Life with Alex

Living with AIDS

by Richard

(November 5, 1997) -- As I passed by my son Alex's bedroom on the way to bed myself, I heard him crying. I opened the door and found him sitting in his room sobbing uncontrollably. I invited Alex to lay down beside me in my bed and put my arms around him to comfort him.

After a short time, my wife came up to bed and found me holding Alex and stroking his head. When Alex finally began to calm down, we asked him what he was crying about. He told us he was scared. We asked him if he'd had a nightmare. He said that he had not even been to sleep.

It turns out that he was not scared of a dream, he was scared of reality. He told us he was afraid of his past and even more frightened by what the future held. You see, Alex deals with a nightmarish reality every day of his life. Alex lives with the nightmare called AIDS.

The Beginning of Alex's Life

This story about a child with AIDS starts at the beginning of Alex's life. When Alex was born he was delivered by C-section due to complications in the birthing process. His mother, Catherine, experienced post operative bleeding. She received a massive blood transfusion and further exploratory surgery to find the source of the bleeding. By the day's end, she was in intensive care in a coma.

During her recovery, under the advice of the pediatricians, Cathie breast-fed Alex. She had no idea that she had been infected with HIV.

Nearly 2 years later, Cathie decided that she had a debt to pay. She had received the gift of life from those who donated the blood she had received at Alex's birth. She went to the local office of the American Red Cross to return the good will she had received. After a few weeks, we received a call from the Red Cross asking her to return to their office. They told her that she had tested positive for HIV, the virus associated with AIDS.

Subsequent testing of Alex showed that he was also HIV positive. We presume that he was infected via mother's milk, a known path of infection from an HIV positive mother to her baby.

Alex's Childhood

Alex has had a fairly normal childhood up until the last year. In his infancy, Alex was oblivious to his problem. As a toddler, he began receiving monthly immunoglobulin infusions and taking Septra as a prophylaxis against pneumocystis carinii pneumonia. Despite these inconveniences, we did our best to see to it that Alex had as normal a life as possible.

Life was not so normal for my wife and I, however. Aside from having to live with the fact that both Cathie and Alex were infected with HIV and would probably reach a premature end, we also had to deal with the ignorance and hatred of many people. We were afraid to tell even close friends and family members of our problems for fear we would loose their friendship.

Since Cathie has worked outside of the home off and on through the years, at times, Alex required day care. We were asked to remove Alex from one day care center, he was refused admission to at least two others, and has been refused admission to two different schools, one run by a Catholic church and the other at a Protestant church, all because of his HIV status.

Even the local public school asked us to delay his admission so they could do training. We had given the school board several months notice that our child, who was HIV positive, would be attending school there.

At the age of 6, Alex was diagnosed to have AIDS due to a diagnosis of lymphoid interstitial pneumonitis. As time went on, I found it increasingly difficult to remain silent about my family's problems and the ignorance we had faced in others. I'm not one to stick my head in the sand... I prefer tackling problems head on.

Going Public

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With the support of my wife, I decided to go public with my family's story. I did this first by becoming a Red Cross HIV/AIDS Instructor. This, I felt would give me the opportunity to educate people of the facts concerning HIV and AIDS as well as an opportunity to share my personal story.

I took a week of vacation to attend the Red Cross course. During that week, I had to take Alex, now 7, to see his doctor at Children's Hospital. As we drove on the way to the hospital, I pointed out the Red Cross to Alex and told him that daddy was going to school there.

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Written in 1997. Last reviewed: 10/05

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