Tag Archives: grief

Another Day In I Am Too Tired For This Shit

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My bed is 7’x7′. How in the hell does a child turn sideways then fall off the bottom?

Yesterday MC had their first visit for assessment to see what sort of neurological testing will help find the correct diagnostic labels so that I can narrow down my research on how to support them better.

It was a good visit but, I think, not what the lady had planned. She had a sheet of questions to ask. Instead of going through those questions MC went through a prepared list of the things they have a hard time with. She flipped her paper over and scribbled like her life depended on it. She scheduled an appointment for me to come back alone and fill out those questions about developmental history. 😂

I had talked MC through how I handle appointments as an adult who does not have anyone to report on childhood milestones/attainment. I forgot that MC is not having my life. Whoops. It’ll be fine.

MC is automatically getting 3 separate assessments based on clinical presentation in this appointment and the intake lady hinted about others that might be relevant after we can actually go through developmental history with a fine toothed comb.

This is how seriously Stanford took EC. I was deeply worried I would not find a way to access similar granularity of help for MC/YC. Stanford did *not* take MC seriously. Stanford asked MC 20 yes/no questions and told me I had a perfect little boy I didn’t need to fix. That was really frustrating. This time the lady watched MC almost vibrate off the chair and noticed “Do you find that you are ever able to sit still?” Only if the kid is in a severe dissociated state because they are imploding under the weight of their own anxiety and it is combined with mutism. No. They can’t just hold their body still like a “normal person”. It is not possible for them.

I am feeling a lot less nervous about this process now. The lady also took it very seriously when I said I have two other children who are also clearly neurodivergent. I don’t know what will come of her making notes about my other kids as well. YC isn’t even on a waiting list at this point.

YC’s flavour of neurodiversity is pretty easy to accommodate within our already heavily modified for neurodiversity lifestyle. EC is doing really well with the structure we maintain. MC needs… something I’m not doing and I don’t know what. I am grateful that the NHS is trying so hard to help me figure out what I should do.

The lady looked really pained when I talked about my own history of being beaten up in school after school and how I was not even a tiny bit surprised when people beat up my children in school. Autistic people are magnets for bullying behaviour.

Human beings often want to hurt people who are different. It’s a thing. A really sucky and terrible thing. I was glad that she showed absolutely no sign of believing that it would be best for my children to be in school. *phew*

Stanford Child and Adolescent Development was quite adamant that there is not a better learning environment for EC than what I provide. They had tiny tweaks to suggest, but nothing major. I hope that the NHS can help me find the tweaks that will give MC also the best learning environment for them. Right now there are a couple of areas that concern me and I don’t know how to fix them. I do need outside guidance.

It’s kind of funny that EC doesn’t mostly overlap with my learning difficulties. His troubles are out in front of me and I can study them without feeling emotionally connected. I just need to support. MC and I share some of the same struggles. The ways in which I have never managed to overcome some of my own challenges inhibit my ability to figure out how to help them make progress. I need a more objective view.

But first I need to go run 4 miles. I’d rather eat glue.

I hit the wall this week. I think I was lowkey sick over the weekend when the kids were all very sick. I kept exercising and working the whole time. I don’t feel like I’m still dealing with a fever but my body wants to tell me to go take a long walk off a short pier. I can’t even tell how much this overreach is about physical load and how much is emotional load.

I feel like my soul is hurting. I miss the physicality of all of my California friendships.

It is already getting much colder and I am not feeling great about the change. My body is hurting a lot. I felt like the tiny increase of warmth of spring was a huge massive welcome change and I was going around outside in skimpy clothing because I was overheating. Now the same temperature range is making my bones ache.

I am not sleeping enough. I am rarely laughing and that can’t be good for me. I feel somber and like I have a flat affect. I feel numb. How can you feel numb and pain at the same time?

I really need to go run. I feel like that is an absolutely outrageous ask just now. Oh well. What I want is not important. What matters is what I do.

I’m about to fucking explode, y’all.

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I am not ok and it is perseverating in my head and if I don’t set it down somewhere I am going to continue to freak out in my house with my kids and that’s not cool. So let’s start there, shall we?

My kids are acting appropriate for their varying ages. All of these stages are hard at this moment in that awesome way that sometimes cycles pop up. My oldest is a fucking teenager with a fucking rude teenager mouth. I feel like he just has to tell me I’m wrong or express exasperation at my stupidity over and over all day long. Often at times when I am not actually wrong or being stupid. I mean… when I am wrong I tolerate a fair bit of sass but it drives me insane when I’m not wrong. Middle child is not wanting to accept responsibility for some areas of forward progress and I’m struggling with that. Youngest is pushing every button and boundary like it is her job… because it is.

