It’s not a stretch to say that my mother in law and I didn’t get along well for the first 15 years of my marriage. At that point she decided I was staying and our relationship transformed to a large degree. She’s been very nice and accepting over the past nearly 4 years. I suspect part of that had to do with me supporting her through her mother’s end of life stuff. Her mother was a hard woman.

Since Noah died I have been talking with MIL a lot more often. When I want to feel that moment of shared pride in my spawn, she is the only person who feels available for sharing it with. I used to not send her an email a month. Now I send one or more most weeks, just sharing a picture of the kids.

She is due to go into surgery a few days after me. Her surgery is much more difficult and mandatory for survival. I’m worried. There’s nothing I can do to help. I’m talking to her more. I’m sharing more of myself and my life and my kids. Maybe it will be incentive. I don’t know though. I’m not feeling particularly able to keep people alive right now.

I’m scared to get to close to anyone because I feel like it will be my fault they die. I am so bad that I deserve to be alone and anyone who gets close to me will get lost in that mess. I’m not actually this powerful but paranoia doesn’t care about reality or logic. It feels true.

I wake up almost every morning and cry because he’s not there with me. I’ll be honest and say that the overnights I’ve had don’t have as much crying. That’s part of what I like about them. I get to have the experience of looking towards the future instead of crying about the past. I can’t change the past. Maybe I can change the future? Will I be responsible for a lot more deaths? I’m not over my brother or my dad. If I could endure more pain maybe they wouldn’t be dead. I know that Noah died from a freak accident but it feels like my fault. If he hadn’t wanted to come with me to help me feel better, he might still be alive. I don’t think that will feel easier anytime soon.

I feel so much shame. I failed to protect Noah. I feel like I don’t deserve to ever have a real relationship again. I am not good enough at looking after people. This feeling is making my day job really complicated.

My children take up the vast majority of my life and I’m not feeling like I am good enough, strong enough to take care of them. This hurts so much. I need Noah. I need him to be the backstop. I didn’t fuck up a lot but when I did he was there to prevent it from going too far. What am I going to do now? Just be perfect? I don’t think that is in the cards. I am so very far from perfect.

Yesterday was a good day though. The kids and I spent the day going through house stuff working towards a purge. We own too much. We cannot take care of it all. A lot of it has to go. We managed to do it without being super upset. We have a long way to go before our house is manageable though. Now we have 27 days till my surgery. We need to get a lot of this done so that maintaining the house is easier when I am incapacitated.

I have to make the future easier.

Mostly I am gobsmacked because my income (thanks to Social Security) is about the same as it was as a teacher before I married Noah. Time stopped for me in an uncanny way.

Past me deserves 9,000 gold stars for saying no to all the friends who invited us on expensive holidays or who wanted us to get a reverse mortgage so we could own a much larger house. I made financial choices that will keep me safe for the rest of my life. This is something I learned by watching my mother fail to do it. You have to pay Future You first.

Noah wanted me to play lottery tickets with him (metaphorically) to try and get rich. We did a round of Angel investing with Paul Graham’s company. I told Noah that the guys he wanted to support would not last 6 months. They were sloppy, unmotivated, and had a crappy idea but he insisted he trusted them. I was right. We lost that money. He let me handle investing the rest. I did well. Looking at the long term money freaks me out. I need a bridge over the next 20 years. 10 will be covered by Social Security. Then I get to levitate for a while. I think it’ll be ok.

I think I will save so well that it won’t be a problem. It’s time to teach my kids how to live like we won’t have money for a good long while. I know how. I’ve done it before and I can do it again. It will be good life skills. Life below your means. Scrimp. Save. Do without wherever reasonable. We have plenty of stuff for the next few years.

Time to hold my breath and see if I can turn this one year of savings into ten over the next ten years. That’s not so hard. I can do that. Just take a little off the top every month.

