For such a tiny word, “if” can bring on monumental feelings. I know this all too well. “If” was actually a motivator of mine for doing everything, being everything, knowing everything, and fighting for everything I could, with what I could, for Tom.

“If” can bring on such guilt and regret. It can keep us in a space that is not healthy. When I lost the twins and then our son in the second trimester, I was consumed by the “what if’s”. What if I would have known more about a twin pregnancy and the signs of preterm labor, “what if’ I could have been a better advocate for them. “What if” I understood that Doctors are not all knowing and fell back on what is typical/normal or how their own experience could bias them in the care of patients. “What if” I trusted my gut more. I spent 10 years doing this until I got help and processed their losses. In my grief journey with the babies, I learned that sometimes terrible things happen. I learned that I did the best I could with the information I had.

When Tom was diagnosed, I used the experience of losing the babies to adjust how I went into his diagnosis. I vowed from the very beginning, that I would do whatever I could so that in the end, I would not “what if” myself for the rest of my life. Let’s be honest, do you think my OB was kept up at night for 10 years doing the “what if”?

I learned what I could. I spoke up when something didn’t seem right. I listened to that inner voice, which I would later refer to as my spidey sense, when it would tingle. I did not just accept the answers or suggestions of the medical community without doing my own research or asking lots of questions. I honestly didn’t care how I came off to them or anyone else because in the end, it would be me who would deal with the aftermath of ALS, not them. When I heard I was being “too much” I knew I was on the right track.

I took this approach for everything. When ALS made getting out harder for us, I got creative and brought the world to us. Others helped in that as well. We had two amazing concerts in our home thanks to a non-profit in my area called Swan Songs. I arranged a petting zoo to come in for the afternoon. We celebrated ever big and small holiday by decorating the master bedroom where Tom lived. I put a window bird feeder on the glass french doors so Tom could watch the birds in the backyard, and at one point a very determined squirrel that learned to use the nearby birdbath to launch himself into the birdfeeder. We even hosted a 70’s themed party in the backyard with drag queens that Tom and I actually missed thanks to a trip to the ER when Tom developed kidney stones, but the party continued.

I didn’t want this side of ALS to be filled with the “what ifs”. I applied the lessons I learned with the babies to Tom and ALS. I became the person I needed to be for him and our family. Do I struggle with “what if’s”, yes, there are some but not the ones that will keep me stuck in grief. I can say, I loved and gave Tom everything I could. I saved nothing for myself during the ALS years because it was all for him so I could emerge without the guilt or regret that can come with the “what if’s”. I paid the price for that and have spent the 2 1/2 years since his passing working on myself. There is so much more work to be done but I am living this life, like I did with Tom during the ALS years, in a way that when things are all done for me and I change my address as my Grandma used to say, I will have no “if’s”. I will have lived this second part of my life to the fullest. There will be no wondering about it.

All my love,

Lara