Mother, Writer, Madwoman

There’s so much I want to tell you about what I’ve learned in the past decade, so much I’ve been through. I wake up every morning with gobs of ideas for blog posts and I find scraps in my computer and I don’t know what to post first. Just this week so much has happened. I have an old friend I haven’t written in years because I don’t know where to start in terms of catching up. Another friend, who I recently met in New Orleans in Korean/Latino fusion restaurant under the Zen Temple (my first outing with my husband in ten years), told me, “Just start with what’s happened to you in the past three days.” Even that would make up a very long entry about the social security system in Louisiana and would fry peoples’ nerves.

I will say this much for today’s entry though: A year ago, my daughter was in a mental hospital and I was frightened and tired. Today, my daughter is well, happy, and enjoying summer gym classes and swimming camp. I don’t remember the last time we had actual leisure time (No one told me that Lagaan was a four-hour movie about a three-day cricket match but Sophie and I have more Bollywood movies on our to-watch list). Friends keep recommending more DVDs—I’m lucky if I can find two hours in the day to watch anything. “I need to write again,” I say. “I want to write a book about what Sophie’s taught me.”  

Many parents of special needs kids will tell you that their children are their greatest teachers. Lessons one, two and three are pain, humility and compassion, not necessarily in that order and always over and over again. Of course, parenting any child is hard-won education is you’re paying attention and even if you’re not; kids have this way of marking time by growing up a whole five inches and learning a new skill when the adults around them seem to have barely budged beyond their computer chairs to reach for their mid-morning coffee. But wait, look closer—you’ve changed too—and not only from that first drastic moment the newborn arrived and shifted your ordinary “I plan to avoid suffering, pursue a good life” plan to “I will do anything, I will DIE for this little squirming farting baby human!”

I’ve seen myself in Sophie. She’s so much like me, only more intense. Her bipolar presented before puberty (mine presented in my late teens). For nights on end, when she was seven, eight, nine years old, I stayed up with her on a sleeping bag in the living room (her ranting bothered other family members and she needed supervision because she broke things, sometimes glass stuff, and she hallucinated favorite cartoons). Her depressions triggered my depressions; we wept together. It took everything I had and more; it was crawling across deserts of cut glass and falling into rivers of fire and imagining that the world didn’t need people like me and my daughter and re-imagining that the world had made us and so we would swim through the fire to another shore of cut glass; it was pure survival; it was unlike anything I’d gone through alone in my own sufferings because now I had to deal with the guilt and privilege of my legacy to my daughter. I had to get through it all for her.

 

And then slowly as it happens, my child became more independent. She didn’t need my constant vigilance. As I’ll describe in other entries, the struggle with getting services was excruciating and we’re currently on a ten-year waiting list in Louisiana for care that she qualifies for, but Sophie has an aide in school and a part-time sitter, and only this year, I’ve found myself having some peace of mind and some actual free time. The shock of that still hasn’t settled. I’ve started this blog; I’ve done some more writing. Before children, I identified as a writer and had some success writing.  I could write several books now about how it’s really impossible, in all kinds of sociopolitical ways, to write while caring for children in a society that doesn’t value women or doesn’t even acknowledge the existence of its special needs children. I acknowledge that my circumstances are extreme, and I live in a state that’s positively criminal towards the mentally ill, but still, try writing when your child is flinging furniture on daily basis, can't go to school and there are no respite services.

In May, I submitted a piece about Sophie to an anthology about special needs children (the “Sometimes My Smile Hurts” piece). It was rejected—which stunned me too, since I’ve never had a piece rejected for a book since I was nineteen, but Sophie has been helping me redefine my humility for a while too. I figure I’ll find my audience; I’m blogging here in the wild, no clue of who I’m writing for, and I haven’t written a piece for publication in a decade (the last articles were so short and for vegetarian and Jewish parenting journals—and yes, I did some poetry and fiction in odd moments instead of drinking or eating because I’m crazy like that).  I knew when I submitted my Sophie piece to the anthology that it was twice as long as the call for papers stated, that it didn’t fit the writing style of the editor’s previous books which have been described as “mommy blog chicken soup for the soul compilations,” that the mention of Woody Allen predation was a wrong note, but I went ahead and turned it in because I thought I would get published since I ALWAYS got published, and now I know I have to make my own space and not find it in someone else’s. This blog will be my own book one day. I’ve been talking about that with Sophie’s doctor for years.  Once upon a time, when I was a suicidal young girl, I used to rationalize, “there are enough people in the world so no one will miss me.”  These days, when I think of my book, it’s “sure, there are plenty books about special needs kids and parenting them, but none will be like mine.”