I wrote this post a while ago, it’s not about Mother’s Day, but I felt compelled to post on Mother’s Day, so here you are. This blog post is dedicated to all women who would fight a tiger for those little people (and some now big people) we love to the depths of our souls, to those moms who were called to task and have had to fight lions, tigers, and possibly doctors, drug companies, government agencies, and God, for these beautiful little wonders, and especially to those moms whose children- people we love more than ourselves- are no longer with us. This quote is achingly true: “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body. ” Today is about honouring the roads you have traveled and all you have done.
This post is called ‘Getting to Know Trey.’
Every time we start a new activity, whether physiotherapy, baseball or art class, I feel compelled to explain ‘our situation.’ At times I have sat back and waited for the looks or the questions (why he uses stamps to print his name, why he can’t play grounders, what those things in his ears are etc.), but the questions only come from toddlers, whose curiosity and lack of social training lead them to ask about any and all questions they have, and the looks, well, they’re heart wrenching. And who knows what kinds of conversation the looks will lead to at home. At least if I introduce the conversation, I can hopefully have some impact on word choice for future private conversations. So, after Trey gets going, I often introduce Hunter Syndrome.
In the past, I have described Trey as ‘harder to get to know’ or ‘harder to understand’ than other typical kids such as Avery and Sadie. However, I have come to the conclusion that this statement is not true. The real and true Avery and Sadie, the deep down you and I, we are just as hard to get to know as Trey; the only difference is that we can hide and choose not to discuss the ‘hard to get to know’ parts of ourselves and Trey cannot.
I have been thinking about this for a while and one day, an idea I was introduced to during my Women’s Studies degree years ago popped into my head. It is referred to as ‘passing.’ I found a definition of ‘ racial passing’ on Wikipedia:
“Racial passing refers to a person classified as a member of one racial group attempting to be accepted as a member of a different racial group. The term was used especially in the U.S. to describe a person of mixed-race heritage assimilating into the white majority during times when legal and social conventions of hypodescent classified the person as a minority, subject to racial segregation and discrimination.”
Although the definition above describes racial passing, I think passing can be used in any context where a person is attempting to be accepted into a group of people (often deemed as having higher status). If you or I have a learning disability, four toes, ADHD, anxiety, a seizure disorder, alcohol addiction, and the list, of course, goes on and on and on, I can ‘pass’ as the same as you and you can ‘pass’ as the same as me. Adults can talk about the weather and other mundane topics, avoid the deep and dirty, and not really get to know each other. Kids can ‘be cool’ and not talk about being dyslexic or their parents’ divorce or their night terrors. With most of our differences and challenges, we can ‘pass’ as whomever our culture (or the group we want to be included into) deems ‘normal’, acceptable and superior. We have the choice to acknowledge our differences and challenges or keep them to ourselves.
Trey does not. His quirks are out in the open. When he is happy and excited and enthusiastic, he beams from ear to ear and he often jumps up and down or does a silly dance (which, by the way, I love. Trey’s silly dance is AWESOME). He hasn’t learned the ‘cool’ way to hide his excitement. When he is disappointed, it’s apparent. He cries. He also has hearing aids, a port, and lots of scars. He doesn’t always understand the games other kids are playing, which is obvious. He is just now learning to print, read and colour in the lines. All of these quirks can lead to exclusion, sadly, while others, with the ability to pass, are trying to fit in.
Nobody is normal. You’re not. I’m sure not. But at least we have to ability to pretend. The only difference between Trey’s differences and your or my differences is that Trey can’t hide his and we can (ours are also likely more socially acceptable). You don’t have the choice of getting to know Trey casually. If you’ve had the honor of meeting Trey, you’re either all in or all out. He cuts out the BS. I happen to like that idea. Of really, truly knowing people. Thanks Trey, you’ve inspired me yet again.