Senses

We are in the car driving to Dr. Sorkin’s office. Again. This time he is 15 and he is 6 feet and 2 inches and towers over me, his mother. We talk about the 7th grader at his school that died and we wondered about why young people could die and then we listened to Mac Miller and Jonah told me again a story about one of the rappers that he loves to follow on social media. We got to the appointment on time, I’m famous with my children for always being early, and the regular drill is happening now, temperature taking, Covid screening and sitting many feet from each other. The optometric technician takes us back to the most familiar hallway. We have been here a million times before. He has done this drill over and over again and still we both hold our breathe. The tech is new to us, so kind with funny jokes for mom and son. He gives Jonah drops and goes about with the letters. First the right eye and it’s hard to see once the letters get a little smaller. I can see them clearly and I am reminded of the disability that my son has. We can pretend this is not happening on most days. Life goes on and although he wears extremely thick glasses and is clearly having trouble seeing when confronted with a distance, this is our normal, so we are  good at forgetting, moving forward. The tech waves in front of his left eye, holds his fingers up. Nothing. He sees nothing in his left eye. The tech does the pressure and we go back to the last room on the right. I am back in time immediately. I am 33 years old with  two daughters, ages 5 and  3 and this 9 month old baby on my hip. I am wearing an old pair of overalls, my hair in a tangle on top of my head, eyes zipping from one running child to the next, so full of joy, these kids, my luck in this life. I was meeting Dr Sorkin for the first time. I was struck by his height, his soft voice and how kind he was when he turned to me and told me that Jonah’s vision was poor, really poor.  He wanted me to see a genetics counselor, he wanted me to see a retinal specialist, he wanted me to get him glasses, and he wanted me to do all of these things very soon.  

He called me that night at home. It was a Friday night and it was after 8pm and I remember thinking two thoughts at once; how thoughtful it was that this doctor worried for me and how serious that meant that this was for Jonah.  

Since that time we have been here a million times. Jonah has had multiple surgeries and did end up losing the vision in his left eye completely at age 3 to a retinal detachment. For 10 years Jonah has been fairly stable. He wears very thick glasses and we regularly see several different specialists and every 6 months we come here, to home base, to see Dr. Sorkin. 

Today in the office we are holding our breathe again. It’s harder now because we are all wearing masks. Dr. Sorkin and I talk about the kids, life in general as he does his exam. There’s a heaviness in the room and I am praying per usual, striking deals with a God I so want to believe in. Jonah’s pressure is high and he wants to see us in 6 weeks.  

We are the last to leave the office. This is not the first time we are the last to leave. There is a silence in the air and Jonah says that the esthetic of the air makes him feel nostalgic and asks me if he has used the word esthetic right and we talk about this word’s meaning. He feels quiet and is bummed to have his eyes dilated and turns on his bluetooth. He picks Billy Joel and plays “The Longest Time”. I can’t help but sing along realizing quickly that I know every word to this song and just like that, first quietly and then with more strength Jonah is singing in harmony next to me. I hear it in my ears and feel it in my heart and make sure not to make a big deal about it for fear that he will stop or remember that he is 15 and he is here, singing with his mom. It is a gift, a small prize for my efforts today and I don’t want the song to end.