After 5 years, my family and I just did our first vacation in Maine. Packing for a family holiday is always a little bit of an adventure, especially with little ones. Which toys can we negotiate to leave home? What stuffed animals will be missed? How many times must we listen to They Might Be Giants ABC disc as we drive for 6 hours? But it feels like a real logistical challenge when trying to figure out room for all of Sylvie’s equipment—her new stroller/wheelchair, her Tumbleform® chair, her medicine and diapers and special feeding paraphernalia all take up too much room in our family station wagon. (We haven’t dared ventured into the world of family vans yet, though should the girl keep growing and move into a full fledged wheelchair, we may have to visit that consumer quandary sooner rather than later!) And while I wasn’t as distraught as I have been in previous packing escapades, I still can’t help but wish we didn’t have to pack up all of Sylvie’s stuff. I just wish Sylvie could walk and talk and eat like other five year olds—I just wish my daughter didn’t have Krabbes disease. I understand why some parents of kids with special needs don’t leave a 3-mile radius of their homes—it’s just too much hassle and too scary to get out of a routine. I imagine it could be easier to stay sequestered from the stares and questions of strangers when they notice that our daughter drinks from a bottle and eats food we have ground into mush. I suppose if I really thought about it, I’d be nervous if there was a pressing medical emergency while we are away from home, especially given that we stayed on an island off the coast of Maine’s mainland.
But my partner and I keep on taking the more complicated road—in part because we want Sylvie’s twin sister to have adventures, even if her sister can’t always fully participate. We also want to keep living a life that is worth living. We’re not having a “typical” twin experience, but I’ll be damned if that means we’re not going on vacations, visiting with friends, taking hikes and boat rides and enjoying what little pleasures we can afford. This determination was really brought home when we recently met with the pediatric palliative care director at our local hospital, and he was praising us for having arrived fresh from hiking. He has observed too many parents with kids who have serious medical conditions that don’t take care of themselves or their relationships. I’m not saying it’s been a cake walk to find the balance of caring for our children while practicing self-care. But going away on holiday, far from many of our daily reminders of how complicated our life is, really is a necessity for our sanity.
Maine has been a particularly special place for my partner and me to take refuge. The last time we were here, we had yet to discover Sylvie’s illness since she and her sister were only 6 months old. Our Maine vacation before that, I was pregnant with the girls, not yet knowing I was carrying twins. I slept a lot on that holiday, smelling the salt air and enjoying relief from the brutal hot summer of western Massachusetts. We had rented a house for two weeks on the ocean, and invited anyone who could make it to come join us for some or all of the time. We were blissfully eager to become parents, and we celebrated with our friends for the future. I remember one particular hike I took by myself, rubbing my swollen belly as I walked, repeating over and over again to my budding offspring: “You are wanted little one. You are safe. Welcome into this world.” It became a mantra for me as I trekked around the conifers and sweet ferns, but I believed it then and I believe it now. With or without Krabbe, my little ones are wanted and safe and they have been welcomed with open arms to enjoy this life fully. And that includes taking much needed vacations!
When Kirsten isn’t smelling sweet ferns, hiking in Maine or blissing out at the beach, she works as a professor of Communication Studies at the State University of New York and is the mother of 5 ½ -year old twin girls.