QUESTION: I’m curious what daily life is like for parents raising children with HIV/AIDS. Can you share what it is like?
Rebecca, the truth is that daily life for families with HIV-positive children is much the same as any other family. Of course our kids need to take medications, usually twice a day. It is vital for the effectiveness of the medications that they be taken on a regular schedule and that no doses are skipped. Our physician said we are allowed to “fudge” the schedule two times a year. This is because the effectiveness of ARVs depends on them been taken regularly. If they are not the HIV virus could develop resistance and render the medication useless. So, I would say that the main difference in our family’s daily life is planning our schedule around making sure our son always takes his meds on time.
The actual administration of my son’s meds literally lasts only a few seconds. I keep alarms set in my home and on my cell phone to ensure that I never forget. I carry our son’s medications in a travel case if I know we be away from home during the time he takes his medications.
Aside from following universal precautions if there is a blood spill in our home (though, every family should do this as well) the medications are really the only difference.
Our HIV-positive son does go to a few extra doctors appointments per year. He sees a specialist called a PID (pediatric infectious disease) doctor who monitors and treats his HIV. Those appointments are every three months, or four times per year. At every appointment blood is drawn to monitor my son’s viral load (amount of HIV in his body), his CD4 count (this indicates how his immune system is functioning),and checks his liver for any side effects from the drugs.
People often imagine that parents with HIV+ kids are constantly nursing their sickly children. Because my son’s viral load is undetectable and his immune system is functioning normally he isn’t sick any more than my HIV-negative kids. Our son is healthy and strong and growing.
So, that is it. Not much to report, honestly. As I said before, life is pretty much the same for us as it ever was before we adopted our HIV-positive son. Only it is richer and fuller because he is in our family. His virus really doesn’t play into our daily life. What I mean is, HIV isn’t in the forefront of our minds daily. My son is a kid just like any other. He simply has a chronic but manageable disease which he is learning to thrive with.