It’s not so hard when you have the privilege of earning enough to cover your bills plus having discretionary funds. I used to skip eating to do this and I will never be in that position again. I will never have to skimp on food again.

That’s what being rich means to me. It means I don’t have to worry how much food costs. I just buy it. It feels scandalous and cheeky.

I get overnights because Aunt Jenny is taking Shortie one night a month. The older kids ignore me in the evenings anyway. They are online talking to folks. So I go out. Of course I’m seeing more than one person. That will be true for the rest of my life. My kids aren’t going to meet people quickly. I have a horror of that dynamic.

I’m going to be shy for a while before I get around to writing about my love life with great explicitness in this space. It’s feeling scary. I’m already going full speed elsewhere. Here it feels scary in a different way. Not everyone here is a giant weirdo who would love to opt in to explicit details about my sex life.

The last few years have been a wild ride of self discovery inside my marriage, outside my marriage, and now in this post-marriage time. I have never been one to sit in stasis. I am meant to grow wildly in all directions. I am meant to explode with energy. This has been true for my whole life. This is a thing that people have commented on explicitly for my whole life. Now I need to figure out how to manage that without Noah shaping and directing my growth.

I’m pretty scared.

In the past few days my son said, “I always thought we were your epilogue. Now I see that we were your intermission.”

Whoa.

Noah’s goal and plan was for all of us to be alone in this house together as much as humanly possible forever. He liked the Pod. We all liked the Pod. We have so much acceptance and love and support inside of it. We take care of each other. We are careful with our words and gestures and physical movements and expressions of anger. We know that we will deal forever with the consequences of strife within the Pod. We have all created this bubble together and people coming into it are a big deal. We treat that like a whole family negotiation.

That’s going to be complicated going forward.

Things are going to be a lot more complicated going forward.

Things are going to be a lot simpler going forward. An awful lot of everything revolved around Noah. We stayed home as much as we did because he wanted all of us to do that. He wanted to be at home and he wanted us with him so he wanted us at home. It was striking. He genuinely wanted us around existing all the time. We validated and motivated him. His life was a shrine of us. It has been fascinating living in a family this deeply enmeshed and wrapped about each other. This was not something I had background training for. This ended up being a whole different thing than I had planned for a bunch of reasons.

Home educating continues. We are starting to get back up to speed on doing academics regularly at the table. We are always learning but sometimes we can do it in ways that produce tangible results and sometimes we just learn for the sake of learning for a while. It requires a balance to live in the world. We are drifting through our grief. We talk about it a lot. We are not bottling up our feelings. We cry together. We are all writing separately.

I wonder a lot about their futures. They have a tremendous number of skills and talents and they are broadly and diversely educated but they are not going to fit in to a world of checklists. Their lives have been constructed around their individual needs and the absolute limits of what I am capable of providing. It is fascinating, now, to look at the work I see ahead of me with my youngest. My older two are settling into their own stuff and don’t need much of any input from me. All of my plans for this stage with our daughter revolves around Noah and his needs and his limits.

Balancing a house of five autistic people with weird limits and needs is a lot of fun. It is dancing on the head of a greased pin. You will fail to perfectly accommodate everyone and that is the lesson in that moment. That’s when I get to talk about distress tolerance. That’s when I talk about how to be in control of your nervous system even when you can’t control your environment. That’s when I talk about putting on a mask for social safety. Smile. Appear pleasant and non-threatening. Be curious. Put all of your panic and stomach pain in a box and put it in a closet in the back of your mind. We’ll deal with it later.

We do, in fact, come back together to deal with it. It’s so real. Compartmentalisation is a motherfucker.

I feel a lot of guilt, sometimes, because I am training my children in how to mask. I’ve been told it is similar to ABA therapy. I do know that I am a behaviourist. I actively teach and practice DBT. This is relationship oriented therapy. It is exposure therapy in a non-clinically valid method.

