It finally happened. It was a matter of time. I think the few people in our support network are burning out. Not all, but most. They are growing weary of hearing about Grace, and, frankly, I’m getting tired of talking about it. Last week’s email from my friend, the one regarding my absence from Facebook which must mean “our lives must have somehow become perfect and Grace must be all better now” just about broke my heart. Last summer, I told one of my friends that Grace was struggling with what then appeared to be bipolar disorder, and she simply said that she was familiar with mental illness. She expressed her sympathy, of course, but that’s all she wrote. I’ve not heard from her since; she’s Grace’s godmother, by the way. We were once the best of friends. Time and distance have gotten in the way of our once close kinship, but I’ll say this: If she contacted me in any way to update me on my godchild’s health, I would be in close contact. I would be sending encouraging cards and gifts. I would want to do something. I would not wash my hands of the child and the family!
I don’t get it.
I wonder if it has to do with mortality. A woman I know lost a baby to a rare, genetic disease, and she told me that the most painful time she and her husband experienced was actually after their baby girl’s funeral. Everyone sent meals for a few weeks after their sweet daughter passed. People were concerned and wanted to express their sympathy and grief over a life lost before its time. People, however, don’t want to linger in grief so they move on. We are not a culture comfortable with discussing death, and chronic illness represents our mortality. My friend said that two weeks after the funeral people stopped calling. She and her husband were left alone with their immense sadness, loneliness, and grief. Everyone else got to go back to their lives, children, and pregnancies. They, however, had to sit in a house with an empty crib–face the loss and trudge through all the feelings of just having helplessly witnessed their first baby deteriorate before their eyes until she died.
That’s a bit like what this feels like. Now that we know what’s wrong with Grace–“Your daughter has a schizophrenia spectrum disorder. The prognosis isn’t good. I’m sorry.”–no one’s coming around anymore. They don’t want to hear about what her life is like and what it takes to manage a mentally ill child. They don’t want to know how she was doing last night at the hospital (She looked like an owl. It was positively weird. Her pupils were dilated and she wasn’t blinking. She took her first dose of Lithium last night). They don’t want to know that my husband finally realized LAST NIGHT that Grace is really ill, and he came home and cried after he saw her at the hospital. I wish I had been more sympathetic, but my response was, “It’s about time. Where have you been?” Denial is a bitch. I suppose I am as well sometimes. People simply don’t want to be reminded of this. Grace seemed to be fine…until she wasn’t. If it can happen to her, then it can happen to you. Who wants to stick around for that somber reality check? Grace’s case manager asks me all the time what I’m doing to support myself. As her primary caregiver, I’m supposed to be getting support. From where? The social worker, psychiatrist, and therapist at Grace’s hospital can’t even figure out what kind of therapeutic intervention will best support a kid like Grace. Where am I going to go then?
I don’t think I’m alone in this. I know I’m not the first parent who has watched her friends bow out not so gracefully in the name of “That stresses me out!” or “I don’t want to be around that.” or “I don’t know what to say!” or “I just don’t want to hear anymore.” or “It’s not like I can fix it so why bother?”
Well, I’ll just say this. I don’t expect anyone to fix anything. I sure as hell can’t fix anything so why would I ever expect that of anyone else? I don’t have a Messiah Complex nor do I want anyone else developing one on our behalf. Most of the time, I don’t even get off on talking about what’s going on with Grace. I have to spend a lot of time talking about her with tons of people–teachers, social workers, therapists, and psychiatrists. I talk a lot, and I’m an introvert. It takes a toll. So, I blog. It helps me process everything. When I see my friends, however, I want to talk to them about their lives, and I want to talk to them about other aspects of my life outside of Grace. Grace is not my sun, and I’m not orbiting her although there are days…I want to feel like a woman who has something to do other than take care of her. Many of my friends who have disappeared assume that I have become one-dimensional simply because I have an ill child. They assume that I am weak, tired, and overwhelmed. They assume that I am neglecting myself, that I have let my house go, my sex life go, and that I don’t care for my other children because Grace must be all-consuming. They assume that I am handling these circumstances as they might handle it. It’s a complete theory of mind failure!
I’ll admit it. I was sort of a mess last summer. Yeah, I forgot to wear underwear. I wasn’t sleeping or eating, and I don’t know if my husband and I were having sexy rumpus. I don’t remember! It was hellish, but we’re not there now! We found our footing.
I miss my friends. I wish they hadn’t disappeared, and I wish Grace didn’t have schizophrenia. I wish for a lot of things. This is life, I suppose. We grieve what we lose and keep moving forward. It makes the few remaining friendships that I have all the more meaningful.
Still…I think it sucks.
Now, I will share something with you that made me laugh today: