06: Struggling for a Reason

Mary shared this story with MAP following the death of her parents. Her mother received case management services and other support from MAP. We are grateful that Mary was willing to share with others the challenges she and her family faced.

When I decided to share my story, I had no idea where to begin. I decided to start with the moment I found out my 70 year-old mother was HIV-positive. One week later, she received an AIDS diagnosis.

My mom had been sick for over a year. The doctors kept treating her for depression. She was sad, exhausted, and had lost 60 pounds. So yes, I guess depression was an easy diagnosis. My mom's health continued to decline. At one point, the doctors had her admitted to a psych ward, convinced her depression was keeping her from eating. The next group of doctors did more blood work and could see something was going on with her blood, but they weren’t sure what it was. They gave us the diagnosis of "possible leukemia" and started treating her for that. Medications, transfusions, and injections to produce red blood cells began. Nothing was working. Finally, months later, after my mom was no longer able to walk and had lost all balance, a neurologist ordered an HIV test.

I try not to blame anyone for not finding out sooner. My mom was a 70 year-old grandmother, married to the same man for 50 years. Is that why no one thought about HIV? It breaks my heart to think of all the tests she went through: MRIs, CAT scans, several bone marrow and spinal taps, upper and lower GI tests and much more. I believe if we had found out sooner we would have had more time with my mom.

When my mom was diagnosed, we all tried and tried to figure out how she could have been infected. And we all saw the same thing the doctors did, a 70 year-old grandmother. This doesn’t happen, right? I then knew that my life was about to fall apart even more. My dad told us about an affair he had. He agreed to get tested. We were all so shocked when he told us his test was negative. Looking back, I know that wasn't true. We were all so busy taking care of my mom we didn't see what was happening to my dad. He was very, very sick too.      

She counted the days until my son's first varsity soccer game; she was there, in a wheelchair and could only stay for the first half, but she was there.

My mom fought so hard. She just wanted more time with her family. She counted the days until my daughter's high school graduation; she was there. She counted the days until my son's first varsity soccer game; she was there, in a wheelchair and could only stay for the first half, but she was there.

One of the last outings my mom took was to a horse show to watch her granddaughter ride. My daughter won the class and I will never forget watching her ride over on her horse and hand my mom the blue ribbon and trophy and say, "Grandma, these are for you."

My mom was such an incredible woman. She was also my best friend. We spent the rest of the time together, saying all the things we needed to say to each other. I am thankful for that; I know so many people never get that chance. We laughed and we cried and often just sat quietly, holding hands.

My mom died in late 2006, surrounded by her family. One week later, I was riding in an ambulance with my dad and I knew the nightmare was starting again. At the hospital, I asked the doctor to do an HIV test, and a few days later we found out my dad had AIDS. We had no idea that when my dad left their house in an ambulance that night, he would never go home again.

Most days I still cannot believe they are gone. I still think of picking up the phone to call them. I miss them so much, I cannot breathe.

I realized there was so much we didn't know about my dad. I will admit there was a period of time I blamed him for all of this. I blamed him for the careless choices he made, for his dishonesty and denial. Though one day when sitting with him in the hospital, I took his hand and said,"I forgive you. No matter what you have done, or the choices you made, none of that changes my love for you. I will always love you." Not long after that, dementia took my dad from us. My dad died in October, 2007.

Most days I still cannot believe they are gone. I still think of picking up the phone to call them. I miss them so much, I cannot breathe.

Years ago, when I thought about HIV/AIDS I felt bad for the people suffering from the disease but honestly didn’t think I would ever be personally affected by it. I had no idea my life would be shattered into a million pieces by it. I will never be the same person, because of AIDS.

I held my mom's hand as she died and ten months later I held my dad's hand as he died. I know more about HIV/AIDS than I ever thought I would. I now know that this can happen to anyone- your parents, your brothers, sisters and even your grandparents. But I also learned more about strength, hope, compassion, taking care of the people you love and unconditional love. I believe that in sharing my story, I can begin to heal. It is my hope that if someone going through a similar journey reads my story, they will know they are not alone.

Last Updated: Wednesday, March 19, 2008
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