terminology

It is 8:30 am. K. and I are rushing around getting ready for the day.

"Me have one ear."

Oh crap. I so don't have time for this right now. But here it is.

"Yes, Sweetie, you have one big ear and one little ear."

One big ear and one little ear? Is that the best I can do? I am so freaking unprepared! Why aren't I more prepared? K. and I should have talked about the terminology before this.

"Me have one ear, Mommy."

Ok. Calmly try again.

"Yes, honey, everyone has things that are special about them and you have one big ear and one little ear. That is special about you. Lots of things are special about you."

Have. Not. Thought. This. Through. Enough. How do I tell him it's ok to be different, that it's what's inside that really counts, that junior high and high school will probably suck but after that things will get better, that the good people of the world will love him for who he is, in 3-year-old words?

"Me no want one ear."

Crap. Crap crap crap crap crap. Don't cry.

"R., you were born with one ear. You are a sweet boy. Baba and I love you very much. It's ok to have one ear."

In. Over. My. Head. Of course you don't want one ear. Of course. But it's going to be ok.

"Me no want one ear."

"R., are you ok?"

"no." heartrending, end-of-the-world sobbing.

"Oh sweetie, it's ok to be sad. It's ok..." Ad infinitum, whispered into his hair.

[If you, my wise internet pals, happen to know of a book, article, or other resource which discusses self worth in the face of physical deformity or anything along those lines, kindly point me in the right direction. I think "little ear, big ear" needs to be examined for a start.]

tock

Things got bad enough a few weeks ago that I was forced to take desperate measures. I decided with great reluctance to write down every single thing I did all day long to figure out where the time was going.

Ten days was all I could take. Here's what I found out: I cook, do dishes, pick up, shuffle the children, do laundry, fold clothes, work, and exercise. My life seems terribly dull. There's nothing on the list I can remove. The fact that the list even exists lends a terrible fatigue.

It was a pathetic end to a pathetic idea. There were no extra hours lurking behind the trips to school or the grocery store, the piles of sweet smelling clothes or magazines waiting to be read. The elusive hour did not reveal itself. I longed for a pair of x-ray glasses.

I know there are other people out there struggling alongside me. I know my therapist believes that one must nurture oneself. I know that to get one must give. I know going to bed at 9:30 doesn't help anything including the alarm at 6:10. I know all of this. And yet my sewing machine has fluff on the needle and don't even mention books to me or I shall laugh directly in your eye.

There is the faint hope of summer and a need to be patient. That is all.

cry

"Mama, you feel better?"
"Yes, Z., I feel better."
Two minutes go by.
"Mama, you feel better?"
"Yes, Z., I'm fine. Mama's fine."
2 minutes go by.
"Mama, you feel better?"
"Z., Mama is fine. I went to the doctor today for a check up. Mama wasn't sick. I just went to make sure everything was ok, and everything was ok. The doctor told Mama that I'm fine."
2 minutes go by.
"Mama, you feel better?"
"Z., did you go to the doctor today?'
"Yes."
"Were you sick?"
"No."
"Right. You weren't sick. You just went to the doctor for a check up. The doctor said that you are fine, that everything's good. Me too. I'm not sick. The doctor said that Mama's fine."
"Me go to doctor today."
"Yes."
"Me good girl. Me no cry."
"You were a very good girl, Z. No crying today. Great job! You were so brave!"
"Me no cry today."
"Right."
"You cry."
K. and I both start laughing.
"You're right Z. You were a brave girl and you didn't cry. Mama did cry."
"Me no cry. You cry."

I don't feel it consciously, but the mammograms freak me out on some deeper level. We were busy today, taking Z. to the GI Guy and then having a lovely lunch and shuffling the kids to the Academy of Natural Sciences Museum so I had no time to fret about my appointment. I ran through the rain, jumped in the car, fought my way to the parking lot, ran through the rain, and got to my appointment. Checked in, got undressed, waited, had the mammograms, was deposited in the second waiting room. Fidgeted around, read old magazines, fidgeted, wrote a zillion FB updates, fidgeted, listened to the loud conversation that the one sad woman wanted everyone to hear.

