No Shame in My Game

I was recently talking to a mom who was considering the adoption of an HIV+ child.  I was talking about how we are totally open about Kendi's HIV.  She very politely inquired about how we decided to come out like that.  Hadn't we thought about how she might feel when she is older?  What if she is angry with us about sharing something so private?  For a second it really stumped me.  How HAD we come up with that decision.  It seemed like a lifetime ago.  HIV is so NOT an everyday topic around here.  Then I remembered.  DUH!  It's because we're raising her to believe that there's absolutely nothing to be quiet or secretive about.  When we talk to people about it we act as if THEY are totally not with it if they don't realize that HIV is a wimpy has-been virus that has very little power in the U.S. (with meds).  I smiled all they way through this video tonight.  I hope you do too.  Spread truth!!

World AIDS Day 2011

On this, World AIDS Day 2011, I want to share with you a glimpse of truth about what HIV/AIDS looks like for most in America today. Warning: These images may shock you.

Making AIDS History

Even though I know AIDS is no longer a death sentence, I still find encouragement in seeing people who have been LIVING with HIV/AIDS for a long time. Watch this little video and see the true face of HIV/AIDS in America!

Even though these folks will live long lives with HIV/AIDS we can't give up looking for a cure!

Woo hoo! Take THAT HIV Stigma!

Visit msnbc.com for breaking news, world news, and news about the economy

The Good, The Bad, and The Ugly of adopting an HIV+ child

I just love my e-buddy Chantelle's blog! She wrote THIS POST today and I just had to pass it on. Head on over to read more truth about raising a child with HIV.

It never really occurred to me that there are those out there that think I must be keeping all of the hard stuff about HIV adoption off of the blog. For the record, I'm not! ;-) Like Chantelle said, it is so not a big deal. And I can say that, even though we've had some issues surrounding the HIV that most kids don't have (slow hair growth, g-tube, GI issues resulting from g-tube).

The other day we were getting out of the car to head in to a family gathering. It's dry in OK this time of year and I noticed Kendi's lips were all cracked. There was a big chunk of skin just begging to be ripped off. I can't STAND the look of super-chapped lips. Against much protest I ripped that sucker off! But then, her lip started bleeding. It wasn't just the typical little bundle of blood from ripped off skin--she was dripping! It was about to drip on her pretty dress so without thinking I put my finger under her lip and "caught" the drop of blood on my bare hand.

I must admit, that was a new one for me. I didn't even consider the HIV when I "caught" the blood. I saw that everybody around me sort of looked at me weird for a second (but nobody said a word). I headed over to some leaves, wiped off my hand, then headed inside (where I did wash my hands).

Am I worried about getting HIV? No. So NOT worried. Did I forget that she had HIV when I did that? Yep, totally. My point is, it is so NOT an everyday part of our lives that it's not even the top thing on my mind when there is blood in the picture. This is not something unique to my family. I hear this sort of thing from LOTS of families who have HIV+ kids.

If you want to talk about HARD stuff after adoption, let's talk about attachment and behavioral issues. This HIV stuff doesn't even have a chance of making it into the HARD category!

HIV Family!

Props to C and her family! YOU ROCK!!! LOL!

HIV Family!

Props to C and her family! YOU ROCK!!! LOL!

World AIDS Day: Dear _______________

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.

Love,

Anita

P.S. It's December 1st somewhere, right?!

Truth! It's contagious!!!

As my friend "C" says, "HIV is nothing but a scared little has been!" Unfortunately, most of the world is stuck in the 80's with their knowledge of HIV/AIDS. Think about it. Here in America in the 80's we were trying to decide between VHS and Beta, and it was uber cool if you had a huge phone (with cord!) in your car! In the 80's the first home computers were just coming on the market, at thousands of dollars. Can you imagine if your knowledge of technology hadn't progressed since the 80's. You would be embarrassed! I think you should be just as embarrassed if your knowledge of HIV/AIDS is stuck in the 80's! Use your technology to learn the TRUTH!

No more excuses! Chances are, you know someone with HIV/AIDS. Chances are, you can't tell them apart from anybody else in the crowd. Please, if you haven't already, take a few moments to educate yourself about what HIV/AIDS is today--a chronic but VERY MANAGEABLE disease! Please, if you know the TRUTH about HIV--spread it! It's contagious!

