This has been the worst 18 months of my life. It’s amazing that a person can keep saying that, and it can keep being true. Like, there should be a bottom to the “worst” but I admit that I had not ever considered the cumulative effects of being isolated with a behaviorally challenged trauma child for an extended time period.
Everyone I know with children struggled the last year. I know a few people who didn’t struggle as much – but they are for sure the exception. I cannot overstate how much worse it was for people with trauma or neuro-divergent/behavioral special needs children. It just was. This is not said to diminish anyone else’s experience, and we are lucky in so many ways, we have a nice house, we have plenty food, we were not financially hurt. But it. was. so. far. beyond. awful.
I stopped writing in this blog, and in my personal journal – I couldn’t handle recording the awfulness over and over – and it didn’t help me work through it because there was no “through”. In a a lot of cases I stopped communicating at all because it was simply too hopeless and I did not have a single positive thing to say. It’s really hard to say “I actually just want to die” over and over and over. My partner and I could not help each other because we were both beyond empty and drained, we lashed out at each other or self-isolated. No one was wearing their oxygen masks and we were suffocating. We were not the only family that was suicidal, with no options and no hope – we are lucky because we are not dead. And, we are lucky because we had some people who are absolute lifelines of emotional support and sometimes in-person support.
There’s a really funny thing that people do when they see true struggling; they offer a lot of ideas that involve doing absolutely nothing themselves. And I get it, you cannot always help people, we are all at max capacity here! But it is like they are trying to offer you some information they think you do not have…
“It seems like you might be in crisis”. YOU THINK? I have been screaming “THIS FAMILY IS IN CRISIS” for the past six months. Did you think I was lying?! Did you think I was exaggerating for attention? Why do you think you see something that I am not aware of in your brief viewing of what is my entire life?
“Do you have someone to talk to?” ABOUT WHAT? WHAT THE FUCK IS THAT GOING TO DO? THIS IS SITUATIONAL NOT EMOTIONAL. IF I COULD CHANGE THIS, I WOULD!
Then you explain (1) no matter how bad it gets there are no hospital beds; and (2) oh, being passively suicidal is not grounds for hospital admission; (3) being “on the verge”, including yelling, crying, just generally falling apart in an unhealthy way is actually not grounds for hospital admission; (4) because of Covid, your kid also cannot go to an in-patient facility; (5) there are no “respite” providers to take your kid briefly or long term; (6) we have talked to people, we do talk to people, but that doesn’t solve situational issues – only changing the actual situation will do that; (7) there is no “crisis” help. The lines are shut down or the person will talk to you for a minute, but no one can come help and it is weird and surprising but it turns out a screaming out of control 7 yr old is not super responsive to someone talking over the phone – and neither are her escalated parents! The ONLY interventional option is to call the police, and sometimes they will not come because they do not believe there is a crisis when it involves a young child; (8) your child doesn’t qualify for any of the programs for support families because your child acts out sexually, and they do not accept those children. Then they say, “yeah, I believe you, but you need to fix this, it seems like you are in crisis”. Thank you. Again. For all your thoughtful insight and the immense aid you have and continue to provide.
I am a solution-oriented person. Feeling helpless is the absolute worst thing that can happen to me except actually BEING helpless and trapped. I can take the pressure, the pain, the overextension, the misery, the fight. I cannot cannot cannot be helpless without a way to solve the problem. I cannot tell you what living through the last 18 months was like. Having X3 regress; having my partner and I both lose it; and having absolutely nothing we could ever ever do. There was a night, when I tried to walk away from the engagement because I felt myself escalating and I did not want to yell, or scream, or lose control all the way and maybe hit my kid, and I just needed to remove myself from the escalating and never-ending hellscape. And I was sitting in my bed, holding X2 and calming her as she was shaking with terror, while X3 tried to break down the bedroom door to get to us and just thinking…”this is our life now” and not being able to visualize anything else ever.
I described before the physical symptoms that were constant. I was so sharp, I felt like speaking to me was talking to knives, I had no softness left, I had given everything I had, I snapped at everyone all the time. I cried when small stresses happened at work, and stared blankly for hours when large stresses happened at work. I did not have access to joy or pleasure. I was begging mX3’s therapist for help; I remember just screaming and crying and raging in parent (virtual) therapy sessions, “I have done every. single. thing. that you said to do for three years, and she is getting worse and I am empty. Our life is getting worse. Our younger child is developing trauma symptoms. We are going to die. This is not hyperbole we are literally going to tear ourselves apart.” This raw, deep, painful expression of pure helplessness and need. And she said, “There is no help. There are no services. There is nothing anyone can do. She will not get better while things are like this. You have to call the police if this keeps happening”.
I cannot tell you how we made it through as the hits kept coming. It never like…got to an equilibrium and it was “this bad”. It just kept getting worse. I do not even know how that is possible! But it was.
We survived. Amazingly, we survived. My brother stayed with us for months, during the absolute worst of it all, and is literally a lifesaver, as well as just being generally a joy to have with us! Adults got vaccinated and services started up. It got warm enough outside to use the pool – large body movements are super-calming for X3. She was able to start attending OT twice a week, therapy once a week, EMDR every other week, school and activities started to happen.
We started to breath. It was not even remotely immediate. But we started to move forwards. And things are so. much. better. Like I think about how I sounded when trying to explain to her therapist how bad things were, when I self-reported every loss of control, every re-traumatizing moment for X3, every fear about where we were and where we could land if we DID NOT GET HELP. I can remember myself and my voice and the raw pain and it feels almost like a fugue state – I can remember it from outside myself, and see it happening, but I cannot imagine feeling that way right now and I cannot imagine moving through that life, I cannot imagine how I ever got out of bed. I can barely get out of bed now!
It is weird and terrifying to remember that level of intense feeling. It was not long ago at all! And the feeling is still accessible, especially as we watch friends with children like ours who are still in the thick of it suffer and persevere in pain. But we are SO MUCH BETTER now that it feels like that time happened to a different person, even though it was me a hot minute ago, and I, and the whole family, are still struggling to move forward.
Things are SO MUCH BETTER RIGHT NOW but they are not even back to where they were 18 months ago. We have a huge trauma to work through, as a family. We have a huge attachment regression to heal, and we already have a child with a “oooooh we do not want to name it RAD….diagnosis” and a lifetime of her past trauma (and our own) that we are trying to move through.
She regressed significantly during the last 18 months. We are honestly worse parents than we were three years ago – less patient, more exhausted, more hopeless. We are significantly better parents than we were 6 months ago. More hopeful, more rested, more patient, less triggered. Most importantly, we feel like we can go forward; like we want to grow together; like this family is and can be real if we can just keep moving together with the world functioning. We are on the wait list for intensive in-home therapy, which is exactly what we need – someone with us in the hard times AT HOME – who can teach us the skills to deal with the big moments in real time; who can give us the space to disengage when things are hard; who can keep X3 safe when we walk away for a minute; and who can hopefully move us into the next stage eventually. We are so hopeful.
Right now X3 is playing dolls – and no one is being poisoned, beaten, knifed, abused, sexual, angry, or any other thing. She is brushing the doll’s hair and asking the doll if she wants puffs or braids and telling her she is beautiful.
Right now X2 is playing school; her dump truck is full of dinosaurs and superheros going to school. When I was trying on new clothes for work I asked if they look ok and she said “no. they don’t look okay. Mom. They look fantastic!”.
We are moving forward and we are going to get there.
