2020 was a year of more support, love and community than I have ever seen…

So many felt divided and isolated from their people this last year, as we did, but I have also felt connected to my people in new ways. Connected to Rich and the kids, connected to my parents, sister, aunts and uncles, connected to my cousins, friends and connected more than ever, to my community. As you have seen from other posts, all of these groups and individuals have showed up for us on our journey. I am deeply and dearly thankful to 2020; it was the year I finally reached out for more help. I feel less alone in our ALS journey, from to the courage I have gained to share our story. 

Amongst the overwhelming greatness, 2020 definitely had it’s challenges. But I continue to focus on the small details and find joy in those little moments each day. If I think of the losses last year has brought as a whole, it is overwhelming and upsetting, but I always return to my motto of “One Day at a Time”.  

Due to fatigue and slowed mobility, Rich is becoming more dependent. I strive to be there for him through every step.  I am in the midst of caring for a whole lot of things, and although work is my love, my family is more important. I have made the choice to let go of work temporarily, and it has not been easy. I love the families I support through my work as an early intervention registered nurse. 

Our journey to slow down and hopefully stop Rich’s progression is still underway and I hope one day to share all of the treatments we are trying or have tried, most not covered by insurance. Again, thanks to our fundraising efforts, we have been able to continue these incredibly costly appointments.

If all continues as planned, we will be sleeping back in OUR HOME on Thursday! This is a huge relief to us ALL. I cannot wait for everyone, especially the kids, to have their own spaces back. Things will be a bit different, with Rich’s office being in our bedroom, but without an addition, this is what worked the best. I hope someday to finish our basement so that the kids can have a big play space and maybe a craft space for myself! The basement is just a big dream, the kitchen is the next priority and plans are starting to get underway for this. 

2021 holds a lot of uncertainty for us, but we will continue to seek joy where we can and continue to focus on One Day at a Time. Fundraising will remain open to those who are able to give. Like I said, this allows us to continue medical treatments, it allows me to step back from work and focus on being a caregiver and allows us to plan our kitchen updates to increase Rich’s and my own quality of life even further than the work that has been done. 

Living life one day at a time,

Leah