Life with Alex
by Richard B. CoryNovember 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 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.
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.
Alex looked very puzzled as he exclaimed, "But daddy! You're a grown-up! You're not supposed to go to school. What are you learning in school anyway?"
I told him that I was learning to teach people about AIDS. He pursued this a bit further asking what AIDS was. Apparently my explanation hit a little too close to home as I explained that AIDS was a disease that could make people very sick and they had to take lots of medicine. Ultimately, Alex asked me if he had AIDS. I have made it a point never to lie to my son, so I told him he did. It was one of the hardest things I have ever had to do. Alex only 7 years old, already was having to come to grips with his own mortality.
In the several years that have followed we have become increasingly public about our story. Our story has been reported, usually in conjunction with some fund raiser, in the local newspaper, television, radio, and even the Internet.
Alex has also made public appearances with us. As Alex got a little older we made something of a game out of learning the names of his medicines. Now Alex can be quite a ham (and a bit of a show off) in interviews. He knows AZT not only as AZT, Retrovir, or Zidovudine, but also as 3 deoxy 3-azidothymidine!
Alex has done very well so far. He is 11 now. During the last year he has been hospitalized 5 times. This sounds very grim. Of these hospitalizations, 4 were the result of side effects of drugs. Only one was the result of an opportunistic infection.
The Community of Faith and AIDS
The community of faith plays an important role in dealing with AIDS. First of all, though many churches might find this repugnant, education about at risk behaviors including open and frank sex education is a moral imperative. The lives of our youth are at stake. Though the education of my own family may not have prevented their infection, the education of the blood donor who was infected might have saved both his life and the lives of my wife and son.
The health and welfare of those infected and affected by the AIDS pandemic does not end with receiving the necessary medicines and medical care. An important part of their health and welfare is their mental and spiritual well being. Though the church may not be able to save the lives of these people, they certainly can provide a source or spiritual support that could lead them to an even greater gift... the gift of faith that could lead to eternal life.
This year's World AIDS Day (1997) focused on Children Living in a World with AIDS. Alex has his own perspective from the view point of a child living with AIDS with both of his parents. Still other children have the perspective of living without one or both of their parents.I know several children who have lost other relatives and friends who have a difficult time understanding why and how this has happened.
Our focus is on Children Living in a World with AIDS, so let's take a moment to consider those children living in a community of faith with AIDS. My own son and I had a conversation that went something like this:
Alex: Daddy...(pause) I believe in miracles!
Dad: Well that's great son. Perhaps you should tell me more.
Alex: Well... God can work miracles, right?
Dad: That's right.
Alex: And Jesus worked miracles and could heal people the doctors couldn't make well, right?
Dad: That's right.
Alex: Then Jesus and God can kill the HIV in me and make me well.
People of faith across the world must work together to ensure that all of God's children have the opportunity to experience faith such as this. This is especially important for those that are living a real life nightmare like AIDS.
People living with AIDS, need love and caring as much as anyone. They need something that can give them comfort and peace.
I know the inner peace that faith in Jesus Christ can bring and the emptyness that can exist in the absence of that faith. Despite all of the problems that my family has experienced (or perhaps even because of them) and a nearly 20 year absence from church, I have had my faith restored. The example set by people ministering to my family as we learned to live with AIDS, has led me back to God. I know this is the greatest gift I could receive and, I know now, that this is the greatest gift I have to offer.
Richard B. Cory, Chesapeake, VA, November 5, 1997