Mark is hosting Dungeons and Dragons tonight. Since taking disability after cancer treatment, D&D is Mark’s most effective treatment against the depression that can sneak up on him if he doesn’t arm himself with a purpose. Noah likes to sit with the gamers (Noah signs “friends” by alternating his index fingers, laying one over the other) at the card tables set up on the back porch. When the players laugh, Noah laughs, though he doesn’t understand what they are saying, why what they are saying is funny. Occasionally he takes a turn rolling the dice, but usually he watches his iPad, one ear on the conversation, waiting for words he recognizes, waiting for laughter.
Tonight Noah has been given a stack of blank copier paper and a blue highlighter. He bends over his work like a jeweler inspecting a tray of diamonds. His nose almost touches the paper, he is both so intent but also so almost-blind. We still don’t understand his vision issues. He is significantly near-sighted, but it also seems being close to a screen or book helps focus his eyes, still the nystagmus that makes his eyes flicker and dodge. A variety of examinations by a variety of experts have yielded no concrete answers, no applicable strategies. Some tell us to try glasses; some say glasses won’t really help and will only confuse his adapting perceptions. Noah can’t tell us much. He just adjusts.
I have walked by the door to the porch several times to check if he’s being disruptive to the game, but he is sitting quietly next to Mark, diligently drawing. I post a picture on Facebook of him in such studious pose, label it: Dungeon Master’s Apprentice. The picture gets many likes. But that captured moment is like so many: on the face of it, Noah is accomplishing something that looks so like what other children are doing. I post a picture of him riding a horse like he is taking a lesson, but it is hippotherapy. I post a picture of us at the pool, but after years of lessons he still cannot swim and we stay in the shallower end. I post a video of Noah ‘running’ the 50 yard dash at a track and field event for his school district’s special needs children. He crosses the finish line though he comes in last, and I am proud because he mostly stayed in his lane, didn’t fall, and ran the whole length without an adult to guide him. But that is not competition; that is participation. And for us, it is enough, but it isn’t what it appears to be.
When I share pictures like these, usually adorned with a clever quip or positive message, I am sharing my son, and my love for my son, and our adventures as a family, with my friends and our family and many acquaintances. This is as it should be. But each time I share these pictures I am also lying. The lie is the one I tell myself in trying to convince myself that my heart doesn’t ache with sadness over the limitations of Noah’s accomplishments documented as celebrations.
I know I am not alone in telling this lie. Social media is full of them. Lies of omission told by the abused, the abusers, the lost, the lonely, the insecure, the in-debt, and the unexceptional. What we present is not what we are. What we present is only what we wish for.
At 9pm I decide it’s time to retrieve Noah from the porch despite his diligent tasking. His face and hands are littered in blue highlighter graffiti. He grabs for his stack of papers, maybe 7 or 8 sheets, says, “Wook!”, proud of his art. I oooh and ahh, and I try so very hard to ignore that every sheet is covered with roughly-drawn circles, the only shape in 13 years he has learned to draw. Pages and pages of almost-circles.
There should be a word for this feeling of almost. Bittersweet feels too tender, a word for reverie. I want a word that is pride and sorrow intertwined. I want a word, a fresh addition to the limits of language, so I can claim this state. At the same time, I berate myself, think a better person–a better mother–would have by now shed her sorrow, managed her disappointment, and internalized the optimistic messaging she posts along with her Facebook photos. I adore my child, and I am so proud of his half-words, and small gains, and his pages of almost-circles, but I too remain almost-complete, my mother-heart more break than burst.