My Son’s Short Life Prepared Me for This
Michael’s Garden
The weather’s getting nicer in Minnesota and I am starting to spend more time outdoors in this garden. COVID-19 keeps me close to home, as the paths near my house are often crowded with folks who are also enjoying the warmer weather. After my 7 year old son, Michael, died in 2006, friends and family made bricks in his honor and planted them in the backyard garden. This is what I see when I need to escape daily pressures and reconnect with what matters.
This pandemic has brought up many tender feelings of grief and loss. I fear for the health and survival of my family. My firsthand experience of death colors this novel and unpredictable disease. I am grateful to have my two remaining children at home and I am anxious for them. The nature of their life after this COVID outbreak remains much up in the air. Like Joan Didion, I am no stranger to unexpected catastrophe.
Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends.
-The Year of Magical Thinking
When Michael was born, our lives were uprooted. Due to complications at birth, Michael was born with cerebral palsy. It took us a while to understand what this would mean for all of us.
Attuning to a baby’s needs is a full-time job for any new parent. Michael had a very difficult time staying comfortable in a body whose muscles were in continuous rebellion with his brain. His muscle tone and reflexes were unpredictable, which prevented him from being able to roll over, sit up, crawl, or stand by himself. Seizures robbed Michael of sleep and made eating extremely difficult for him. He cried most waking hours for the first year of his life.
It was hard trying to wrap our minds around what we could do to make life easier for Michael. I spent entire days in one or two rooms of my house feeding, changing, singing, bouncing, talking, reading, and listening to Michael. My husband made up a bunch of fun songs to help with Michael’s daily stretching routine and I learned how to feed him while bouncing him on one knee, holding the bottle and a bell he liked with one hand and forming a seal around his mouth with the other so he could eat. We got help from doctors, physical, occupational, and speech therapists, early childhood educators, and personal care attendants. We read scientific literature on cerebral palsy and seizures, went to medical appointments constantly, and bought all kinds of adaptive equipment for our house. Of course, we were overwhelmed, distraught, angry, tired, impatient, and scared. But we loved this little human being with all our hearts and wanted to figure out how to make him happy, comfortable, and to provide him with everything necessary to thrive.
Meanwhile, Michael taught us how to be better versions of ourselves. We had to be fully present with him to understand his needs. We learned to play and communicate in new and creative ways. In the hour it took to feed Michael each meal, we chatted with him, with each other, and with his wonderful personal care attendants. Michael learned a lot about the world from these conversations and by watching “Meet the Press” every Sunday morning with his father during his long breakfast.
We didn’t know what the future would bring. Medical professionals gave us data, predictions, and their advice. There were more unknowns than knowns. We did what we could in the moment to adapt.
Helping Michael navigate the world challenged us to slow down, be patient, learn new things, and become fierce advocates. We re-entered life with a whole new arsenal of skills, understanding, and the experience of one of the most rewarding relationships a person can have.
Nothing prepared us for Michael’s death, but his life prepared us for living in the world of possibility.
