Twenty six years ago, my youngest son, Kaegan, was born very prematurely. He wasn’t expected to live. The list of disabilities lengthened, as did his stay in NICU and PICU. Of course I took it personally. I must have done something atrociously wrong to have this visited on my baby, on myself.
Hospice helped bring him home. It was the Hospice nurse who told me: “This is not a punishment. Death is a natural part of life.”
It was an incredible relief, this notion that we were simply in the flow of life, that we had done nothing wrong to deserve this. That death is as natural as birth, regardless of the circumstances of either.
Kaegan was not supposed to see his first birthday. He did, and more. Throughout our life together, I had opportunities to learn many things I don’t believe I would have without him. That there is something larger than each of us, and that it connects us. That we each have disabilities, and challenges- our own customized opportunities to learn how to be our better selves. That what we label as tragic, and devastating, are not punishments but silver lining lessons waiting to be seen.
One of my favorite authors, Anne Lamott, put it pithily: “We’re not so special. That’s the good and bad news.”
In 1975, IDEA was first signed into law. Within, it states:
“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational main stream of American society.”
Just as I had learned death was not a punishment, over the years of watching Kaegan, learning from his joy to simply be, I also began to learn what Anne Lamott, and the DD Assistance and Bill of Rights Act meant.
Kaegan passed- or Graduated, as I like to call it- March of last year. He is no longer obligated to struggle with the lessons of this life. But he continues to teach, myself and others who remember him. We are continuing to learn that disabilities, and death, are natural. And happen to everyone.
When we stop seeing ourselves as special in these, we can begin to see, and enjoy, the gifts that life, and disability, offer.