Double Standards

Double standards. Yes, I have them. When it comes to Joel, I have one set for me, and another for other people. And I think I might sort of believe that is my mother's prerogative.

These double standards apply to a lot of places. For one thing, how I "see" Joel's body from day to day is with a varied and sometimes ambivalent emotional response. I mean, some days, when I look at Joel's stick thin legs and arms, I feel a great sadness. I feel that his body has "let him down" and that it is "flawed." Ok, I mean, that makes a sort of logical sense. But I'm not talking about logic, I'm trying to explain FEELINGS. Of course, there is a flaw in Joel's genetic code, if you want to use the English language to be precise. I'm really meaning my emotional response to Joel's whole body, that feeling of sadness, longing, disappointment that is my emotional reaction to seeing the evidence of that genetic flaw.

I also have days where I look at Joel's thin little legs and arms, his twisty little feet, all of him, and I think HOW BEAUTIFUL HE IS. I think how much I love his special little body, how dear it is to me. How the twisty little feet are so cute and precious. How brave that body is for fighting on despite all the obstacles in the way to live and grow. I am awed at the way it fights to be well and to live, and I even feel grattitude for it. I love his little body, and I don't see flaws or remember what a genetic code is supposed to be. Again, I'm not talking about logic. I'm talking about feelings here.

Here is where the double standard sets in. I feel allowed these extremes. But I find myself, at times, resentful of other people having them. Especially if they react in the more negative way to Joel's body. It disturbs me if I think people are viewing Joel's body with sadness. I don't want them to feel his withered limbs are pitiful. I don't want them to see his body as deformed in any way. It seems I feel that I am allowed to grieve this, to feel these negative feelings. But if other people have them, I find it hard to stand. At times. With the exception of Steve. Apparently I still grant him the same "Daddy" privileges as Mommy has. But most of the time, when it comes to other people, I just want everyone to feel Joel is beautiful, to see how attractive and precious he is, and not feel ... pity? towards his body...?

And yet at the same time I want them to acknowledge my sorrow... to see my sense of loss... to understand my own sadness... It's really quite a double standard.

And it doesn't just apply to this situation. It also extends to how others see/feel/express the expectations they have about his life span. I confess, I'm hard to please. Well, I'm hard to please when it comes to myself as well. I walk a very thin line. On one hand, I know that Joel could still live another year, maybe two. And I also know that Joel could just "suddenly" die tomorrow. I live with this tension all the time. I've gotten so used to it, I'm not even sure I notice that much. And so, I guess I feel it's ok for me to think more negatively, to feel that surely Joel is not going to last much longer, that I feel the need to "prepare" myself for his death which is coming any week now.

At the same time, I am allowed to look on it positively. I'm allowed to plan out of home respite for the summer so we can go on a trip because I feel Joel will still be "stable." I'm allowed to see small things that I think are "good" signs of his health. I can feel positive when his oxygen needs go down from where they have been. I am allowed to feel almost carefree at times. I'm allowed to enjoy looking ahead to a future, even though it is brief.

Of course, in keeping with the double standard, I find it hard to bear these extremes in other people. Again, it is the negative that disturbs me the most. While I might sometimes secretly feel that the much dreaded "death day" is almost here, I am very vexed if a doctor dwells on it. My back goes up if any friend or acquaintance intimates in any slight way that Joel might not be around too much longer. My hackles rise. Never have I felt the presence of hackles so keenly as with things pertaining to Joel. Perhaps werewolves do exist, because sometimes I am tempted to check my hands for signs of fur when my back is up! Don't worry, so far I have never torn any one's throat out. It's amazing the calm and polite answers I can get out.

I do realize the double standard here. And that it might not be totally fair. I feel I have a right to some of these feelings, both postive and negative, because I am Joel's mother. And there is some truth to that. Still, we are all people. Surely everyone has some right to their feelings too. Even if I don't always like them. I guess I don't have to like the feelings and reactions other people have to Joel or his health. But I can't rip them apart. It's against the law, it's unethical, and, well, joking metaphor's aside, I better "forgive" them, because my own feelings have been handled with forbearance many times.

I'm struggling to learn to be fair with the emotional reactions of other people. And to their thoughts, too. And when I find it hard to be fair, or they don't give me much to work with, then I'm struggling to love and respect them anyway. It's a mother's prerogative to have her feelings about her child's illness. It's also a privilege to be gentle, kind, forbearing, and understanding about the feelings other people have.