Lamp doing some serious tummy time in therapy. She is never on her tummy...so this is a big deal. Also, it's a rare moment when I get to stand back and see her from the outside looking in.
Some things in life can be categorized into "us" and "them" type situations. For example, when I was single and in my late 20's sometimes it felt like it was "us" the older bachelorettes vs. "them" the married women. There was a perspective us single gals had that the married ones didn't--especially if they were married at a younger age. And then when I eventually got married, I became a "them." Then there was being married without kids (us) and now being married with kids (them). You start out as an "us" and move onto a "them." The thing is, you don't always become a "them." In some situations you might always be an "us" and you'll never have the perspective--for better or for worse--of being a "them." Sometimes the journey from "us" to "them" is a happy one like getting married or having kids. But sometimes going from "us" to "them" is not positive--like getting divorced or being widowed or having a child die. If you have the experience of going from an "us" to a "them" then you know both sides of the coin, you have an understanding and a perspective that some people and maybe even most people will never have. Maybe you were once married and are now divorced. You remember what it was like to be an "us" because you were once that way too. You were once happy and blissful. You probably remember what you used to think about all those divorced "them's"...and now here you are. And all the happily married "us's" won't really be able to fully understand what you're going through, not because they don't want to or because they're not compassionate enough, but because an "us" can never truly understand a "them" unless they become one. It's just the way it is. Or maybe you had a child who died and find yourself in the worst "us" and "them" category of all. All of us "us's" will never understand the depth and the constancy of your anguish. As a "them" you can remember what it was like to once be an ignorant "us" not even thinking about the beautiful blessing it is just to wake up to each other each and every day. And maybe you long for the days of being an "us" or maybe you just resent that everyone else gets to be an "us" while you carry the constant weight of being a "them." I'm sure there are a lot of holes in my logic here, but here's my point...
I remember what it was like to be an "us" back before we had a daughter with special needs. And this is where the honesty stings a little. I don't long to be an "us" again, that's not it, I just wish I could have been a different type of "us." I certainly wasn't callous towards those with special needs, or to the families of those with special needs. I respected them...from a distance. I thought they were courageous families who deserved a round of applause...over there.
When I'm out in public with my girls sometimes I get a sense of this "us" vs. "them" from those around me and I get my guard up, I feel ready to pounce and ready to shield my daughters from the judgements, the polite smiles and the "it's-not-nice-to-stare's" we sometimes hear mothers telling their curious children.
And the reason I have my guard up is that I know what it's like because I was once an "us." In some ways it's like I'm facing myself back in my "us" days and that's been a tough pill to swallow. I never would have been rude to a baby like Lamp, or to her family but deep in my heart I would have thought of her as "other." Never in a million years would I have thought of myself as being better than any one with special needs--but my actions might have said differently. I probably would have encouraged my daughter to be nice and interact with her politely on the playground, but I would have excused myself and my daughter from the responsibility of actual friendship.
But here I am...a "them." Now that I'm a "them" I want people to know how much of a regular baby she is, with regular a baby personality and regular baby feelings. I want people to know that as she grows and starts looking for friendships and kids to play with, that she is just as worthy of your child's friendship as any other kid. She should have opportunities--to dance, to study, or to do sports and activities that any other kid might want to do, even if there are some serious limitations. I don't want people to count her out. I want this difficult balance of seeing past her disabilities, while at the same time making necessary and respectful accommodations when possible. I'm so grateful that people are kind, but I want more than distant kindness for my little Lamp.
Coming to terms with my own ignorance and prejudices is not easy. Especially since I'm hoping and praying that other people aren't like me...the old me. Of course it's that same realization that also reminds me to be easy on others, to allow them to grow in their understanding at their own pace. This marriage of "us" and "them" seems impossible--to hope that others see what you see, when they're standing on a completely different mountain top. I want happy outcomes and help and strength along the way, I want other people to step-up, while I practice patience and understanding.
I think what I really want is grace.
Go here to read/listen to an excellent talk on grace.