Tie-dye Vans shoes strapped on wheelchair footplates
Advocacy, Health

Tie-dyed hope

What a couple of weeks! Two weeks ago I was driving around a Vaccinate the Vulnerable rally and now I’m cautiously hopeful.

All of my direct support staff, including my parents, received their first COVID vaccine shots within the past couple weeks. On Wednesday, rare diseases and other disabilities were added to the eligibility list in Minnesota. You may not be aware of this, but kernicterus is a rare condition which now qualifies me. I officially #GotMyShot!

Still disappointed that people with disabilities on Medicaid receiving home and community-based services weren’t added much sooner to the eligibility list. It’s been a stressful year where my staff have had COVID scares and had to stay away from me to protect my health and safety. I think there are only about 35,000 of us in Minnesota who receive Medicaid waivers and care in our homes, so the fact that those of us living in our most integrated settings weren’t included sooner, is mind-boggling. More info and register for the Vaccine Connector in Minnesota

Looking forward to us all having our second vaccines by the end of March and very excited for it to be safe now for one of my helpers who needed to stay away this past year to come back and work with me again. Annie – get ready for me to kick your butt in chess! I love playing chess with Annie and it’s one of the things I’ve missed most this year.

Other fun news to share – check out my new shoes! Custom designed by me! And, it’s in the 60s (Fahrenheit for my international friends) today in Minnesota. It’s March, so it may snow by Monday.

Hopeful for spring; hopeful for shots in arm; hopeful for going to a soccer or baseball game; and hopeful for live music! I’m ready to dance wildly again!

We’re not there yet, though, so #WearYourMask #WashYourHands #SafeDistance – don’t blow it in the 90th minute of the match! At least I hope we’re in the last minutes of the COVID soccer match!

Justin laughing, outside on deck, trees behind
Me on our back deck showing off my vaccinated arm, soaking up some sun and watching the snow melt!

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3 thoughts on “Tie-dyed hope”

  1. Congrats on your first vaccine; you’re in good company, my friend! And get ready for a queen’s gambit, perhaps…don’t worry, I still can’t figure it out! I’m excited to try to beat you, Justin.


  2. Justin, your shoes are real cool, like you, of course!
    I’m so ready to watch you kick-me-to-the curb in chess with those rainbow lookers.
    Did you learn the “queen’s gambit” over the past year? Not me—too heady for me!


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