Perspective, Priorities, Strength and Real Beauty
Posted on April 7, 2012
His birthday. Candles, seventeen of them, white and black stripes and black with white polka-dots, stood tall on the cake the kids decorated. It is a family tradition that the kids decorate their own cake, with the help of their siblings. The Birthday Child has full artistic control. In this case it was Ben.
Four years and some months ago I sincerely wondered if we would see this day. His rheumatologist and nephrologist visited our semi-private room on the seventh floor of the Medical University of South Carolina in Charleston. What seemed as many as 15 or so residents and nurses gathered just inside the door, to learn how to deliver unacceptable news, in the case of the young doctors, and to lend support, in the case of the nurses, as one of the two doctors rendered the news that crumbled our world. Our son was not expected to do well. He was given a few years if radical treatments were not initiated now. Residents’ coats and scrubs stood in a seemingly endless group just inside the door. Wide eyes full of sympathy and maybe empathy, a sea of white and teal, stared from the other patient’s side of the room to see the reaction that followed the words. It was as if I went inside myself. I was living something shocking, surreal and horrifying from deep within my head. It was the opposite of an “out-of-body” experience. I was peering out from a cave. The feeling was akin to nightmares, one in particular. I am smothering under sheets that are piled heavy upon my form. I pull them from my face only to find more. It seems never-ending.
Ben was diagnosed with lupus nephritis at an extremely late stage. As the physician spoke, my eyes became tear-filled and I worked hard at not revealing them to my son. The pressure built in my eyes and head as I tried to shake them away, tried to quickly not believe what I was hearing. At twelve, my son did not understand the gravity of what the large man in the motorized wheel chair had to say. I was jumping from disbelief to shock and back again. As a tears rolled down my cheek, I saw one nurse pass a box of tissues to another, and so on it was moved around the room. I felt anger at first that they would draw attention to my tears. When it did, in genuine kindness, pass to my hands, I rubbed Ben’s head and said, “Do you have a runny nose?” It took so much to speak without a crack in my voice. (I am still not sure that I accomplished such.) As he turned to answer me in an amazingly calm voice, I looked away and made a few gestures to divert his attention from my eyes.
We hear of the before and after. We hear of moments in people’s lives when their life takes on a dramatically different meaning, purpose. The entire perspective from which they move through daily life has changed, so as to live from another point of reference. This was that moment for me. Incredible how a few words strung together in a particular pattern shift one’s entire point of view, about everything. Priorities shift. Even though I believed mine to have been in appropriate order, some aspects of my life took on a much smaller presence, and less importance.
Reality stared me straight in the face. It stared harshly and beautifully at once. I actually did see a bit of beauty in this moment and have seen it in Ben every moment since he moved to the hospital for a nearly six month stay. My son never seemed so perfect. With his body hurting, with it failing to keep him physically strong, I saw an incredibly beautiful strength in him. From that afternoon to the present day Ben has withstood innumerable blood draws, central lines and biopsies. This kid with the “take it all in stride” attitude has spent hours in dialysis, in pediatric ICU’s. He has endured eight rounds of chemotherapy with all the included nausea and stomach turbulence. He lost every bit of his hair due to the medicines that gave him a second chance at life. He has lived with extreme edema and seizures. He has learned to walk again after tremendous weakness rendered him unable to do so, at all. I have witnessed the incredible beauty of his endurance and of his faith that he would again behave as other boys.
Birthdays are a different sort of celebration now. This day, with a cake exploding in creative color, celebrates his life, his strength and his second chances. As he blows out the candles representing the years he has lived, there is one flame to me that is more beautiful than any other. This candle, with black and white stripes, is the one that stands for the year he has just lived. It also marks the beginning of a new year in which to live, love and learn with beautiful strength and priorities in place, for Ben and for his family.