So that’s all fun and the background noise of every single day.

I went back and checked my logs (hi, yes I am incredibly obsessive about tracking all kinds of stupid details) and starting in June I went from sleeping 8 hours a night on average over the course of the month to sleeping 6 hours a night on average. The months since then have hovered around 7 hours a night on average. That’s pretty certainly part of why I have been doing much worse. Why did I start sleeping so much less?

Ah, fucking lockdowns are over and I feel incredibly pressured (mostly internally) to get out and Meet People and Volunteer and Be Part of the Community. Also this summer has been quite energetic with gardening tasks as I’m moving towards the permaculture/low key food forest direction. I’m super tired. Also eldest said, “Let’s go ahead and finish the lounge” and I said, “Oh uhhh ok.” I was kinda hoping to procrastinate the work long enough for the paint to go bad. Then I found out my old buddy was coming and I have some projects I said he could help me with. So I started sprinting to get stuff done before he arrived.

Reader, I fucking failed.

I’ve been very much working beyond what I should be. Oh, and late May was my first trip down to England to see A & P then in June I went back down to England to bring Noah and the kids to see A & P. That is seeming like the best decision I made all year.

Oh, and I averaged 6 hours a sleep a night the month I had fucking covid and I slept through 4 days entirely. THAT’S REALLY FUCKING BAD.

I’m not ok, y’all.

July was a sprint of work I was not physically prepared for. I have never taken time to really fully recover from covid, not really. I certainly haven’t carefully increased exercise over time to get back to the fitness I had.

August was a super sprint of work and it was exhausting. September was a lot of work sprinting plus my birthday which was absolutely fucking exhausting to the extreme and I probably made some foolish choices. I was not physically fit enough to do what I did comfortably and I have paid for it. October has been more and more work and then Noah and EC went off to Helsinki then the morning after they got home I ran off to San Francisco in a last ditch effort to say goodbye to A.

In a way there are shadows of my uncle passing. I was too late. I feel like I failed and I am upset with myself. I did get to help P with one of the thornier parts of handling A’s belongings and I am deeply grateful I could perform this service.

Being in San Francisco involved a ton of driving (ow ow ow ow ow ow ow ow) and many hours of work and many different social interactions one right after another and very little sleep. I just couldn’t except for a few times when I passed out in awkward scenarios. Three people said they wanted to make plans then cancelled at the very last minute. Woo. That’s always fantastic.

My buddy is a challenge in many ways. I don’t want to say too much about that but I will say that he is very emotionally needy and he wants me to help him process and understand his entire life and that’s a fucking tall order. I am not a therapist. I feel like I am drowning in his feelings. He also can’t remember a lot of our conversations because of how much he drinks so each conversation has to be repeated a few times and that is really frustrating. I don’t begrudge him the needs but my bucket is so fucking empty.

I feel empty. I feel like I can’t take more shit being dumped on me. I feel like I want to scream and scream and scream until I have destroyed my voice from screaming. I want to sleep for several weeks in a row. I want to stop speaking to people at all and I want to go back to lockdown. I am so far into burn out I feel like a pile of ash.

I know that I am a good person to help people process grief but right now I can’t handle the flood of it. It’s not just the one buddy. I feel absolutely surrounded by loss this year. Grandmother in law, A, my buddy’s parents, other friends have lost family members, a different buddy is dealing with her kid self-harming, a somewhat surprising number of pets have passed recently and folks want to talk to me because I give them comfort. Right now it feels so hard.

Oh, yeah, and it’s been an incredibly stressful year on the money front. I think things have settled down now and while we are not fully “on track” we are in a very reasonable place and I’m no longer worried about bouncing payments. But it’s been a fucking lot.

Err, also my roof just got replaced and the scaffolding and construction fuss have been irritating and challenging because to a large degree it has meant that YC has not been able to play outside unsupervised for over a month. That’s not a great situation.

I’m not exercising enough. I stopped my yoga classes because we need to be contributing more to savings. I’m not eating well enough–I am actually not enjoying the kids cooking 4 nights a week because rarely do they put more than 1 vegetable serving in a meal and it’s not doing great things to my body. I’m sleeping for shit.

It goes on and on and on. I’m sure I’m not remembering all the fuss. My head hurts. I am tired of being tired.

I just came to say: goodbye, love.

