When your kid is blind, even the cancer parents pity you. Walking through the children’s hospital, armed with every ounce of strength you can beg, borrow, and steal from your depths, you know. You pretend not to notice, but you know. It’s a funny dance. Thank god my kid isn’t doing chemo today, I think. But I see in their faces, those other parents and kids, that for a second, they feel like they got dealt the better hand. Maybe that’s a kindness. There’s no way to know which kid we pass in the hall will make it another six months. We don't have that threat. But we don’t get the hope either. This doesn’t go away. One doctor told us, there’s never been a better time to be blind. Things are happening every day. Some day in your lifetime there will be a technology or surgery that will make this better. I’ve often wondered if that was the right thing to share. Because every day where that isn’t happening, is just another day where these circumstances really suck. So he learned Braille. He is a brilliantly quick learner. He learned Voiceover. He can navigate the online world almost as well as someone sighted. Some websites, like Lego, he probably has entirely memorized. We pretend this is normal. When we meet people, he has plenty to talk about. Our life is full of meetings. We meet with doctors. We meet with specialists. We meet with agencies who provide services. We meet with other parents and kids and sometimes we truly do find someone *we* get to fully pity. We meet with teams at school and fight with teachers and fight with our own perfectionism to remember that everyone is doing their best. We find joy in small things and laugh together and make it work. And when he tries to hurt himself, when he tells me he wishes he hadn’t been born, when he tells me how he feels like a burden, when he looks inside himself and finds only despair, I hold him and cry and try to get through to him again and again how little his blindness matters. A lie and also a truth. I grieve the life he could have had. And I love exactly who he is. And I see how hard it is, and I want to do what every parent wants to do: protect, shelter, rebuild the whole world to save him from pain. Sometimes I pretend I have that power. Sometimes I’m legitimately just powerless. There are moments when I reach that place where the parents have to let go, those interior hospital doors, the moment the nurses draw the line and take your child from you and say - this is the edge, from here you have to trust us. If I were religious, that would be a good metaphor. Maybe it is anyway, a metaphor for loving our children. We can only go with them so far into the experience. After that, we have to believe and hope, and ultimately, for our own sanity, let go. I have been stopped at that line. I have tried so hard not to cry or cry out as they took him from me. I have tried to be strong. I have mostly failed. I don’t always feel like I’m fighting against the world. But when I say I want to stand in front of my child with a flaming sword, that’s coming from all this. I know what it is to want to erase the world for someone you love. Instead I soldier on. I learn to care about Pokémon, sea turtles, Lego sets, World War 2, hobbits, puns, Diary of a Wimpy Kid, the Russian revolution, DC vs Marvel, musical theatre, Lilo and Stitch, the plot holes in Harry Potter, scrimshaw, the historical accuracy of Mulan, John Williams scores, Dungeons & Dragons campaigns, Greek mythology, the most beautiful love song in any Disney movie, collectible action figures, the influence of Inuit culture on Avatar: the last airbender characters, the best popcorn in the country, Jessie’s PTSD in Toy Story, stormtrooper armor vs arc trooper armor, his love for his dog, and Bertie Botts Every Flavour Beans. I pretend to be okay. I pretend to be in control. I admit to him that yes, it sucks. I admit to him that I don’t have it figured out, and I admit to him that I, too, know that internal place of despair. For my son, and for myself, I pretend that life is more than just surviving another day. Sometimes I don’t have to pretend.
Anne Doventry is an artist, author, apiarist, and Anglophile. She has studied poetry with Ellen Bass and folklore with Kate Chadbourne. She holds Masters degrees from both Harvard Graduate School of Education and Rice University. Born and bred deep in the heart of Texas, she currently spends her time traipsing through New England, but mostly lives in a world of her own making.