The Anniversary - Part 2

As you can imagine with my sisters death my mother was very upset. And basically told the CF clinic that until they had something worthwhile to treat CF she would do it at home and they would never be allowed to admit me or treat me again.
She found a local pulmonologist who was one of the best in the nation at the time. Who was not associated with the clinic, and my cousin and I began to see him. He was extremely nice and took great care of us.
Unfortunately my aunt didn't handle the CF problem so well. It caused her marriage to end in divorce since neither of them wanted to have more children with CF, but both wanted to have more children.
My aunt pretty much lived in denial and treated my cousin like it was her fault all the time. Because of the lack of loving care and assistance, my cousin spent a lot of time at grandma's. Grandma had been a nurse for a long time and was great at caring for my cousin and I. My mother was a nurse also, but she worked a lot and if I was sick I went to grandma's house. So my cousin was pretty much completely raised by my grandparents, and I was about 1/2 and 1/2. Grandma and Grandpa had a huge effect on the person I became in life. And I spent many days and nights at grandma's with my cousin. As you can guess we became like brother and sister.
Our doctor worked out of the local children's hospital (the CF clinic was at the state hospital and was run by a gastroenterologist. A stomach doctor.) When my cousin was first admitted she soon found that she could gain all the attention and love she wanted from the hospital nursing staff and caregivers. They were fantastic, and to this day that Children's hospital is repeatedly rated in the top 20-30 children's hospitals in the nation.
Sadly she decided that she could get her love at the hospital, and so she neglected completely her treatments and stuff because it brought the attention she needed and desired. It was fun to visit her and play in wheelchairs and throw water balloons out the windows. But the games slowly started to get too hard for her to play. Sadly I watched my cousin get worse and worse until she was finally ready to die.
I saw her the day before she died. I remember it like it was yesterday. We were so close and had so much in common, in that situation I don't believe I will ever be able to remove that day from memory. I was barely 12 years old. She was also 12. It was Saturday and we went to the hospital to see her. Only 2 or 3 of us could go in at a time. Her mother was not there, neither was her step-father. My dad was sitting by her side talking to her and helping her. She could not talk anymore because she didn't have enough breath. I talked for a bit with her, but she barely even opened her eyes.
She had a constant Albuterol Nebulizer running into her Oxygen mask. I went back out of her room and sat in a wheelchair alone in the hall. I remember being pretty upset, but not showing any emotion (it wasn't really allowed in my family.)
I was also sick at this time (I had never been admitted to the hospital as of yet) and I had heard my mother and doctor talking about a new drug they had for CF, it was a drug called Ceftazidime, aka Fortaz. It was the greatest thing since the Pancrease enzyme according the CF Foundation. My mother was not sure, she had been in trouble before with hospitals messing with her kids. She wanted to think about it. Our doctor came over to talk to me while I was sitting in the wheelchair. He said that he wanted to put me on Septra DS tablets for 2 weeks, a broadspectrum antibiotic to help me feel better. I agreed and he left.
That was the last time I saw my cousin alive. She died the next day, Sunday 14th June 1987. My mom called the doctor, and I heard her tell him that my cousin's death was going to be too hard on my sister and myself (my sister was the other caregiver to my cousin, she spent nearly each night in the hospital with her.) and she didn't want me to go in the hospital because she was afraid my sister would crack. So I went on Septra DS again. And yet again here I was seeing essentially another sister die from the same disease I had.
I was older this time and I remember the feelings I had, and even now, nearly 20 years later I am not ready to write about those. But again I had the ever present question, "why?" that had come into my life 6 years earlier.
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Come back soon for Part 3 of The Anniversary.