Social distancing, being on lockdown with your family, hand washing and isolation are all life altering changes we’ve had to make this week. For most humans, this is a big deal. For cancer families, this behavior is painfully normal.

During the two years my son Louie lived with cancer, we adhered to all of these standards. He endured radiation on two different occasions and chemotherapy throughout. It seems caustic to ever use the word lucky, but Louie avoided additional illness. We were persistent about cleanliness and
handwashing. Spending so much time in hospitals we incorporated techniques to evade infection. They have become a part of our life.

During those two years, we were essentially on lockdown. By nature of cancer, you are socially distanced, isolated. People reach out initially with love and intent. It erodes. We waded through the days. Everyday revolved around appointments and meals, movies and games. Passing the time became remarkably easy. Organizing a closet. Bopping a balloon. Building a Lego set. Sifting through Instagram. Reading Harry Potter for the 30th time. Online quizzes. Naps. Watching trick-or-treaters from his bedroom window. A walk. A song on the piano. Dairy Queen. The cat. Maybe school work, if the energy was there and the desire. Slugging along, feigning positivity and hope until I truly believed it. Being home again, all day in the house, reminds me of that era with Louie. He endlessly wandered about, very few connecting with him from the outside world, his previous life. Whenever I felt sad I said to myself “Louie’s here now, he’s alive”. The full weight of his sadness in reflection, is too heavy, with nowhere to land.

Louie was in the hospital for the last 38 days of his life. Communicating only through hand squeezes. I left his room only to go three doors down for tea. We sat together for 38 days. Again, wading through the
days. He was there, he was alive. I only needed that to keep breathing.

August 22nd, the day we reluctantly left the hospital. Walking out of the office of the cemetery and down 5 stairs, my knees ached. I will never forget that odd, physical feeling of pain, jolting me briefly from a trance that I am consequently still in.

The most difficult posts to read are those complaining about the sudden togetherness with your children. For one moment, please think of those of us who have lost ours. I can tell you despite the uncertainty, the time will always be worth it.