Diary entry, number two
House of Gucci
Lydia and I went to see “House of Gucci” last night at the theater. It was a long movie, but we both enjoyed it overall. I thought the movie was well acted, and the story was interesting. That’s coming from me who could not care less about the Gucci brand itself, or the fashion industry in general. I did get excited when I saw a scene with someone clearly casted as Richard Avedon doing a photoshoot with Adam Driver’s character, Maurizio Gucci.
Long day of work
The girls in our home had the day off of school today for parent-teacher conferences. Today was the first time we’ve had conferences since before Covid. It was another moment in a long strand of recent moments that feels like we are moving forward in this pandemic, rather than stuck in whatever this past year and a half or more has been.
The girls spent a good amount of the morning outside with me raking leaves in the front yard. We raked something like 28 bags of leaves. There’s still plenty more to bag up, too. But it felt good to get that much accomplished at least. The weather was nice, and we didn’t feel rushed by the schedule at all. Everyone got along for the most part, and we had a good day.
A pleasant evening
It may be December 1st, but it was 66 degrees for a good chunk of the day. Our neighbors spent the afternoon and evening setting up their outdoor Christmas lights in their yard. Micah and the neighbor girl rode their bikes up and down the driveway and sidewalks wearing short-sleeved t-shirts. It was so pleasant outside, it’s hard to believe it’s December. I can’t remember a fall ever being this mild out.
Tomorrow my friend Jeff and I are going to go on a bike ride to soak up the warm weather. Something that seems pretty incredible to be able to do in December. I’m planning to bring my camera to document it. I’m looking forward to grabbing lunch after a nice ride through the woods. Not sure I’ve ever done the typical Taco Ride route we are going to take tomorrow when all the leaves have fallen from the trees.
Thoughts on starting a new photo project
For the last five or so years I’ve had a burning desire to make a photo book or magazine or even a simple zine and it just has never come to fruition. I’ve lacked the time or the continuity in my photos or the follow-through on the various ideas I’ve had to have ever successfully completed one. I started working on a photo magazine with writings from the past year, and some fun visual additions to a nice magazine, but with Micah’s behaviors recently I’ve not had the time, motivation, or energy to make it happen.
I’m giving myself some grace in it, with a caveat.
It was a promise I made to myself/my brother that I would not just have ideas and not follow through on them. So I feel bad I didn’t get the magazine made like I had wanted to. But I’m not giving up completely. I’ve rethought what I should do about a photo book or a magazine and have decided that I’m looking towards 2022 to help me have a beginning to this project.
I started reading/listening to the book Beautiful Boy and have already been inspired by his motivations to write, and his writing style. The way he talks about his son, what it’s like to write about his story and what it’s like to parent an addict, it really resonates with me. He mentioned how there are plenty of books are written by addicts or by those struggling with mental health, but rarely are there books written by the caretakers of those people.
I joked with my therapist briefly that I think this is probably because those who get high have the time and creativity or focus to write. People with bipolar disorder have the time and energy to write while they’re manic. (I say that tongue in cheek, knowing that that’s not how this works).
Parents don’t have much time to devote to writing. We don’t get much time to ourselves. Those of us who parent kids with special needs especially lack the time and energy to devote to writing out their thoughts, especially when those thoughts are poked and prodded at by all sorts of swirling emotions.
But I think about what I like to do, and how I like to document things in my life. And it made sense to use my interests and my drive to document through photographs and my love for writing to communicate what it’s like to parent a child with a rare genetic disorder, who is on the autism spectrum. That will give me a sense of focus, direction, and motivation to take the photos I want to take, need to take, to communicate my heart as I seek out connection with others who might also empathize with our situation or are going through similar things in their own lives.
I don’t see very many people writing or documenting what it’s like to be a parent of a kid with special needs. Not the nitty-gritty stuff at least. So my goal is to really start doing that in a more intimate way. To have my camera on me and snap the photos in the moments of distress and rage and violence, as well as the moments soon afterwards of his regrets and remorse. To take the photos of the bite marks from him, and the wrestling matches with him. To document the tears as well as the laughs.
I will do that while also trying to be more consistent about writing out how the days went. What the roller coaster ride was like that day. Because to me, at least right now, the hardest part of parenting Micah is the uncertainty of every day, of every hour, of every minute even. That’s the hardest part. And that’s the hardest part to convey to others. But those who are going through it, it feels so isolating. It’s so hard for people to understand. But I want to help others know they aren’t alone and I want to help normalize or at least familiarize others with a single story of a single kid who has struggles due to his own genetics and disabilities.
So I revamped an old Instagram account I had been using for a long ago dead photo project and hope to use that as a gathering place for the photos I plan to take of Micah and our experience parenting him. I’m just now working on it, starting it. Trying to imagine what it can be. But I wanted to make sure to at least start it and get it going. Perhaps by January 2022 I’ll have a more focused understanding of how I want to approach it.
My goal would be that at the end of the year I would be able to publish a photo book from the past year of photos and diary entries that I make here. Perhaps it could turn into something bigger, or maybe it stays more of a personal project. We’ll see.
Maybe it will spur on a different project, or it will take on a life of its own.
Stepping Back 