Bittersweet

A diaversary is the anniversary of a person’s diagnosis with type 1 diabetes. Today is my daughter’s first diaversary.

At 6am my husband’s alarm went off. I felt sad. But not like a go-back-to-sleep-sad; I couldn’t go back to sleep. I laid awake until 6:30. Then I got up. And I cried a little.

I mentioned recently that I feel numb; I feel like parenting is a job rather than a joy because of diabetes. I feel so robotic about it because I’m trying to do the tasks without thinking about their significance. For the first half of this past year I was a train wreck. I was losing control of everything just to keep control over diabetes. I’m still a train wreck; on paper my life is a mess I think. But at some point you just have to stop thinking about it all. At some point you just have to move forward. At some point I stopped thinking about the fact that without the shots Ada would be in danger. I started just doing them like a job. And I’m getting paid by Ada’s life. When I’m not giving shots or checking glucose I am doing one of three things: housework, nothing, or worrying about Ada’s health. I say nothing, but nothing includes my writing. That’s a nice indication of how I’m feeling about myself lately. I consider the work I do that brings me the most pleasure as nothing. I don’t give myself credit for the time I spend doing this. I love to write. That’s why I write, but I am always thinking about how I could be doing dishes instead. That dishes is more important work. This is weird. I am realizing that I really do treat myself like housework is more valuable than my writing.

Since I began writing publicly on a regular basis, I have laughingly called myself a writer. I want to be a writer. I wish I was a writer. I guess I’m a writer. I write. Not for a living, but for living. I’m also a parent and a spouse. And a homemaker. And a pancreas. And I still feel the sting of being told in the past that I don’t have a “real job.”

The really weird thing is that I do things that I love, I just don’t feel better because I do them. Maybe I do. I just don’t feel best as a result of them. I sillily thought love would bring happiness. I am surrounded by love. Why doesn’t it make me happy? I think I would feel much worse if I had a “real job.” Can you see me in an office? I did that for a year once. I actually did ok although I pushed the dress code limits and was late a lot. I did it though. It felt rewarding to get paid to do a job. I was bored though. So I went back to college. I majored in English, which is laughably so me. I thought I wanted to be a professor. I just want to be a bohemian; someone who lives and breathes art. I wanted to look at art, read art, talk about art, listen to other people talk about art, create art, criticize art, theorize art, analyze art. I wanted to be free from everyday responsibilities like and 9-5, an eating schedule, a sleeping schedule, deadlines, bills. I just want live and do what I feel like doing. I just wanted to do what made me happy. I still do. Everyone should be able to do what makes them happy. I truly feel that way. I just bully people into letting me do what I can to try to be happy because I have an illness that makes me want to die otherwise. It really isn’t fair to everyone else who sacrifices so that I can live. It’s why I’m generally a very apologetic person. I feel very sorry about all of the accomodation or attention I require to survive. I feel very selfish.

I really ought to be asking why it is that God would give a severely depressed mother a child with t1d. I feel like the positive thing to do would be to do a spiritual search for what I can learn from this weird match up. At one point I felt that maybe my illness had prepared me to face t1d. The resilience I have developed does probably help, but mostly I’m baffled.

What the hell, God? What’s the plan here? Why do I feel like a sad robot? Why is everything bittersweet? Everything. Give me some clue, some sign that this makes sense.

But you know what? I won’t get a sign. I’m far too closed off right now to be open to seeing whatever sign God might send. I don’t want to see what this means. I dread what I will find if I once again try to find the significance in all of this. I dread finding nothing. Or finding that I’m being punished somehow. I’m afraid of what the real meaning for mine and Ada’s lives are given this weird combination. It has caused her anxiety, and it has caused me to just make a lot of mistakes over the year. Like I’m just a constant fuck up everywhere except here on the blog. No joke. The blog has been going great, but everything else is a mess.

Right now the diaversary shows me how much damage a year can do.

But it also shows me how much I can face and still keep putting one foot in front of the other. I feel numb but I’m still on my feet. That counts for something. And what it really really means is that my daughter has survived a whole year with this blasted disease. It’s a year that we’ve survived without a cure. It’s a year that Ada has stayed happy. It is a full year without medical complications. It’s getting to throw away the unused glucagon because we never had an emergency.

It’s good. We’re celebrating. Eating my daughter’s favorite meal tonight. Maybe even playing that stupid Pie in the Face game. She deserves all the credit. Without her I’d probably give up.

Hold your loved ones close. You don’t need an anniversary of diagnosis to recognize you’ve survived another year. Keep surviving. Keep fighting. Keep working for the happiness you deserve.

Happy diaversary, Ada Rose. You’re the brightest star in my constant darkness.

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