Monday, March 08, 2010

What's our "story" with HIV?

This is a question I get asked a lot, and I just don't seem to have an easy answer. The first answer that pops into my mind is, "We don't really have a 'story' to tell." But I guess there's always a story. There are two awesome women who own blogs/websites that advocate for HIV+ children. They've both asked if I would write out our "story" so they could add it to their sites. It's been months and I still haven't sent anything--not because I don't want to--I just don't know what to write. So I figured I'd play it out here first.

THE DECISION

The most significant HIV factoid for our family is one you hear often. "Raising a child with HIV is easier than raising a child with Type I Diabetes. HIV patients have a better outcome than Type I Diabetes patients."

Because Eric is a Type I Diabetic, and because we certainly wouldn't consider diabetes as a special need we couldn't handle, that factoid definitely perked our interests in adopting an HIV+ child. I would also say that our experience with Samren and Taevy's special needs caused us to have the attitude, "If we could do THAT, we can parent an HIV+ child." I will always say that parenting a child with behavioral/attachment challenges (Taevy) is way harder than parenting a child with any sort of medical need! And Samren's medical issues were way more involved than most HIV+ children's medical needs. We sort of felt that, through our other children (who were supposed to have been "healthy") God prepared our hearts and minds to be open to many special needs.

I think that the first personal account of HIV adoption I read was from Erin Henderson (AAI's awesome HIV Adoption Coordinator). I remember reading the story of her daughter's adoption and thinking, "Okay. I could do that." I mentioned HIV adoption to Eric; we read a few informative documents; and that was that. HIV was on our list of acceptable special needs, should child #4 ever present him/herself.

For us, deciding to have a fourth child was a MUCH bigger decision than deciding that child could be HIV+!

DISCLOSURE

I will admit that Eric and I really didn't give enough thought to the most difficult part of HIV adoption. DISCLOSURE. We were so okay with HIV after a few minutes, that it was really hard for us to imagine that someone else wouldn't be--at least not after we gave them factual information. Um....that was naive. There are people out there stuck in 1989 that will NEVER get to 2010 where HIV facts are concerned. There just are. Just like there are people stuck in 1952 where racial prejudice is concerned.

At first, we thought we'd tell everybody. So we started out telling our parents. One set of parents kept their concerns to themselves (but at least put smiles on their faces and acted supportive). The other set of parents laid out a LOT of concerns. We had one parent who flat out didn't agree. He didn't want anybody with "AIDS" around his kids and grand kids. He didn't want "it" around him. Even at the point that we brought Taevy home that parent still didn't believe we had the right NOT to tell people if we didn't want to. [Thankfully, after falling in love with KENDI, the "it" that HIV was, is now gone. HIV is a part of Kendi, and he loves her. Love can erase a lot of fear and stubbornness!]

After the not-so-hot response from our parents we re-thought our plan to be very open about Kendi's status. In fact, we probably went to the opposite end of the spectrum, not planning to tell anybody unless they had a need to know. This never sat well with me, in part, because I had such a desire to be open on my blog--to educate and advocate. At the same time, I don't believe it's right to make my child some sort of public HIV poster child. It was all very confusing and hard. Very hard. There are lots of layers of decision to be made that probably can't be fully understood until you are in the midst of the decision-making process.

Shortly before Kendi came home we told our church elders, which quickly turned into us deciding to be open at church...then the blog...and finally, with siblings. We didn't have a big family meeting with my 5 other siblings. I just put it out there on the blog, and figured they'd talk and ask any questions they had. At that point, we didn't want to make announcing Kendi's status a big deal. It's her. Deal with it, or don't. We didn't really care. Thankfully, everybody dealt with it so we didn't have to shut anybody out of our lives! In fact, a few of my siblings are very openly supportive about our decision.

As you can see, there was a lot of evolution that occurred throughout the decision making process for disclosure. My best advice is to expect that you haven't thought about every aspect of it. Expect to be surprised by how frustrated you feel when figuring out what is best for your family.

Living with HIV:

When Kendi first came home I would say that we had mental "checks" with what was okay and not okay. "She wants a drink from my cup. I know this is okay. Now DO IT Anita." "I just got diarrhea all over myself from a blowout. This is okay. HIV isn't passed through poop." Those sort of things. They were just quick checks. No big deal, but still there.

Within a week those "checks" had disappeared. In fact, I can honestly say there were times when Kendi's HIV status was the furthest thing from my mind. I don't think twice about sharing any part of my life with her--slobbery kisses and pizza slices and glasses of milk. After a few days you don't even have those little "Is this okay?" questions in your mind. She was just my kid. I'd die for her. End of story. I would almost say that I became complacent with Kendi's HIV. She wasn't on medications yet. There were NO reminders from day to day that she had that squirly little virus inside of her. One time I was taking Kendi's earrings out for Taevy to put in. Taevy said, "Mom, is this okay?" It didn't even cross my mind to question whether it was okay! [Yes, it's okay as long as neither set of ears is bloody-infected, but better to do a quick alcohol swipe.]

