I know I’ve been a little unhinged lately. I know it when my friends start reaching out, “just checking in” and when people start asking if I’ve thought about getting a job or going back to school. I know it when at the end of the day, I still have my pajamas on and my iPhone tells me that I’ve spent HOURS on social media. I’m fighting with strangers and obsessively watching the news and finding myself checking my Twitter feed while sitting on the toilet. I don’t want to miss anything — as if my not being there is somehow going to lead to worse news.

Last night I had a ALD Connect Community Call on my calendar and logged on begrudgingly because I was going to miss time in front of the evening news. As the facilitator of these calls, I’m responsible for reminding callers that we are not to discuss the specifics of the phone calls. I won’t share details, but I will tell you that I got off the call in exhausted/relieved/happy tears. And, with a renewed sense of purpose. An hour and a half with members of the ALD community is what I needed to remind me of what’s really important.

My frustration with our current political situation/pandemic nightmare is that I’ve felt like I have no control. It’s coming close to how I used to feel about ALD. For years I would look at my son and his challenges and wonder why this had happened and why we couldn’t fix it. I struggled with making sense of all the WHYS.

Then I wrote Smiles and Duct Tape and Jack’s story started getting out to the ALD world. In sharing our messy journey, I realized that I wasn’t just telling our story, I was connecting to the community who understood our disease. People who knew what a Loes score was and what GVHD stands for. People who knew that we were unlucky not to have had an early diagnosis, but lucky that Jack never lost his vision and hearing.

It was something that I didn’t know I had longed for for years — connection. Being with our community helped me process what we were experiencing, learn practical things that have helped us and allowed me to help others Giving back —- helping others — is powerful. It got me from a place of feeling sorry for our family to feeling proud of our family and it’s strength.

Talking last night with several other ALD families, I realized for the first time in a while I was thinking about something other than when we could leave the house without worry or what will happen on November 3rd. It reminded me that the world doesn’t always make sense and we need to focus on what we can control. As much has I have – on some level – enjoyed getting feisty with non-mask wearing/virus deniers on social media, I know that I’m not going to change anyone’s mind.* I need to get back to doing something positive, something helpful — connecting — to our ALD community, the special needs community, to our MAPSO community, to our family.

I’m still wondering if it’s time to consider getting a job or going back to school. Writing, coaching, counseling, who knows? But, today, before even checking the overnight news, I was on my computer looking up ideas. Not sure if I will dive in, but it sure was a nice distraction.

Thanks to my friends — new and old — who were on that call last night and helped me refocus my energy. It’s noon and I have clothes on, have run some errands and haven’t yet gotten into any debates on social media.

Love, Jess

* I will still block anyone who is spreading misinformation. And, I encourage everyone to VOTE. For Biden/Harris💙😷✌️