Calliope: Missing Pieces of You

When Calliope was born, I wanted to do everything right. I wasn't going to have more children, and I was going to appreciate her and enjoy her to the fullest. I wasn't going to get angry about silly things. I was going to finally get it right with #4. And I did and do appreciate and enjoy her, but I didn't pay as much attention as I meant to, and I didn't refrain from getting angry about things that don't really matter. Of course we never achieve all of our lofty parenting goals, but somehow my failure hurts more with Calliope. I don't remember things well enough. My stupid OCD got in the way too. But I didn't realize we'd lose some of Calliope. I didn't realize she would gradually regress and that pieces of who she was would be lost. Or, at least, that parts of her would become so much more difficult for me to see, if they aren't lost. Calliope was "normal" until somewhere in the neighborhood of three years old. She walked at eleven months. She talked in sentences quite early. She was excited to go to her cousin's house, and she engaged in imaginative play with him. She lit up when Grandpa was around, and she wanted his attention. But somewhere along the way, she started talking less. She became less social. We couldn't communicate with her the way we used to. We were having so much trouble with potty training. She wasn't following directions in her church class for small children. She would run out of the house with no regard for her own safety. I realized I couldn't send her to the preschool where I'd enrolled her because they wouldn't be able to handle her. They weren't equipped for her needs. It didn't happen all at once. Anyway, I don't think it did. At least, it took me awhile to realize it had even happened, that something had been lost to us. And was I so wrapped up in my own mental illness that I didn't see what was happening as soon as I should have? I took her to a developmental pediatrician so that I could get a diagnosis, so that I could begin to seek help, get her into the special needs preschool. I wasn't surprised: autism. I don't know that "autism" means much, other than as a way to qualify for services. It seems to be the word we use for people who have some kind of developmental abnormality when we have found no other known cause. If I say my child is autistic, it could mean any number of things, but it is the word we use, because it's all we have. There is no known cause, but I have spent a lot of time wondering what happened, how it happened, if I could have gotten her help faster, and whether or not I caused it or could have prevented it. 

Most of the time, I just roll with it. I love my girl. She is still full of personality. She is still here to cuddle. Though we have some communication barriers, she still has language. She still makes me laugh. But there are times when I grieve for the pieces of her that I can't see anymore. Sometimes I watch a home video from when she was younger, and I'm amazed at the difference in her---in the past she will be talking and interacting with people in ways I don't see now. And I curse my memory because I can't remember her well enough, and that's true of all of my children's young years, but with her it hurts the most because I have this feeling of losing some part of her and wanting to better remember her before she regressed.

Sometimes it comes home to me, the things I expected for her that aren't happening. Today I was visiting my sister, who was lamenting the lack of a cousin to be a playmate for her little girl, and it hurt that Calliope wasn't filling that role. And I see children her age learning to read, and I wonder if Calliope will learn to read. I pick her up from school and see other children excitedly telling their parents about something they did at school that day, and I want Calliope to tell me about her day. And I worry because right now she's a little girl, and she's adorable, but as she grows up, will people be less accepting of her than they are now while she's small and cute? Because even now, I watch her cousins slam the door when she starts to come into a room, because they don't want her messing something up or because they just don't want her around. My own children sometimes struggle. She can be difficult. She has destroyed their things. She throws tantrums. So what will adult-hood be? How much progress will we make?

We had a similar situation with Jasper. He regressed between ages three and four. But it seems he had developed hearing problems, and once we addressed the hearing loss, the pieces of him that had been lost gradually returned. And something in me keeps thinking and hoping that eventually that will happen for Calliope. We have checked into her hearing. We have checked into her vision. The results of those tests haven't been entirely conclusive, as she hasn't been a cooperative test subject, but there has been no obvious and easy fix. And sometimes when I realize Calliope was somewhere around three years old when she regressed, and that now she is seven---that we've now had over twice as much time post regression---it hurts, and my hope of gaining back whatever it was we lost gets dimmer.

I hope I don't sound like I'm not grateful for Calliope. She's given us more than a few scares, and I'm so glad she's here. I love her as she is, but I do want the part of her I feel is lost or hidden back, too. I wonder if I should feel guilty for grieving what was lost in Calliope. It doesn't mean I don't appreciate her. It doesn't mean I don't see what is still wonderful about her. But is it wrong to grieve for what she (or I) lost? I know it isn't really helpful. Mostly, I avoid dwelling on it, because it isn't useful, and it is painful. Mostly, I just enjoy her as she is, and I deal with the difficulties she brings, because she isn't easy; I'd be lying if I pretended parenting Calliope isn't so much more difficult than I expected. (I never expected "poop smearing" to be a regular conversation topic in my home or to have people wearing elf ears and carrying swords look at me like I'm the weirdo as my son carries my screaming, writhing daughter who has full-on lost it across the Renaissance fair where my car is on the other end of the massive park or to tell my kid to please quit trying to sniff my armpits or that sleeping in would still be a foreign concept when my youngest is seven, for example.) But I try to move forward with getting her therapy and getting her help in school to try to help her to achieve and learn. But sometimes I wallow. And then I go find her sleeping in her bed or wherever she happens to be (though usually these moments of grief strike me at night), and I kiss her cheek, and I am so happy that I have her. I'm going to go do that now.