I haven’t been sleeping well. I’m having nightmares. I’m waking at 2:00 and 3:00 AM, unable to go back to sleep. I am worrying. I feel I shouldn’t be. But I am. The lack of sleep doesn’t help my worrying, it exacerbates it. There are a couple of things going on that are causing this. I am not managing the work/writing balance. I need to work. I don’t have a choice. I also like what I do. So there’s that. And I need to figure out how to balance work better.
Then there’s this… my writing, this blog and autism. Specifically my growing discomfort in writing about Emma, without Emma. More and more I try to keep my writing about my own issues and how they weigh on my responses and reactions, but even so, I end up writing about her. I asked Emma the other day, “Hey Em. Does it bother you that I write about you?” “Nyeah,” she said, which is her way of saying No. It sounds like knee-yeah when she says it and she scrunches her face up and smiles while shaking her head from side to side. “Okay, but do you know that lots and lots of people read the blog every day? Not just family or people we know,” I continued. She looked at me, nodded her head up and down and grinned. “Do you care that I put photos of you on it?” “Nyeah,” she said again.
I asked Nic what his feelings were. Without hesitation he said he wasn’t comfortable being written about or having his photo on the blog or Facebook or anywhere else. So Em tells me she doesn’t care or mind, but Nic certainly does and I can’t get rid of my anxiety. I didn’t do what so many bloggers have done. I never made my family anonymous while keeping our whereabouts a mystery. It never occurred to me to do that. I started this blog as a way of documenting Emma’s progress. That original concept has changed over the years. I don’t know how to keep writing about “our journey” without “all of us” writing it. Nic has no interest and whenever I have asked Emma if she’d like to write something, she’s declined. The truth is the blog has become “my journey”. I have moved away from feeling sad about my family and am now in a place of contentment. I feel tremendously lucky. I feel incredibly grateful for my two children and my husband and the life we have together. I no longer delineate one child from the other. I don’t see one as one thing and the other as something else.
We often talk about our children as though they grow up in a vacuum. We express shock when children bully each other and make schools accountable and yet our children are being raised in a culture where adults bully all the time. We are a culture of bullies. Of course bullying is a problem in schools, how could it not be? Look at the adults they see, hear and watch on TV and in the movies. They are surrounded by bullies, even bullied by those adults and yet we are horrified and shake our heads and wonder how this could happen? How could it NOT happen? Parents have strong opinions about race, sexuality and difference and their children often adopt similar beliefs. We want tolerance? We must begin with ourselves. We want to stop bullying? We must look to our own behaviors first.
So I ask myself: Am I contributing to a culture that thrives on putting others down? Do I do and/or say things to make people feel badly about themselves? Do I gossip? Am I judgmental? Do I engage in disrespectful conversations about those I do not agree with? Am I more interested in making my point than hearing another’s? What sort of person do I model for my children? I believe in tolerance, embracing difference, being of service, acceptance, but do my actions mimic my beliefs? Do I believe that what I believe is the “truth”? Do I consider those who disagree as inferior? I know I am guilty of all these things at least on occasion and a few more than occasionally.
I have an ideal for myself, it is a kind of end goal, the person I strive to be, but know I will never achieve. As long as I keep traveling toward my ideal I will have lived a good life, or, at the very least, a better life than if I don’t. I know I won’t do any of this perfectly, but I can keep trying. I can keep holding myself accountable. When I make mistakes I can admit them, make amends and do all that I can to try and make the necessary changes so I won’t repeat myself. I don’t know what the answer is to my questions and discomfort. But I’ll keep looking, asking and being aware of how I feel. Once I’ve figured it out, who knows? But until then I’ll keep writing about it. After all, this blog is less Emma’s Hope Book and more “A Journey.”
New York City – Built as a Courthouse in 1874-1877, later used as a Public Library this clock tower remains standing