Working through

This has been a hard year, and I’m not sure what to do other than write.

First was infertility. We lost something then. Not a child, but the hope of one. We lost ideas and dreams and things we thought would be true. We grieved over it in some ways as if we had lost something more tangible. We’d tried for years, and suddenly there was a hole where all of our expectations got sucked in. It is hard to understand unless you have been through it, so many people could not understand why it was such a big deal. I am still fighting the feeling that I am not truly a woman if I don’t have a child. I know it is illogical, but it permeates our culture. Women with children have more status than women without. However unfair that may be, it’s true on some level. I get asked by women I’ve just met how many children I have, or when we are expecting to have kids, and when I say, “We can’t,” there is an often not-so-subtle movement away. The circle closes and they talk about their children and I am not welcome. That’s not true of everyone, especially those who know how much I’ve worked with children through my life, but it has happened.

I was working on healing, working on accepting the new way of thinking and approaching life, and the next piece happened. My grandmother, at almost 93 years old, stopped remembering people and places. She stopped being herself, in some ways. It felt to me like that hole from infertility got another part dug out, widening it a bit. I had always wanted to have a picture of four generations of my family: grandma, mom, me, and a baby. The baby was not going to happen, and now grandma was slipping, too. Another piece of grief, although for me this was kind of anticipatory grief because I had to face the likelihood that she would not live a whole lot longer. She might; I don’t know. I hope, if she does, she is enjoying life. It was another blow, but we were coping.

June 9, my younger brother died completely unexpectedly. He was 28 and had no health problems that would explain the blood clot that killed him. I still don’t really have words for what that did to me. It took the grief from infertility, the grief about my grandmother, wrapped it up in a physically painful grief, and dropped a bomb on me that opened up a chasm.

I have never had such a physical response to grief before. Food has always been a comfort when things got bad. Now food is necessary, but not enjoyed, and I often have to be reminded to eat. I don’t taste much, and my stomach hurts all the time. My back hurts, too, and sometimes my feet, and sometimes my head. The first three days my chest cramped up regularly. I have never had such physical pain related to mental anguish. I am tired all the time, too. I’ve been sleeping 10-12 hours a night just to be able to get up in the morning, but I’m not sure I am resting very well. I’m exhausted. I get through by focusing on one thing, one step, the next thing, on making sure I eat and drink enough, on sometimes just breathing deeply.

I don’t know how to talk about this. I talk around it a lot. I cry a lot. I talk to Xander, who is possibly the only reason I have gotten through this. He has been amazing. I spend a lot of time with Nyx. She has been very attentive and snuggly since this happened.

I have a really big hole inside me, surrounding me, engulfing me, and I don’t know how to heal. I know that all of this is normal, but it’s harder than I knew it could be. I’ve lost a lot this year, and every once in a while, when I’m just holding still, I feel like I’ve been hit by a truck. I want to crawl into a hole and pull it in after me, but I know that won’t help. The world keeps going. I can grieve, but I can’t disappear.

Having work to do helps. Having some purpose, the feeling that I’m doing something useful, is good for me. Dealing with people right now is hard, and by the end of the day I’m wrapped up in pain again, but I’m mostly making it through the days. Weekends are spent on the couch, reading or watching TV. I don’t have much interest in going out.

We went for a walk down to the farmer’s market yesterday. That was the first day I’ve been able to do anything even close to exercise since Daniel’s death without getting exhausted or cramping up within five minutes. It was a good, long walk. We got food for the week and picked up nectarines to eat on the way home, and mine actually tasted good.

It’s not better, though. I still can’t work through my little brother being a pile of ashes, never seeing him again. I had nightmares the first few nights, and one of them was just a voice, saying over and over, “There are supposed to be new lives in a family before the children start dying.” I was standing in the dark, listening to a voice. That was all. I woke up crying because it was true and I couldn’t make it better. There were others, much worse, but that one, I think, shows how all of this wraps up together in my head right now. On some level I can’t believe that I won’t see him again. He was the focus of our family from the time he was born. I knew that at some point I was very likely to be at least partially responsible for him again. We had talked about how to work him into our lives if it became necessary, and we knew we could handle it.

