Yes, yes, I know it's very common place to be thinking about love on Valentine's Day but if it helps ease your worry at me being common place, it's not necessarily romantic love I've been mulling. The Boycott Autism Speaks movement (which I 100% support) is having a flash blog today called "Love Not Fear." Of course being us we never did get anything off the ground although C and I discussed it a bit. C is always puzzled that people want to end Autism and the hate shown towards those with Autism. She's also puzzled at race hate as well. "It doesn't make sense." she'll tell me. She gets very angry when she hears people use the "R" word, and she tears up that people say awful things about those with Ds. Whenever people comment on how Autism has stolen their child or made them child a "robot," I think about these moments with C. C doesn't always process emotion the way I do but she is an incredibly feeling and compassionate child (most of the time, she's a kid and she has a lot of siblings ya know).
And I started thinking about love even more. I am in love with my family so deeply. I love my kids with an intensity that is frightening. My biggest fear is hands down losing those I love. Even the thought of living without my children and husband is a dark space that I can't really touch without feeling a little sick to my stomach. I have struggled with this love over the years because it scared me. I didn't feel worthy of the love I get in return. I was scared that something was going to happen and that I was going to lose this love. I'd do things to put a distance between H and I. I'd try to hold everyone a bit away and to close off tiny bits of myself in an attempt to not get hurt. But in the end, I decided to abandon myself to this love. To let go and fall.
Last night I started to think again about love, and about acceptance. A bit back I wrote that I thought we could love our children but that oftentimes we don't respect them, and I was called on that by a few bloggers. This is what came to mind last night when I thought about love not fear because I sometimes think love and fear are not mutually exclusive. Let me piece this out.
I try to live my life in awareness that dichotomy are just that dichotomy. I am not convinced that we can not place love into the categories of real and false. I think sometimes that love leads us to us places that don't look the way we imagine love in a perfect world. Sometimes love leads us to be petty, narrow little people. Sometimes love makes us feel scared.
Here's what I'm getting at. What happens when you have a child that has a condition or is rather diagnosed with something that you have been taught to fear your whole life? Does the fear you feel at those words mean you don't love your child? I can't answer this for everyone but I can answer it for myself. Yes. Resoundingly so. I loved Camille even as I began to suspect that she might have Autism. And I loved Jude even when I got the call that she had Down syndrome. I never stopped loving my children even as I was tormented with fear about what these words might mean.
For a very brief amount of time I began to understand what people were doing when they said "I love my child but I hate Autism/Down syndrome." For a brief time. People say this as a way to avoid having to make a big mental shift in how they think about these conditions. If they can think about their child as separate from these things, they can then go on to keep loving their child but have a way out of accepting their child as is.
This is where I think the part about acceptance is a big deal when we come to think about love over fear. Love over fear means that we didn't love before rather it means that we have to push through what we fear to come to a new understanding about things that used to frighten us. And we have to do a lot of soul searching about the kind of bias that lead us to fear that thing in the first place. Acceptance is vital here. Because when we accept our children for who they are, when we stop fearing that something that can't be separated from our children, we not only choose love but we choose to love without fear.
And it's not this is love more real but perhaps we can say it's more just. Love, the kind of love that changes the world, always means letting go of our preconceived ideas about things. For me that meant some intense reexamination of my ideas about intellectual disabilities. It's also meant that I have had to lay my parenting pride aside and listen to other voices. It's meant that I have to go against some pretty accepted mainstream ideas about therapy, etc. Accepting my children has also meant in a hard but beautiful way accepting myself; coming to realize that a lot of the things about my self that I have stifled or hated or felt ashamed of were things that I could be celebrating or at least accepting instead of suppressing.
Love is so much harder and complicated then the romantic dreams I envisioned when I was a lonely and awkward teenager. The romance books I consumed hadn't quite prepared me for the love I encountered in this world. I spent many years being in love with people who loved what they imagined they could change about me. They loved the way that my body could look if I only stopped eating so much. They loved the way my mind could be if I read better books or went to college. They loved the way I could be if I wasn't so depressed/emotionally damaged. They loved the way I could be if I could hide the quirks, the social anxiety. But it wasn't until I meet H that I found someone who love me for who I was, who accepted me as given. And over the years, I have begun to heal, to come out of the walls I hid behind. It's amazing what blooms when one is accepted and loved for all their many selves. And when I realized this, when I realized how freeing it was to be accepted how could I not wish this for my children? I do not wish to take away anything from them. They will grow and change into different beings each year as happens with us all but I will do my damnedest to ensure that this growing and shaping happens in a space where they are accepted. This is why I will not change my child to fit the world but demand that the world change to fit my child.
1 comment:
Thank you for writing this. I love your posts because - because neurodiversity, that's why. Because sometimes my Autistic friends still hesitate when I include my daughter (who has Patau syndrome) when talking about neurodiversity and acceptance, and because there are few blogs about or by people with trisomies coming from a place of equality.
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