I’m not as angry as I used to be. I listen more. I have empathy where I used to have contempt. It’s a lot easier for me to imagine myself in someone else’s shoes. Almost too easy. I want good things for people I don’t always like. I’m patient. I need less. I’m more thankful for every small kindness shown to me. And music …sweet, mysterious music …means more to me than it ever has.
I’m tired all the time. My body is a wreck from years of interrupted sleep, causing schizophrenic cortisol levels. I can’t verbally formulate sentences as fluidly as I once could. Prolonged periods of extreme stress do weird things to a person’s brain. I make a living with mine. And some of it has been sacrificed and compromised.
I can’t remember the last time I bought new clothes …or cared. My hair must stay utilitarian and easily managed. I don’t know what it looks like most of the time …or care. My work schedule is sporadic at best and most of the time an afterthought. I am a slave to a maddeningly regimented schedule. And if I miss one beat of it, someone could get injured …or even die.
All of the above can be said of and about my wife …and probably more. We share all of it.
All of these things we share are the result of something called Angelman Syndrome, a disorder my 14-year-old daughter has. It is a deletion or mutation of the 15th maternal chromosome. It was named after doctor Harry Angelman, who was the first physician to catalog symptoms and treat people with this disorder. People afflicted with it are sometimes referred to as “Angels.” And I think that’s just about right. Because, despite the round-the-clock caregiving they require, they bring something angelic into the world.
I don’t write about my daughter as much as I used to because she’s a young woman now and I want to respect her privacy. She faces incredible challenges every day. And as I watch her struggle to perform basic tasks like holding a fork or brushing her hair, I realize that it’s not my place to embarrass her for the sake of “awareness.” The prevailing wisdom is that she knows she is like she is …and that breaks my heart …every. single. day.
This morning at 6 am, she was frustrated with what I had on TV. She used every sign she knows (which are only a couple) to tell me what she wanted to watch but I couldn’t get it. And it brought tears to her eyes. My JOB is to “communicate” …and I can’t talk to my own daughter about something as simple as the TV channel. This happens a dozen times a day, in almost every facet of life.
In a little more than 3 years my wife and I have to go to court and get legal guardianship of her again …when she turns 18. And we will begin the process of setting up a life for someone who requires assistance for everything from eating to going to the bathroom; bathing to going to bed. She also requires someone to be watching her every waking moment, so that she doesn’t play with knives or touch hot stoves or rip up mail or smash a TV screen with a blunt object …or a hundred other things that could injure her or someone else.
Friends and colleagues don’t always understand why I’m not more available to them – why I can’t just jump in the car and go meet for a beer without it being scheduled days in advance. And then when we ARE having a beer, they continually ask me “how I do it” or say things like “I could never handle what you handle.”
I get very uncomfortable in those conversations. And I don’t like having them. I’m not a hero. I’m not a super dad. I’m a man trying to raise a daughter. Nothing more. My wife and I are trying raise her with dignity and honesty as best we can. And while we’re trying to teach her how to choose between two colors …she’s teaching us more than we could’ve ever imagined.
She’s teaching us that lots and LOTS of things don’t actually matter. She’s teaching us that an honest smile means more than a fake Saturday night. And that if you’re going to love …love all the way. Anything short of that is not love at all. It’s something …but it isn’t love. She’s teaching us that life is too short and sweet to get angry at Facebook memes and politics with which we disagree.
My daughter wants everyone to meet and hug. She wants everyone to speak politely. And if a conversation gets heated around her, she gets upset. She smiles at everyone …the less attractive the better. She is prone to positivity and wants to laugh more than she wants to cry. She’s content with enough. She’s grateful for anything you give her and excited about it. She doesn’t have the luxury of a refined political point of view. So, if you play some cool tunes and dance with her, she will find something about you to like …even if she might disagree with you in some theoretical political universe. We could all take lessons from her. I do. Every day.
Angelman Syndrome is a horrible thing in and of itself. I wouldn’t wish it on anyone. And the fact that my precious innocent has to live with it makes me keep my fists up to the world. And I will fight for her until my death …literally. And then I can only hope and pray that someone will step in and take my place.
Maybe there will be a cure someday for her condition. They say it’s theoretically possible. And I would love nothing more than to have a conversation with her before I die. I’m sure the first words out of her mouth will be, “Dad, if people only knew how much you cuss around me in private, they’d be appalled.”
But who knows …a cure might mean she has to re-learn to do everything. Or learn to do it the first time.
All I know is while we’re fighting to make our children whole, they might just be making us whole in the process. At least that’s the case at my house.
And in my life I can honestly say that I learned more from a “damaged” chinese orphan than I leaned in 35 years of life before her.
People are always looking for angels. Well, I live with one. So if there’s a heaven, I’ll know exactly what to look for when I get there.