We lived in a small Vermont town. It reminded me of a cross between the towns in the Gilmore Girls’ Stars Hollow and the town in Lady and the Tramp. It was so small, it didn’t have a traffic light. It did, however, have a train station, and the Amtrak stopped there twice a day as well as multiple freight trains going back and forth from Canada. We had a few restaurants, a few shops, and a pharmacy or two. We had a movie theater, that played one movie, once a day, and the proprietor sold you the tickets from one window and turned 90 degrees to then sell you concessions out of another. There was a coffee shop that also served as a community center, a place to get the latest news, get a warm cup of coffee and a pastry while discussing everything from Cold War politics to sugaring season. I was convinced that if a stranger came into the middle of town and asked five people if they knew me and knew where I lived, that they would be able to find me. It was just a typical small town, full of characters and stories, and lovely to be a part of.
We lived in the area known as Hospital Hill, because it was situated around the hospital, on the hill. We lived on Church Street, which also had the Catholic Church. Our house was one of a few dozen Victorian houses that had been built in the turn of the last century, and had all of the original woodwork and tin ceilings. The houses on Hospital Hill shook slightly when the train went by. All of our houses had crooked pictures on the walls as a result and it was a mark of endearment to go and slightly adjust your neighbors’ pictures while you visiting, because they failed to notice that they were crooked anymore. All the kids from the neighboring areas trick-or-treated in our neighborhood because we were the only bona fide neighborhood in a very rural area. In the spring, local farmers would practice walking their oxen up and down our street so they could get used to side walks and man hole covers before marching in the Fourth of July Parade.
Our neighborhood was teeming with children, as almost all of the houses had recently turned over with young families who were willing to take on the sprawling houses with many repairs and large heating bills. There were over thirty children under the age of ten, and they were barefoot Bohemians in the summer time, going in and out of each others’ houses, climbing each others’ trees, drinking from each others’ garden hoses. Really. It sounds like the 1950s, but this was the place where we lived, where people knew you and loved you and your lives were interwoven in a sweet and meaningful way.
One day, a few months after Wendy had originally gotten sick and before her kidney transplant, a neighbor whom I adore, saw me working in the yard and came over. I was pulling out weeds in the front garden bed, trying to give the day lilies some room to grow. She came over to hug me, and see how I was doing. We had been given a series of casseroles and meatloaves, and we were starting to recover from the trauma that we all had suffered earlier that summer, licking our wounds as it were.
She said something that shocked me. She said, “I’m just having such a hard time getting over how much you have lost.”
I’m sorry, what?
She thought of all of our time and money that we had to spend, and would continue to spend, keeping Wendy healthy, with fewer options for vacations, sleepovers, or summer camps. That we would have to give medications every few hours, wake up at 2 am every morning, check blood sugar, etc. Perhaps she thought about the medical hurdles in the future…..what she thought of were our limitations.
But, I didn’t think of our trials that way at all. I felt incredibly lucky. My daughter was still alive, we had a great team of doctors and nurses, our family and community had rallied around us, and we had made it home. Wendy was happy and was starting to resume the things she did before the initial onset of her illness: bike riding, swimming, or playing with her friends. Honestly, I thought of it as a victory, not a defeat.
People say stupid things.
Same town, a year earlier. I had suffered a miscarriage, early enough in the pregnancy that I wasn’t showing and I had only told a few key friends and loved ones. When I miscarried, those key friends and loved ones sent flowers that were accompanied by both condolence and get well soon cards. We only had one florist in town, who was located right on Main Street. The proprietor also sold ice cream from a side window in the summertime and took your photos if you needed them for a passport.
On the same day, the floral delivery person made three deliveries to our house. On the third one, she asked what had happened. I told her that I had miscarried. And after she said she was sorry, she then said, “Well…Better Luck Next Time.”
People say stupid things.
Sadly, it happens all the time, no matter the person, the location, or the situation. I don’t want to single out my tiny Vermont town, because it happened everywhere (and continues to happen.)
Many times, when it comes to Wendy’s illness, I get the “Oh, that’s terrible” or “I’m sorry.” These are perfectly acceptable things to say. It is terrible. But just as often I get the people who say something like, “How do you deal with this?” or “I could never do what you do every day” or “I would need therapy if I were you.”
How do I deal with people who say these things? The first thing I do is instantly forgive them. Really. They didn’t mean to convey that my reality is incomprehensible to them and that I live a horror movie version of life. I know that this is the first thing that came to their minds and flew out of their mouths. Their intention was good, but their delivery was bad.
Then I figure out how to respond. It has taken me a long time to find the right words.
The answer to those statements is, “Of course you can. We do what we can with what we’ve got.” or “There is no other alternative, so we do what we have to do.” Sometimes I say, “We never know what we signed up for as parents, but we signed up for all of it.”
People say stupid things.
My one pet peeve, though, the thing that drives me crazy, is when people try to make sense of the illness and tell me that this has all happened for a reason.
Then, after forgiving them and taking a breath, I tell them that I don’t agree with them.
I don’t believe that my daughter suffering happened for a reason, I say. I don’t believe that there is a plan in place that includes children in pain. I also don’t believe that either she or I have done anything wrong and are being punished for it. Bad things just happen sometimes.
However, I say, I do believe that you can make the best out of every situation, and that you can create good from the bad, in a picking-up-the-pieces kind of way.
I don’t believe that there is a happily ever after scenario for a lot of chronically ill kids and their parents, but I do believe that you can still live a good and happy life with what you have, and if you don’t like something that you can change, then you need to change it.
People don’t always know what to do with this answer. And that’s ok, it took me many years to formulate it, it will take them some time too.
You might wonder what the right thing to say is. Saying your sorry, while slightly off the mark, is fine. You didn’t do anything, so there’s nothing to be sorry about. Rather than saying “I don’t know how you do it”, say rather, “I admire your strength and determination,” Or “I know that you have a lot of obstacles, but I can see you are working hard to overcome them.” You can also say, “Your child is lucky to have a parent like you.” These are all things that empower the parent.
I love when I call a friend to say that Wendy is going into the hospital and she says, “I’m here for you and whatever you need.” And I know she means it. It’s important to feel supported.
It only takes a little thought and consideration to transform a statement from degrading to uplifting and I don’t think it’s wrong as a parent of a chronically ill kid to redirect a misguided statement. I don’t do it all the time, honestly I am sometimes still caught off guard when it happens. It’s amazing what people say without thinking.
People say stupid things, but they don’t have to. They shouldn’t.
We can all do better.