Oye. What a week so far. I started on a high note, and it sort of went downhill from there. Add in getting sick, topped with preparations for our vacation on Sunday, and I am absolutely fried. I had to go in to school for a little on Wednesday while running a fever because some friends and I had to do a presentation. It went well, and I actually hung on to a thought that was presented by the theorist we were discussing. In referring to a nurse treating her patient, our theorist stated “they are more than the sum of their parts”. I sat with that thought a while. We are so much more than one piece of a puzzle – we are all pieces put together to make a big, beautiful picture.
I felt this dramatically about my son today. Before I tell my story, note that it’s been a rough week and I am feeling sick and a bit emotionally raw. Harry’s very first school pictures awaited me in his backpack today, and I was not prepared for what I saw. The first picture I saw was his individual picture. That wasn’t really the issue – I knew I would be too picky and not like it. It was pretty terrible – he’s not really smiling and he’s not looking at the camera. What absolutely floored me is the class picture. There are 12 kids in his class – 11 kids and 4 adults are looking at the camera, some smiling, some not. And then there’s Harry. He is on the end, in a chair, slumped back with his head tucked so bad that you can’t even see his mouth. I nearly fell over. How could anyone have thought that this was an acceptable picture? I hastily dialed the customer service number, thinking I would have no control over the yelling that was about to come out of my mouth.
What happened next surprised me – I started to bawl hysterically. I couldn’t stop it. I sobbed my way through explaining to the woman that I know they aren’t miracle workers, and I know it’s difficult working with kids, let alone toddlers, and a group of them. But all I saw was my son’s disease, and I told her so. How dare they capture a picture of my son’s disease and not him. She offered condolences, told me she understood, and escalated the matter. Later I received a call from someone else who was nice, and offered to send me the other pictures they had. When I asked her what they looked like and why they weren’t picked, she answered something strange. She told me, “when looking through the pictures, we did make every effort to improve his posture, but could not.” I’m sorry, but this is absolute shit. I have two pictures in my hand – one where he is sitting up and one where he is not. Maybe, in the class picture, he was acting like a toddler and melting, refusing to sit up, but I couldn’t care less. Make him sit up. Now I and everyone else is left with a ridiculous picture where he is a weak boy with muscular dystrophy standing out from his classmates.
I will make this right, just like I always do, but goddammit I’m tired of that. Why can’t anything be easy? For once I’d like a “normal” kid thing to go easily without my blood sweat and tears in them. Ugh. End rant. I’ll try for a happy post tomorrow, with happy Harry pictures in it.