Yesterday, as we were driving around together, I said to Chris, "The rest of America has September 11th. We have September 13th."
That's the day I took Elias to his pediatrician and subsequently found out he had a brain tumor. That was the day that began a major change in course for our lives. We are now the parents of a cancer patient. My son has cancer. He is being treated for cancer. Now we live in the world of hospitals, doctors, tests, medical needs, etc.
If you are the parent of a healthy child or children, like I was, you are probably not even aware of this "world". Even if you know about it peripherally, you don't really know.
My nephew, Will, was born with Spina Bifida and spent a good deal of his time as an infant in the hospital. He had several surgeries. He has special medical needs that continue even now that he is 4 years old. While I have never lived in the same city as Will's family, I have visited them often. My sister, Diane (Will's mom), always kept me informed of what was going on with Will.
Even though I knew about Will, I didn't really know about his world, my sister's world. When I, through my son, became a part of this world, Diane called it "a new normal". She was right. You just learn to cope; learn to accept that you are going to be seeing doctors quite frequently, that you are going to be pushing medicines through a line coming out of your son's chest, that you are going to be changing bandages, that you are going to be going to therapy, that your son will not be going back to school this year.
But, you know what? I don't want this to be NORMAL. I want this to be TEMPORARY. Whenever I am at the Cancer Clinic, and I see patients and their parents who seem to know the staff and other patients, I don't envy them and I don't want to be in their place. I don't want this to be our life. I want to get Elias cured and return to the life we were living before. I want to be able to forget about MRI's and lumbar punctures and central lines. I want this all to be something we look back on, not something we have to deal with every day.
For now, I deal with it every day. For now, I don't have the luxury of forgetting. Maybe some day....