My husband, Owen, and I grew up in St. Louis and currently live in Silver Spring, MD. Owen and I will be celebrating our 17th anniversary this year, the same year we both turn 40! We’ve have done so much together – Peace Corps, have an amazing 6- year-old son named Leo, bought a house, traveled to approximately 20 countries.
For the past 15 years, I worked with kids ages 0-3 with disabilities as an early interventionist. I mentored their parents and helped get them the resources they needed. Owen works in international development, mostly focused on natural resource management and climate change in developing countries.
I used to have a lot of hobbies – art, crafts, travel, cooking, reading. The most challenging thing has been losing the use of my hands, but I’m still finding ways to make it work. Another difficult thing about ALS is that it’s invisible to the rest of the world.
My Brigance Brigade Foundation PALS Grant helped make our home more accessible. Our house used to have a few steps from the outside, and two into the living room. Without a ramp, I would be cut off from my family gathering space, our backyard and exiting the house. The ramp and other modifications give me the freedom to wheel up into the living room to spend time with family and friends. The ramp outside lets me go outside to play with my son, sit in the backyard and read, and go on walks.
Abby’s diagnosis in Oct 2019 was by far the hardest news I’ve ever received. It took about six months to even begin to come to terms with it. I’d say my biggest challenge has been learning to cope with the grief while needing to take on everything Abby used to do. I found myself with a terminally ill wife, a 5-year-old son, the COVID-19 pandemic, a full-time job I was now doing from home, a house to take care of, and on and on. Not to mention getting legal paperwork completed, home renovations, getting other equipment (wheelchair, lift, etc.), and figuring out how to pay for it all. It obviously hasn’t been easy, and some days I wonder how much longer I’ll be able to keep this all up.
But interestingly enough, the COVID-19 pandemic gave us the gift of all being able to be together. We’ve been able to spend a lot of time together and have worked out a system for friends and family to visit.