Small Son’s test results came back, and his calcium is elevated. Once upon a time this happened to us, and he descended into kidney failure because of it. We’re hoping it can be changed with diet instead of drugs, and I’m keeping a diary of everything that he puts into his mouth. It isn’t much.
Today he was supposed to go into the hospital for a sedated brain MRI, a renal ultrasound, and more lab work, but he caught a cold so we rescheduled it for next week. Nerves devour me. Will we find the answers that we need by looking into his brain? There is this feeling that I get whenever I sit down across from his doctors. It’s cautiously hopeful and laced with terror. This is how I learned that I narrow my eyes when I’m listening intently. I try not to do it anymore because the doctors don’t like it.
Small Son’s school is trying to ship him to another school and place him in an autistic classroom there. He doesn’t have autism. His doctors and geneticist all agree that this would be detrimental to him. His father and I feel the same way. The school still pushes this recommendation, and I spent three hours in a meeting last week listening to their arguments. Most of them were illogical. I think it’s all about being right and getting rid of an intricate, challenging child. I came home and my son kissed my cheek. I want to say, “How does it feel to be six years old and have people be afraid of you?” Of course I don’t say this. I usually never say anything.
Santa brought Small Son and Tiny Daughter a pair of Big Wheels for Christmas. I sit on the back patio and watch them ride around. Tiny Daughter chatters. Small Son laughs. I write everything down in a notebook, because suddenly it occurs to me that I should write about all of this. It will be a book full of struggles and hope. I’ll explain that the hardest part isn’t the medicine and therapies or even the hospital visits, but it’s the way that some people treat us. I’ll explain the strength that I have discovered in humanity. I’ll tell of the anger that is always right there under the surface, and how today’s cashier is lucky that I can control my temper so well. I wonder how long I should wait until I write it, or if I should start now. I believe in happy endings.