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A nurse stayed in the room with me but that seemed right- she was new you know, and this was my first baby and that is probably what they do.... Eight thirty was the next time I should get to see her but the time came and went and my baby didn't. The nurse explained it to me though. A baby in the nursery was having some problems so they were late getting the other babies out.
That seemed right-they were new you know, and this was my first baby and that is probably what they do....only she forgot to tell me it was my baby and that they were making arrangements to send her to another hospital for surgery for a bowel obstruction. They brought her to me at midnight to say goodbye and then they handed her to her Daddy to take to Egleston Hospital. Oh yeah-they gave him directions to the hospital and a bulb syringe in case she choked on the way over there.
A team of surgeons was waiting for her and he would let me know how she was when the surgery was over. At six o'clock the next morning, when he came back he didn't have to say anything. I could tell by the look on his face that it was serious. When he told me that they had removed a third of her intestines and were putting in a hyper alimentation tube that morning, I had no clue what we were in for. The words Cystic Fibrosis had not been mentioned yet-even though that particular surgery is an 85% sure diagnosis for the disease.
It took four days before they started telling us what "might" be going on. Neither one of us had heard of "it" before so we weren't smart enough to be as scared as we should have been. We had youth on our side and youth working against us. The doctors didn't think we could understand the enormity of the diagnosis so they didn't explain it to us and we were young enough to think that we could handle anything, so we didn't ask.
Finally at six weeks old, we brought Dana home and began the job of raising a child with a chronic terminal disease.
We were scared, but we loved her and we were determined to do the best job we could. We talked and agreed that she was not just my child to raise and not just her Daddy's child to raise but ours together. Our goal had to be a common one because we would not have the energy to fight each other and raise her with the care that she deserved. We were a team. I would pace the floor in the doctors office and he would play checkers with her for the fifth time. I would analyze lab results and he would play cards. We both held her and supported her and answered her questions when she asked them. We did not feel that it was necessary to sit down with her and explain the "facts of her life". We never hid the fact that she had CF and she asked what she wanted to know when she wanted to know. That way she was ready to accept the truth when we answered.
She did. Her father, her brothers and I will never be the same for having witnessed her courage in the face of an illness that there was no control over. She not only dealt with Cystic Fibrosis. Because her pediatrician left her appendix in ruptured for 11 months after making an incorrect diagnosis of "sinus", a surgeon was called in to operate to find the real problem. By that time her liver had been destroyed by infection and we started on a roller coaster of liver failure and ascites (problems caused by fluid trapped in the abdominal cavity) for the next 13 years. We struggled giving albumin infusions night after night, and at the end stage of her life, she needed 49 pills a day and Total Perineal Nutrition. She continued to go to school working for a degree in Graphic Arts.
Then came the day she checked in to the hospital. She only lacked five weeks of school and she was going to finish it when she left the hospital. Except that when she left, she left to come home to die. She got to spend ten days at home with the ones she loved and that loved her. She was not afraid to die-she was only afraid for our loneliness without her. She talked to me about death three days before she actually died and we made our peace with God. She gave her love unconditionally even with her last breath.
I know that what we have experienced represents the greatest fear that any parent has when the diagnosis is made. It is the ultimate sacrifice to a disease that is stronger than all of us. I miss her but I revel in the glory of a life well lived and a battle well fought and I am grateful for the experiences that we shared-the good and the bad. I feel her in my heart and my soul every day and I watch her courage exemplified in the young adults that reach out for the scholarship and want to be achievers in their own lives.
I don't know your name but I pray for your child and the peace that goes with knowing that you are doing a job that is reserved for the strong and loving in this world.
If you would like to email me about your life with a child with CF you can reach me at:
