Published on: December 30, 2013
Recently I started researching a story about special-needs children. Of course, I ended up talking with experts about my own child. On one level, this felt completely wonderful. Still, it also opened up a wound I have spent three years trying to suture shut.
Talking with learning specialists reminds me there is a deep grief that coincides with having a child with learning disabilities.
I recall reading a memoir written by a dad about his autistic son called Following Ezra. Some lines of his book are somewhat famous in my world circle. He wrote about how a counselor told them early on that they would need to deal with their grief because they didn’t get the child they had dreamed of before they even had a child. He says he never felt this deep sadness, that he has always been concerned with meeting Ezra where he was at; hence the book’s title.
This has not been my experience. Oh, the grace of not falling into that pit of despair because of my expectation that my girl would have an easy time with school. When I first discovered the depths of Annie’s learning disabilities, I really felt like there had been a death in the family. This is embarrassing to admit. When my writing partner commented on my first draft of my memoir, she wrote in the margins, “Nobody died. Why does it feel like someone has died?”
Because I knew Annie had trouble learning before the experts ever chimed in, but I spent years hoping fairy dust would land on her head. Then, magically, her issues would have resolved and she would have unfolded into a girl that learned like all the other children in her class.
I wouldn’t have had to scale back at my part-time job. I wouldn’t have to learn the special-education language and system. Annie wouldn’t have completely shut down inside of the classroom. We wouldn’t have spent three years building her confidence back up so she would finally grow to like school enough not to complain every morning about going.
My older daughter wouldn’t have written a poem during her third grade year with this line: “I worry about my sister.” Just typing these words brings tears to my eyes.
My husband and I wouldn’t have argued about whether or not my daughter has dyslexia. I wouldn’t remember him saying, “If only she would focus, then she could learn.” I wouldn’t know the subtle peace that came on the day he finally said, “I think she has dyslexia. Learning might always be a struggle for her.”
This is the utter despair that people without children like mine may have a hard time understanding. I am glad they don’t have to understand this. I know each parent has a child with their own unique difficult issues. I also know that the educational advocate I interviewed recently also admitted that having a child with any learning issue sucks, that the system we operate within now makes life hard.
There is a relief in hearing this. It’s OK that I spend time grieving this hard part of my life and what I have given up to help my girl. It goes without saying that I am OK with giving it up. But if I don’t find a space to say how I feel, my feelings get in the way of helping my girl.
It reminds me a short spiritual video I watched on Facebook. An Indian guru talked about conjoined twins, how if one twin falls, the other twin falls, too. So a surgeon separates them. Now if one twin falls, the other twin can help pick the twin up. The guru says this is what it is like to be a parent. We are so attached to our children. We must create a separation so we are not so tied to them, so we don’t feel like we have fallen down when they fall down.
If we can take care of our own feelings, then we can help our struggling children with more ease.
It has taken me a long time to lessen my grief, and sometimes it still comes out in waves, like it did as I started working on this story research. But as I have traveled farther along on this journey with my daughter, I am better able to help her because I have worked through my grief on many levels. Years ago watching my Annie struggle and cry and fuse at tutoring slayed me. Afterward I would sometimes go home and take a nap to recover.
Now these tutoring struggles are much easier to deal with. I’m not saying it doesn’t still bite sometimes. I’m saying that slowly working to deal with my own feelings has left me freer to deal with Annie’s struggles and feelings about tutoring and dyslexia. Yes, I have years of experience behind me to know what to say to help her. But my grief is no longer overwhelming and getting in the way of my helping her with her learning issues.
Her struggle is hers. I get to help her learn how to figure it out.
This is pretty much what I hear in my head every time Annie tells me she doesn’t want to do tutoring, as she tells me it isn’t fair in a very real and loud tone. Yup, here I am, explaining to her once again why she has to do her tutoring, and how I am here to help her.
The grief isn’t there every time she stumbles now. For that I am glad. And when the sadness does hit me, I find the ear of a friend, or I take a long, long run, or maybe I cry late at night as I tell my husband about the interesting interview and how it reminded me of how part of each one of my days is spent dealing with dyslexia.
And then I feel better. And I hang out with my shining star of a girl and notice one of the many other awesome things about her. Then grief has receded, and it’s just my life again, the lucky life of a lucky mom on a sunny, end-of-summer day.