One of the most intense parts of my marriage was the way that Noah made space for me to have every feeling. I didn’t have to only have the ones he wanted. He didn’t like it when I was in a bad mood. He didn’t like it when I fell in love with people. He didn’t want me to feel sadistic. He did try to control me such that I only had the feelings he wanted, but when I went off the rails he would build a protected site around the crash zone like he was defending evidence. He didn’t have to like everything I felt. He had to protect the space for it to exist.

I looked at one of my tracking things. Ah. This is going to be an exceptionally vicious PMDD cycle. It’s kind of a terrible thing the way bodies change each other. I’ve been talking to my children about our cycles. I’m real worried one of them has endometriosis. Their aunt recently had a hysterectomy and is having to go back in for a second surgery because they couldn’t get all the endometrial cells in one go. She’s in her 20’s. It is fascinating watching how people use my DNA and Noah’s to have experiences that are hauntingly similar to me and yet dramatically different as well.

Before I had kids I usually had my period 9-10 times in a year. That’s not awesome. Folks who are inflicted with a uterus are “supposed” to have more like 12-13 in a year. I had never had sufficiently good nutrition to bleed as often as I was supposed to. In a way this was protective because the depths of my suicidality were hard to bear 10 times in a year. I’m grateful there weren’t an extra 3 cycles.

My children bleed 12-13 times a year. It’s fucking wild. I now bleed 12-13 times a year. What the absolute fuck. Most of the time it’s moderately inconvenient but my PMDD cycles have improved dramatically over the years. At this point I have a really extreme PMDD cycle 2-4 times in a year. It has gotten lighter and lighter with the birth control I’ve been on since Noah died. I no longer hemorrhage every month! It feels super good for me.

When I am this kind of depressed and low and sad and self hating Noah would take the opportunity to poke me really hard. In this state, when I’m tetchy and crotchety and oversensitive like fuck, he could get me to say true things that I won’t say the rest of the time because I’m too inhibited. I would complain about things that I usually suck up. He savored having access to my brain in this weakened state. I couldn’t defend myself by hiding all the things that bother me. They come tumbling out like a waterfall.

I barely snapped at Gentleman on Sunday. I was a hair bitchy. I immediately walked away to calm down and I came back and apologised. He let it go. There was no drama.

I have barely spoken to him since. This is not a space I can inhabit with people anymore. When I feel like this I need to avoid people.

I am always the third to bleed. There’s an order with the kids. The severity of the first person often indicates how the wind is blowing. All of us are having an extremely low month. Not one person in my house has hope in their heart right now. Instead what we have is the ability to sit together and commiserate about how awful it is to have your brain do this. We bitch loudly about how much our bodily functions are ridiculous and impossible and stupid and mean.

We talk about a lot of what is making us sad. I am leaving big pieces of my sad out. I share the things that feel appropriate. I am careful. I am moderate. I think about their needs before I speak my troubles.

I miss Noah. I miss being married to a tremendous asshole who gave me permission to be an asshole because we matched. I could say any rude thing to him and I didn’t have to apologise.

I will certainly never feel ok being a raging asshole at my carefully polite English boyfriend.

It’s definitely a day to hide and scream all the things I will never feel ok speaking to another human being again.

Enh, except for all the hours I have to do my day job. And I’m meeting friends. Parts of the schedule have to go on even if I feel like shit. It doesn’t matter how I feel; it matters what I do. I need to see friends and not be an asshole. There is no space for me to be an asshole anywhere in my life. I don’t think I will ever deliberately bring an asshole into my life again. At this point I don’t have the time and space to smash the rough edges off before bringing them around my kids. I had years to work on Noah. He was allowed to be an asshole the way I was allowed to be an asshole: in a room alone together. Not at our kids. Not at our friends. Not at people we loved. Not at coworkers.

If people in public react to me being visibly distressed I can say “I miss Noah/my husband” and they will nod and stop asking me questions and that’s neatly handled. I don’t have to tell a very big piece of the truth. I am not allowed to word vomit my pain on anyone outside of my house. That’s private. It’s not a secret (obviously) but it’s the kind of thing people don’t want to see in public. There are rules to the social contract. The rules here are far more strict than where I am from. Publicly weeping and sobbing is not acceptable. Get your shit together.

I am definitely definitely definitely not allowed to say mean but very true things.

The only person who ever wanted that from me is gone.

It is a relief that what I am left with is people who weep with me and say things like, “I’m very glad that even on my worst days I am incapable of believing ‘no one likes me’ because I have you.” There is so much I have done wrong in this life, and so many people I have hurt with mean but true things. I feel the weight of it all the time. I am so conscious of how I have failed people. I have not failed these three people. I’m doing really well.

