Getting It Together
Update: Since this column was written, the injured man has passed away. Our condolences go out to his family.
A horrible tragedy has occurred within Cameron’s school community. The father of a second grade student was critically injured, and his life hangs in the balance. This is a man I knew by sight but not by name. I often saw him in the afternoons when he would come to pick up his son. Prior to pick-up time, this man would regularly be seen running on the roads near the school, as he got his workout in while waiting for dismissal time. Since I would see him after these workouts, and I didn’t know him by name, I would affectionately refer to him as “Sweaty Runner Guy.” Who could we ask to help with Parents’ Association events when our usual suspects were spread too thin? “Why don’t we ask Sweaty Runner Guy?” I would suggest. The nickname was not meant in a mean-spirited way, and everyone knew who I was referring to, as he was such a regular presence at school.
Last Tuesday, this man who was the epitome of a healthy lifestyle was hit by a bus while running near the school.
I find this so tragic on many different levels. The stark reality is that life is unpredictable. I’m sure this young, uber-healthy father never in his wildest dreams imagined that being hit by a bus was in the cards for him. But the cold, hard truth is life is fragile. And as difficult as it is to face the death of a loved one, that difficulty is only magnified by the administrative nightmare that often follows the Grim Reaper’s visit. Then, factor in a surviving child with special needs, and your mind really starts to swim. No wonder so many of us put off planning for the eventuality of our own death. But isn’t taking care of these details the very least we can do for our surviving loved ones?
I’m writing this column as a lecture to myself (and my husband). For more than a decade, we’ve brought up the subject of death administration, but never gone much further than general discussions. It’s a hard subject to deal with! Who would take care of our children? We have no family members living near us. Do we subject our children to relocation to another state or country (my husband’s family lives in Europe) in addition to being subjected to the loss of their parents? And that’s just one of the issues we’re left scratching our heads over. As Liane Kupferberg Carter noted in her column, “Seeing Clearly ,” most special needs parents simply feel as if they must live forever. But truthfully, the more you think you need to live forever, the more you need to plan for your death.
So where does one even begin? I remember a few months back hearing a segment on NPR  about this very subject. A woman named Chanel Reynolds , who lost her husband and was left to deal with the nightmarish administration of his death, started a website to give the rest of us a place to start. The website is aptly named Get Your Shit Together! —a name that reflects the importance of getting down to the nitty gritty. As Reynolds notes on the site, “The reality of my financial situation hit me like a ton of bricks: Our income immediately went from ‘healthy’ to ‘zero,’ we did not have an emergency fund, our life insurance policy hadn’t been updated in five years, we had no disability insurance. Without short term help from friends and family and the life insurance that came later, I would have quickly lost everything, including my sanity. I was frighteningly vulnerable, it’s embarrassing, but it’s true. And it is true for many of you.” And—as far as I know—she doesn’t have a kid with special needs.
I’m sure I’m not the only parent out there that is so focused on taking care of the day-to-day drama that imagining the drama without being in the driver’s seat is unfathomable. Everyone needs to be prepared for the inevitable. Those of us with children with special needs have even more preparation to do, and very important reasons to do it. So on top of all you do, take some time and figure out who would do what you do if you were unable to do it anymore. Think of planning for your death as insurance—something you hope you will never need, but can help avert disaster if you do. Then keep working on that living forever thing.