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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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It freezes me, this packing up of things that have belonged in my world for my entire adult life. I can only do a little at a time before the breathlessness comes over me, every muscle in my body succumbing to the shakes as if I were going through withdrawals.

“I know we’re going through ‘rough’ times right now,” I wrote in a card that I find nestled between a stack of books in the bedroom. “But no matter what, I will always love you.”

No matter what.

I tell my children this: “I will always love you. No matter what.” My son appears to accept this as fact and has never questioned exactly what he might have to do for me to not love him. My daughter is not so easily fooled.

“Will you still love me if I rob a bank?” she has asked.DSC_3026

“Yes. I’ll be disappointed, but I’ll still love you,” I reply.

“Will you still love me if I steal a car?”

“Yes. I will make you take the car back and turn yourself in to the police, but I’ll stand by you. I will still love you.”

“What if I become a vampire?” she says, “and try to drink your blood? Or a zombie, and I try to eat your brains? Will you still love me, no matter what, or will you stake me or chop me in half?”

(Honest, she has not watched Buffy the Vampire Slayer or The Walking Dead. She doesn’t need to.)

I argue that’s a more difficult question, because if she’s a vampire, then she’s a demon, and if she’s a zombie, she’s already dead…but she will have none of it.

“I’m still me. Will you still love me?”

So I tell her yes, I will always love her. I might be disappointed in some of her choices or heartbroken that I might have to stake her if she attacks me, but I will always love her. No matter what.

Or at least, I will love the ‘her’ that she once was.

I don’t tell her that, but it’s the truth at the bottom of the phrase.

“I will always love you. No matter what.”

I don’t know when I signed that card with this phrase exactly, but given what I wrote in its entirety, I can narrow down the ‘when’ to within the last five years. “No matter what” was singularly based in what I thought I could possibly do that would change things at that time. It never occurred to me that my choices and actions might not have anything to do with anything. The end was not controlled by me.

I can go on loving, if I want to, no matter what. But it doesn’t change anything. It doesn’t alter the fact that I can only control my choices, my actions–my love.

There is a new box beside the door which will go out when the kids are picked up tomorrow. It’s

SONY DSCnot a big box. But it’s full of meaning. I think. And I can’t do anymore tonight. I need to sit on the deck and let the tremors subside and the breath return. I need to watch the moon rise like it has done for my whole life, and did before I existed, and will continue to do long after I have moved on from this existence.

 

I need to know some things do stay the same.

No matter what.

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Today I woke up feeling overwhelmed.  It usually follows a night of dreams fraught with all the stuff I haven’t done or finished or even started yet.  I rarely remember such dreams other than a tangle of dark shadows and frustrated emotions.  I don’t really want to remember the specifics.  It’s enough to wake up feeling overwhelmed.

Seeing as no one else is awake, I jump in to tackle some of my “undones,” hoping to resolve the mess of anxiety roiling in my gut. As I start working on a client’s blog article, my son trails in, tears already on his cheeks because he was so tired last night he and his dad didn’t play the game he’d wanted to play.  My first reaction is to snarl in frustration: I’m not going to get anything done at this rate. But I shove that nasty part away from me, pull him to me so he’s snuggled up against my side (at 11, I wonder how much longer he’ll be willing to lean on me like this) and we talk about why he woke up ready to doom the day.

Genetics?  Environment, growing up in a house where Mom wakes up overwhelmed and, in the past, didn’t handle it so well? It doesn’t matter.  What matters is I focus on the weight of him, the sound of his breathing, his constant 11-year old fidgeting.He gets into the open notes on the laptop in my lap and we talk DNA testing methods.  Apparently comforted, he wanders off to find his dad and see if some of their aborted plans from last night can be resurrected this morning.

Before I can dive back into my work, my daughter flies in on a few thousand sentences and half of a song.  The definition of a morning person, she rarely wakes up on a tide of anxiety or distraught emotions.  Those come later in the day, usually when she stops moving long enough to think about all the things she wants, longs for, dreams of, can’t have. But in the morning…she wakes up as if the day started awhile

 ago and the rest of us are slow to catch-up.

She wants to go to a park. She wants breakfast. She wants to watch TV. Did I notice the sun is out? She wants to know the plan for the day. She doesn’t want to do anything. She wants to play with the dogs. Can she eat the last donut in the box or will her brother get mad?

I stare at my notes, the blank page for my article. I think about the garden that needs weeding, the bookshelves that need moving, the family room that I’ve started priming for paint, the grocery shopping I need to do, the ribs I need to get cooking, the 100 pages of my novel I need to print so I can ready the package for Interested Agent #3….

My heart beats faster and my chest constricts.  It’s not even nine a.m.

My daughter is whirling around the house, dashing from her room to the kitchen, chasing the dogs, singing a song…the sun is shining. She is full of life and zest and…I breathe, focus on the sound of her voice, the memory of my son leaning into my side.

Life could end tomorrow. Would it be any better a life if all my “jobs” were closed out, completed?

I shut my laptop and breathe.

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