Well, I’ve had a million stops and starts to this amazing journey. Writing has always been a necessity for my sanity, but in reflection also a place to put all of my pain. It’s hard to return to some of my work, because the pain I felt was unbearable, yet somehow I survived. I’ve been spending time rereading my journaling to reflect on the next chapter of my life.
Woah, I had to sit down. I was in so much emotional pain. Pain poured off my pages like the cascade of a waterfall. I always thought it was more of a trickle in the moment. Like, I always tapped into this surface level pain while writing, like I was just releasing the cap to let off some stream.
I wasn’t. I was begging for help.
A good amount of my pain was raising my disabled son. Born with a genetic syndrome and then, his brain injury. I know it led down an amazing and challenging path. He went to live in a residential habitation home six months ago. He is now 18. Honestly, I never thought I would get to this part of my life, when we didn’t live together. I thought I would die taking care of him. I mean, it wasn’t that I felt some martyrdom for raising him. Maybe I did, at times, feel like a Martyr. At least seeking the validation of my sacrifice. I never got it.
It takes a staff of people to do what I did. So, I know, at least there is that feeling. Internally. Help never came. He just got older. When he became legal adult, it felt like automatically the world stopped blaming us (the parents) and expecting us to clean up our own messes. Strange society that only gives a damn when at the last resort they have to- after all the years of suffering.
Since Dominic moved out, I got a new career, started graduate school, and just feel tired all the time. I am no longer surviving, but my lifer hasn’t move forward, yet. I am still trying to sort out the PTSD that raising Dominic left me to deal. I don’t want to talk about it anymore, which is wild because there was a whole decade where it was every conversation.
I don’t want to talk about it anymore. I wrote those words, and I meant them. Many people are really pushing for me to write a book. There are many different project ideas for how that would look.
A memoir that details my life raising Dominic.
A non fiction book that chronicles our challenges, but also brings to light the challenges of other parents dealing with the failing system.
A fiction book that brings elements of truth and storytelling
The world is just a different place than it was 20 years ago. I don’t think telling Dom’s story would call to action any change for anybody. For the system that care so little about children and to shrug their shoulders at the lack of services for parents raising difficult children. It’s shocking, then it’s not so much.
In the years I’ve been writing about Dom, I’ve had dozens and dozens of parents email me that my stories resonated with them and they were experiencing the same struggle. It was good to know we were not alone, and that connection has value in this space. The fallacy is that the individual story would lead to collective action. When you bombard the world with individual stories, it is easier to drown them out. It’s easier to deny that there is an institutional problem. When you have someone to blame, it’s harder to feel something strong enough to penetrate the national cultural agenda.
So, ok, we all feel the same. So, now what? Now that Dom is in a facility, I’ve never wanted to run farther away from his story so fast. I want to abandon all those years of pain and heartache. I don’t want to feel like I felt, and don’t want to remember how bad it was at times.
It comes out, in tiny spaces. In talking with my spouse. In that shared breath of “how did we make it through,” and shared joy that worked its way into our lives. In the music Dom loved, his love of cars, and keys, and windshield wipers.
I wrote this whole essay like Dom isn’t here anymore, but he moved five miles away and I saw him three days ago.
So, I am continuing to write, and this is just another start. I am sure there will be another stop. That is another day.
I started this Substack to write about other things. Maybe it’s time to write about other things. Maybe that’s ok, too.