There Are No Words

When she can't sit in her swing, we just sit in Wills' togetherThere are no words for her joy, either. Or for how much I love her.)
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There are no words to describe what Virginia goes through on a daily basis, no way to make people really understand what our life is like.

Sometimes I share a lot, sometimes I don't. Among my closest few friends, I hate to be the prayer hog. The one who is always in the midst of a crisis. But in caring for Virginia, I feel like I am constantly struggling to keep my head above water.

I can't tell you what it is like to rarely sleep more than two hours at a time for over six years.

I can't tell you what it is like to spend at least thirty minutes, five times a day, painstakingly feeding your child.

I can't tell you what it is like to be stuck in Groundhog Day, reliving the same few activities over and over again because they are the only ones she can do.

I don't show pictures of the ten minutes it takes to get her in the swing, all the bending, flexing, and repositioning. I also don't show pictures of all the times it doesn't work- when her body won't cooperate enough to be in her special swing for even a minute because her head keeps getting stuck back. On those occasions, all the effort of positioning is for naught and we try something else.

I can't tell you what it is like to watch life be so easy and full of fun for Wills and Eliza while Virginia struggles through every single minute. In them I see what childhood is meant to be like and it is hard not to grieve what was taken from Virginia.

I can't tell you what it is like to watch your child cry numerous times a day, and most of the time not know why. Tired? Frustrated? Scared? In pain? Feeling left out? The emotional ramifications of a brain injury? Or just being six years old? Either way, incredibly hard to watch.

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Ok, before you think I am having a total meltdown or getting carried away in a tidal wave of self-pity, I am going somewhere with this.

Even my closest friends, the ones who have saturated themselves in everything Virginia, don't know what it is really like. AND I don't know what their life is really like, either.

I have a friend who is almost a year into being a single parent to her four children after her husband left her for a more, shall we say, glamorous life. She can tell me about the hurt of a failed marriage, about the pain of infidelity. She can tell me about the loneliness and about how tired she is from doing everything for her four kids by herself. She can explain how hard it is to make a major decision for your children without having a father's input. But I don't really get it. I can listen, but I haven't been there.

I have another friend who has two kids with special needs. Her oldest has significant autism. I can ask her how she's doing, and occasionally I feel like I get a semi-honest answer. I can listen to her talk about the struggles with school, the way people look at their family in public, the sorrow she has over what she sees every day in her son. But I can't imagine the constant stress in her life because I haven't been there.

I have another friend whose family has been through some rocky financial times. I can listen, I can pray for a good job to come their way, but I don't know the stress of having three kids and not knowing where the mortgage check is going to come from.

I have another friend who never felt loved or accepted by her father and now she is dealing with a huge, painful void in her life. Again, I can have sympathy for her, but her suffering is something I can't fully grasp.

I have single friends who long to be married and have children. They probably look at my full plate and think- gosh, why is she complaining? She has all the love in the world. As much as I try to empathize and imagine what it would feel like to be thirty-one and not have Findley or my children, I can't because I haven't walked that road.

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A little closer to home, I am always trying to put myself in Virginia's shoes, to read her mind to try to figure out what she wants. Unfortunately, I can't. I don't know what it is like not to be able to communicate. I don't know what it is like not to able to brush away the hairs that tickle my nose or scratch a bug bite on my arm. I don't know what it feels like not to be able to move where I want to go or to create the things I want to create. I don't know it feels like to be so tired and yet have a body that refuses to relax.

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Virginia's suffering and the suffering of our family are pretty easy to see. I broke my arm five times as a child and my leg twice. If my father hadn't been an orthopedic surgeon, he couldn't have afforded me. He kept cast materials in the pantry because he just never knew when I would break another bone. Having a cast is an obvious marker of a wound. It's like publicly shouting, "I am hurt." So is having a daughter in a wheelchair. Our pain is right there for the world to see. (Hopefully our joy is, too, but that's not what this post is about!)

There are many injuries that go much deeper that are not visible for the world to see. Injuries to the heart and to the soul that will never be healed. We can never know what other people are going through. We all have our pain, some obvious and some not-so-obvious, but it all hurts. I have learned that even when we think we know what someone else is going through, we do not. It is better to err on the side of compassion. It is better not to judge and not to assume that we could handle someone else's trials better than they are handling them.

I know there are a lot of people who have gone through things I could never imagine. Violent things. Intentional abuse and neglect. To them, my little world may seem like a paradise. To some, Virginia's world might even seem like a reprieve from whatever horror they have to endure on a regular basis because at least she is surrounded by love. But to me, what we have been through is very difficult and I have learned that everyone else has their difficulties as well.

As my grandmother Tot used to say, "Unless you have walked a mile in someone's shoes, you have no idea what they are really going through." It is a just another way of saying that there is no such thing as too much compassion for those who are suffering. And let's be honest, isn't that all of us?

(Ginny and me at the zoo. I was, of course, sporting my most frequent accessory, a cast!)