Thursday, December 31, 2015

That Sweet Spot

Jude turned three on December 16. We marked the occasion in our own quiet way. Never a big family for elaborate birthday parties, we usually just do something small at home. Jude got gingerbread cupcakes, a doll stroller, and a very shiny very loud Elsa doll. She got to do trapeze after her teacher softly sang Happy Birthday to her. She yelled at us to "Stop" when we sang to her later that night. We looked at pictures of her as a baby and she ooed along with us.

Everyone told me I'd see when we hit the three year mark. Things would change. Things have changed of course. She's a three year old not a new born. They change with all kids. They grow from babies to toddlers to preschoolers to kids. But I don't think that's what people meant when they said those words to me. They meant things would get harder. I wouldn't see her as so wonderful. I'd notice her delays more. I might see some special magic things about her. She'd become more different basically in both good and bad ways.

I'm not going to list all the things Jude can or cannot do. I've not written much lately about our life together because I've started to really think about this idea of privacy. With Camille, I can field posts I write whereas Jude like all three year olds is a bit young to make those choices. I would keep my child's dignity intact and listing her developments would chip away at that dignity. In fact, I made a commitment awhile ago to not blog about my children's disabilities as much anymore. To make things general, to focus on my own disabilities, etc.

But, she's three, and I want to write about those words that felt like bullets in those early days. Those words made me scared when I laid awake at night. I adored Jude, and I worked  hard on eradicating the ableism inside me. In order to be the parent she deserved, I needed to change. But sometimes those words haunted me. Would things get harder? Would I be made to eat my words about liberation, freedom, and equality? Would I discover whatever magical thing came from Jude's 21?

As the days passed into weeks into months into years, I stopped worrying. Each day with Jude seemed like a gift to me. This baby I'd imagined dead inside me at one point, conceived after a miscarriage made every day a bit brighter. Just like her siblings did. There was nothing special about this ability. She just existed and that was enough. After my miscarriage in June followed by a tubal ligation, I held her even closer. Well as close as one can hold an independent determined three year old.

As the fall days wound down, I realized soon Jude would be three, and I started to remember those dire predictions. They made me smile a little because none of them manifested. Jude's life is still her own. She's developed into a self that is yes, sparkly and extroverted, but not because of her chromosome.  Life has not gotten harder. I don't wish her typical or without Ds. I don't look at my friend's kids and feel any mourning. Nor do they seem to remark on her difference. She is one of my beasties. I noted this in the aftermath of R's trapeze show. Jude tumbled around during the whole performance making those around her smile as we remembered me being hugely pregnant with her. Her teacher scooped her up afterwards to introduce her around. She has become a part of the community. Eased in with the naturalness of any kid who hangs around a place long enough.

And yes of course some days are hard. But really they were hard with all my kids at this age. It's a challenging age for any kid and it's harder sometimes because she doesn't always have the language to tell us what's up. That said we've all learned to communicate with Jude and how to read her body language. We've adapted and it's been fine. Sometimes when I feel worries creeping on me, I remember that adapting is what our family does best. All of our children have some neurological stuff going on from Autism to epilepsy to anxiety and depression. It's cool. We've got it covered. We've been adapting for years now. Long before Jude came along we mastered the art of listening to our kids, respecting their needs and then rolling with it.

In the end, I'm the one who changed. Things shifted for me. I learned much about acceptance over the last three years. I found a space in which to meet parents and Autistic people who shared my views on having a child with Autism. I read a lot about the early fight for disability rights. I've become involved in small ways in the broader disability rights movement, and in bigger ways in the body positivity movement. I've learned to recognize ableism as soon as I feel it and feel more than free to call it out in others. It's important because things are going to be hard for Jude if we don't change society. Things get hard when schools don't think our kids belong in "regular" classrooms. Things get hard when employees pay our kids pennies. Things are hard when we don't have reasonable independent living options for people with intellectual disabilities. Things are hard when we don't have a single payer health care system making it difficult for families to give their kids the care they need.  Things are hard when we continue to turn people with disabilities into inspirational memes instead of seeming them as the messy, real, people they are. What makes Jude's life hard has nothing to do with having Down syndrome. Jude's life is hard because of what people think about those with Down syndrome.