We live in each other’s pockets in a way that is far outside the norm for most humans. When Noah was here it was so intense. Since he died the older kids have started leaving the nest more as they gain adulthood. Pretty much the main time I am not in a room with my baby is when I am smoking pot. When I get access to pills I will have an unholy number of hours a day with her. Frankly, she needs them. She needs to be around other humans and she needs a lot of assistance interacting with the world.

I knew I would have high needs children when I was 17 based on my lived experiences. I wanted to have them and meet their fucking needs so I could find out what people like that were like.

My children tell me regularly that they appreciate all that I have done for them. Well, they don’t tell me that at all until they are about 15. At 15 they start having gratitude. It’s been terrific to experience. I thought it would take till their late 20’s if we ever got to this point at all. They know that I have pretty much given up having independence for this indenture. I have given it my whole fucking soul and almost all of my time for 18 years with another 9 years 5 months and 17 days to go on my term of indenture. I am a walking, talking, world interpreting edutainment experience. I am a fucking 3 ring circus. I help my autistic weirdos understand the gulf between their life and what everyone else is experiencing.

It is hard as my kids develop their own alphabet soup collection. We walk into assessments prepared with our fucking data. We talk about all the things we do actively on a daily/weekly/monthly basis to manage our complications and symptoms. I have to admit it is tremendously fucking awesome that in every case the specialists have said, “You are already doing everything we try desperately to get people to do. You are the embodiment of best practices.” I like validation as much as the next insecure nitwit.

I am struggling with the ways my internalised ableism rubs up against the reality I live with. I want us to make tremendous ambitious plans. I have always made ambitious plans. It’s different now that Noah isn’t here to catch me when I crash and burn. When I got home from the road trip in 2015 I was in so much pain that I had lost most of my peripheral vision. I didn’t move for about a month. I let him do everything for the kids and the house and unpacking from the trip. I was completely numb from pain. I shut down entirely. I pushed way past where I should have stopped because I couldn’t let myself fail.

Do you know how cool it is that my kids make prudent choices when facing risk? They understand the difference between pushing through something being hard and doing something stupid. I think back to the choices I made at their age and I marvel. These people are going to do fine in life. They are bold and they do cool stuff. They also make conscious space in their life for the need to collapse. They create room where it’s not failure, it is accepting that they can’t do something on a given day. They can get back to stuff later. They don’t feel the same drive I feel to push through no matter how much damage they are inflicting on themselves. They talk about the recovery costs and why something isn’t worth it. They actually believe the shit I say. I’m over here saying it hoping that someday I will believe it. They have arrived. It’s wild.

Living with them is really cool. It scares me though. I don’t like receiving help from them when I’m the one doing the worst. They are kinda insistent. We are so alike. We do a lot of staying out of each other’s personal business on stuff. Privacy is a very big deal in our house. Rooms are not to be entered without permission. I don’t like going through people’s stuff. It makes me feel like shit. I do it as little as I can. My plan here is to earn a relationship with my adult children. I have to respect them as autonomous humas to get that. I have to start early and practice what I preach the whole damn way through. It’s not easy. I have as big of an ego as anyone else. There are times I want to shine/shape them around making me look good. I breathe deeply and let it go. I need to look good or not based on whether I am acting right. Not whether I can make someone else act right. Which is complicated. I don’t believe I should control how my children dress/wear their hair/enjoy appropriate media. (Of fucking course I keep the inappropriate media away from them. My kids are sheltered little bastards. They will give you long lectures on the harms of watching pornography before you have your own sex life.)

I am feeling tremendously insecure. I never feel like I have done enough. I haven’t gone far enough to push my kids into learning/proving they know/earning some award. It’s an awkward thing to carry. I offer my children the chance to opt in to proving what they know in ways that will be more seen to the outside world. They shrug and move on with doing things how they like to do it. I have to cross my fingers and pray. At some point they will want to earn more money than I want to pay them. They will figure it out. I have faith.

It is a fascinating thing having almost all of my attention turn to Shortie. I’ve not had this one on one experience with a learning child before. My older kids are just over two years apart. They have been a pair for a long time, even though they were always learning at different levels. They had to share activities and time. My youngest has been baggage for most of her life as she was dragged to their stuff. Now my days are focused around her in a really dramatic way. This is the amount of time/attention my oldest is grateful he never experienced. He is quite certain that he is glad he is not an only child because I would have crushed him under the weight of being my sole project child. He is probably right. Shortie won’t be crushed because I am a lot more burned out than I used to be. I don’t have as much force to give. I am tired down to the marrow of my bones. I am with her. I answer questions and interact with her a lot of the time. I am also lying still while reading a book a lot of the time.