For a while I went to the People With Issues Mammography Clinic (PWIMC) and one day I showed up and they sent me to the regular clinic across the street. I wasn't happy. They didn't read the films right away at the regular clinic. They just squashed your boobs and sent you home to wait. But eventually I got used to the regular clinic, which is why I was disconcerted the last time when they sent me back to the PWIMC. The PWIMC is way more stressful because everyone there has issues, and there are always a few women there who actively have breast cancer or are waiting for more information after having an irregular mammogram. There was a woman today (with a friend along for comfort) who looked as if she was going to burst into tears at any moment. And the loud woman who had possible tumors in 3 or 4 different body parts.

Today for some reason this all freaked me out. I tried desperately not to listen, tried to immerse myself in a People magazine from last summer, tried to FB, Peggle, txt K., ANYTHING not to think about it all. And so when I got into the car with K. and the kids and E. started whining that we didn't have time to have the promised ice cream sundaes I started crying, hard, and K. said, "But everything was ok, right? They didn't find anything, right?"

Z. didn't cry. Mama did. It was a long day. I'm glad it's over.

unintentional

Honestly I didn't mean to honor those who serve our country by eating too many brownies and sitting in traffic. It just kind of happened that way. But I do give my respect and thanks to everyone who works hard to protect the freedom we enjoy in the US. Thank you. I'd give you a brownie, but I seem to be short on brownies right now. Perhaps we can work out a fourth of July deal.

eat

Trying to eat "right" is like trying to learn archery in a tiny sailboat in the middle of a hurricane. With a tsunami approaching. In the dark. Well, tell me I'm wrong.

I grew up with a very 50s dinnertime mentality—we ate dinner at exactly 5:30 every night, and we had meat, one vegetable, and a starch. Cookies from a box for dessert. The starch was usually the highlight, occasionally the meat, never the vegetable. Poor sickly boiled vegetables tossed with some salt and indifference.

At some point during high school or college I got my hands on a copy of the Silver Palate Cookbook and attempted to feed leeks to my father one night for dinner. The leeks were not well received. I also tried cooking with fresh garlic, herbs, and lemon juice while reducing the amount of salt. Also not well received. Thing was, I was in love with the SPC. It seemed so...progressive and shocking and delicious.

The SPC cookbook had a 25th anniversary edition released, so I've been working on this food thing for at least 20 years. Thing is, even if you spend 20 years trying to get a handle on your eating or your thoughts and feelings about food it's still such a mess. Eggs are healthy, no they aren't, they're too high in cholesterol, no, just eat the whites and leave the yolks, but hey wait a minute the yolks are filled with all kinds of good-for-you compounds, eggs are healthy. As long as they're irradiated. Or not. And that's E-G-G-s. How about potatoes, pork, milk, any red meat, sugar, sugar substitutes, sugar sources, or soy. And that's not even scratching the surface of the weird diet du jour, low carb, macrobiotics, the raw food movement, Paleo diet, and calorie restriction, just to name a few. Oh, and McDonalds.

Right. For a science-y perfectionist like myself this is pretty much just torture. I'm a firm believer in moderation in everything yet I find myself in a shame spiral every time I even think about giving my kids fast food. Ditto Kraft macaroni and cheese. (See? I just lost half of you.) Ditto anything not organic, with HFCS or bleached flour, most white foods (fish and cauliflower being notable exceptions), anything with preservatives, anything from Monsanto, anything with synthetic anything. I sort of wish that I could scrap all of that stuff and the rest of the things on my very long list and still live the somewhat regular life I live now, but I don't think it's possible, and I know it's completely impossible when one lives in a small house on a tiny, tree covered lot with no room for chickens or a sustaining vegetable garden much less a herd of milk producing beasts.

I am trying desperately to find some middle ground which makes sense to me and allows me to believe that I am not unknowingly poisoning my kids or kicking their latent cancer genes/cells into high gear or causing them to grow starfish-like extra limbs. I'm finding that middle ground pretty darn elusive, and honestly even just writing "Monsanto" makes me want to sit down and cry. I love the locavore movement but I'm not wealthy enough to be one. I joined a local CSA and have been searching for a *good* farmer's market with interesting locally grown goodness. It's all so frustrating.

Eating. So simple and yet so complicated.

More to come on the changes I've made, the things I still very much want to change, and of course my angst about it all.

y. o. u. r. o. c. k.

As it turns out my peeps on the internets are much smarter than I am. (Which of course I already knew.) The meeting went well. (As well as could be expected, really.) I worried too much and I fussed too much and I was a big anxiety-ridden goofball of a mother. It's all good. (I already know I'm a goofball.)

