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Posts Tagged ‘chronic illness’

Some days, I just want to scream.

Most days, I want to scream. But some days, that want becomes a need.

Today was one of those days: the “want” was born out of last weekend, when I spent far more time driving around, chasing down various food or recipe ingredients for my daughter’s wacky diet and expensive palate than I would have liked. I have a paper due in my Globalization in Education class, and I had imagined completing it over the weekend and being done with it.

Even after four or five years of getting my plans squashed into the dust without a moment’s notice, my imagination continues to be a healthy optimist.

After driving around most of the South Bay on Friday for one thing or another, I could have told my daughter I was done on Saturday. She is rarely selfish, even though she has every justification to be so, and even more rarely unappreciative of what it takes to care for her. But…cooking, the ideas for recipes, the planning, the research, the entire process of it–that’s what makes her happy. It’s what has always made her happy: she was in the kitchen inventing recipes by the time she was three. She couldn’t read yet, but wouldn’t be able to, not really, for several years, but it didn’t matter, and I never made it matter. I opened the cupboards and we talked about ingredients: flour and sugar, spices, sauces, acids, oils, She asked questions I usually didn’t even know the answers to, because I had honestly never thought about why chocolate chip cookies flattened if you left them in the oven too long or made them too large. I had never considered why shortening was better then butter in pie crusts. If there is one place I follow the rules, it is in the kitchen.

I love food, but I’m not exactly picky. I don’t eat bugs, things with heads, or live things. Otherwise, if I’m hungry, I will at least try it. In fact, I don’t even have to be hungry. It just has to include chocolate of some sort, frosting of any kind, or salt.

But she was. And so I let her figure things out. Yes, her process made a mess of the kitchen frequently, and her recipes were often inedible for one reason or another. But she delighted in everything she made, and she learned from everything she made. I was still making things the way I had always made them, and along came this five year old who started to tell me how to make them better….I was thrilled. I had fallen in love with her father in part because he made me cookies when we were just flirting and bought me Rice Krispie treats from the food trucks on College Avenue and made me stew for one of our early dates. The way to my heart has always been through my stomach, and here was my daughter, wanting to take over in the kitchen.

If I had never loved her before then–which was certainly not the case, but if I hadn’t–I would have fallen in love with her then. I’d happily clean up after her for the rest of my life if I never had to set foot in the kitchen again.

Of course, she was five, her interest waxed and waned, so I did, in fact, step foot into the kitchen repeatedly for many years.

And then she started to get sick.

The inner chef in her went to work: she broke down everything we ate and replaced ingredients. I may not have been the greatest chef, but I’d always ensured we ate fairly healthy–little to no junk food, or junk food made out of kale, juice without added sugar, dessert was not a staple, little to no fast food. We ate homemade dinners most nights during the week. We’d also been gluten and dairy free by that point, due to intolerances for all of us. But Autumn was determined to figure out the cause of her stomach pains, bloating and severe constipation and diarrhea.

When nothing worked, and she only continued to be in more pain and her health declined, she turned away from food. She felt it had betrayed her. She also felt like a failure.

That feeling didn’t get any better when I took her to Seattle Children’s Hospital and they diagnosed her with an eating disorder without so much as listening to our story.

She did have an eating disorder. She and I were happy to admit that. But it wasn’t because she thought she was fat or ugly. She was, in fact, 85 pounds and hated her body for betraying her. She wanted to eat, and she did eat, as much as she could, but it hurt, and some days she would lie on the floor and scream after eating.

She and I did the best we could with little information and absolutely no medical assistance.

She put on weight in SCH, because they wouldn’t let her move, and they shoved food down her stomach 3 times a day. She cried after every meal, sometimes screamed. They didn’t care. She wanted to scream after every meal; some days, she told me, the want became a need, and I would hold her in my arms while she would scream into my shirt or a pillow. They had told her if she kept screaming, they would move her to a ward where I wasn’t allowed to go. So she screamed in silence.

After Seattle Children’s, Autumn went back to the kitchen. She was determined she would beat whatever was going on, and the hospital had convinced her it was all in her head. That conviction would lurk beneath everything she did and said and thought and felt until the day she was diagnosed with Lyme. But she never left the kitchen. Cooking became all she had. When she couldn’t eat, she cooked for me. She would often cook for her brother, but he wasn’t fond of her attempts to get him to eat more vegetables and less meat.

Her delight is plain on her face when she is talking about food or a recipe or modifications to something that didn’t work. She talks food, dreams food, breathes food. She has had to drag in chairs to sit on while she cooks, or more recently, laid on the floor with her feet up to try and reduce the inflammation while waiting for something to boil. But while she cannot control what her body is doing from one day to the next, she can control her recipes: in the kitchen, she forgets, for a little while, about the truth of her life.

So, when she is having a good day, and she wants to find rare gluten free ingredients to create something she has a taste for, I will drive her to the ends of the earth.

I forget, for a little while, about the truth of her life.

And mine.

I do not deny I was meant to be a mother. Motherhood was another piece to the puzzle of me. But being a caretaker? A nurse? That’s a whole different level of maternal skill. Not all mothers can be nurses, and not all nurses can be mothers. I fully planned on being emotionally available to my children for the rest of my life. I just thought that, at some point, I wouldn’t have to be so very physically, mentally and emotionally available to them.

Some weeks are harder then others. The problem with being a mom, and a caretaker, is that much of the time, even if we have a partner, we have to scream in silence. Not out of fear that we will be taken from our children. But out of fear that if we start, we will not stop.

Today, I woke up wanting to scream. By tonight, after a clinic appointment went from twenty minutes to two hours because the home health nurse kinked the picc line yesterday, after my daughter’s babesia-induced migraine caused her to be both whiny, dramatic and demanding, after the dog got it up in his butt that running around the apartment barking like a lunatic was a great idea, after I went into my daughter’s bathroom–which I usually try not to do but it was unavoidable tonight–after I thought we were “done” for the night so I settled down to watch an online concert…..only to have the picc line jam again during an infusion and the dog being an ass and there being no chocolate in the apartment…..

The want to scream became a need.

I fixed my daughter’s picc line and restarted the infusion. I did 85 situps and 110 crunches and 48 pushups. I took the dog outside to run off his looniness. And I tilted my head back towards the stars and breathed.

It wasn’t screaming. But I was tired from the pushups, which was exactly the point, and the air was cool against my cheeks. My dog looked like an idiot horse amusing himself with his own tail, and the night was calm.

The need to scream settled back into a low humming want in the back of my mind.

Tomorrow I will be able to sleep in a little later, and I have no classes. I can finish my paper and take care of my daughter and even clean her bathroom without puking. Probably.

Maybe tomorrow will be a day I won’t need to scream.

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