When I moved to the Northwest, my son had just turned four. I knew something was not right, but I didn’t have a word for it yet. After months of diagnostic testing, I had a word. Autism.
Suddenly I was in a new world, a world I did not want to be in. A world I didn’t know how to navigate. A world I only wanted to escape from.
There were lots of people to meet that I never would have crossed paths with. Experts. Parents. Doctors. Teachers. Specialists. Therapists. Support groups. I was flooded with way too much information. I couldn’t begin to sort it out. I was numb. No time for feelings. I had to function. I was alone with a son I loved who had a problem. I had to fix the problem. That is what I knew how to do and I did it very well. Fix problems. Find a solution. Make everything all right.
Someone said I should talk to Sherry, a mom/expert. Sort of the mother superior for all the novice moms. I took James to her house. She was so friendly. I thought she was so happy because she knew how to make this all go away. She was going to share the secret cure with me. She had this great big smile on her face as she exclaimed, “I love autism!” Wow, I thought, will I ever love autism? I was pretty sure I wouldn’t.
We sat at her kitchen table while James played with her son. She was so perky as she laid out the future and told me what I needed to do. I stared out the window. At one point she was talking about another family. She sighed, shaking her head, and confided that they had not even grieved yet. Grief. Now there was a concept I had not thought of. She seemed to think that it was important. I filed that away for another day, another year, another decade.
Years passed. People would often say how well I handled everything. What a good mother I was. But I didn’t feel that way. I didn’t fix the problem. I failed at the only thing that really mattered. Not rational, I know. But guilt and shame are rarely rational.
And still I did not grieve. But grief, like any other feeling, will not be denied forever. (How the demons broke out is a topic for another day.) So I learned to live with grief. Chronic grief. My son will always be autistic, so my heart breaks every day.
This is what I wrote about it years ago–
This is my sadness. It speaks. I am here with you always. You cannot get away from me. Your struggle is useless. Your world view irrelevant. I am here in your heart. In your soul. You cannot cut me out. There is no medicine to make me disappear. When you struggle, I dig in deeper. Your struggle makes me heavier. My density increases. I press on your heart. I am the sadness of your life. The sadness of James, of your losses, of your fear. I will be with you always. Give in to me. Do not struggle so. Learn to live with me. Then the pain will not be so great. Accept me. Embrace me. I am your child. Love me.
Eventually I listened. I did stop fighting. I surrendered. And the pain was not so great. I learned that living with the fear of feelings was much worse than living with the feelings. Thich Nhat Hanh teaches us to cradle our feelings, all our feelings, like a baby. When I feel the sadness now I rock it tenderly and sing it lullabies. I think about all the other people in the world who grieve. I know that whatever I feel has been felt before, and is being felt this very moment, by millions of people. I reach out to them. I am filled with compassion for us all. Our hearts are one. And in that oneness I feel peace.
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