I sat at a bar in my little home town of Dexter with two of my oldest and best friends a few weeks ago, its a new place, but really, an old place. It’s been there since we were just middle schoolers. It’s changed names and owners a few times, but it has always been a place, that I felt like home in. Now, that may make it seem like I frequent bars, I do not. And it may make it seem like I am a drinker, I am not. It is just a place, that I have always felt a part of. Until that night, sitting there with two of my best friends, that night I had never felt so out of place and completely alone.
We were surrounded by Dexter people, or people who have now made Dexter their home. People I have known for years now, people who know how I spend my time. But that night there was someone there who said something, something that has stuck with me ever since. He was talking about his former wife, and how she for the most part had cut ties with their mutual friends. I said, well, she’s still friends with me….his response is what I play over and over again in my head…..That’s because she feels sorry for you.
I looked to my left, and noticed my girls were listening, I waited for one of them to chime in……they didn’t. Unfortunately, neither did I. I left shortly later to go home and take care of Faith. I knew that she was the person I could talk to about this, she would make me feel better, because she understands the stupid things that people say, but the thought of telling her made me so sad.
She feels sorry for me…….
The next week, with this conversation fresh in my head Faith and I run into a parent from the school that Will and Faith go to. She knows me from Will and comments that she hasn’t met Faith. She says, in front of Faith, she’s the sick one, right? I ignore the question, introduce Faith and we walk away.
She’s the sick one……
That night Faith and I talked, about when people refer to her as being her illness…..That she wants to be more than the sick kid, that she doesn’t want that to be her definition.
We are in this entirely difficult position, we are definitely confined by the illness she has, and there are moments where it literally seems to control every area of our lives, but in no way, not even for a minute do we let it define who we are.
She is not an illness. She’s not the sick kid.
It’s entirely unrealistic to think that people won’t correlate Faith with being sick, or me with having to care for my sick child. But to let it define us, does who we are such an injustice.
Faith is a self defined, Book Nerd. She loves to read, and she loves art. She loves her dogs, and would rather spend time with her brother than just about anyone. She loves to watch mystery movies, and can often figure out the ending way before I do. She has two best friends, one is a famous football star, who has stuck with her since she was 4, and never once questioned Faith about her disease…..Then there is Addy…..who is more like a sister than a friend. Her cousins are her light and she laughs nearly every minute she’s with them…….and she has a baby brother and sister….that literally make her squeal with joy. She wants to grow up and be like my brothers girlfriend Amanda, her “most favorite person ever.”
Her great-grandfather turned 90 recently and they had a big party for him. When they left, as he always did, he reached into his pocket and pulled out some cash for the kids….Faith took that money to downtown Ann Arbor with her that evening. As we walked by some homeless people, Faith gave her money to one of the young men. The next night we saw that same young man smoking pot on the street with his friends.
One of her friends said, you probably paid for his drugs Faith. Her response reminds me, that while this illness controls so much of what we do, it also has shown us, taught us, a compassion that not many life experiences afford you.
“We don’t know his story. We don’t know why he’s homeless, or why he lives on the streets. People don’t choose this life. Maybe he fought in a war, maybe he has PTSD, maybe he’s sick…..maybe that marijuana is the only thing that will get him through the day today. If so I’m glad I could make life a little easier for him.”
This is my daughter, so Don’t feel sorry for me.
She’s not the sick kid.