I am being very careful not to become my mother. A lot of what I struggle to forgive my mother for revolves around the ways her extreme neglect allowed me to experience really vile things. I was lonely and isolated and she had no way to try to ameliorate that. She didn’t have any money and she didn’t know how to do it while we were shifted from room to room in city after city. I have spent my entire parenting life afraid of the knock on the door from CPS/social workers checking up on the welfare of my family. It’s kinda funny. I’m really racking up points on that front. I’ve been reported in two countries. In both cases the social worker ended telling me that they have great confidence I am doing all that can be done in a difficult circumstance and they wish me the best. Authority tends to approve of me when it shows up to spot check my work.

People who don’t like me and who judge me stay trying the system though. They are certain that their dislike of my methods is proof that I am doing awful things. The first time the bad thing was entirely outside my control and I was managing it as well as a thing can be managed. The second time it was for absolutely fictitious and malicious bullshit. Something that was demonstrably untrue as soon as you walk into the house.

There are a lot of ways that I am a failure as a human being. I have never tried to deny that. I am a really good mother. I am an excellent teacher. I am as much of a saint in the patience department as Noah ever was and maybe even more. I am masterful at coregulating people who are distressed. For these three humans I am a gifted interpreter for the world. I can see the gaps in the schema they have experienced and the schemas of the people around them. I can talk about cultural/social differences and why other people are going to start every conversation with a completely different point of view. I talk very concretely about the water we swim in with our little pod. I talk about the rules and the structures that have shaped it. I talk about how their father and I came to the set of agreements we did about how to live in our little glass bowl together.

As young adults they tell me how grateful they are that they have completely missed that most of the world is obsessed with dieting. I fucking love that my child can boldly assert in their medical appointments which symptoms started long before they were obese and adult sized; they happened when they were a skinny little fuck of a young kid. The obesity came afterwards and was caused by the symptoms. When we talk about how active we are despite our demonstrative disabilities doctors express great surprise and delight. They wish they could get other patients to do even a small fraction of all the adapting we have done.

My kids have come with me on my journey towards taking care of my body. They watched the elimination diets and nutrition work. They understand why I exercise like it is a job. We are all as active as we can be and that means sometimes we drop out of everything for six or more weeks because we are simply unwell. Sometimes it is six months. Acceptance of this variability is embedded in the walls of our family home like a placenta embeds itself in the uterus. We carry this shell that permits us to be weak and not well without being impacted by the larger world. We have our own experience of being alive. It feels intensely privileged. I also know that I was sick like this when I was poor as fuck. It’s not always been like it is now. I have not always been safe. I have always been sick.

If I had a full diagnosis list before I had children, would I have had children? I don’t know. I know that two of my children are on a path to try to have their uteruses removed ASAP. They have no interest in 40-50 years of this. They watch what my body goes through and they don’t want it. They are each having their own painful and terrible journeys that are complicated for a lot of reasons.

I’ve been chewed out for using the language “inflicted with a uterus” because it sounded “derogatory to cis women”. Obviously I took that on and complied instantly, no? Obviously the feelings of cis women on the internet need to drive my language evolution. I should definitely not direct my language at the nonbinary person and the man who both happen to be inflicted with a uterus who are under my care. I should not care about their feelings at all. I should not at all casually refer to the fact that having this organ is fucking brutal when it doesn’t function easily and well. Some cis women have dandy experiences with their uteri and that’s not my damn problem.

We are humans having a collectively miserable experience with this organ that was inflicted upon us by fate. We didn’t choose it. There is camaraderie at many levels that are good for my soul. It’s also awkward sometimes complicated that I will probably have different conversations with my daughter. I don’t push her towards being cis anymore than I pushed her siblings towards being trans. I ask my children to confirm their identities and pronouns with me on a semi-regular basis. I want to respect status updates and I know that sometimes telling me is a little hard for a lot of complicated reasons outside of my control.

It’s kinda annoying that I am a fucking saint when it comes to accepting their various difficulties and they still sometimes go through paroxysms of terror that if they tell me a thing about them that I will suddenly reject them. It stays not happening. They have to have their feelings anyway. It’s kinda nice that the older they get the faster it is ok to slap a quick “Feelings are not facts” in their direction so they can mostly snap out of it. It’s really neat to have such a relationship with people who have been trained all their lives how to have feelings but not be controlled by them. They have all their damn feelings. They know how to walk out of rooms before the meltdown starts. They know what kinds of questions to ask to get the exact information they need. They understand themselves and how they fit into the world.

