What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Anonymous.
I am raising my three children to be educated, confident, strong and pro-active. This is especially true of my third child who is ten years old. She is beautiful, smart, healthy and HIV positive. She’s been on lifesaving ARV medications since she was four.
What I want you to know about parenting a child with HIV is that when it’s treated, it’s no big deal. I want you to know that HIV is not the same thing as AIDS, but untreated or poorly treated HIV can lead to AIDS. To prevent, this, my daughter takes a cocktail of three medications twice daily. These medications stop HIV from replicating in her body, making it non-detectable in her blood. Because of this, her chances of transmitting her disease to anyone are very low.
What I want you to know about parenting a child with HIV is that the hardest part is facing the stigma and ignorance of our society. Because of this stigma we have chosen to share our daughter’s medical diagnosis with only a few close friends. It’s sad knowing that so many people (including family, teachers, coaches and friends) would treat both her and us differently if they knew about her daily medications. I will never forget hearing one of my best friends say that if we decided to adopt an HIV positive child her husband would no longer be okay with our kids going to play at their house. THAT is the very hardest part of parenting an HIV positive child.
I want you to know that parenting a child with HIV is not scary. It’s not overwhelming. It’s not dangerous. We share cups and plates and leftovers with our daughter. We kiss her on the lips, we care for all her bodily needs without gloves. We also teach her to follow universal safety precautions. Even though only one of our children is positive, all three of our children know that no one but them should bandage their wounds or touch their blood. Sometimes helpful parents, coaches or teachers try to help out, but our children know to insist that “I’ll do it myself”! Every parent should teach this to their children and every parent and coach should practice it. I want you to know that HIV is a wimpy virus. It is easily killed with soap and water, so if you do happen to get someone’s blood on you, just thoroughly wash it off. Many people don’t know that once blood has dried, any HIV inside is dead and no longer contagious, so you can’t catch HIV from my daughter’s old bandages, or anyone else’s.
I want you to know something more though, than all the medical facts that make HIV so much less scary than we all imagine. I want you to know how much it hurts every time someone jokes about “getting HIV” from a dirty public restroom. I want you to know that when you treat those who are HIV or AIDS infected as the marginalized of society, you deeply hurt those who live with the disease. HIV is not a gay disease, or an African disease. It is not passed on through poor hygiene, poor sanitation or poor morals. It is passed through blood (and semen and breastmilk.) Sometimes blood passes it to those practicing unprotected sex, and sometimes blood passes it to newborn babies emerging into the world for the first time. In either case, shame and blame have no place as a response to a life-long medical condition.
Twice a day my daughter takes a handful of bright pills that, over decades of use, may cause her some side effects. More devastatingly, it is likely that she will face a lifetime of either secrecy or stigma. Maybe she will be a part of a pioneering generation that is opening the silence and creating new hope around this illness. Should she choose to reveal her diagnosis in the future, we fully support her – that is her choice. But, regardless, she will likely live for seventy or eighty years. She will marry and mother. (Those living with HIV controlled by medications can safely regularly practice protected sex and even give birth with less than 1% chance of transmitting their disease to their child.) She may become a doctor (as she dreams), changing the future of other girls affected by this or other conditions.
I also want you to know that it is most likely because of the stigma and expense associated with HIV that our daughter lost her first family. She then spent six years waiting for her adoption papers to be filed because social workers in her home country believed no one would want to adopt an HIV positive child. I want you to know how angry and sad that makes me.
And having written all this, I want you to know that living with an HIV positive child is among the easiest and the best things I have done with my life. I am a part of changing history as I parent this perfectly imperfect small person. I hope you will be a part of changing history too, as you stand up for Positive People whenever HIV or AIDS comes up in conversation. HIV is not dirty, it is not scary, it is not disgusting. It is a long-term medical condition with medical treatment just like diabetes. Let’s treat it that way. End the stigma. My beautiful daughter has a whole, healthy life ahead of her. Let’s make it a good one.
What I want you to know about parenting a child with HIV is that when it’s treated, it’s no big deal. I want you to know that HIV is not the same thing as AIDS, but untreated or poorly treated HIV can lead to AIDS. To prevent, this, my daughter takes a cocktail of three medications twice daily. These medications stop HIV from replicating in her body, making it non-detectable in her blood. Because of this, her chances of transmitting her disease to anyone are very low.
What I want you to know about parenting a child with HIV is that the hardest part is facing the stigma and ignorance of our society. Because of this stigma we have chosen to share our daughter’s medical diagnosis with only a few close friends. It’s sad knowing that so many people (including family, teachers, coaches and friends) would treat both her and us differently if they knew about her daily medications. I will never forget hearing one of my best friends say that if we decided to adopt an HIV positive child her husband would no longer be okay with our kids going to play at their house. THAT is the very hardest part of parenting an HIV positive child.
I want you to know that parenting a child with HIV is not scary. It’s not overwhelming. It’s not dangerous. We share cups and plates and leftovers with our daughter. We kiss her on the lips, we care for all her bodily needs without gloves. We also teach her to follow universal safety precautions. Even though only one of our children is positive, all three of our children know that no one but them should bandage their wounds or touch their blood. Sometimes helpful parents, coaches or teachers try to help out, but our children know to insist that “I’ll do it myself”! Every parent should teach this to their children and every parent and coach should practice it. I want you to know that HIV is a wimpy virus. It is easily killed with soap and water, so if you do happen to get someone’s blood on you, just thoroughly wash it off. Many people don’t know that once blood has dried, any HIV inside is dead and no longer contagious, so you can’t catch HIV from my daughter’s old bandages, or anyone else’s.
I want you to know something more though, than all the medical facts that make HIV so much less scary than we all imagine. I want you to know how much it hurts every time someone jokes about “getting HIV” from a dirty public restroom. I want you to know that when you treat those who are HIV or AIDS infected as the marginalized of society, you deeply hurt those who live with the disease. HIV is not a gay disease, or an African disease. It is not passed on through poor hygiene, poor sanitation or poor morals. It is passed through blood (and semen and breastmilk.) Sometimes blood passes it to those practicing unprotected sex, and sometimes blood passes it to newborn babies emerging into the world for the first time. In either case, shame and blame have no place as a response to a life-long medical condition.
Twice a day my daughter takes a handful of bright pills that, over decades of use, may cause her some side effects. More devastatingly, it is likely that she will face a lifetime of either secrecy or stigma. Maybe she will be a part of a pioneering generation that is opening the silence and creating new hope around this illness. Should she choose to reveal her diagnosis in the future, we fully support her – that is her choice. But, regardless, she will likely live for seventy or eighty years. She will marry and mother. (Those living with HIV controlled by medications can safely regularly practice protected sex and even give birth with less than 1% chance of transmitting their disease to their child.) She may become a doctor (as she dreams), changing the future of other girls affected by this or other conditions.
I also want you to know that it is most likely because of the stigma and expense associated with HIV that our daughter lost her first family. She then spent six years waiting for her adoption papers to be filed because social workers in her home country believed no one would want to adopt an HIV positive child. I want you to know how angry and sad that makes me.
And having written all this, I want you to know that living with an HIV positive child is among the easiest and the best things I have done with my life. I am a part of changing history as I parent this perfectly imperfect small person. I hope you will be a part of changing history too, as you stand up for Positive People whenever HIV or AIDS comes up in conversation. HIV is not dirty, it is not scary, it is not disgusting. It is a long-term medical condition with medical treatment just like diabetes. Let’s treat it that way. End the stigma. My beautiful daughter has a whole, healthy life ahead of her. Let’s make it a good one.