When it was time for Kendi to start medications I knew the days of forgetting she was positive were coming to an end. We'd be reminded twice a day, for the rest of her life. Not a big deal, but it was sort of sad to enter into the next stage of her life. Most kids take the 2 or 3 medicines by mouth, twelve hours apart each day. Simple. Kendi happens to be one of the minority of kids who just couldn't handle the medicines by mouth. It was really hard on her. I would go as far as to say it was traumatic. So in our case, Kendi needed a feeding tube to help her take the medicine.

I've posted a lot about the feeding tube lately, so no reason to repeat myself again. The biggest message I want to get across about that is that it is NO BIG DEAL. The g-tube is a part of our lives exactly 4 minutes a day, while we give medicine. The rest of the time it's just there hanging out.

Everybody wonders about precautions. You should use universal precautions with all blood (bloody stools, bloody boo-boos, etc.). That's as simple as putting on gloves (or another barrier) before you touch the blood. I'm going to be completely honest here and say that I haven't once put on gloves since Kendi came home. We haven't had that many bloody incidents, but when they've happened, I haven't felt the need. There was a bloody nose, and a bloody knee, and a bloody lip. Our kids know not to touch anybody else's blood, and are all very good about following that rule. However, I've made the PERSONAL choice that I'm comfortable with the tiny risk of transmission FOR MYSELF *if* Kendi should have a blood issue and *if* that blood entered my blood stream. The likelihood of that ever happening is so minuscule I just don't worry about it. Don't misunderstand--I don't put myself at unnecessary risk. I'm not advocating that families do away with universal precautions. If there was ever a big bloody mess I'm sure I would go for gloves. This is just what is right for ME personally.

Do our kids share cups? Yes. Do they share bites of food? Yes. Lip kisses? Yes. Chap stick? Yes (although not if we've got bloody chapped lips). Toothbrushes? NO. I'm a stickler about that. Too much bleeding can happen when we brush our teeth. Kendi's brush is in a separate drawer just to make sure it doesn't get mixed up.

I honestly can't think of any other ways that HIV in any way affects our daily lives.

THE FUTURE?

I've said many times on this blog that I fully expect to meet Kendi's babies and grand babies one day. And I mean it. First of all, I think there's a lot of hope for an HIV cure in the next 20 years. Secondly, she can be pregnant and have a 98.5% assurance that her baby will NOT have HIV (as long as Kendi is taking meds and takes certain precautions). Third, there are people out there who fall in love with HIV+ people, and get married. Some are positive and some are negative. Positive/Negative couples can stay positive/negative their entire marriage with precautions. Some positive/negative couples can also stay that way even if they choose to have unprotected sex. If a positive person's HIV is under control it's MUCH harder to pass HIV on to their partner. Some partners feel comfortable with the risk. I am praying for Kendi's mate and firmly believe that the Lord is preparing a special person for her.

What about teenage years? I think I'm most leery about that part of life. Rebellion is a big hairy monster. Kendi will ultimately be responsible for her actions. I hope she doesn't do anything she regrets later as far as disclosure, or pre-marital sex, or going off meds.. All Eric and I can do is prepare her with information and discussions about the pros and cons about all these things.

I guess that about sums up our story thus far with HIV. I feel like it's a pretty innocuous and boring story. Not much drama to share. Raising a child with HIV is 99% of the time exactly like raising a child without HIV.

Love,
Anita

6 comments:

mjohnson 9:12 PM  

I think you've done an awesome job at covering your "story". All the right amount of detail to clear away any gray areas. Thank you for this, it is very helpful. Thank you for your honesty. I think you're thought process then and regarding the future is spot on from my perspective. Still on this journey to see where God leads us to our future adopted kids. :)

Heather A. 9:14 PM  

I love these kinds of posts, both because it's comforting to see someone elses decision making process and to hear the day to day stuff.

Laurel 12:45 AM  

Great post, Anita. Thanks for sharing so openly. I believe it is so important for others to hear the message that we don't have to run from people with HIV.

We know a family that brought home a baby from Haiti. When they went to put the cute little black baby into their church nursery, they were told that they couldn't. Their pastor came and "gently" tried to explain to them that "you know ... others might think he has HIV". What?!! Just because he is black? Unimaginable! The baby was not HIV positive. But ... even if he was, he should have been allowed in the church nursery.

Our friends found a new church ...

So sad!

Kait 8:54 AM  

Thank you for this Anita. The biggest hurdle we've run in to with being open to a positive child is that question about the teen years. I don't have a good answer other than the one you have - all we can do is arm our kids with the information and hope and pray for the best.

Tova 2:33 PM  

Thank you for this. I found this really helpful.

All My Beans 10:17 AM  

Anita-
You are a very inspiring person. I have been contemplating adopting a child with HIV for awhile now because the need is great and the rewards are endless (as with raising any child). Your description validates all I feel and inspires me. Your dedication to uniting ALL children with their families is even a greater testament to your love and devotion.
Thank you-