04/22/2026
While I am obviously aware that Tom now lives with a disability, specifically mobility challenges, I am prone to forgetting (or maybe in denial?) that his disability is because he is sick.
Disability can stem from various sources for example:
1. You can be born with a disability
2. You could have had an accident
3. It may be a part of aging
4. Or caused by a disease
In Tom's case he has a neurodegenerative disease that causes his disability, and by its nature of being degenerative his symptoms will continue to get worse.
You know how when you live with your kids, you don't notice how they have grown, until you see a picture from a few months ago?
It is the same with a neurodegenerative disease. In this case we didn't notice the cumulative changes at home, but when we compared our trip back in December to spring break it highlighted that we need to implement new tools to provide Tom with better support going forward.
For me this brings up grief, sadness, anger and a general feeling of overwhelm. I had just gotten used to the last routine and it is time to change again.
I had wanted to enjoy this precious time with my family, but the disease made it hard. And I spent most of the trip in survival mode. This certainly isn't the accessible travel inspo post I had hoped/intended to write, but it is the honest version of our spring break.
Since we got home 2 weeks ago, my inclination has been to curl up in a ball in bed. While obviously not the best long term solution, I do think that I needed to sit with my grief, before I could pick myself up and keep going.
It feels scary to share this side of my life, but it is my reality of living with and loving someone with a neurodegenerative disease.
And my greatest hope is that if you or a loved one is ill, that you know that you are not alone in these feelings.
