The kindness of a stranger

Hey all! My updates have been few and far between because ALS is a beast and never stops, neither do growing kiddos, and apparently neither does this pandemic! 

I am currently working on Medicare and Masshealth applications with the help of CCALS (thank you!!) and it is a very draining process. We can add this to my long list of things I never thought I would be doing in my 20s for my partner. All of this complicated paperwork brings up a lot of feelings for many, many reasons: firstly, because if my mom were here, I would either be doing this by her side or I would be done with it by now because she was damn good at this kind of stuff! The reason I need to be dealing with all of these applications now is so that we can afford a PCA (personal care assistant) for Rich. As his needs continue to rise, my need to work continues to rise to cover the costs (no thank you to the US healthcare system) associated with this damn disease. Add in childcare costs, and I begin to think, “what is the point?!”

2022 has brought continued ALS disease progression and a stomach bug, but luckily we have avoided Covid. Working to keep my family safe feels like we are constantly in a game of whack-a-mole! February brings my birthday, which is going to hit different this year. It’s hard not to think about all that I’ve lost. No more restaurants or nights out with my love (well, not without tremendous work and modification), and no more celebrating with my mom. 

I am continuing to work my hardest at finding joy in all of the little things. One BIG thing that has brought me much joy, is a stranger–many strangers, really! Our GoFundMe was recently shared by a nurse (@redbeardRN) with a large following on Instagram and Facebook and that exposure of our story has taught even more people about ALS, who have offered their kindness in the form of words, thoughts, prayers and donations.

I am grateful for all who come across our story. Even if you don’t comment, or donate, it is important that you are learning about ALS and whenever you can, sharing and helping to advocate for people like us! 

Living one day at a time,

Leah