Truth Pandemic (click to learn more)

Anita
P.S. December 1st is World AIDS Day! Please consider changing your FB profile pic to the Truth Pandemic graphic on that day! Please consider spreading knowledge about HIV through facebook, your blog, and all of your email contents! You can go to the link above to get all the information you need! Together we can update the world!

Adoption Awareness Month

Let's kick off Adoption Awareness Month with this awesome article about fellow adoptive parents, Daniel and Chantelle. They are part of THE ANSWER for HIV+ orphaned children!

Dear HIV,

(Reposted with permission from GIVEN MUCH MOM. Love this!)Dear HIV,

You poor, pitiful little virus.

Once upon a time you were so big and important and scary.

People used to shutter in fear at the mere mention of your name.

But now they laugh in your face.

That must be hard to take.

I’ll give you credit though. You did succeed for awhile. And yes, you’ve still got your fear filled fingers wrapped around a few worried hearts here and there…

but though you won the battle,

statistics show that you’ve

LOST

THE

WAR.

Every year more and more families are adopting HIV+ children

and no one with access to proper medication is

DYING

anymore.

Take heart, a few still fear you,

but the VAST MAJORITY embrace THE TRUTH and KNOW what a wimp you are.

Over a million Americans have HIV and each and every one them can live FULL NORMAL LIVES

thanks to a few pills a day.

Oh, HIV…

You’re nothing but a pathetic loser.

A poser.

A has been.

… It sucks to be you, huh.

Kendi, medication progress!

Kendi has taken her "little medicine" 3 times in a row BY MOUTH! ["Little medicine" is what we call the delayed gastric emptying medicine she takes, because she only takes 1ml.] This is HUGE progress for Kendi and I am so proud of her!

She was honestly traumatized when we had to force feed her medications to her in January (before we got the g-tube). Since then she hasn't been able to take ANY medication by mouth (cold medicine, etc.). It's all gone down the tube. If the child seems a spoon or syringe coming toward her mouth she goes into trauma mode. If you manage to pry her hands away from her mouth, she will then gag and throw up. Every. Time. Until yesterday!

Yesterday I just came at her with the 1 ml of medicine while she was eating lunch. I matter of factly said, "Here ya go." and before she knew it it was in her mouth and she had swallowed. Of course we made a HUGE deal about it. And we continue to make a HUGE deal about it every time she does it!

I pushed my luck tonight when it was time for HIV medicines. No go. Not at all. I didn't force the issue and down the tube it went. I'm so very encouraged that we have made a tiny amount of progress with ANY medicine.

Way to go Kendi!

Anita
P.S. Doesn't she look like she has a lot of hair in this pic?!

One Year with HIV

Not only are we celebrating one year home with Kendi, we've also passed the mark of living with HIV in the family for one year. I thought about not even doing this post, because really there isn't much to say. It hasn't been some traumatic even to "get through." Her HIV is a non-issue 99% of the time.

September 9, 2009: Kendi was sick upon homecoming and her new Pediatric Infectious Disease doctor at Arkansas Children's wanted to see her immediately. We didn't think her HIV was an issue, but it was best to make sure. So, the day after homecoming she took her first road trip--10 hours in the car. Fun! NOT! Kendi was just sick with a virus. We learned that her HIV numbers were still very good. No need for her to go on ARV medication at this time.

December 2009: Another trip to Arkansas, just to see how things are going. Testing revealed that after 2 years and 6 months living with the HIV virus, it was time to begin ARV therapy for Kendi. She would try crushed pills mixed with food or liquid. Two medications, two times daily.

January 2010: Umm...taking medications...not so much! Kendi could not handle the bitter taste of the crushed medications. She vomited. [They are HORRIBLE tasting, mommy can confirm.] We tried liquid versions of the medications with the same results. Taking the medications was a traumatic event for Kendi. She stopped eating and drinking because she was afraid that everything would have that horrible bitter medication taste. On to plan B....or G, as the case may be.

February 2010: Kendi went to the hospital to receive a G-tube/mickey button. This is a feeding tube that we use solely for the purpose of giving her medications. We thank our lucky stars that this sort of intervention is readily available here in America, and wonder what the outcome would have been for her if she had still been in Ghana. Medication is no longer anything to fear for Kendi. She begins to eat and drink normally again. Bye-bye medication trauma! Until she can swallow pills we will use the mickey button (may take several years for her, because she now has a severe aversion to any sort of medicine).

