My friend Sarah's three year old daughter, Katie, has down syndrome. Sarah and I were talking yesterday and she reiterated something I have heard her say on numerous occasions.
"I hate it when people stare at our family. I hate that sweet look they get on their faces when they look at Katie. Like, Awwww. Look at that disabled girl. Isn't she cute? It's a look of pity. I don't want people to feel sorry for her or for us. This is our life, and it's a great one."
Sarah went on. "At church on Sunday, a friend came up to me and said, 'Your life must be so hard.' What? Yes, there are hard things, but surely her life isn't perfect either. I am just so tired of the sympathy!"
Sarah and I are close enough friends that I can laugh at her. And yesterday I did. Why? Because just two weeks ago, Sarah was telling me about how none of her friends understand what she goes through. That even her own sister will call her up and complain about something ridiculously unimportant, like the fact that her teenage daughter wants two hundred dollar jeans for Christmas. "I just get so frustrated listening to her complain about stupid stuff," Sarah vented. "I mean, doesn't she realize how good she has it? That I would give anything in the world for that to be my worry?"
As I pointed out the inconsistencies to her in how she wanted to be treated, she started laughing, too. But, all joking aside, I realized a long time ago that I do not have a playbook for how I want friends, or strangers for that matter, to respond to my own situation with Virginia. I am just as inconsistent as my friend Sarah. Do I want people to view me as just another mother of small children? Or do I want them to walk on eggshells around me, always aware of the fact that I hold the trump card for pain? (Just kidding- that last question is obviously hyperbolic!)
In general, Sarah does not like for people to acknowledge her daughter's disabilities. She wants strangers to look at Katie just like they would any three year old little girl. On this point we differ, and we have talked about this difference a lot. I don't mind when strangers acknowledge that Virginia is "special" and that we need a little extra help to function in the community. Just yesterday, I was struggling to maneuver her wheelchair through the door at the pediatrician's office. A man I do not know jumped up from across the waiting room and literally ran to hold the door for us.
It isn't that I wanted his pity. Pity parties can be fun for a while, but then they leave you feeling empty and alone. I am also well aware that everyone has pain in their life. Some is obvious, some is expertly hidden from view. The man from the pediatrician's office could be dealing with something far tougher than I am. But what he offered me was compassion and I was more than willing to accept it.
I don't want my friends to hide things, happy or sad, because they think my pain makes me unapproachable. My friend Laura has shared every grief I have had for the last seven years and she is very a compassionate person. It used to be hard for her to tell me when her daughter (who is roughly Virginia's age) learned a new skill, like walking or talking. She was afraid it would be like pouring salt in my wounds. Laura also used to hesitate before telling me when there was something hard in her life. "How can I complain to you about something as trivial as my child not obeying when you have so much more on your plate?" she would ask.
But I told Laura that if she really wanted to be my friend, she would have to share her joys and sorrows with me, too. Pain is pain, and there really is no way to compare it. I want my friends to be honest with me about what is going on in their lives, just like I try to be to them.
Not to complicate things, but I do have to admit that I have different standards for different people. Laura has been intrenched in loving Virginia since she was born. She has shown empathy at every turn. Laura could cry to me about her highlights being too dark and I would have to reach for a kleenex for myself. But there are other people who have been privy to Virginia's suffering, who have had the opportunity to help carry our burdens, and have responded by looking the other way. When those people complain to me that their baby isn't sleeping at night or that their daughter didn't get the part she wanted in the ballet performance, it makes me angry.
But it shouldn't because I have learned something over the years. Some people do not get it. No matter how many times you tell them. No matter how many times they witness a little bit of what our lives look like. They just do not get it and they never will. The best thing is for me to let my anger and frustration go. To have compassion on them even when they do not offer it to me. But at certain times, with people who should know better, forgiveness is a tall order.
The fact that Sarah and I are so inconsistent in how we want to be treated and in how we want our daughters to be viewed is funny to me, and not very helpful at all in coming up with a standard answer on how to reach out to other mothers of special needs children. But I think the truth is that there is no standard answer. People deal with pain differently, and every situation is unique. Obviously compassion and sensitivity are key, but beyond that, you just have to ask.
I have learned that the vast majority of people don't mean to be rude or insensitive. They don't know what to do and so they do nothing. For this mother, there is no such thing as too much compassion. And when in doubt about what compassion looks like, just ask. I promise to do the same to you.