I am sad to say that the world has lost a tender heart.
His name was Michael, he was 31 years old, and he was a resident at the group home where I volunteer. He had Down Syndrome, but that wasn't what defined him. He was great with a glue stick. He adored macaroni. He was enthusiastic about exercise. And he was a volunteer himself - I would often take him down to the animal shelter where we walked some of the dogs.
But this is not a post about Michael. This is a post about the people he left behind.
When you work at a residence like this, you always know in the back of your mind that this is what can happen. A genetic disorder such as Down Syndrome has not just mental defects, but physical ones as well. In the end, it wasn't his mind that failed Michael, it was his heart. And his heart had been giving him trouble for some time. But when I kissed him goodbye as they loaded him into the ambulance last week, I didn't let the thought in. If I had, I might have hugged him harder, longer. If I had, my last words to him probably wouldn't have been "See you on taco night."
Three days later, he was dead.
And we, the staff, were devastated. But we had more important things to do than grieve: we had to help the other residents not just come to terms with death, but understand what it means.
The lovely and talented Queen of Spain just wrote a great post about explaining death to kids, but these aren't children. Developmentally, they may be a lot like children, but in terms of life experience, they're like wizened octogenarians. They've fought wars of discrimination, they live in institutions, they're in and out of hospitals, they've watched friends and family disappear from their lives, they've been denied what others might consider the fundamentals of life. They are old souls in naive bodies.
And when their friend disappears suddenly, they want to know why.
But death is one of those slippery subjects. I have a degree in psychology and took several courses in death and dying, but I still don't know what to say to them.
The mood in the house is eerie; there are no tears, but there is quiet, all-encompassing quiet.
I go to the kitchen and get to work. I am making brownies because brownies are the best comfort I know how to give.
Soon the residents join me. They are still quiet, but inquisitive.
Annie says to me Michael is not coming back. We took the sheets off his bed.
I know, I tell her. Does that make you sad?
Well, she says, I think he should still keep a bed because maybe he'll still be tired.
Michael is dead, Annie. Do you know what that means?
And then Antwone, a new resident, chimes in with When you get dead, you don't ever come back because you go in the ground and you don't need to sleep anymore because your eyes are always closed anyway.
Oh, says Annie, and I don't know if this has helped her or not. Are the brownies for us?
I thought it would be nice if we made brownies to bring to Michael's funeral. Do you want to help me?
I'll help you, says Peter, and he arms himself with a wooden spoon.
So...we're not going to eat the brownies? Annie has a sweet tooth.
Not yet, I tell her. When somebody dies their friends and family are very sad because they miss them so much. To help them feel better, sometimes people give them good food.
But Michael loves tacos, not brownies!
The brownies are not for Michael, they're for the people at Michael's funeral. When people are dead, they don't eat or sleep anymore.
Not even Pringles? (Peter loves Pringles).
Not even Pringles. When you're dead, your body stops working. When we go to the funeral, we will see Michael's body, but it won't be working. He won't be talking or eating or watching TV. We have to say goodbye to his body because after the funeral we won't ever see it again. That's why he won't need his bed. But do you know where Michael will still exist?
In pictures! someone shouted.
Yes, in pictures, I say, and also in our memories. We can remember Michael because we loved him so much.
So we made our brownies, and all agreed that they looked yummy and that they would make Michael's Mom feel loved.
And then we had subdued craft time, and we all made flowers out of tissue paper and drew memories of Michael on the petals. We had a lot of hugs.
Later, at home with bags of tissue-paper flowers, I cried over the pictures: Michael watching Canadian Idol, Michael playing Twister, Michael watering the plants, Michael helping Peter to make his bed. Grief is different for these people, but they have clearly illustrated that the loss of Michael leaves a big hole in their lives, and I don't know how to heal it.
The next day, seeing Michael's coffin overflow with our flowers, I thought about what his loss meant to me. I thought how sad it was that such a good person was taken so early. I thought how sad it was how none of had the chance to say goodbye, and how he had slipped away quietly, and alone. I thought about never hearing his greeting again, never admiring his leaf collection again, never listening to him sing Aerosmith songs as we did the dishes again. Ever, ever again.
Yes, a hole. A definite hole in my heart. Our society would not call his a "tragic" death - he didn't leave behind small children, he wasn't a hero, he didn't contribute in the normal way that people do. But let me tell you - Michael was a special person, and he made a difference in a lot of lives. He made a difference in mine.
The plan was to attend the reception after the funeral, but we never did make it. The gang was restless after the funeral. Annie cried because she'd tried to shake Michael awake and Michael hadn't woken. It was finally sinking in: Michael is dead.
The brownies never made it to the reception either, but that's okay. The brownies were made to make Michael's family feel better, and that's what they did. We were Michael's family. So we sat, one big family, in a van in the funeral home's parking lot, and ate brownies, and remembered our friend and brother.