By Cathy Jameson
Businesses have closed.
Therapies have changed.
Schools have shut down.
Teaching and learning has gone online.
If you’d told me we’d be living like this a year ago I would’ve balked and said that 2020 sounded like a nightmare. We don’t have too many nightmare stories here on AofA. But they exist. When Managing Editor Kim finds them, she’ll post them. Never easy to read, it’s important that she continues to share them. They are a glaring reality families in our community face. It wasn’t until this week that I looked back and realized that our family has recently experienced a few of them ourselves thanks to COVID19.
When we were asked to stay home for 2 weeks to help flatten the curve, I wasn’t worried about my family. My heart immediately went out to other special needs families though. I hoped that they would be okay and that the temporary break in their daily routine wouldn’t cause too much disruption. My hopefully-ever-after self personally didn’t mind the break and actually welcomed putting life outside our house on hold for a moment. I love random stay-at-home days! Plus, Ronan had supports in place that would not be interrupted, so we could continue life as we knew it from home.
For the most part, that worked.
When the country didn’t open the following month, I took it in stride that some parts of life were going to change a tad. It wasn’t too terrible, and I dealt with minor obstacles like I would’ve normally. Not until we faced massive delays in treating a medical issue for Ronan did my usually optimistic outlook take a hit.
Ronan had been on the schedule for a surgery in March. It had been on the books prior to the lockdown and would actually be two surgeries coordinated with two medical teams. At the time, we were told he was top of the list, a priority patient, one who absolutely needed to be seen as soon as possible. He’d even moved other patients down the list because of the severity of his condition. Imagine my shock and concern when his team called and said that the procedures were canceled with no word on when they’d be able to reschedule the OR. I tried everything to get him back on the books, but our hands were tied. The providers tried everything they could, too, but their hands were also tied. COVID19 had become the hospital’s priority, and Ronan’s case was now deemed an elective procedure. His, and other “non-emergency” cases, would not be considered. No exceptions.
Ronan still deals with that medical issue, but we are able to manage it better and from home. I’m glad for that. But the longer life has not returned to what it once was, other problems have come up. And we’re once again facing the fact that Ronan’s prescribed medically-necessary procedures are taking a back seat. Other patients, those who also had to wait months to be seen, are now taking priority. If I had to guess, not all of them are related to COVID19 the illness directly, but if there’s anything to blame it’s COVID19. The backlog created by it has interrupted getting routine follow-ups done, completing in-office procedures, and yearly evaluations performed. Those, along with COVID19 restrictions, are keeping doctors and nurses hopping.
I can’t imagine the stress they are under.
As much as I hate to add to their stress, I will do just that. I have to advocate for my son and his needs. If that means being a nag when I call for updates, I’ll be a nag. If it means asking for more advice, I’ll ask for it. I’d rather be able to punch COVID19 right in the neck than be a jerk to the professionals helping me and my son. But punching COVID19 in the neck is obviously not possible, so while we live this on-going nightmare I’ll stick to what I am able to do.
I’ll keep Ronan as healthy, happy, and as safe as I have.
I’ll keep in constant contact with the doctors who care about him.
I’ll touch base with their staff who have control of that procedures calendar.
I’ll think out of the box one more time looking for alternative ideas until we can be seen (which is 4 months longer than usual).
And I’ll hope for the best while I fight these awful situations.
The situations I can’t control really can be the worst, but I’ll always hope. Somedays, it’s the only thing I can do.
Cathy Jameson is a Contributing Editor for Age of Autism.