It has become so easy for me to be so wrapped up in my own experiences that I fail to see the bigger picture. I feel like I’m constantly looking for it, but over and over again, I’m short sighted. Part of that is due to the lens through which I see the world now, shaped by my experiences as a special needs parent.
I want to see past my own scope and consider how my words and actions affect others, but I’m consumed by thinking about my own feelings and family. It doesn’t always feel like my unique perspective is a choice, though.
Every little thing, and every big thing too, seems to have a different impact and meaning for a family like ours. Decisions that are important for everyone, like the school district where you live or the type of vehicle you drive, come with an entirely extra set of considerations for us.
In any situation, my brain defaults to what things will mean for Gage, and then how those choices will affect his little brother. And if I don’t automatically consider those things first, I’m flooded with guilt for neglecting to do so. I want to see past my own little world—my feelings, my family, my kids—but more often than not, it’s what consumes my thoughts.
Lately, it seems like my own little world has shrank significantly. Where will my focus lie when I’m confined to the walls of my home? Not surprisingly, I still have a narrowed perspective. I’m less worried about running out of toilet paper and more concerned with being able to fill prescriptions for seizure meds. I think about how we’ve spent the last five years trying to have as “normal” of a life as possible, intentionally saying yes to things, even when saying no is easier. And now we’re quickly reversing course, being extra cautious. It won’t be like this forever, but it is for now. For the time being, we’ll make extreme choices (or have them made for us) and say no, and do so without guilt or apology.
“Normal” may seem like a distant memory for many people right now. But I believe we will get to the other side of this eventually. Even that time in the future might be a new normal, with some major shifts in behavior and lasting impacts. I’m hopeful it will still include choosing to say yes and reconnecting with friends we haven’t seen in far too long. Special needs parenting is isolating enough. Connections and shared understanding have to be sought out.
What I do know is that we need each other. We’re not meant to do this alone. I’ve got to see past my own little world, because those connections are worth it. Considering how things affect more than just me and my family is equally important. The isolation that’s all too real must be combated with feeling seen and known, even if that’s only virtually. Maybe in the best case scenario, this crazy experience will bring us closer together, even as we’re separated physically.