don’t look

I don’t know why, but those Facebook letters that start, “Dear Mama of (enter various life situation) I see you,” drive me crazy. It’s like their saying “Dear mama of (various life situation) , I see you, and acknowledge your struggle and write a letter about it so I can show how compassionate I am, but I’m still going to judge you anyway”. Now I don’t know about you, but there are very few times anyone “sees” me. There are very few times when I am truly vulnerable with my actions and emotions. I almost never act or react without thinking about it. At this point, it’s a habit, but I’m sure it stemmed from trying to control others reactions to me as a child. Even with the best intentions, everything you see about me is what I want you to see, so no, you don’t see me. And, if you did see me then, you would have helped me. If you saw me at various stages of life, and at various stages of motherhood, you would not have been capable of seeing what I was actually going through and not lent a hand. When I was 7 months pregnant, with no health insurance or nursing for Ian, please don’t tell me you saw me then, because if you did, and you let me keep going the way I was, you wouldn’t be a very good person. I was lifting my 50lb total care son every day. I was laying on the bathroom floor, sobbing, almost every morning, because I didn’t think I could lift my wet, heavy, baby out of the tub. My family didn’t even see me then. Literally. Out of our 5 siblings, only 1 saw Ian in the almost 4 years after his accident. He only got to see 2 of his 20+ cousins because we couldn’t bring him to see anyone. So, if my family didn’t see me, no, random lady at Aldi watching me pregnant, pushing a wheelchair, and a shopping cart, you didn’t see me. You saw what you wanted to see. You thought you saw a strong, independent, warrior type mother (which, thanks for the compliment), but you didn’t see I was drowning.

If you think you get judged as a typical parent, being judged as a special needs parent is even more brutal. Teachers think they know how to do it better than you, doctors and nurses think they could do it better than you, random people think you just don’t know how to deal with your child and don’t know discipline or aren’t trying hard enough. So no, you don’t see, you judge. I’m not hating, it’s just human nature. Ian used to do this thing where he would throw his head forward out of his wheelchair, and it looked like we were just letting him ride around with his head flapping around (he put it there, and he could put it back). The movement was some of the only body autonomy that he had, so we would just let him do what he wanted. And wow did we get stared at. I used to do that sneaky mom whisper (through clenched teeth and a smile) to him when we were out in public, “Ian Raymond, if you don’t put your head back in your chair, people are going to think I’m neglecting you and they’re going to give you to a new family!” It was our little joke, however, people looked like they wanted to do it. “Excuse me, ma’am, his head is hanging down”. Yup I know, thanks. “Excuse me ma’am, he’s got some stuff coming out of his mouth”. No shit. Some of the judgement can be positive, some people are impressed that you can do so much-even though you can’t. You know how it feels when you think everyone is looking at you all the time? Well, when you are with a kid in a wheelchair, people really are. And, I do it with other kids too. It used to be because I knew those were my people, but now it’s with envy. Because now what you see, is a typical mom. You don’t see that I’m a special needs mom anymore. I used to be able to find instant comradery with other special needs moms, but now what am I going to do, walk up to people and say, “I’m a special needs mom too, but my son died”, just what they want to hear, that their worst fears do actually happen.

In reality, we never see what people are really going through. As humans, we can only make assumptions about people and their situations based on the information we can process and our own life experience. It’s not inherently a bad thing, we naturally infer when we don’t know. So, unless you are truly observing (like an anthropologist does) you don’t see what people don’t want you to see. It’s not as though we are all living lies, it’s that the complexity of our thoughts and feelings are impossible to convey. The only thing you are capable of seeing is your own biased perception of them. I can only imagine that other parents in the same situation as me, feel the same as I did. So when we look at other people and “see” them, what we are really saying is, “I see me, in your shoes, and I imagine. I can empathize, I could do it better, I would handle it worse, I would never even do that, I wish that were me etc”. I see MY understanding of you.

So, when you see other people in situations that you don’t understand or have never been through, actually think about yourself. Think how you would feel, don’t think about how you would act, because, honestly, no one really knows how they would act in any situation. Think about how you would feel if someone said something to you. Think about how you would feel if you didn’t have all the resources you needed. Think about how you would feel if no one listened to you. Don’t think about how you would act. And if any of those questions cause negative emotions to arise, then don’t act on it. Most people don’t see the real me, not only because I don’t let them, but because they can’t even imagine being me. And honestly, there are a lot of people’s lives that I can’t imagine either. I don’t look at people with envy or pity. Honestly, I don’t look at people in anyway, because I know it’s not the whole picture. So no mama, I don’t see you. But, I value and respect you regardless.