"I am sitting on the front porch swing with my daughter, Alexis. She is almost five years old and sings everything instead of speaking. She is singing a song to me about, "catching a baby bumble bee." She is the most beautiful child I have ever laid eyes on. As I look into her ocean blue eyes and see her blond, straight hair, I wonder how many more moments like these she and I will share? How much time does she have? It brings tears to my eyes.
You can never tell time with a child who has a terminal illness. Of course, they tell me the cure is in her lifetime, but can one ever know? Smoking is a major irritant and pneumonia could mean her death. When we are out together and she sees someone smoking she says, "hey, you shouldn't smoke in here. I have Cystic Fibrosis." I am stunned by her perception.
It amazes me that a child with such energy and zest for life could have inherited something so awful. One time, while visiting the hospital for IV antibiotics, Alexis pushed her own IV pole out into the hallway so we could go to the play room. She was only a year and a half. Again, she brought tears to my eyes.
Sometimes taking care of her is a major chore and other times it's as if she were the healthiest child in the world. Some days I don't even acknowledge the disease. I just go through our daily routine of pancreatic enzymes before each meal and chest physical therapy two to three times a day. Other days however, are very emotional and I wonder when she will have a full understanding of what is occurring. Alexis knows there is something wrong but can't apply it to her medical regime. Maybe it is better that way. I want Alexis growing up without having to worry about what is going to happen to her or to wonder if she will be able to care for herself. I will take on whatever comes along. If I have to die tomorrow to save her from the critical care she will encounter in the future, I will!
Every night we say our prayers together, then I say mine alone. I don't like it when she sees me upset and filled with questions to which only God has the answers. I try to keep my faith and understand that "everything happens for a reason." With each passing day, I inhale another moment with my little girl and only hope that time is good to her."
This essay was written by my mother in 1995 for an English college course as she worked towards her Respiratory Therapy degree.