For years I have heard people say things like, "My disease/disorder/illness does not define me!" I'd pump my fists in the air and think to myself, "YEAH!"
When my oldest daughter hit full-blown Tourettes, life was hard. Yet, she still had her friends and her interests and her sense of humor. She was so much more than Tourettes or the compulsions or the acid reflux, even when it altered her life.
So, I've always agreed with that thinking ... until about a year and a half ago. I still believe a diagnosis does not define a person. But I must admit that it can be very difficult to feel that way when you have a very hurting child.
I realize this could initially make me sound like I don't have hope, or I can't see my kids for who they really are. That is so not true. But I had to learn how to do that. Let me explain.
For about nine months, we did not see, hear or experience who one of our kids really is - the person they were born to be. Their true self emerged very slowly. They had obsessions over certain objects, but in unhealthy ways. If we asked, "What would you like to do today?" the answer was either "I don't know" or "What is so-and-so doing?" Everyday. For a very, very, very long time.
Maybe not every kid - but for many of us, we have watched trauma define our children. It defines every word from their mouth, every action they make, every ounce of sleep, every thing which goes in their mouths, everything which comes out of their body (and how it is deposited ... many times NOT in an appropriate place), every thought and belief they have about themselves.
It's unlike anything you could imagine possible, and it's unbelievably disheartening.
I'm also here to say: our children - OUR REAL CHILDREN - are in there. Both of mine are emerging. They now have favorite foods and things they would rather decline. They have interests that they enjoy and choose to do regularly. They have things that make them smile and bring them joy. They are funny. They have empathy for people in their path.
My healing kids have "things." They have "favorites." They have "interests." It's wonderful to see and experience. I still have days when the history and the patterns and the disorder make me shake my fist at the sky and think it will never, ever, ever, ever, ever, EVER end. Yet, so much of it has been left behind. I'm just a mom. I want them to be free from all of it.
Do what I do. Sit down with all your kids and play, "Stuff You Don't Do Anymore." Make a list of behaviors, obsessions, etc., they have left behind. Add to it every few months. It helps me to keep the big picture ... ya' know ... on those bad days when they are still working through their "stuff." They are in there! It's just that the trauma is smothering the "real child" underneath.
(photo by Nikolya Magukov)