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A Mother And Her Child Come To Terms With AIDS

Summer 1994

It was during my fourth month of pregnancy, when I first became aware of the disease; AIDS. My life had been filled with risks and fears, but hearing about AIDS on a radio, scared the ever-lasting life out of me! I panicked, I went numb all over, I jotted down the number and committed to taking this antibody test, for the sake of my unborn child. I had no idea what it meant to give birth to an AIDS baby. I thought that if I were infected, I would die. The implications were overwhelming. Guilt, fear, and shame consumed me.

Eight weeks later, information arrived in the mail. I was in my eighth month. I became a twenty-six digit number, took the test, & was told to return for the results in 4 weeks: my child's due date.

My substance use was under control, I had many frank conversations with God. I thought of all the risks I had taken during my addiction. But I truly believed that I would slip through the cracks of my high risk lifestyle.

On the morning of my due date we drove over to the test site in a borrowed, cold, empty van, so reflective of the emotional atmosphere. I was directed into a tiny room. The technician wept as he gave me the results. I was so confused, I heard him say "Suzin, you will be dead soon," and I'm sure he spoke the words "via cesarean section," but what I heard was simply "...have your baby removed." We alerted my doctor and the staff of Brigham Women's Hospital to the shocking news. After a brief discussion, the protocols for delivering an AIDS baby were established.

When they wheeled my beautiful, angel-perfect Jessica into my room, with "Precaution" bags covering her entire tiny body, we began to bond. I held her in my arms, fell to my knees and folded my body over hers. Our bonding was one of immeasurable grief, love and cleansing. I believe the experience we shared has profoundly shaped our relationship. Jessie seems to have an uncanny perception of my pain and sorrow. Since Jessica was the first "known" AIDS baby delivered at Brigham & Women's, there was great fear and misunderstanding on the maternity floor and, although the nurses heard my cries during the night, no one came.

I could never have imagined that I would have a second possible AIDS baby. My son, Jason, was born 13 months later. Both children required excruciating antibody testing every 2 months. My children have immeasurable scars on their spirits from the way this was handled. I was given high calorie recipes to beef up their bodies. The list of symptoms, I was to watch for, left me exhausted and anxiety ridden.

Presently Jessie (7), Jason (6), and Daddy are all negative, and I'm finally beginning to believe these results. I'm a recovering substance abuser who has taken that ride on the relapse roller-coaster more than once since HIV entered my life. I've taken my successful recovery into the educational arena. I speak in prisons & schools all over the San Francisco Bay area. I write a lot, and attend national & international conferences.

Do my children know about my disease? Did I tell them directly? How long and why did I wait? Does their school and our community know?
Peter and I respect our children and acknowledge that they are totally unique. They deserve to know the truth. If they ask a question, we do not lie. I believe they know that everything will be alright by my demonstrations of strength. I take care of myself and their daily needs. I include them in my vitamin and medicine regiments. They have been present for numerous TV and newspaper interviews. They are not shy in front of the camera. (Jason likes to cross-dress for the lens.) Both kids have learned much about this disease over the years. I have made some mistakes with Jessica along the way, but ultimately she has experienced the truth about her Mom.

Death is never an easy subject. While it is obvious that their quiet moments will be filled with thoughts about Mommy's death, I do not want my children to imagine me buried beneath the earth in a box. This year we've talked a lot about death and how it's as natural as birth. I've explained that our journey on earth is to learn to become better people, and to come to know ourselves and God. We can persevere through rough times. Suffering, as well as, happy times are part of the human experience.

In educating Jessie & Jason about HIV & AIDS, I bought a couple books and borrowed some from the library. I thought it best to read them together so that we could talk about the stories, and discuss any questions as they arose. Reading books together has helped us bring different issues of the disease to their age-appropriate levels.

It has not been an easy road. Our family has two enemies: Addiction and AIDS. Jessie has been profoundly impacted by both afflictions. Not to minimize Jason's experience, but we've seen more outward signs of fear and anxiety in Jessica. She basically did not speak to the other children the entire first grade, but she was a chatterbox at home. She was asked to participate in an after school "expressing emotions" class, under the guise of creative play. Although she didn't enjoy all the activities, we believe that the extra positive attention can only help her to express herself. Therapy is an option for both children that we may yet explore.

I know one thing for sure: If I feel like I blew it, or didn't say the right thing at the right time, or that I didn't say enough, there will be many more moments where I will be able to say what I need to say, and succeed. Hopefully my children's harsh judgments of my two diseases have been softened through watching me finally cope with my life in a positive way.

I strive each day to enhance my children's lives. Even though Peter and I are no longer lovers, we co-parent, and feel that it is very important to celebrate our family. Things may change in the future, but right now, our priority is our children. Both their Dad and I set aside special time just for them. We all need a break from the reality of our own lives. Although we make one another laugh, Peter and I are also able to cry together, it works for us. We are more available for the children when we are able to release our emotions.

Having friendships with other HIV+ mothers has helped me and my children find humor and fun, taking time out from the daily routine of living with a life-threatening illness.

I found something out about myself at a WORLD retreat for HIV+ women. In a support group for mothers, I felt a form of survivor's guilt over my children's testing negative. I was afraid to express my sheer and utter joy over their good fortune to the other mothers, some of them had lost their only child to AIDS...each mother's story moved me to tears. My heart certainly has had a major workout.

My children started the first and second grades today. My plans are, just as last year, to talk to their teachers & principal, to introduce myself, and to disclose my status, in hopes of receiving a compassionate and interested response. I will offer an AIDS presentation to them, & possibly to the other parents. The time is ripe for other children & their parents to show human reaction to our disease and to their fear of AIDS.

I believe it is imperative to educate our community about HIV disease, by putting a human face on it. The fear of AIDS is usually symptomatic of ignorance, but ignorance is curable by exposure to progressive educational input. If parents and children can have the myths dispelled, and the truths understood, we can help keep our children's lives safe. I want to awaken the sleepers. This disease does not care what class, color, gender or sexual identity one is. It only asks "Are you a human being?"

If these parents and teachers who interface with our children can begin to look at and deal with the more difficult issues this disease encompasses, such as; grief and loss, sexuality and morality, attitudes and judgments and death and dying, then our children will have a fighting chance to survive today's society and all of its temptations to hide from ourselves. If I can help our society to come up out of denial, then our children will be better armed in this war against life with HIV and its killer, AIDS.

My thanks to God and to the support the Universe gives us. Things are getting better for the children, and my heart's ability to feel love and be grateful has grown by leaps and bounds. When I feel myself slipping into depression, all I have to do is picture Jessie and Jason's sweet happy faces as I leave them off at school each day.

My kids know more about HIV than I gave them credit for, the more I labored over when to tell them, or how, the more time I gave them to wonder. After watching "And The Band Played On" I asked the kids, "You guys will be okay if Mommy dies - won't you?" We all cried hard for a moment or two, and then they both answered confidently, "Yes Mommy, we will!"

So, I will teach my children to love and accept themselves and to grow up and be happy and compassionate human beings, in spite of this disease. I double-dare this virus to attempt to take me now!

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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
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