I’ve been keeping journals for my son since he was born. I’m on my eighth one at the moment. When he was a baby and toddler, I wrote religiously every day. I recorded milestones, funny stories, family stories. You know, the normal stuff new moms get excited about. I recorded his first steps, his first words, his first solid foods. A variable textbook of normal baby milestones.
But then the lupus I have, which got worse after having my son, became more critical and I started to think of death. The journals changed. I wrote about my parents and my brother; how I grew up in an abusive home. How my mom and dad died. About my lupus and how it affects my body and mind. I started making a list of songs I wanted to download onto a CD for him. Then it became a list of songs I want at my funeral. We talk openly about death and dying; my son has seen me in a coma. He was the one who found me in bed, one Saturday morning, unresponsive and called his dad to come up and try to wake me up. He couldn’t either. I went on to be comatose for eight days and one of the only faces I remember was my son’s. He was a brave little kid. But that year, he missed twenty-one days of school, mostly during the fall. Last year, I was also found unconscious, in respiratory failure. I was only comatose for four days this time, but the same thing happened with my son—he missed twenty-three days of school. It was only this year that he finally admitted he faked being sick to stay home to watch over me while my husband worked. I had to assure him I would be fine and also had to push him out of the door a few times when he complained of a stomachache.
Lately, we’ve talked about death and dying. He asked what I would die from. I told him quite bluntly that my lungs would fail because the lupus was in my lungs. I also told him my kidneys might fail. He asked, with a scared look on his face, whether he could get lupus. I told him, since he was a boy, his chances were better than a girl’s, but that he did have an increased chance of developing the disease because not only do I have it, his paternal grandmother had it, too. He accepted it with a nod and a change of subject.
I never was sure how to handle his questions about my health. He knew at an early age that I was different from other moms—I couldn’t go to the beach as long, I couldn’t stand in line at Disney World for the rides. He went to a lot of doctors’ offices with me. He knew which ones had the fun stuff to do while I was in with the doctor. He was the mascot of the lupus forum I actively belonged to for the first five years of his life. I wrote a lot about it in his journals, figuring he’d read about it after I died. I tried to keep up with him, but I missed a lot of school functions and play dates. I had a wonderful friend in Florida whose son was six months younger than Conor. She would call and offer to bring Conor over to her house since she had a pool, or take the boys to the beach. I owe her so many play dates; her son could live with us for a year and it still wouldn’t make up for all she did for me.
Now that he’s ten, my journal entries have slowed down. I write about holidays and birthdays, his excitement on going to Space Camp this August, his outings at school. He’s a straight-A student and that gets documented. I cut out articles and words of wisdom I find in magazines and newspapers. We go on weekend trips from time to time and they get recorded as well. But at ten, it’s mostly video games and basketball and soccer. I got a keyboard for Mother’s Day, a beautiful, eighty-eight keyboard that sounds like a grand piano. He’s itching to learn to play it, but I have to get back to where I was when I took lessons for eight years as a kid. I’m hoping over the summer he can learn enough to take formal lessons in the fall.
