When I tucked him into bed the night before he passed away, I never dreamed it would be the last time. Although he was miserable with chicken pox and pneumonia, I didnt even allow myself to consider the possibility that Levin would die.
From an outsiders perspective, this seems like extreme naiveté or outright denial, because Levin was a very sick little boy. He was HIV positive and even the slightest illness threatened his weak immune system. Realistically, his chances werent good. But during the past year, I have watched Levin and several of our other HIV positive kids defy their realities.
Last fall, death seemed so imminent for one of our six-year old boys that family members sat vigil by his bedside and our carpentry shop had already made his coffin. But he somehow fought his way back and is now playing soccer and laughing with his friends Another 10-year old little girl with HIV contracted a deadly Herpes virus on her leg. I remember choking back tears as I watched her sleep in the clinic, fearing for her life. But she, too, proved stronger than the virus.
And Levin. Our beautiful Levin. His body was tiny and frail, much too small for a four-year-old boy, but his spirit was larger than life. He toddled around with cotton stuffed in his ears, plagued by constant infections. His breathing was often labored and irregular. But Levin always wore a wide toothless grin or a look of sheer determination on his face. He would not be defined by his illness.
We watched him overcome all of the obstacles life threw at him one by one. First, learning to walk - finally at the age of three. Then slowly starting to talk. He blew us all away one night when he said "I love you" out of the blue and in perfect English. His successes were all of ours.
But the disease had bettered tiny Levin to the point where he couldnt fight anymore. He died Saturday, January 20, in his bed, surrounded by people who loved him. He touched us. He loved us. He inspired us. His death leaves a gaping wound in our hearts, and forces us to come to grips with the cruel truth. We have ten other HIV positive children living with us at Rancho Santa Fe. No matter how much we love them or how hard they fight, all of them, eventually, are going to die.
Modern science has come up with amazing antiretroviral drugs that can prolong and greatly improve the lives of HIV patients. But the medicines are expensive, at least $8,500 a year per child. Half of our children are currently on the treatment, but NPH cannot afford to help the rest. Levin was not one of the lucky ones.
It is never easy to say goodbye to someone you love. And when that person is a child, the hurt, the physical ache of losing them is that much more difficult. We are shattered by Levins death, but blessed with the many gifts he gave us during his short life.