Which is better, having high expectations or low expectations? What about realistic expectations? ALS took so much from our family, but having the benefit of being reflective on the ALS journey, I can see some things it gave. I have always said that ALS gave us the gift of time. I know, how can I even say that with a disease that can move so rapidly. I can say it in the sense that when we found out that Tom’s death would be determined by the diagnosis, we had time to say all the things we needed to say. We had the conversations that without a terminal diagnosis, I am not sure we would have had, to the level we had them.

Another gift ALS gave was self-awareness. I can identify my limits faster these days that the ALS journey forced upon me and required me to figure out. I developed tools to deal with the disappointment and anger caused by a terminal disease. Tools like setting realistic expectations, learning to let go of disappointment faster, and just giving myself grace in difficult situations to name a few. Am I an expert at using these tools? Please, have you not figured me out yet, I am a walking/talking shit show most of the time, but I like to think, I am also a work in progress. I am much better than I was when Tom was diagnosed in 2016. I learned fairly early on that I needed to lower my expectations in some situations. Lowering them allowed me not to get my hopes up. Lowering them helped me from being disappointed all the time. I mean, learning that the person you loved and thought you would spend the rest of your life with was going to die from a horrible disease is one hell of a lesson in adjusting those expectations. Did I lower my expectations in all things, no, but I did begin to set more realistic ones. As I am writing this, I am realizing that we can’t talk about expectations without throwing in the idea of control. I am the first to say, I have some control issues, but again, my ALS journey with Tom forced me to adjust those control issues for self preservation. Living constantly upset and with extremely high anxiety is not healthy. Jeez, I think I have destroyed the regulation of my flight/flight response from the years if anxiety due to disappointment and anger.

So where is this blog about setting expectations coming from??? Well, let me tell you a story. In a few days, my niece will be married. As her Aunt, I am over the moon excited for her as she starts a new journey as a wife, and hopefully in the future a mother. I just love babies!!!! Where was I, oh yes, so she is actually having a destination wedding in Cancun this long weekend. I have been preparing and paying towards this weekend since May. Trey and I got up early yesterday morning, bags packed, dog’s had been dropped off at the pet resort the day before and we headed to the airport to start our 5 day vacation and destination wedding in Mexico. We even made it on the plane, but when the plane was backing away from the gate there was a mechanical problem. One that would take us back to the gate where everyone had to get off the plane. We knew this delay would cause us to miss our connecting flight to Mexico so we began to figure out a solution. Which in the end there was not a viable one that would get both of us there until Sunday with our original return flight home being on Tuesday. This was my very first time having this issue so was I fast at thinking through the problem, I wasn’t but the gate person helped us work through possible solutions. Was I great at dealing with the emotions of anger, fear and disappointment, no again! Remember when I said early my ability to regulate my fight/flight response, well yesterday was an example of this. Dealing with high emotional issues are very difficult. Like I said, my regulator on those things no longer works so yes, lots of anxiety going on at the airport.

I was so incredibly disappointed about this turn of events, as was my family. This was one of those opportunities I would finally be able to participate in. Something I was not able to do while we battled ALS. ALS and my caregiving to Tom along with a lack of outside help, meant we missed out on many family events/milestones. Now that I was physically able to participate and this situation being out of my control…was just too much. But, instead of beating myself up for days on end and letting my disappointment and the disappointment of my family feed my guilt for not being able to make it to such a special weekend, I am giving myself grace. I adjusted my expectations to being realistic as opposed to being too high. The plane’s mechanical issues were beyond my control. The limited, last minute available seats on flights to Mexico, were out of my control. I could control how I reacted to the disappointment and I could control how I moved forward.

This morning I woke, took a walk around my neighborhood and enjoyed the cooler weather. I reflected on how the old me would beat myself up for days, feeling guilty for things that were out of my control because I had set my expectations too high. As I finished my walk, I focused on what this weekend is, which is a beautiful bride, my niece, who will say “I do” on a beach in Mexico with family and friends looking on. I can be supportive and love her from my home just as I could in Mexico. This is me setting realistic expectations and using the tools in my toolbox to see my way out of the disappointment in a more healthier way. This is me seeing the bigger picture of what our trip to Mexico meant.

Love you more JuJu! I know Uncle Tom is absolutely watching from above and keeping an eye on eye on you as he is wishing you the best and probably will be keeping a close eye on your soon-to-be husband, because no one messes with his Julie!