K. and I talked beforehand, I scribbled down some goals for Z., and we went to the meeting. When I say we I mean K., Z., R., and I went to the meeting. I'm sure they were thrilled to see the kids with us, but it helped me to have Z. in the room with us even though she wasn't supposed to be there.

We signed the attendance sheet and everyone reviewed their reports. This took a long time, too long as it turns out. But they were trying to be thorough and also explain to us the testing and what happened during testing and how they felt Z. did and why and if the tests were reflective of her true abilities. (No. And yes.) We got some good insights. After a long time we got to the point where it was time to state whether Z. was eligible for services or not.

Everyone got a little uncomfortable and started looking at each other. (Not me—I was clueless.) Then they started blabbing on and on and on about the classifications and how she fit into a bunch of different ones and how they all met and talked a lot about where she fit best and slowly it dawned on me that it was going to be bad news. Yep. They reluctantly dropped her classification into the big silence that had opened up and I immediately started crying.

Sigh. I knew that it was likely I would cry at some point during the meeting since I am in fact a crier, but I really didn't want to. I did a lot of yoga breathing before and during the meeting trying to stay calm and focused. I think I need some more work on diaphragmatic breathing. I did a lot of thinking and preparing emotionally for what *could* happen, imagining scenarios and my reactions to them. I think I need some practice with visualization techniques. I looked at Z. a lot, reminding myself that this was for her and thinking about how much I love her. Whatever. I cried and everyone looked uncomfortable and they all started telling me why it was a good classification and how it was to help her and that everything was going to be ok and that Z. could totally be one of those kids who become unclassified at some point, a real success story. Then K. jumped in and told some big long story about nothing, trying to get everyone to laugh.

I knew they were right. I appreciated their concern and kindnesses. I knew immediately why they had given Z. that classification and how they were trying to help her get all of the services she needs and I knew they knew it was going to hurt me. And it did. Hurt me.

It took me a while (too long) to compose myself and by the time I was able to focus again they had begun racing through the accommodations that were recommended for Z. which of course were more interesting to me since we had read all of the reports prior to the meeting. They apologized, said they had another appointment waiting, handed us the papers and told us we had 15 days to review and sign them. Everyone loves Z. they told us, she is so sweet. K. made a little speech about how thankful we were for their hard work and concern for Z. and how well she was doing and how we knew that was due to them (thank goodness because I was in no place to do it). I nodded and smiled and grabbed up my kids and got the heck out of there.

So it was good, and they've offered Z. an aide (which is what we think she needs) and they were necessarily vague because the budgets have all been cut statewide and no one really knows what's going to happen next year and we all agreed that we will just need to wait and see how she does. They also finally gave her a PT eval but the report wasn't ready for the meeting so we don't know the result of that yet. That was something I had decided not to fight for after conversations with many people who told me that they will not give her PT unless she can't function in the classroom, so that was a nice surprise. We all agreed a few different times that Z. is an enigma, which she is. I left distrusting the administrators even more, but really liking Z.'s team.

It was a good meeting with good people and I think we have a reasonable plan. Whether it will work is anyone's guess right now. It's possible it will work I think, so I'm willing to wait and see. I need to spend some time thinking about why I got so anxious and what this all is triggering in me and how I can do better next time. I need to decide if we want to send her to extended school year. I need to review the recommendations although I have nothing to compare them to so I think they will need to be a work in progress, at least for me. Still a lot to do, but a good start.

And. You. Rock.

t. o. m. o. r. r. o. w.

Tomorrow is the IEP meeting. I feel anxious and a little sick when I think about it. Mainly because I am afraid they are going to throw something at me for which I am unprepared. And I hate that.

We got her test results on Saturday but sometimes we forget to get the mail (there's never anything good in there anyway) so I read through everything on Monday morning. A perfect activity for Monday. I cried. K. told me that Z. is still Z. and that nothing has changed. I cried some more. K. told me that we love her no matter what. More crying.

It isn't that what K. says isn't true, or that I'm disappointed in her. I just get such a sense of loss when I think about the things she might not have. It's sad for me. Her test scores were dismal, her IQ a punch to the gut that left me breathless. Only tests, only pieces of paper. But they are also Z. as she is today in some big or small way.

My plan for tomorrow is to go in with our goals for Z. and an idea of how Kindergarten might work for her. And then listen to what they have to say. And remember that everyone in the room wants Z. to succeed at school to the best of her ability. And believe in these people who have cared for Z. so well this year and last.

And not sign anything.