The main way I train my children is to take them on long journeys through many different cultures and settings and I help them learn how to evaluate what they see. What clues exist for how to behave? What patterns do you see? Does one group of people walk a lot faster? Why do you think that might happen? How do people manage walking through crowds? What can you guess about the cultural values based on these actions? What do you think they mean?

We do some searching on the internet to see if any of our guesses were close to correct. Sometimes we pat ourselves on the back for being able to easily spot something that is a major culturally point of pride. Yes. It really is clear.

My son told me that he describes our family as being full of autistic people for whom “social interactions” is our main special interest. I hadn’t thought of it that way but he’s right. We read books and watch shows because we want to talk about the social interactions. We want more representations in our brains. And we analyse what is happening in our own lives over the dinner table. We don’t grill people whether they like it or not. We all like sharing.

“So I was having this chat with someone and I said, _____.”

We then talk it out. “Ah, did you consider the thing from the angle of someone who is (list of various demographic markers)?”

“Oh. Shit. No.”

I love my house so much. We don’t put people down much but we do question everything. We are nosy and invasive and simply present.

It’s fascinating watching the teenagers start to develop their own sense of “What happens off screen is no one else’s business.” People are only entitled to know the things about you that you choose to share when you are in a room together.

Wow. What is up with all this drivel that comes out of my fingertips then? What is up with the whole darn internet? I choose to offer the world cheat sheets. I am a deeply complex person and if I don’t write about it I will never have the ability to share all of it in another form. I would only be able to share in sound bites of sanitised nothing. I do not want that in this life.

I am not an easy person to know but I want to be known. I have always wanted to be known. Being known is what has lead to increasing levels of safety for me in this life. I am a weird motherfucker. I also work hard to give more than I take. I try to conform in the ways I must. I am trying.

I am also a person who has been let out of a cage. I loved my husband and I would have born the price of staying married but I was not made to be monogamous. It was a point of enormous strife between us even when I wasn’t doing anything with anyone. It made him feel abandoned and betrayed.

I have no idea what the future is going to bring. I am betting on more growth and more change. I won’t always like it. A lot of it is going to hurt. That’s ok. I was never promised an easy life and I do not expect to have one. I am going to have a better life than the one I was brought up to expect. I am going to have integrity and honesty that did not exist in that set and setting.

Every individual family has their own vibe. Their own levels of awareness around sex and sexuality. I am struggling with the fact that my levels in California depended on their being enough ambient sex positive, sexuality displays that I could have a lot of theoretical discussions. My sex life never had to come up. Here I am going to be the first example of poly that my daughter really groks. This alarms me. That’s a lot of pressure for figuring out what “sharing information respectfully” means. It will be fine. I’ll navigate this like everything else. We are already the weirdos for a lot of reasons. It’s not going to make that big of a difference in the long run.

It feels like a life affirming thing to do at this stage. I am trying to build deeper connections than I am going to be able to access from my local friends. Boundaries are complicated things. Life is long and I would not be surprised if Noah is not the only partner I watch die. That’s scary. I’m only 43. I might have that happen again. Life isn’t fair. I’m going to experience a lot more loss. It’s really scary. I hate going under general anesthesia. It’s really scary.

And for the first time in 18 years, Noah won’t be the person who takes care of me. He was not good in the emergency crunch moments but he was awesome at babying me during recovery. Well, he got awesome because he did not like watching me crawl around the house doing the chores he hadn’t gotten to.

This time I am doing a big purge of stuff before surgery. I need to have less work to do. I need to have the ability to not fight with my baby over stupid stuff. I need to create a “Yes” environment. It will make a lot of things less stressful for a lot of people. We’ve had too much for a while. It’s time to do it differently.

Do you own your stuff or does your stuff own you? How much do you really need? I’m thinking on this really hard. I keep wanting to say “we” as if the kids somehow share responsibility but no I have too much stuff. Because I now own everything that was Noah’s. I’m having a lot of feelings about that. But it’s really past time to start the day.