Daniel was incredibly important to me. It’s very hard for me to use past tense. I keep slipping. I woke up with him when he had night terrors. I could tickle him from across the room and bug him from hundreds of miles away. I could make him laugh, and he could do the same for me. We had nicknames for each other that other people didn’t necessarily understand. He gave really good hugs. We loved to sing together and we’d crack each other up when we sang certain songs because I’d be silly on purpose and he’d add to it.

There’s so much more to him, though. There was. I can’t explain who he was as a person because I don’t have enough words, or the right words. I am floundering. Our family was centered around him. He gave us focus and meaning. I would not be who I am without him, and I don’t think the rest of my family would, either. He changed how I look at the world. He made me more compassionate, more willing to look for the good in people instead of stopping at the differences. He showed me how frustrating it can be to know where the goal is but not quite be able to reach it, and also how angry it can make people if someone tries to help when the person wants to get there themselves.

I don’t know if I’m making much sense. I needed to write. I’m sure I will write more again, but I’m not going to be on any consistent schedule for a while. We’re going to go see family soon, and I don’t know how to write about that, either.

The world is a lesser place without him.


Today is Autism Awareness Day.

Whether or not you know someone with autism, you’ve probably heard of it. You know, the thing that a bunch of people kept saying was caused by vaccines? (Just so we’re completely clear, it isn’t.)

Autism isn’t just one thing. It isn’t something you can catch. It isn’t caused by anything we can pin down. Some of the cases may have a genetic link. It’s more common in boys than in girls.

You can find lots of numbers about autism, but when it comes down to it, we’re talking about people.

We’re talking about Temple Grandin, an amazing person who proved that a diagnosis of autism does not mean the end of hope.

We’re talking about families like this, who wrote a piece here which includes this: “Receiving a child’s autism diagnosis is like living in the world’s most wonderful city, San Francisco, then being suddenly informed of your family’s relocation to Yellowknife, a busy city in Canada’s subarctic. Even parents who know only that the subarctic is where the globe turns from green to white are aware it’s not a place one lives casually. If you’re going to survive the long, dark, fierce winters and bug-ridden summers, you have to be prepared. You have to budget for expensive supplies and services that people in San Francisco never need consider. Yellowknife is also remote — you may find that not all of your former families and friends are able to visit you there.”

Autism is harder on parents in many ways than other disabilities because it is invisible. People felt sorry for me when they saw me with my younger brother. If he had been autistic, they would probably have assumed that he was just a brat or had parents who didn’t bother teaching him how to be polite. I worked a lot with kids with autism for a while, and some of them were really challenging to take out into the community because people did not understand their behavior or reactions. One kind old lady at one point tried to give a little boy I was working with a taste of fudge from her counter and he did not respond in a way she thought was appropriate – he had been looking at the case, but he turned his back and started humming. The kind little old lady proceeded to chew me out because he wasn’t being polite. I finally got her to shut up long enough to explain what was going on, that it was too much stimulation. I don’t know if she understood. I know it made the little boy uncomfortable.

It’s hard for people to understand autism or disorders on the autism spectrum. If you can’t wrap your brain around it, read this. It’s amazing writing.

This part, at the very end, hit me hard: “Go ahead. Call me crazy. One.More.Time. But while you’re at it, stop to take another look at someone you’ve ‘written off’ because they are different. Stop to evaluate your own personal bias, intolerance and vendetta- if it is a cup you would drink from personally, then take a long swig. Savor it. Enjoy it. Because if you’re serving it up to others, chances are, someone you love is silently wincing with every.thoughtless.word you speak.”

It’s easy in our busy, noise-filled lives, where so many things are demanding attention, to write off people if they take a little more time to get to know, to judge parents of children who are different, to make snide remarks when we shouldn’t. Take today and think a little before you speak. Think a little before you hurt someone without even knowing. There are a lot of people with autism in the world. There are a lot more people who care about, are related to, love, and cherish people in their lives who have autism. You can’t tell who is autistic by looking at them. You can’t tell who loves a person with autism by looking at them. Think. Please. Think before you say something that will add to the nasty comments they’ve heard so many times.

Please. Be aware. Think.