What can I say on "World AIDS Day" that I haven't already shared on this blog? I've said over and over that HIV is not a death sentence--that my daughter is expected to live a long and healthy life. I've shared about what day to day is like having a daughter with HIV (umm...pretty much just like life with any other child). I've told you how much medication costs each month ($110 for 3 meds, on our insurance). I've even talked about stigma. I feel like I'm "preaching to the choir" at this point. So today, I want to talk to the person that creates the negative social stigma that is still hanging around like a case of bad breath.
Dear Outdated Medical Provider,
Thank you for attempting to care for my daughter today. However, you really didn't need to put your gloves on just to take her temperature. Before you knew she was positive you didn't bother, so why now? I appreciate your kind smiles to my daughter, but wish the concern in your eyes would go away. She isn't going to make you sick. I understand that you received your HIV/AIDS training 10 years ago and may not be that up to date on the reality of the virus in today's America. I understand that here in America you probably don't run into many HIV+ children anymore. Can I tell you why? It's because there is better than a 98% chance that an HIV+ mother won't transmit HIV to her child during birth, if she is taking the proper medication. Even though HIV in children is becoming so rare in America, I'd really appreciate it if you could spend 5 minutes to educate yourself on it before you attempt to care for my daughter. She deserves that consideration.
Dear Company Safety Trainer,
Really? Really?! People in the company need to be careful about touching the soda machines for fear that an HIV+ person has recently touched the machine? How did you get this job anyway? As a teacher I had to sit through yearly videos on Blood Borne Pathogens and even back in 2000 we were taught that blood borne pathogens are spread by (surprise!) BLOOD! I understand that it's your job to make people think more seriously about health concerns in the workplace, but do you need to do that through lies? HIV is a puny little virus. It dies quickly once it hits the air--as in seconds. It makes me sick to consider that in 20 years when my daughter is in the workforce there could still be people like you floating around. There are scary and highly contagious viruses out there. HIV isn't one of them.
Dear New-to-HIV Friend or Family Member,
No, I'm not adopting an HIV+ child to bring dissonance to the family. I'm not adopting an HIV+ child to be a hero. She's not coming into the family to affect YOUR life in any way (except that she will, because she's so darn amazing!). You are much more likely to make her sick than the other way around. She isn't any danger to the other kids in the family. Yes, they can share cups and bites of birthday cake. Of course they can all be in the same swimming pool. No, you are not entitled to share her status with anybody that our child or ourselves haven't approved--unless we decide to be completely open about our daughter's status. You can hug her, kiss her, cuddle her, help her go pee-pee in the potty, give her baths, wiper her nose, dry her tears, and change her diapers just like you would any other child in our family. I hope you will choose to be a part of our daughter's life. If not, you are the one who will lose out because she is an amazing little person.
Dear Pastor and Church Family,
We're coming to you not because we HAVE to, but because we want to include you in the joy of learning the TRUTH about HIV. We want you to know that the face of HIV/AIDS is not a sickly, skinny person with open wounds all over there body--at least not here in America. We are disclosing our child's status to you so that our church body's eyes and hearts may be opened to the opportunity to spread truth about one of the branches of our body that is severely mistreated in other parts of the world.
We may talk to you about the need to be vigilant in using Universal Precautions in the church. This is as much to protect our daughter from the germs of others as it is to protect others from the virus that is in our daughter. Did you know that since the introduction of ARV medications HIV has not been spread in any casual setting? None! Nada! However, no church is to small to use good sense when it comes to blood.
Please, stand beside us. Do not call a board meeting to discuss how to "handle" this situation. Do not feel that you need to organize a panel of physicians within the church to research this subject. Jesus loved "the least of these." He didn't call a board meeting before deciding whether or not to touch the leper. Please, treat our daughter and our family as you would treat anybody else in this church. After all, there's a good chance there are plenty of folks walking around the church with diseases that are just as serious and much more contagious as HIV.
And to those who are living in love and truth:
Dear Present or Future Adoptive Parent,
Even though there are ignorant people out there...even though some of them are ignorant by choice and not circumstance...even though HIV/AIDS can kill if not treated...you *CAN* "do this." You *CAN* adopt a child who happens to have HIV/AIDS. Yes, even a child with clinical AIDS! Parenting a child with this virus/disease is easier than parenting a child with GI issues, or ADHD, or sensory issues, or cognitive delay, or Diabetes, or vision limitations, or kidney disease. [I speak of these from personal experience!] I'm betting that parenting a child with HIV is much easier than most other special needs. After all, how many other diseases are so highly researched with such amazingly affective medications? Can you give medicine twice a day? Can you take your child to the doctor 4 times a year? If so, you can parent a child with HIV.
I know what you're saying. "But what about the stigma?" Yeah, yeah, it's true. The negative stigma is out there. But with your efforts, and my efforts, and the efforts of our friends and family, the stigma will fade away (for the most part) in the next few years. If you don't want to deal with the stigma you have the option of not disclosing your child's status. To each his own.
To parent a child with HIV you don't need any special skills. Honestly, I think you should hurry up and get started while agencies still offer reduced fees for HIV+ children! It sort of surprises me that they still do, because in my life and the life of my daughter HIV seems like a very minor "special need." It's only the history of HIV/AIDS that makes it seem scary. It's just that tiny part of your brain that remembers how scared we were of it in the 80's. But that time is past. Here and now, these kids are usually no more sick than any other kid (after they start taking medication).
Dads, I hear from so many moms that they are okay with HIV but their husband is reluctant. It's in your nature. It's in your DNA to provide for your family, and to protect them. An HIV+ child seems like a threat to that at the beginning. I've already shared with you that an HIV+ child is of no danger to your family. If you don't believe me, just google it! And the finances? It's 3 copays for medication a month. Check your insurance. If you check it, and it all figures into the budget, what else is there? Chances are, you can afford the copays. And there's no need to "protect" the rest of the family. So what's holding you back?
To Africa, and Asia, and Eastern Europe, and every other place being ravaged by this disease,
I pray for you. I know we are living a very different reality here in America (and in the "west") than most other parts of the world. I don't know why we were lucky enough to have the resources to fight this disease. I know that in many parts of the world HIV/AIDS treatment *IS* still stuck in the 80's--no good medicine, or not enough of it, with horrible discrimination against anybody carrying the disease. Please, forgive my people for not coming more to your AID. Forgive us for not standing beside you sooner. I know that what is being done now sometimes feels like too little, too late. Just know that there ARE people standing beside you. We will do all we can to change the face of HIV/AIDS in your country, just as the face has changed in ours. I pray for you.
P.S. It's December 1st somewhere, right?!