When I was 20 years old, I started my journey with chronic illness. At that young age, I didn’t really have the foresight to see how much my life would change, or that it would affect the lives of my future family as well. I was too busy in school, too wrapped up in starting adulthood, to think about motherhood.
For most children, their world is somewhat defined by their parents. We buy their food, so it determines what they may eat. We choose their schools and their chores. We introduce them to new activities and places. We take them on outings, errands, and visits or decide it’s a curl-up-in-bed day at home.
This is true of my family, and especially of me. Somewhere along the line it became my life’s work to create a warm, happy, beautiful life for my kids.
But I’m limited.
When I was 20 years old, I had boundless energy. I passionately hated staying home. To me, it was an utter waste of a day. In rainy Vancouver, the sin of staying at home was magnified on any sunny day. I was involved in singing, acting, and volunteering. I had a part time job and was graduating from university with first class standing. While I was generally happy, I could also be moody, temperamental and judgmental.
Twenty years later, my illness bestowed some unexpected gifts upon me, that I have been able to share with my children. Compassion. Empathy. Perspective. Patience. Introspection. But it also poses challenges, not only for me, but for them as well. This new person that formed from illness is a better person, and a loving mother, but I have no energy on most days. I deal with pain on a daily basis and I’m often at home, because I have physical limits I must honor. As my illness progresses, the less I am able to do.
Thus the lives of my children are different than what I would hope for them. I wish I could take them on more fun outings like I used to. We’d spend a day at the Aquarium and then hang out at the beach afterwards before making our way home. We’d walk to Science World and spend the day there before taking the train back. We’d take the seabus to the North Shore and wander around downtown for a few hours We’d go to the pumpkin patch and find the biggest pumpkins, go through the corn maze, and pet the baby animals.
These days, I still make plans to take them places, but I don’t tell them, in case my medical situation changes. If I have to cancel a trip to the pumpkin patch, I don’t want them to spend a week in anticipation, only to be disappointed at a last minute cancellation. We’re spending more and more time at home. My collection of wasted days grows larger and larger.
They have more chores than I would like them to do. I know they’re really responsible kids, and I firmly believe in giving children chores, but I also want them to play, have more spare time, and have more fun. We’re only kids once, and I want to spend more time making memories for them, instead watching them doing dishes and cleaning floors while I’m recovering from an energy-sapping day at work.
My kids don’t really know any different. They have lived this reality their whole lives, and the degenerative changes has been so slow that they haven’t really noticed too much. But I know. I know who I could have been for them. I could have been the mom that gets up at dawn and does a million things in a day with them and for them. I could have been the mom that shuttles them from appointments and activities to play dates. I have this alternate reality in my head that is the life I wish I could give them.
But as a mother, my middle name is guilt. I think it’s built in to the mom-gene. If I didn’t feel guilty about my illness, I suppose I would feel guilty about something else. I must let go of the vision I had and embrace the life I’ve been given. We don’t get out of the house as much, but our home is filled with love, hugs, and laughter. It may just take a little longer to convince myself to let go of my expectations but that’s all we really need.