This essay came to me via a Vacterl support network. I do not know who Candice Lee is, but her essay touched me and my life in ways I cannot yet describe. Oh. . . to be ordinary. It is what I wish for Brody, to be ordinary in his extraordinary ways.
By Candice Lee, copyright 2008
How do you choose the most important day from a lifetime of small miracles? Was it the day I should've died and didn't? The day I stood, the day I walked, despite predictions to the contrary? Graduated from college, married my best friend, or delivered my daughter? Each of these days has lighted my entire life. And yet, the most important day of my life happened in an airport bathroom.
The path to that airport bathroom started three decades before. I was born eight weeks premature in 1971. While it was clear right away that my feet and legs were not quite right, it would be months before my mother received an accurate diagnosis: a rare disorder called sacral agenesis. Despite the normal outward appearance of my back, several vertebrae in my lower spine were missing. The specialists poured out a river of she'll-nevers in front of my mother: she'll never sit, never stand, never walk, she'll never have children. . . have we mentioned she's probably retarded? Fortunately for me, she believed none of it. Instead, she took me home and commenced fighting for my life.
When a series of raging infections ended in the discovery that my bladder did not function, and was not growing with me, the only solution was a rare and radical surgery. At two years old, doctors unhooked my ureters from my bladder and brought them out a small opening they made in my abdomen, called a stoma. From that point, my kidneys would no longer drain into my shriveled bladder, but into a plastic bag on my stomach: a urostomy.
There are many things I could tell you to make the thought of life with a urostomy a little more palatable. That it can feel normal when you can't remember anything else. That technology has made the daily requirements of living with such a thing easier to bear. These things are true, but only partly; acceptance comes and goes from day to day. What is true is that it saved my life. While there was still a long road ahead of me, filled with surgeries and braces and orthopedic interventions of all kinds, my family never again had reason to fear for my life. I arrived at adulthood with stable health, but with visible differences. With one leg slightly shorter than the other, I walked with a limp, my lower legs encased in custom-made plastic braces that slipped inside my shoes. While the urostomy is easily be hidden under anything short of a bikini, it nevertheless required explanation for anyone who became close to me.
The invisible differences, however, were larger.My experiences had left me with two things. The first, a rare jewel of knowledge: certainty that I could take nothing for granted. I could never presume that the gifts many people are born to "health, self-sufficiency, mobility" would always be mine. I came to think of these things as my `ordinary miracles;' each day they belong to me, I cherish. When education, a career, and marriage came my way too, I felt doubly blessed.
But the second thing I was left with was darker: the struggle to accept myself the way I was. I was very different from most people, and a feeling of `otherness,' of alienation, weighed on me. Sometimes it weighed lightly, sometimes heavily, but it was never gone. With so many blessings to count, I couldn't bear to feel sorry for myself over some braces and a urostomy bag, so I polished up the outer-me with a layer of confidence that never quite reached inside. I never shouted "Why ME?!" into the sky from a place of angst or self-pity. But I did whisper it into the dark once in awhile, searching.
Then came the airport bathroom.
For our five-year anniversary, my husband surprised me with a cruise to the Bahamas. We missed a flight on the way, and literally missed the boat. We spent the night in a Florida airport, awaiting the plane that would take us to the ship's first port of call.
Early that morning I went into the ladies' room for a last rest stop before boarding the plane. I passed by a tired-looking young mother who was placing her toddler on a changing table. She peeked at my braces, then at my face. This is not an unusual experience for me - I often draw second glances - so I smiled at her and continued on my way. By the time I exited the stall, the mother had undressed her young son. To my surprise, I saw the mom was changing, not a diaper, but a urostomy bag. I tried to explain our common bond, but it became clear that the boy's mother spoke little English. When I found I lacked the words to reach her in my pidgin Spanish, I finally just gestured at her little boy, and then lifted my shirt to show her the pouch at my waistline.
"Same!" I smiled.
"Oh!" Her hands flew to her mouth, and the emotions I saw play across her face were complex. As she dressed the boy and we returned to the waiting area, we talked in our broken fashion, and she made it plain she had thought the boy's condition serious enough that she hadn't expected a typical life for him. Her eyes traveled over my clothing, my luggage, my husband, and returned to my face. She seemed to find something there that gave her hope. "But you. . ." she said, tears springing to her eyes, "you so . . . pretty!" She was grasping for a different word. The one I supplied in my head was ordinary. She saw in me . . . weary, rumpled, surrounded by the detritus of travel - all those ordinary miracles that become so luminous when you can't take them for granted. She gently touched my cheek, then looked at her son. Was she seeing these miracles for him now?We hugged and parted.
As they walked away, I felt the beginnings of a subtle shift in the weight of that otherness I carried. I had always looked at my differences as accidents; what if, instead of accidental, I was carefully, intentionally crafted? What if it wasn't my differences that were creating my grief, but my stubborn insistence that somehow, it ought to have been otherwise? Why me? A better question might be, why NOT me? My feelings of alienation, my struggle with acceptance, did not dissolve instantly. But each year they've grown lighter. In that brief encounter, the little boy and his mother showed me that the energy I was wasting carrying around heavy feelings could be better used in service to others. While my experiences differed from the mainstream, I still shared a common bond with everyone else on the planet - it was up to me to find meaning in them. In the time since, I've sought out others like myself, and I have made my career out of helping people with disabilities to live better lives. The little boy from the airport would be about eleven years old now.
I hope his life is ordinary.