For all my Christian friends....deal with it and take what I'm writing in 'context'. Thank you.
I've been thinking a lot about my daughter that passed away in 1999. She's been on my mind lately and I kind of hope it means that maybe I'll get to see her soon. Ever since my heart surgery I've been living on borrowed time, anyway...and even though each day here is a blessing, it isn't the greatest one.
I've been remembering the day I saw her in the hospital. I wasn't allowed to be in the operating room when she was born, but saw her an hour later. It was one of the most ghastly sights I've ever seen. Her little body was wracked and twisted from Spina Bifida. A large hole was in her tiny back, exposing the spine and internal organs. Her head was twice the size of her body due to hydrocephelus. She had club feet and her legs were dislocated at the hip. It's a picture in my mind that I can't get rid of, and I saw this in 1982.
The doctor told me that she would be paralyzed for life. She told me that my daughter would always be in a vegetative state and that she would never be able to see anything. I was told, basically, that my baby would never know me...never love me...never know she was loved...wouldn't be there to run into my arms and greet me when I came home from work...nothing that normal parents get to enjoy. Nothing.
After a two and a half month stay in the hospital, they told us they were letting her come home with us to die. They said she wouldn't live another month. Her brain was being rended by seizures, sometimes as many as two dozen a day. Her respiration would cease and she would turn blue and her heart rate would fall to ten beats a minute. We thought she would die every time. Can you understand what it would be like to think your child was going to die at least once an hour during the day. It's nerve wracking and mind numbing and your fingers shake so badly you can't hold a cup of coffee.
Yet, she always came back. And she lived another day. And then another and then another and then another. At seven months she smiled for the first time. A week later, she started to see. We had done nothing, medically, for this to happen.
As if this wasn't enough, I was laid off my job and we had to move close to my parents in a rent free home they had. Lulu, as we called her (real name was Lou Ann), was two years old. I would play a game with her because it made her smile. I would make a buzzing sound and zoom in with my thumb and forefinger and grab her nose. As I grabbed it, I would say, "Got your nose!". And, of course, I would do it again and again until she tired of it. One day, as we were playing this game, I swooped in and grabbed her nose. But, before I could say the phrase, she smiled and said...'Got.'
And, that was her first word. Got. She said a word, and she associated that word with what was happening. It was the first time she exhibited any kind of reasoning skills as well as forming any ability or inclination to speak. It was the most precious word I ever heard.
One day, I truly believe, we shall meet on that beautiful shore. Instead of rolling up to me in a wheelchair to greet me as I come home from work...she will run to greet me, with that beautiful smile on that beautiful face. My dream is that she will embrace me and say only one thing. My dream is that she will hold on to me for dear life...and say 'Got.' What a glorious day...that will be.
I miss her.