Spring 2010: HIV is a non-issue. However, she is eating less and less. She's not just picky. She won't eat even her favorite foods. Growing concern in the mommy heart, but I try to let it go, thinking I'm being over-worrisome after Samren's issues when he was a baby (failure to thrive, couldn't eat, etc.).

June 2010: Back to Arkansas for a regular visit. Everything with HIV is fine. The virus is UNDETECTABLE! This is the gold standard for ARV treatment! There are less than 48 copies of HIV in her blood--down from almost 200,000 copies just a few months earlier. Amazing. But, her lack of eating has resulted in a lose of weight. She's back down to 20 pounds--her weight 9 months ago when she came home from Ghana. We brain storm and decided that the symptoms are most like "delayed gastric emptying." She is prescribed Reglan 2 times a day, 2 hours before her other medications (no lying--this is an inconvenient schedule because her ARVs are given at 7:30, which means we're getting her up at 5:30am to do the first med).

Summer 2010: Reglan words! It was delayed gastric emptying, probably caused because her tummy had a bit of trauma from the surgical procedure when the mickey button was put in. She is eating like a pro again, and gaining weight. She's doing so good that we try life without the Reglan, and are super happy when she continues to eat well! She gains 3 pounds and is now up to a tiny but healthy 23 pounds (at 3 years 3 months old).

Current: Her HIV continues to be undetectable--a total non-issue as long as we give her the meds on time each day. She is still eating well, although she goes through periods where we give her the Reglan for several days, when she appears to be struggling to eat. We just learned that we now have a PID doctor in Tulsa again and have plans to visit him for the first time in October! We *love* our team at Arkansas Children's Hospital, but it would be so nice to just drive 10 minutes to the doctor! We'll visit Dr. Chang and see how it goes.

Boo-boos: What about bloody noses and scraped knees and busted lips? Yeah, we've had all of those. I couldn't tell you the dates though, because they were not big blips in our day. Technically you should always use universal precautions, and we CERTAINLY have the rule that no child may touch another child's blood--ever (even the healthy kids can carry yuckies in their blood). Still, when your kid comes up with a bloody nose you act like a mommy first. HIV is second. I don't go an run to get gloves. It doesn't even cross my mind anymore. I know the (minute) risk I'm taking, and am happy to live with that (minute) risk in order for my daughter to know that mommy is there for her. Blood happens. HIV is a wimpy virus. Nough said.

And that, my friends, is a year with HIV. We consider it to have been a great success, even though we had complications that most people don't have! Lots of kids have no issues taking medicines, and certainly the delayed gastric emptying is a rare thing, having to do with the g-tube rather than the HIV itself.

Telling family about HIV (our story)

The reluctant Grandpa with his new grand daughter

Someone recently asked me if I would share about our experience telling family and friends about Kendi's HIV status. I don't think we're much of an example to follow here. Our story is sort of a mess! But maybe that's reality for lots of folks? We had one plan when we went into Kendi's adoption and were at a totally different place by the time she got home.

We had been talking about HIV adoption for a few years by the time we learned about Kendi. I think this was of benefit to our family and friends because they already knew children with HIV could be adopted, and they had heard us say that the kids generally did very well. We began the process to adopt Kendi in February 2009.

Our plan at the start was not for Kendi's HIV to be a secret, but for it to be fairly confidential (parents and our two sisters were about all we planned to tell). Our parents were the first people we told--our guinea pigs! For both sets of parents the first hurdle was to accept that we would have four children. I don't think either set of parents was too keen on us "taking on more" with Eric's health issues. When we threw HIV on top of it, it was a little overwhelming for them--or maybe a lot.

Eric's parents are the type that do not feel they can say much to us about our decisions. They don't butt into our business. Because of this it was sort of weird. They didn't ask questions! In a situation like that we sort of wanted them to ask questions, but they didn't. Instead we got comments like, "If you're sure that's what the Lord would have you do..." or "As long as you've prayed about it..." or "Well, we'll just trust the Lord will heal her." I was ready to answer a ton of questions and "defend" our case, but that's just not how it went down with them. They never have asked questions, and because of this they still aren't very knowledgeable about HIV (for instance, maybe there are only cheek kisses for Kendi).