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The dawn is less bright today. You might think that is because I saw the sun come up over soggy England but, no. This is the first sunrise without Andrew in it.

I first encountered Andrew through Frenzi, a mailing list centred around a group of folks in the bay area who all share a hobby. I met a lot of brilliant, witty, argumentative, wise, and patient people through there. Of course there were a lot of dipshits too.

Andrew was the first person to flame me on the internet. To be fair I had told him that I was surprised that I was never attacked because I felt like I often expressed contrary/unpopular opinions. So he taught me what it felt like to be flamed. Ouch. I learned an important lesson: Andrew was as painfully literal as I am. If you say/imply you want something he will make it happen if he possibly can.

I think I first actually spoke to Andrew and Paula at a birthday party for a friend. I am pretty sure that was my first time ever going to a Thai restaurant and I completely fell in love with the food and the company of the people I was lucky enough to sit next to. Specifically: Paula. She was so kind and gentle. It surprised me that someone as gentle and carefully considered was suited to be married to someone as prickly as Andrew. Later I came to understand how they complemented each other.

When I first moved out of living with Tom things were scary for a while. I was not sure how I was going to pay my bills and still have money for food. Andrew told me that he would absolutely not accept me going without food and if I was that skint I needed to let him know and he would make sure I ate.

With my background of poverty and periodic starving because my mother could not afford food at all he seemed absolutely unbelievable. Why would he care?

I feel like that was one of the overarching story arcs of our relationship. I have never really understood why he cared so much about me. He frequently made offers of support and love and affection and I didn’t know how to accept them. He was also very free with his opinion and he was often insightful and hilarious. One memorable time he found out who I had started dating and he said, “Oh Krissy, dump him. He’s not smart enough for you and you are going to get so bored.” He was right on the money. He loved Noah for me.

Paula helped finish the walls in my garage in Fremont. Andrew helped paint the ceiling. It made me so happy looking at that ceiling for years knowing that Andrew helped. I could feel his (and Paula’s and Taylor’s because T did soooooo much on that project with me) love surrounding me. Co-working has always been my strongest love language.

Andrew introduced me to books and told me about movies I should watch. He was very annoyed he could never get me to juggle.

We had a big falling out around my 30th birthday. We both did things that hurt the other quite badly. One of the things that I am most grateful for in this life was the chance to try once then a second time to repair the damage from that situation.

Andrew forgave me for being selfish and stupid and cruel. That was a gift he did not owe me. I am lucky that I got to have him in my life for decades. I got to have closure on talking through a situation that hurt me deeply and he felt truly contrite and loving and apologetic. He showed me how to repair a deep wound. Not very many people have been able to manifest that complete journey with me in my life. Andrew was *special*.

I am grateful to the marrow of my bones that I went and saw him twice this year. I loved helping him drive the boat and operate the locks on the canal. He told me that I learned how to drive the boat unusually quickly–he felt confident enough to just leave me alone with it after just a couple of hours of supervision. I felt elated through and through. Like me he wasn’t the sort to hand out unwarranted compliments. I had to have a stern chat with him about why I set the boundaries with my neurodiverse children where I do and he took that on and manifestly started following my rules. I felt respected.

I feel like that is the core. That is the core of what Andrew gave me: he saw me and treated me like someone he respected deeply. I met him at a time in my life when I had not experienced very much of that.

No one is perfect. But Andrew was perfectly wonderful and I am so grateful that I got to have him for so long. Here in the end he is even leaving me an extra gift. I may not be able to say goodbye to him, but he asked me to come to the bay and as a result I will get a lot of love and support from other people who have known him and loved him for as long or longer than me.

It is very hard carrying grief alone. Being able to share grief lightens the burden and helps everyone remember that no one fully dies until everyone who knows and loves them is gone. Andrew’s spirit is going to live on for a long, long, long time.

That’s what I mean

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I used to ask my mom strange questions. I remember that I had a few in particular that I’d ask over and over and she’d kind of freak out. One was: “What would be the most important thing for you to keep if we become homeless and we lose our car?” That question really bothered her and I asked it over and over and over all through my youth.

My oldest asks me what I would do if she died. I don’t think she is suicidal–it’s not that sort of question.

When I’m doing work I often like to have a show I have basically memorized in the background. I haven’t ripped the DVDs yet so West Wing hasn’t been my show of choice since I left the US. Here it is Call the Midwife. There’s an episode where a one-show character is introduced. Mrs. Jenkins is an old woman who spent 30 years in a workhouse and all of her children died there. This character exists in the show to show the rich and privileged main character, Jenny Lee, what it is like for people who have really suffered in poverty. Mrs. Jenkins cries loudly “The workhouse howl” as she keens her grief when she is alone.

That episode came on last time when I was painting and my oldest was sitting close to me working on her drawing while I painted. I said, “That’s what I mean. You always ask what I would do if you died. I tell you I would go on living but I would never be ok again. That’s what I mean.”

She looked utterly shattered.

Life is painful. Sometimes there are people you cry over forever. The smallest, stupidest reference to my mother can lead to me crying. That grief is so close to the surface that if a gentle wind blows away the leaves covering it then it goes off like a bomb. Am I still alive? Of course? Am I ok? In a manner of speaking. I smile. I project happiness. But I ache every day because there is a piece of me missing. A piece that I tried so hard to replace with friendships only it never worked out.

I’m almost 40. When will I stop crying over my mother? I’ll let you know if it ever happens.It is absolutely terrifying to consider how much it would break me if I lost a child. Some days I feel like I am held together with paperclips and string. How could I replace that much loss?

I need them to out live me. So eat your fucking vegetables and get regular exercise, damnit.

Loss

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I support your right to make this choice.
I understand that you did not have a choice.
I don't truly respect your choice.

The cessation of pain is what matters though, right?
I am so glad you are not hurting anymore.
Now I hurt more; there's nothing I will do to ease this burden.

I miss your voice.
I miss your smell.
I miss the possibility that things could change and we could love each other without hurting each other.

I miss you.
And I miss you.
And I even miss you. Though only the Gods know why.

You only caused me pain when I asked very nicely.
You never caused me pain in any single way.
I don't know what you did except hurt me. 

It doesn't seem to matter how much I love you or miss you.
Your story was really and truly never about me; I was a witness.
Even though your life could have been about me and it wasn't.

I grieve so hard for you.
Any piece of fresh grief touches the memory of you and reignites the pain afresh and the waves feel like they will swamp me.
"Have you ever lost anyone close to you?" Dripping with scorn and implication that I am not allowed to grieve for anything to do with you.

It's all tied up. 
I can't separate one grief from another today.
What I know is that there are no more chances to fix anything.

There is no way to find you more help.
There is no way to find you new treatments.
There is no way to find our way to a new way of being.

You are gone. 
You and
You and

Time has run out.

Thinking about Alex

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The child I lost is named Alex. I’m not sure why, I doubt I would have given the child that name if he/she had actually been born but in all of my thoughts about him/her that’s the name the baby has. I would be 18/19 weeks pregnant right now, so not quite halfway through the pregnancy. I would be feeling movement. The early fluttering is some of the most powerful magic I have ever experienced. Feeling the creation of a Being, a Person inside me made me feel connected to the source of all life in a way I have never felt before. I’m sorry I am not experiencing that magic with Alex right now.

In some way I kind of wish that we would just hurry up and try to get pregnant so that I can bury my feelings of loss in the joy of another life but that feels wrong. In addition to Shanna deserving a full two years of milk I think that Alex kind of deserves the space in my heart and body that he/she would have had for nine months. I don’t feel critical of other people who get pregnant quickly–anything but. This grief is such that I don’t think I could possibly judge other people for how they handle it.

I’m bleeding again. I think that is why it hit me tonight. Once upon a time I greeted each monthly flow with relief, “Whoo hoo! Dodged the bullet again!” Not anymore. Now every time my body empties of blood I cry and see the loss of a person. I see the child who will never be. I can’t believe how much this hurts. I say this and know that I speak from the unbelievable privilege of having a living child. I feel desperately ashamed at my hubris and greed. I am so selfish. There are so many women in the world who would give anything to have a child–just one–and I’m crying because I had a normal menstrual cycle while using birth control. I’m sorry for being so selfish.

I miss my Alex. So I grieve. Even though I feel like I don’t really have the right I cry anyway.

When discussing blame for losing Alex my therapist said, “I knew it was your fault–I just didn’t know how.” It was really funny at the time. Every woman who loses a child feels like they are to blame. Sometimes I feel like I lost Alex because I am just not a good enough person. I didn’t deserve that child. I don’t know how to reconcile that with what I see when I look at Shanna. She is so beautiful and so perfect. How can I be a good enough person to deserve her and not a good enough person to deserve another child? But there is no deserving or not deserving in this. There is only luck of the draw and there is no such thing as fair.

Tonight I rail at fate. I want my child back.