher told the parents how we shouldn’t put an end date on learning. Our kids could still learn and grow well into adulthood. No, it was the idea that this was her last year of traditional school.

She’s lost school. I lost school. We lost time that in her world cannot be made up.

Last year, I had this idea in my head that we had four years left until I had to have a plan for Maura’s future. One year of high school and three years of transition program until I had to have a solution of what Maura would do all day. How we would co-exist together all day in the same house. Four years to research day programs and jobs for someone at Maura’s level.

I’m not saying we hadn’t thought of these things. We have. I know the one day program has a three year waiting list, for instance. We’ve discussed if Maura would be independent enough for a mother-in-law style apartment. We’ve considered starting a family business where Maura could work with us but then have a place to take breaks when needed.

We just thought we had four more years.

Suddenly, Maura was home with me all the time. We do not get respite of any sort, nor do we have in home help. Maura receives zero benefits from the state despite being labeled as the highest level of neediness by disability services. We do not have family in state to lean on. It was all us, all the time.

As I told a friend, “Covid made “the future” come real quick for us.”

At the beginning, and even over the summer, it was about surviving these weeks of abnormality before we got back to real life and reclaimed normal. One day I realized that this was it, this was now our normal. We were never getting back to the way things were, so how was I going to make this work?

Dear reader, this is the part where I should be listing all the changes I made to incorporate our new status quo. But I won’t be, because I haven’t done much. Because there is a fucking pandemic and we’re just trying to stay alive with some of our mental health in tact and winter can be extra depressing for me.

But now spring is winking at me from afar, and I’m feeling more productive. I’m looking at how we can get Maura involved more in everyday life, which will help her gain more independence, which is always a goal. I am also figuring out how I can do my own thing with her at home 24/7.

And while our future came suddenly, we also still have time to figure things out. We’re figuring it’ll be another year before the world is a safe enough place for Maura to wander freely again, between our state’s slow vaccine roll out and various reports from epidemiologists. Yes, I know I may be overestimating the timeline, but I’d rather overestimate – then, if we’re allowed to go outside again with bare faces and the ability to touch all the things, then it’s a happy surprise, and not another covid disappointment.

We are making plans and changes, because we are adaptable, because we are realists. The world has changed, what’s the point in whining about what has happened? Instead, it’s a chance to veer off into a new direction, one where we can maybe be a little bit more laid back and happier and maybe do what we actually want to do. Time to embrace our fully ridiculous selves*.

The future is now. We can decide how good it will be.

[Image description – a yellow alarm clock with a darker yellow background] Photo by KoolShooters on Pexels.com

*”fully ridiculous selves” is a paraphrase from Catherine O’Hara’s 2020 Emmy award speech, where she will be “forever grateful to Eugene and Daniel Levy for bestowing me the opportunity to play a woman of a certain age, my age, who gets to fully be her ridiculous self.” Which is my new goal in life, to fully be my ridiculous self.

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