People do this all the time: they neglect to ask about my daughter Sophie. They don’t mean to, especially when they receive so many updates about her brother Jacob’s health and our efforts to find a cure for CF. But they do. They ask about him and only him. How’s his health? How’s he doing in school? Does he have a lot of friends? What are his hobbies? They are genuinely concerned about his well-being and we really appreciate it. In each of these conversations, I always… ALWAYS make a point to tell people that both of my children are doing great. That Sophie is doing awesome in school and is one of the tops in her class, that she excels at the piano, and that she’s still the most empathetic little girl (sorry, tween) that you’ll ever meet. I don’t want anyone to forget that we have two children and that both of them are affected by cystic fibrosis. Jacob lives with the disease physically; Sophie lives with it just as much emotionally.
Sophie is a special girl. Each year, as the Great Strides walk approaches, a heaviness settles on my chest: sadness and reflection on the disease. Like any parent, my fear and worry battles the hope and optimism, and often wears down on my soul. I call this experience ”the elephant,” and it at this time each year, the elephant likes to rest a foot on my heart, pressing down harder and harder until Great Strides has passed and I — we — can all breathe a little easier, until we begin the process all over again.
This past week, as I’ve moved through our house in a bit of a daze, Sophie has been the one to ask me how I’m feeling. ”Are you okay? Because you look sad or something.” ”I’m fine,” I lie.
Who is this 11-year-old that can sense what I’m feeling and has the confidence to ask about it? I know I wasn’t that way at her age. But she’s always been able to sense my mood changes; she’s always known when to take my hand or give me a hug out of the blue just when I needed her to.
In 2003, Jacob was admitted to Children’s Hospital of Los Angeles (CHLA) and Julie stayed with him during his stay at the hospital. CHLA is about an hour from our house, which meant that Sophie and I could only see her mom and brother at the end of the day and on the weekend. To be blunt, it sucked. It was especially hard on Sophie, who was only four at the time. She missed them greatly and stuck with me as I struggled to keep my emotions in check (and not nearly as successfully as I wanted to). During the weekend, Julie and Sophie went to see Finding Nemo by themselves while I hung out with Jake at the hospital. I believe this was one of the first instances in which we decided we would set aside time for Sophie so that she didn’t feel excluded, so that she didn’t feel that he brother received all of the attention.
The film is about a father clownfish, a widower, named Marlin (superbly voiced by Albert Brooks) who is so protective of his son Nemo that he inhibits the child from growing up. Nemo is snatched by a human and taken away to Australia. Marlin goes on a quest to save his son, a journey that takes him across the ocean. Along the way he meets many wonderful characters and gains a new best friend in Dory, voiced by Ellen DeGeneres. I sometimes quote Dory’s motto when the world seems to be bearing down: Just keep swimming, just keep swimming. I was deeply moved by the film back then, and each time I revisit Finding Nemo, I can never avoid crying. I think of my children; then Thomas Newman’s elegiac theme plays; and then tears well up in my eyes. I always fight to keep from becoming a blubbering mess in front of the entire family (some kind of Midwest ”real men don’t cry” bullshit that gets harder to shake each year).
It always seems to be Sophie who looks up and asks if I’m crying; it always sees to be Sophie who snuggles up to me and gives me a good squeeze to comfort me.
I don’t know exactly how much Sophie understands about cystic fibrosis; she’s very bright and her reading comprehension is stellar. I do know that she realizes that without his medicines her brother, someone she loves dearly, will get very sick. She is so giving and so accommodating — I worry about all those greetings and inquiries from people and the amount of interest in her brother. I don’t want her to think that’s she’s not as special or as important.
I’m not sure I tell her how much I love her; I’m not sure I tell her how much she inspires me to be a better dad. Like Marlin would do for Nemo, I would swim across the world for her. Until that day comes, I will continue to make sure that everyone knows that my daughter is awesome — thank you for asking.