See The Sky (About To Rain)
She sings Disney; my daughter of five years old, to her brother of nearly ten months. It's something she heard in the Tarzan movie and I'm not even certain she has all the words right, but she sings each time he cries and each time she sings, his crying stops.
He is dying; fighting tooth and nail to turn death away as I sit with him in my lap wondering why he was even born. There were complications during the pregnancy. There was a month long stay in the NIC Unit of Manatee Memorial Hospital. Lennon Matthew, beating impossible odds; grabbing fate in his tiny little hands and tossing it to the ground.
"There are calcium deposits in several regions of his brain," they told me. "There's a 99 percent chance that he has severe Cerebral Palsy. He is in complete bone marrow failure."
How can so many things go wrong in so little time and why is it no one knows why?
I don't even know that it matters anymore. Death is a very simple fact of life. It's the one common thread running through all of humanity. My son didn't do anything to deserve this. It certainly isn't something one would ask for. It just is. It's just a part of life. Of course, that's not so easy to explain to his five year old sister and his three year old brother.
And so, I try to turn our focus on the random acts of kindness that have besieged this family. The strangers from Easter Seals Project Rainbow, that have come to the house, offering help; assistance; sometimes, just the quiet comfort of companionship, for my wife and our children. The doctors at All Children's Hospital in St. Pete, who fought furiously against all the things we pray, can never go wrong for our children, but were forced to surrender to the hard, cold facts that nothing was doing any good.
The nurses of the NIC Unit in Manatee Memorial Hospital; the staff of Doctor's Giangreco and Scarrano. The multitude of people affiliated with Hospice of Southwest Florida. Brown and Sons Funeral Home, located in Bradenton, FL. There has been so much kindness; such an out pouring of love.
In the end, it's only the love that matters. Loving your children. Loving one another. We shift so many of our priorities in the name of love that we don't really make the time to love, at all. Shouldn't today matter if tomorrow never knows?
I'm sitting on the bed, now. Watching. Waiting. Holding his tiny
little hands in mine. The nurse has turned off the oxygen machine.
Disney, she sings, but I hear Neil Young: