Early Tuesday morning this week, we made our way downtown to a civic building where a photo campaign is taking place. See Beyond My Face is part of AboutFace’s campaign to increase awareness around living with facial differences. Marshall’s portrait is one of many on display in the building’s foyer, and we joined other families at the launch event. Like the other photo subjects, Marshall’s has some words about his facial difference printed beneath his image (thank you to Heather Davidson-Meyn of Fun Love Photography for taking his portrait). For Marshall, unlike his older peers, the words printed are not his, but mine.
Marshy’s caption was taken from some writing I did about him in the past, and upon reading it that morning, I was struck by the difference between my tone and that of the men and women who have written about their own experiences.
My words, though recent, are still full of anxiety and fear about how Marshall is treated by people who don’t know him. I wrote about girding myself against pointing and teasing and protecting him. In contrast, other subjects’ captions are more positive, confident, and hopeful. That’s missing, still, from my daily thought processes unless I make a conscious effort not to dwell on negative experiences.
I realize that Marshall cannot yet speak for himself, and that I have taken on the role as his public advocate, but my eyes were opened Tuesday morning. My goal as his father, and as Quinn’s father, is for my boys to grow up feeling loved, happy, and confident. My words on behalf of Marshall don’t convey that. Two and a half years later, I’m still thinking about many of the same things that were on my mind then. Of course, I have fewer fears about his immediate health and well-being, fortunately – we are very fortunate in that regard – but I’m clearly still dwelling on things I need to get past.
I’m someone who holds onto things from the past and lets them have power over me instead of learning from them and moving on. When I compare the words I have spoken on my son’s behalf, they do not sound like the words that have come straight from the minds and hearts of people who, like Marshall, are living with a craniofacial difference.
All of this makes me wonder again whether I have should be putting Marshall out there before he can decide for himself whether or not he wants to be written about and put out there for, potentially, the world to see. Throw in the ever-present fear that his photos will be co-opted for some awful meme, and it’s enough for me to step back from Facebook. How do I answer him if he one day asks, “Dad, how do you know whether or not I wanted you to write about me on the internet?”, or “Is there any way to erase everything you wrote?” On the internet? Probably not.
I have that constant fear that I’m doing it more out of my own fears than for him. Now that the radio piece and the magazine article from earlier in the year have happened, there is definitely no hiding that part of my personal life and separating it completely from my professional (or even just “outside-of-the-house”) life, which is what I have tried to do for two and a half years so that I could make it through each half of the day emotionally intact.
This is a long and entirely obtuse and rambling way to say that despite all the doom and gloom that gets into my words, Marshall’s life does not, ironically, reflect my words (Can someone actually tell me if that is irony? Alanis Morissette effectively destroyed the word’s proper usage for everyone approximately my age).
He is doing well. He is happy, healthy, and hirsute (come on – give me the alliteration, right?). For all that I still wish life for him was different (there I go again…), I can’t imagine not having him exactly as he is – beautiful, funny, and my little boy.
(I am listening to a piece on CBC Radio’s Metro Morning about the photo campaign and AboutFace as I type this. For all of the beautiful, wonderful people who spoke about their craniofacial differences on the radio, I love you all, and you are strong – stronger than most of us will ever have to be.)