Shannon Ford was born February 12, 1989. Like my brother before her, she was born with a vicious disease called Neonatal adrenoleukodystrophy (NALD). That is a mouthful of a name for a rare and hostile gene-related disease. Essentially, being born with Neonatal adrenoleukodystrophy means that even while one part of your body is trying to build itself, other parts are actively trying to tear it down. My brother and sister quickly became deaf, blind, and lame (meaning unable to walk) within the first few months of life, communicating only with small bits of sign language, simple touches, and short verbal cues thereafter. Shannon died when she was four, just one month shy of my own third birthday.
She was born literally sticking her tongue out at the world, as if to say "Neener-neener! Here I come!" and she continued to live her life that way. She was always a mischievous little one with a heart of gold. Although I was very little when she died, I still remember her quite well. She loved Nutter Butter cookies and lollies, laying her head on the piano and banging on the keys, and cuddling. She and my brother had a sixth sense to know who had entered the room, and even though they couldn't see or hear they always turned their attention toward you and waited for you to come say hello.
I learned powerful lessons from the lives of my siblings, and even though they have both died now I continue to learn from them as I look back over the years. Shannon taught me that most subjects of conversation are nothing but wasted wind passing over idle lips. It's not what you talk about with people that's important; it's being close to them, it's compassion. She taught me the meaning of contentment and exploration. She taught me how to be patient with people who don't understand what you need or want. She taught me most importantly how to love.
The world we live in focuses endlessly on money, instant gratification and self-aggrandizement, which shows just how stupid the human race really is. For all our supposed intelligence most of us can't figure out that spending time engaged in the lives of our families and friends is vastly more important than the size of our paycheck. People who gripe about the size of their TV or the horsepower of their car or the lack of spare square-footage in their home need to wake up. Humans have lived for thousands of years without those things, and most of them still do. It's learning how to interact personally and intimately with each other that's important. TV won't take away loneliness, cleaning a huge house won't help you cope with heartache, a car won't lift your spirits after a hard day a work; but a hug will, a kiss will, even a simple conversation can.
A good friend of mine has always put it very simply, "People are more important than things." The statement is so true. I learned it daily during my childhood, and it's something I'll never be able to forget. Take away a person's sight and hearing and most of the things we humans place so much greed upon suddenly lose all their value. Maybe that's what we need--to be reawakened to what matters most. Whatever the course, one thing will remain certain for me: I believe in angels, because I lived with them. Did they have wings and trail sparkles as they hurried about? No, they were crippled and physically diminished. But within the withered bodies were souls of intelligence that taught me lessons I will never forget.
Happy birthday, Shannon. I love you. And thanks for everything.
.Neonatal - Adrenaleukodystrophy
Neonatal - Adrenaleukodystrophy
Neonatal - Adrenaleukodystrophy
Neonatal - Adrenaleukodystrophy
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