Yeah. There’s a lot of shit I have been repeating on loop in my head for days. True things. Mean things. I am not saying any of them. I’m not writing them down either. Instead I am letting myself be aware of how lucky I am that my baseline is hiding at home with these people. These people who understand that when they ask me who I am meeting and I say “I think you would be happier not knowing” they need to nod and change the subject. I offer information freely on demand. If they actually want to know something I will tell them even though sometimes knowing things can be a burden. I will tell the age appropriate version of that story.

There’s a lot I suck at. There’s a lot of areas of life where I feel like a giant failure. I will be grateful every day of my life that I got to make a family with Noah. I like our children very much. It is an honour to serve them. It is the blessing of my life that I get to raise people of my blood the way I see fit. I couldn’t make “perfect” children by the measures that other people use. My children will not validate me by graduating from top schools. They will have eclectic lives shaped by the disabilities they inherited. There was no way for them to avoid some of the poor hands they have received in this game of poker. The deck was stacked against them. It would have been awesome if Noah and I had understood our genetics better before we had kids. Instead we looked at each other and said you are shiny I wonder what the babies you make will be like? They are fucking rad and I love them so much and I am so proud.

Tomorrow my kid turns 16. One more official milestone without Noah. It is now hard that their birthday triggers the quick two week period with our wedding anniversary and my birthday. I think this is going to be a brutal run this year. It should be our 20th anniversary. We weren’t sure what we were going to do for it, yet. He was going to tattoo me for our 30th anniversary. It felt like a safe time to go so far.

I have a hard time every year with this span of time. Noah was not good at big days. It was a thing we agreed to mostly not have because he was excellent for 358 days per year. I couldn’t hold those particular failures against him. I used to go off and spend my birthday alone because I didn’t want to have to take care of anyone on that day. I also needed to move through the world in a set and a setting where of course no one said happy birthday. It’s a complicated thing.

Now I can’t go. I will go again someday. Not the now. I’m taking all of my time off from the kids to go have sex. I don’t have a very deep well to draw from in terms of child care for Shortie on a longer scale. Overnights are not small asks. It’s not worth it to me to be alone on my birthday this year. Also, my kids will be very nice to me. They will treat me how I treat them on their birthdays. They know no other way. They are excited that I won’t be gone. They haven’t spent that many of my birthdays with me because most of the ones they did involved me crying and I don’t like doing that to people. I don’t want to cry at them on my birthday. I have not had good birthdays, by and large. It is sad thinking that my birthdays are likely to improve with Noah gone. He really sucked at big days. No one else can deliver his intensity 358 days a year. They can manifest a handful of big days. It is weird sitting in my belly with how little that feels like it matters.

I would rather have shitty birthdays with Noah that great birthdays without him. What a terrible bind I have created. It doesn’t matter what I would prefer. I will get what I get. I don’t think they will all be great. I think I am going to spend my birthdays crying in my room now. I don’t think it is better.

My son writes fiction stories about people who endure terrible trauma and how they cope afterwards. People ask him if he has had a deeply traumatic life on a regular basis. He says that he didn’t have much of any significant trauma in his life, obviously now except his father dying suddenly. He says that he grew up with people who had were highly traumatised and he translates what he has seen to new characters. It’s a little creepy at times. He is writing translations of me and Noah. I can see it in the layers of complexity he puts into different perspectives. It’s never a blatant thing but if you understand the pattern you can see it super clearly. He’s a really good writer. I think he is going to be a much better writer than I am in the long run. That’s nice.

Even when I want to feel like there is no hope and everything is dreadful and I will never be fully accepted again I have to go have breakfast with these three people every day. It’s a fairly absurd claim. We are a massive mutual admiration society. We all have our areas to shine and we hand the spotlight around as much as possible. We are a fully fleshed out comedic/dramatic ensemble cast. It is fun to live with these people. No, we will never be a reality show. Ew.

We accept each other. We also understand that boundaries are great and everyone should be private about the things that family members would be happier not knowing about each other. We’ve been specific about what sorts of things go on that list. It’s not an ambiguous set up. When they were way the fuck too young to actually have such a thought about a given person we talked about how we can let them have personal space for privacy once they are adults who date. It is baked into the assumption of our household that someday most of the adult members of the house will probably have sex. Here’s how to do it politely.

It’s time to stop typing before I get more explicit on that topic because now it’s not my business to share more about that. I can face the day now. I can go do the thing that is my big success in life. I can kiss people awake and say I am so glad to see them again. They will believe me because I will mean it with my entire soul.

Yes, I do have their consent to talk about the stuff I do talk about. We have talked about the lines on a number of occasions and we will do so again. I don’t own their stories.