I keep hearing Morrissey singing "There's no such thing as normal." Cause in my family this is so true. Or maybe it's just our version of normal. For us there isn't such a thing and that makes life beautiful, messy and pretty much perfect.

Monday, December 28, 2015

Warning: Fat Girl On a Bar

I've been watching my girls do trapeze for three years at this point. Around a year ago, I realized I that I watched with a hint of longing. I knew from the moment I heard of Canopy it was something I would have loved as a kid. I always wanted to dance but I don't think there was even a dance school in my little town. Not that we likely would have been able to afford it had there been one. Plus I was never built like the dancers, I saw on television. While not a fat kid, I was not a thin kid either. Solid was the word I heard used and it fit. Strong too. I loved sports. Loved riding my bike. Loved climbing trees. And I loved spinning upside down. Watching the girls do trapeze showed that dancing didn't have to belong to one kind of body. In fact, the body I had as a girl, the ones my girls inhabit now, actually seemed fit perfectly. My girls are strong. Strong like I was when I was ten.

One day I realized it wasn't just a nostalgic longing I felt as I watched my girls climb and soar. I wanted to be out there on the mat.

But I was fat. Fatter than I'd ever been in my life except when with child. All the woman I saw out there were decidedly not fat. Yeah some weren't skinny but none of them mirrored my proportions. I've done a lot of things outside of my comfort zone this year in terms of moving the body. I tried belly dancing. I ran in front of about fifty Jr. High students. I refused to shun the pool because of who I looked in a bathing suit. But this idea, to take a class in aerial dance, pushed all my anxiety buttons.

Overtime I started to see that some of the younger kids were big too. And I watched the instructors treat them with the same respect and care as they did all the other kids.

So I just watched. I thought about taking a class. Talked about it a lot with Ann, Camille and Jude's amazing tutor, whom I trust with my feelings about my body. She encouraged me. Assured me I could do it.

"I'm not strong enough," I told her one day.
"The whole point is to get stronger," she said.
"I'm fat," I finally confessed the real reason I hesitated.
"So what? Trapeze is for all bodies."

I didn't really believe her. Didn't believe her for me at least. I believed her when I saw those big kids soar and work. Believed her when she worked with Jude and her low muscle tone. I just couldn't believe her about me because I didn't believe it about myself.

And then one day she talked to me about body positivity. The studio wanted to make sure they were getting it right. That moved me. Pushed me a little closer into that circle of trust. See my trust issues don't come from me not trusting my body. I don't trust many other people with my body. Especially exercise people. I am not unaware of how people feel about fat bodies. They think they're weak, and they mock them when they move. I always kept to exercise that didn't expose me to the gaze of others. No group classes. And if it was a group class, I tried to stick with things that seemed to fit my body. I don't knock this inclination because it's about being safe. My relationship with my body already fragile rests on a precarious line between loathing and acceptance. Ann, already stuck out  in terms of trust because she's a thin woman. I don't usually feel safe with thin woman. But Ann disarmed me. And when she came to me to talk about getting it right, I felt myself wondering again if maybe just maybe I could give into the urge to get on that damn bar.

Maybe what pushed me over that line came from watching my girls. Camille worked harder than I've ever seen her work this fall. Determined to do her routine with all the difficult moves, she put herself in Ann's hands and went over the moves again and again. Jude's sheer joy from trapeze reminded me that I once knew the joy of spinning and swinging. Jude trusts Ann as well. Completely with great love. Maybe I needed to trust them too. Trust that they would be okay with my fat body out there trying to do these things.

I signed up. My class starts next week and I'm equal parts terrified and excited. A very fat girl on a bar seems like an unlikely thing to me. But I am going to push away from the loathing to the accepting. Push through to trusting that my body can do some of these things. Perhaps people will laugh at me, doubt me. That's okay. I'm not doing this for them. I'm doing it for me. But I'm also doing it to say "fuck fear."