Get To / Have To
One of my kids has a terminal disease. The other is the sister. This year’s journey has been tremendous- recovery from a year of countless surgeries, hospital stays, ostomy, stents, staples, and scars. The sister’s journey was that of a watcher: one who has never been allowed to visit, to understand, to stay. The collateral trauma for both will not be known for a while, but it is not to be underestimated, to be swept under the rug. One has missed 108 days of school. The other was diagnosed with anxiety and depression, on her therapist’s calendar for standing bi-monthly meetings. Both have been “canceled” by friends, dropped so fast they don’t have time to make sense of where they went wrong, to mend. The stick that they are measured against is a short one, the lack of compassion heartbreakingly disappointing. No context considered, no allowances made.
They have both had to endure the aftershocks of this diagnosis, and have been expected to function as normal in our frail society.
And yet, we get to march forward as a family in a way we didn’t think we were going to be given. A one-year survival prediction has blossomed into a potential for much more- we get to plan for this, to look beyond today’s problems, to see bigger than all the noise around us.
Rudy was 88 pounds this time last year- pale, scrawny, wearing a chemo pump, and exhausted walking up the stairs. He is now an amazing 106 pounds, has grown four inches, and, (after 14 months) has dropped the pump for 10 pills a day. He rides his bike and plays basketball while on treatment, talks about “getting ripped” this summer and joining a gym, auditions for the drumline, and tries to mend broken friendships.
Clara has exploded into a young woman this year, suddenly sharing my shoes, my makeup, always criticizing my (lack of) style, sense of humor, knowledge of anything... She has learned the therapeutic effect of smashing eggs against trees when she’s frustrated, seeks out friends who accept her flaws and all, and works on learning how to play her new electric guitar. She tries to understand the naiveté that comes with not being the sibling of a kid with cancer, an envious perspective.
We get to be here together and figure this life out. We have to push through what comes our way, disappointments, worry, and all. It is a beautiful, horrible existence, one that balances itself continuously on the edge. And yet- the poppies are in bloom, the orioles have come back to serenade us each afternoon. The beautiful evenings allow us to stay up later, visit with neighbors, shoot hoops, and listen to the spring night noises. Get to/Have to: we hold these in both hands with gratitude and hope.
Photo courtesy of author.
Emily Capece's son, Rudy, was diagnosed at the age of 12 with an ultra-rare form of liver cancer, Fibrolamellar Carcinoma. They are a year into this journey, which has included multiple surgeries and chemotherapy treatments. They live in Shaker Heights, Ohio.