You stood behind me in the checkout line, and distractedly smiled at my three year old playing in her shopping cart seat. When I told her she couldn’t have the $20 microscopic stuffed doll at checkout, or the ten yard roll of bubble gum, OR the lollipop as big as her face, she started crying and throwing a fit. I saw the shock on your face when you noticed the formation of veins over her right eye turn dark blue and purple and swell so big that it looked like it might pop any second as she was crying. I saw you quickly mask the look of shock, and I could practically read your mind as you scrambled to say something nice to recover from your look of horror. I heard the hesitation in your voice as you asked my 3 year old, “What happened, sweetie?” and nervously laughed, “Did you get in a fight?” I explained to you that my little girl was born with this abnormality, that it was called a venous malformation, and that she has had three surgeries to try to alleviate the swelling and obstruction of her vision. And if you’re anything like me, I imagine you got in your car on the way home, mulling the situation, kicking yourself for not being able to say something nicer or more clever to alleviate the awkwardness of the situation. I imagine you agonized that you said the wrong thing, worried that you may have offended me, or caused my 3 year old emotional harm.
But here’s what I want you to know. It’s ok. You’re good, she’s good, I’m good…no harm done. You don’t have to stress out about what you did or didn’t say to me or to her. You can freely and openly ask me about her face. You can ask me what we plan to do about it, you can ask if it will get better eventually…anything you’re curious about. Your kids can point and ask her what happened, and she’ll happily tell them that she was born with it, that it doesn’t hurt her, and that she goes to the doctors to try to fix it (although it will probably never go away completely). If you (or your kids) do end up saying something arguably offensive, I’m not going to be upset. I don’t expect you to know about her condition; there are so many differences and disabilities out there, I couldn’t possibly expect you to know about it or understand what she has to go through because of it, so feel free to ask me questions. I won’t write you an open letter schooling you on the 10 things I wish you knew about her condition. Why? There are two reasons.
The first reason is, I want to treat it like a normal thing, and it is to us. I don’t want to handle her or her condition with kid gloves, and I don’t want her to think people need to walk on eggshells around her, careful about what they say. I refuse to let her grow up with a chip on her shoulder, just waiting for someone to say something insensitive so she can be hurt and offended. I believe that starts with me and how I handle these situations, because she learns how to respond by watching me. We don’t try to cover it up, we don’t whisper about it, and we don’t expect anyone else to whisper about it. We talk about it openly, she talks about it openly…we’re even able to be lighthearted and joke about it sometimes.
Secondly, I’ve been where you are. I would never in my lifetime purposefully say something to hurt someone, or say something insensitive to someone dealing with differences, physical or behavioral. But, even I, cautious almost to the point of silence, have said my share of really stupid things. And, let’s face it, in spite of our best attempts, we all stick our feet in our mouths at some point in our lives, some of us more than others. Granted, there are a few miserable, ugly people out there who do intentionally say rude, hurtful things (cough, cough…Donald Trump). But I refuse to believe that most people are trying to be rude or insensitive when they say thoughtless things about any of the ways that she is different, that I am different, or anyone else in my family is different. It might make me a little naïve, but I will always give you, the sayer of stupid things, the benefit of the doubt, and assume that you didn’t mean anything harmful or insensitive, and didn’t think about the implications of what you were saying. So when you tell me that it’s a good thing she’s a girl so she can put makeup on it, I’m going to assume that you were just looking for something positive to say about a negative situation, and not that you were suggesting that it’s something that needs to be hidden or covered up. When you give her a second glance and cautiously check me or her Dad out when you see her “black eye,” I’m going to assume that you’ve probably seen a thing or two and are genuinely concerned about the welfare of my child, and not be mortally offended that you think I abuse my child. Could you maybe do the same for me, the next time I slip up?
Now, I’ve been to enough children’s hospitals in the past few months to know that what my daughter deals with is very low on the scale of abnormalities and conditions and diseases and defects and handicaps that other children and adults deal with daily. The point of this article is not to criticize what others have done or said or written, because I can’t speak for what they have gone through; I’m merely offering a new perspective, voicing a different option. I suppose we could all walk around looking for something to be offended about, because we all have differences. But this creates a culture where no one talks to each other because we’re all scared we’ll say something wrong. And believe me, I would so much rather have an actual conversation with you about my daughter’s abnormality, even if that means that you say something questionable in the process, than for you to awkwardly avoid looking our way or glare at me suspiciously.
It seems to me, that those of us who expect the most tolerance about our differences should be as willing to be open-minded when interpreting what people say about those differences. For myself and my peace of mind, and for my daughter’s sake, I will always give you the benefit of the doubt, and assume the about your intentions.