When J. was an infant, on dialysis, receiving daily intensive Early Intervention services, our family lived what we now call the "refugee years". My husband and I took turns sleeping on a recliner in J's bedroom to monitor all her medical equipment (dialysis machine, feeding pump, and assorted positioning pillows). On a good night, we'd each get about 3 hours of sleep in between alarms. Her brother and sister, then ages 4 and 6, slept on mattresses on the floor of the 2nd bedroom. We were sleep-deprived, frightened, and coping with untold levels of stress. At the time, of course, I thought we were coping well. The older children made it to school every day, dressed and with at least most of their school supplies in a backpack. Dinner was on the table at night -- mostly pasta, or pancakes, but dinner nonetheless. We even made it to the library for story hour once in a while. But one day, I took out the pictures from that time, and I saw my son's face staring out at me. It was Christmas morning, and he was standing by a brand-new bike. What struck me first was his smile -- a tremulous, tentative smile, that looked like it could just as quickly turn to tears. It was his eyes, though, that led me to dub that time the "refugee years". His eyes were full of sorrow, a boy trying so hard to believe in the magic of a new bike under the Christmas tree, while struggling to understand why his baby sister was spending *her* Christmas in ICU. He looked, truly, like a child who'd lost all he'd known -- and in many ways, he had.
Lately, as J's illnesses and hospitalizations have accumulated in both duration and intensity, I've been thinking a lot about those "refugee years". We're all certainly older, wiser, and more experienced now. We've developed strategies to cope with tough times -- family movie nights when J. is too sick to go out, Sunday football while her treatments run -- and we've developed an irreverent, unique sense of humor about the situation. And yet, despite all that, there are days that I see that look on a face, the look that says, "I'm lost, and I don't know what to do". Sometimes I see it on my daughter's face, the anxiety when she sees me grab the thermometer, or hears parts of a conversation with a doctor. Sometimes, I see it on my son's face, when he wants to read to J., but she says, "I'm sorry, I'm too tired today." And sometimes, I see it on my own face, in the mirror, when I put on the make-up to hide the evidence of another sleepless night.
We're no longer refugees, forced to flee the "Land of Normal" with our meager resources. We're stronger now, and we've built a life and a home on this, the Other Side of Normal. I'm proud of that, proud of what we've all faced and fought, proud of what we've learned. And yet, we've come to realize that it's never a good idea to get too comfortable in your spot on the Other Side of Normal either…because just when you think you're all settled down, change comes along and forces you to move just a little further past your safety zone.