With my parents it was a much different story. My mom and I are super close and she doesn't hold back when she has concerns. Her top concern was for me. She wanted to know why WE had to be the ones to do this. Why did WE want to add a 4th child, let alone a child with special needs? My mom asked a lot of questions about HIV and read everything I sent to her. She's a learner, like me. Before long she knew in her head that HIV was okay, but she still didn't want our family to have to deal with the stigma of it. Even with her over-protectiveness, I knew my mom would be "all in" the moment she met Kendi. She's like that every time.

My step-father was very quiet about the whole issue. I made the mistake of assuming that he was sort of like Eric's parents--just figured it wasn't his place to have an opinion. After a few months we learned that in fact, my step-dad was very much against us adopting Kendi. Not only did we not need #4 (in his mind) but we definitely didn't need a #4 with "AIDS." In addition, my step-dad had decided that if Eric and I didn't tell the rest of the family HE would--in order to "protect" his children and grandchildren. He felt that he had a right to tell them.

As you can imagine, my step-dad's reaction was not okay. It was at that point that Eric and I are asking ourselves how we are going to respond and why we even told ANYBODY. After all, they should have seen it as a compliment that we shared this with them at all. He absolutely did not have a right to share Kendi's medical information with anybody else. And it was super sad that he didn't yet believe that she was of no harm to anybody. He had read all of the stuff my mom had. He just didn't believe it. He was stuck in 1989, along with most of the population of the world where HIV/AIDS is concerned.

What do you do at that point? This is when, as a parent to a positive child, you start getting yourself psyched up to potentially cut people out of your life. Eric and I felt (feel!) that if people refuse a relationship with Kendi, we must refuse a relationship with them. She comes first.

The whole time during Kendi's adoption Eric and I wavered back and forth about how open we wanted to be. I wanted to educate people about HIV. Eric wanted to protect Kendi's privacy. I wanted her to learn from the start that there was NOTHING for her to be ashamed of--no reason to keep a secret. Eric wanted her to learn from the start that nobody had a right to her private medical information unless SHE chose to share it.

The next widening of our circle of trust came when we shared Kendi's status with our sisters. My sister is an adoptive mom of a child with special needs. It was a no brainer that she would be on board from the start--and she was. Eric's sister (and her family) were MUCH more difficult. She was not immediately accepting and was very protective of her brother (Eric). Her main concerns were if Kendi could be a danger to Eric (no), and she didn't really believe the material we gave her. She found her own information that (she felt) indicated that Kendi could be a risk to Eric and our other children. I don't want to give the impression that we had some sort of fight with Eric's sister and her family. Not at all. It was just clear that not everybody was sold on the idea of Kendi.

So at that point, on both sides of our family, we were left with private discussions about the decisions we would have to make if people violated Kendi's rights or did not accept her. Not fun. Over the next months we kept educating...kept showing pictures...kept telling stories...even if they didn't want to hear it we kept talking and sharing.

We went to a church that was small and didn't practice universal precautions. Because of that we felt it was important to share with our pastor that Kendi was HIV+ and that the church needed to begin using universal precautions (they needed to do this anyway!). I won't go into that long story here, but in the end more people knew about Kendi's status than we intended. It was beginning to feel like EVERYBODY knew.

I'm just not a secret-keeper. And when too many people know a secret it's going to get out. It was at that point that we decided to share Kendi's status with my oldest step-sister. She is definitely the leader of my four step-siblings and I figured if she was supportive, the others would (at the very least) keep any negative thoughts they had to themselves. When we sat down to tell Amy she was like, "Oh, I know." What?! Well, she just figured that since we had talked about wanting to adopt an HIV+ child in the future that Kendi was HIV+. It was no big deal to her AT ALL.

With people at church knowing...people in the adoption world (rightly) assuming...and our immediate relatives having been notified, I no longer saw any reason to stay quiet on the blog. I "came out" on the blog (and facebook). My blog and FB are open to anybody in my family, so this was a way of telling them without telling them. It just became general knowledge, but at the same time nothing that we had to have a big meeting about. We never had an HIV discussion with any of our neighbors, friends, or extended family. It's not a secret, but it's not mentioned as a point of light discussion either. If they need to know (sleepover, babysitting etc.) we tell them. If not, we don't.

