As summer approaches, I’ve been thinking about hobbies. My academic year ends next week, and while I have a number of writing projects to work on and grand plans to play with my daughters as the weather gets warmer, I don’t have any specific relaxing diversions on the horizons. I’d like to have more pastimes other than fretting over my daughter’s health and her twin sister’s well-being. I keep holding the possibility that my sweetie and I can create more fun and leisure in our lives and try to move beyond the mere survival mode in which we seem to so frequently reside.
I have lots of friends, and my friends have lots of hobbies: collecting Pez dispensers, making art from old license plates, paragliding, canoeing, gardening, wood working, biking, backcountry skiing, traveling to far away places. I get great pleasure from my friends’ hobbies as they share their tales with me. I don’t feel as if I have any true hobbies. I’m thinking of the type of hobbies that transport oneself into another realm of reality—the immersion into a mystery novel or an art project or the pursuit of the rare nesting bird where one’s immediate needs are somehow transcended. As parents with a child with a serious disability/illness, having a hobby feels like a far away luxury.
The last two weeks our family has had to deal with a very sneezy, wheezy little Sylvie. Given the condition of Sylvie’s muscular structure and the fragility of her lungs, any little cold has the potential to take on monumental proportions. She seems to be recovering—this time. Yet most likely, it will be some type of respiratory infection that will eventually be her demise.
In addition to contemplating what hobbies I would most like to take up, I’ve also been thinking about psychologist Abraham Maslow. Maslow was interested in what motivates people and how we live within a hierarchy of needs. Many social scientists, at one point or another, return to Maslow’s work as a way to understand human behavior. Basically Maslow has argued that until one’s basic needs are met (e.g. physiological and safety needs), the “higher order” needs of love, affection, belonging and self-actualization are not able to be fully satisfied. As parents of a child who cannot feed or change herself, we are often dealing with the very basic requirements of nutrition, excrement, and oxygen. Additionally, worrying about finding care providers who can handle Sylvie’s basic needs and assure us that she is free from harm is a very real concern for us—thus limiting how far we venture on a date or a hike or a bike ride without her. My sweetie and I try hard to make a safe family environment where our daughters feel secure and nurtured, but there is little time for us to work on self-actualization or have any hobbies. I know I am not alone in my limited time or lack of solitude—most parents of young children I know struggle with this. In fact, many people in large parts of the world struggle to move beyond mere survival mode. But still, I’m hankering for some good hobby so I can rejuvenate myself.
There are some hobbies I could do without. I recently came upon the Facebook page of a high profile mom who listed as some of her personal interests as “hugging handicapped/special needs children - and their parents.” This “hobby” has a high ICK factor for me—I don’t want me or my daughter or any other kid who is living with a disability to be a leisure pursuit for anyone. And I sure don’t want this woman’s hugs simply because my kid’s biochemistry is all messed up! However well intentioned this mother may be, it just seemed creepy that those of us who deal with physical/cognitive disabilities would be a source of charitable amusement for someone. Yuck! I think I’ll pursue some other hobby like restructuring my backyard, or cultivating a flower bed, or hiking more mountains thank you very much!
Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 4-year old twin girls. She is eager to hear about your favorite hobbies, so long as they don’t include knitting or pitying her daughter or her family.