I follow a variety of blogs on Facebook, and my favorite – hands down – is Diary of a Mom. I don’t know a lot of family blogs that have that same combination of love, respect, and word-magic. Hers and Emma’s Hope Book are pretty much all I’ve got on my list right now. They keep me tuned into my center, my foundation for writing, which is always about respect.
Today, someone asked why she doesn’t post pictures or more detailed descriptions of Brooke’s hard times. They said that the world needs to know. There were lots of beautiful responses, including her own. They were all variations of how we can raise compassion and advocacy by showing humanity, but without disrespecting our kids so. Who among us would choose to have a picture of our worst day shining from a Facebook page? Who among us would choose to write about the times we screamed, the times we broke something, the times we just totally, completely blew it? We could. We don’t. We don’t share those moments on our Facebook statuses or even in most of our conversations with friends. We don’t even share our own, so why should we share these moments on behalf of our kids — often without their consent?
Obviously, I agree. I use pseudonyms and don’t post pictures of faces on the rare occasion that I even post one. While many close friends & family know this blog is “me”, I don’t want the wider world to know who or what we are talking about. If I wrote a book, I wouldn’t use my name there, either, for the same reason.
Yet, on the other hand, I struggle with how real my writings should be. I don’t know that it’s real to talk about all the celebratory moments only. I mean, I focus most of my attention and heart on all those moments of love & connection, so they do make up a huge amount of my Facebook posts. They are the moments that I want to capture, a love letter to my kids for them to later read and see the ways they shine. But they aren’t everything. So then what?
I don’t want to post videos of my darling Little Man mid-hallucination or while destroying property. First of all, who the frick has time to do that? The few times that I have had to for medical reasons, it only added to stress and mayhem of the moment. I have taken photos of the damage afterwards to show my mom, my best friend, or my support group, because I need to say, “Am I alone? Has this happened to you? What do you think? What do I do?” They don’t make it to my Facebook wall, my picture album, or the blog. It feels skeevy on every level, like taking a picture of my daughter on the toilet and posting it for wide consumption.
My writing, though — that’s where I struggle. It’s a struggle that I’ve had since I started this blog. How do I share the hard stuff without disrespecting LM or violating his privacy? How much do I share? The point of this blog, after all, is to humanize all of mental illness & disability, not just be another part of the inspiration-porn that often surrounds our kids. Reading real stories, stories from Far From the Tree, from January First, from other memoirs & families — they gave me hope in a way that no textbook or doctor had. They made me feel that I was not alone. They showed me that LM is not alone. They showed me that we can do this together, including keeping him at home. He will make friends, like him and not like him, just like we all do. He will have a life that is all his own, with his own unique celebrations and stumbling blocks. We will keep putting one foot in front of the other. I write because I didn’t want other families or people to feel so alone through the journey. I didn’t want to hide my child’s difficulties or have shame surround his hard times. It is what it is.
Still, I respect that this is his story (and her story!), not only mine or ours. I am a partner in this journey. I am an advocate. I am not him, though. I am not him. So I don’t know that I have an answer to this question. I think it’s a struggle that I face each and every time I write. I know I will make mistakes. I am sure there will be times when I haven’t shared enough, and there will be times when I share too much. I will change my thoughts on this, depending on what we are going through and where LM is in his life. I know I will anger people, both families and self-advocates. I will probably anger different people within the same blog post. More than anything, I seek to write in a way that is filled with love. If he can feel that love, then that’s what matters more than anything.