I am writing this at 5 in the morning, because I haven't been able to sleep. I haven't been able to sleep because I've been stressed. Though I had wanted to stay with my son full-time until he transitioned to school next year, I needed some cash and an institutional affiliation while I am on the academic job market, so I decided to return to university teaching part time. I had thought this would be a fairly simple; I would keep my course load light, and had already identified a few special needs focused or inclusive programs that offered part-time, affordable childcare, and were contracted with my regional center. It would be good for my little lion, to spend more time with other kids, to have typically developing peer models, and I would recover my professional identity.
STRESS. Did not anticipate that these "special needs" schools would basically turn us away, would actually have pretty low percentages of children with special needs in their classrooms, would not even know what an colostomy is is and sound freaked out when I explained it, would tell me, not always gently, that they were not equipped to care for a two-year old who needs assistance to walk and eat. (An angry ranting blog on this in the future) Did not anticipate hours on the phone, trying to get referrals, and authorizations, and developmental evaluations and doctor and therapy appointments, all to arrange my son's schedule to accommodate me teaching a few classes for a few dollars a month. Did not anticipate that once I really sat down and crunched the numbers, hours and dollars, to be a good teacher, and a good mother, and a good scholar, and keep a household going, and launch a search for a tenure track academic job, the shit just would not pencil out. Did not anticipate those numbers running through my head, keeping me from finding my REM cycle, night after night.
About 3am, I decided to get up and clean my kitchen, and listen to funny podcasts. No Trump, no war, no Charlottesville, nothing serious. Somehow, instead of Two Dope Queens, I stumbled on to an interview with several Freedom Riders. Stories of young people huddled on a burning bus with an angry mob outside wondering if they were going to die was not what I came to the internet for at 3 in the morning. But somehow, it was what I needed. I wish I could tell you the link or names, but seriously, it was 3 in the morning, and don't know how I got to this story in the first place. What amazed me was that after narrowly escaping death, after being beaten and damaged and scarred, people got back on those busses, and sang freedom songs as they rode back South.
I don't like to make analogies between ordeals. But for some reason, listening to this gave me life. Not just in a "If they could get through that, I can get through this" kind of way, though that was part of it. But just in the realization that struggle, any kind of struggle: for social justice, within a relationship, to survive another day, is a continuum. There is not one big battle that achieves a utopian destiny forever. You struggle forever. Knowing it will be hard, knowing it will hurt, you go in again and again. Every battle hurts you, scars you. But it also reveals the layers of resilience, and capacities you didn't know you had.
My lion is my first child, and I don't know what parenting without special needs is like, but I know that with it, it is a continuum that holds struggle, and pain, and joy. None of these things last inevitably. You go home from hospital stays knowing that you will be back. You celebrate developmental achievements knowing that regressions will happen. You laugh and cuddle with your baby knowing that you will have to hold him through pain that a baby should never have to feel. You look at a calendar full of more markups than a D paper, and a paycheck that is always too small, and a pile of mail that is always too large. Then you pack that diaper bag, scoop him up, and go.
I did finally listen to Two Dope Queens, and laughed, while I finished cleaning the kitchen. I checked on my son, sleeping wildly, and smiled as I tucked his little feet, that were sticking out of the crib slats, back into the bed. I misted my apartment with sage spray, and opened windows to breathe in the night air. City nights are never quiet, but it was quiet enough to feel my thoughts, and my soul calm. I know that peace will not last, but that's ok. I will get up tomorrow (well, later today) and I will go on.
I got this. For now.
“When I dare to be powerful - to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.” Audre Lorde