And my step-dad? Well, Kendi came home. HIV was no longer a "thing" to him. The face of HIV is now his granddaughter, whom he loves fiercely. He backed off of his plan to tell the rest of our family. We've never had another conversation with Eric's sister about HIV, but I know that she and her family also love Kendi dearly. There are probably still some misconceptions about HIV, which we address whenever they become apparent. Over all, Eric's sister would now be as protective of Kendi as she was originally protective of her brother Eric. =-)

That's our story with telling family about Kendi's HIV. It's not neat and tidy. It doesn't fit into a box. It all evolved well over time despite a few bumps in the road. We've not had to exclude anybody from our life and don't expect that will ever be the case. If we had it to do over again I think it might have been easier if we would have waited until Kendi was home and loved before we disclosed her HIV to our family. Then again, we would have lost all of those months during the wait when lots of hearts were softened. I guess it's just another situation where there is truly no right or wrong.

Blog Series on HIV Adoption

Rachel over at HEIRS WITH CHRIST is doing a 5-part blog series on HIV adoption! If you're contemplating the adoption of an HIV+ child, or just want to know more about it, don't miss her series. =-)

Rachel asked the other day if I would do a detailed post on our experience with sharing about Kendi's HIV with family and friends. It's on my list R!

Anita

Awkward!!!!!

Very rarely do we have any awkward moments with regard to Kendi's HIV. I'm (obviously) open on this blog and we've told most everybody in the family that we care to tell. However, on Saturday we went to a swim party for my kids' second (step) cousin. My children have never even met the girl. At the party were other (step) family members that we really don't spend much time with and would have no reason to know about Kendi's HIV status.

Kendi was in her swimming suit. Swimming suits don't really do much to cover a mickey-button (g-tube) so an aunt asked us what it was. Eric's dad responded that it was a tube that we put medicine down because Kendi vomits when given medications orally. The aunt asked, "What is she taking medicine for?" Eric's dad, myself, and Eric all sort of looked at each other for a second before Eric's dad says, "To keep her healthy!" That wasn't going to fly with this particular aunt so she asked again what the medicine was keeping her healthy from? Another awkward silence. I sort of whispered under my breath that we could say Kendi has an infection in her blood, but Eric was NOT going for that. After a few second Eric's dad said, "Oh, it's just some medicine she has to take." then he very smartly turned the conversation back to the tube saying, "She can't take any medicine without throwing up." The Aunt let it go at that point, obviously not very satisfied with the answers she got, but also knowing she wasn't going to get the info she wanted. If I remember right this Aunt flat out asked us if Kendi had AIDS when she came home (you know...because she's from Africa and African kids have AIDS). Of course we could honestly tell her NO she does not have AIDS, because she doesn't!

The whole thing was just a little blip on the radar screen of life. No big deal. But it was sort of weird to have a question stump us after 10 month of her being home. How would you answer, "What does she take medicine for?" without telling an untruth but also without revealing your child's HIV status?

Anita

My Sentiments EXACTLY!

This mom nailed it. She nailed it! Sometimes I try to think of reasons to write about HIV and HIV adoption and how it specifically affects our family. Our experience. Except that it's such a NON-ISSUE, that it's hard to think of anything meaningful to post about! Check out why it's a non-issue HERE.

Kendi Medical Update

We got some GREAT news a few days ago! Kendi's HIV viral load has gone from 106,000 to 300! Only 300 copies left of that nasty virus in her little body! We fully expect that in the next month or so she will be "undetectable." [That basically means that she will have 1-50 copies of the virus, which would result in a negative result on your every-day HIV test. The copies would be too few to be "detected." She will always be positive, but they have to use a more sensitive test to get a positive result.]

Other good news is that her liver enzymes are all coming back down to normal. No Hep B. No Hep C!

She's got a pretty low count on vitamin D, so we started supplements for that (when good 'ol fashioned sunshine didn't do the trick). Problem is, she can't stand the taste of the vitamins and has started vomiting them. The g-tube doesn't do a lot of good when she vomits vitamins (and the meds she took earlier)! URGH! Super Nurse Nancy and Amazing Dr. S are working to find a solution there. Hoping there is a liquid form vit D supplement she can take so we can just push it through the tube.

That's the low-down on Kendi. She's doing awesome. We are so blessed to be in a country where she can get such amazing care.

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

HIV Patience have Normal to Near Normal Life Expectancy

I love articles like this. I can't wait to see what my great-grand babies by Kendi will be like! ;-)

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