Tuesday, August 26, 2014

the sacred and awkward moments of motherhood and Christian community

Our church is dear to us. My heart breaks when I hear stories from other mamas who have not found their churches to be havens of support through the ups and downs adoption or special needs.

Providence family, thank you for loving us well.

Never have I felt that love so profoundly as this past week. Friends checked in on us about Robbie's seizures, which have started up again, probably because of the excitement of school starting (a good sort of stress, but a neurological stressor nonetheless). And then, this past Sunday...

Yes, Patience was baptized while Robbie threw a tantrum in the background. Sacred meet awkward.

Before I go into the details of the day, let me provide a little background, especially for those of you who don't come from a faith tradition in which baptism by immersion is the norm. I didn't grow up that way either, so I totally get where you're coming from. In elementary school, I remember seeing my best friend's baptism pictures, also in a pool instead of a church, and I thought, "Those people are crazy," and "How can something so sacred be done in such a pedestrian place?" For me, coming from a Lutheran high church upbringing with robes and acolytes and gold-plated baptismal fonts, a pool baptism seemed weird, disrespectful, and maybe even a little cult-like.

Just being honest.

In my childhood church, babies or young children were baptized and then the rites of first communion and confirmation are steps taken as children grow into their own Christian faith. In biblical terms, that church treated infant baptism much like circumcision was for the Jews and then the later rites are like baptism and discipleship in the Bible. In our current faith tradition, parents dedicate their babies or young children to God before the congregation and then we practice what's called "believer's baptism" in which baptism only happens after a child or adult has accepted Christianity as their own. As such, baptism doesn't make anyone a Christian but rather it serves as a public profession of what God has already done in the heart of the person being baptized.

While we praise God that Patience knows God in a real and personal way, we also know that Robbie isn't yet at that place... thus his tantrum in the background of all these pictures as he cried that he wanted to be "bathamatized" too and insisted during one song "but I have been washed in the blood! Really, Daddy!" (which was kind of creepy to hear come from his mouth because he doesn't understand metaphorical language yet).

Once again, I say: sacred meet awkward.

Which is kind of the definition of motherhood, I think.

Because believer's baptism in the Bible was done by immersion, that's what our church does.

(I grew up calling it dunking. I still do most of the time. The word immersion is a bit highfalutin, don't you think?)

The reason behind dunking is the Christian belief that we were spiritually dead in our sin but have been given new life through the grace, mercy, and forgiveness extended to us through Christ's sacrificial death on the cross. As such, going under the waters of baptism symbolizes dying to sin and identifying with Christ in his sacrifice for us,

while rising out of the water symbolizes rising to new life and identifying with Christ in his resurrection.

The hugs afterward aren't part of the sacrament of baptism but rather the sweetness and love our church family has for our kids.

Once again, thank you for loving us well.

"We were buried therefore with him by baptism into death, in order that, just as Christ was raised from the dead by the glory of the Father, we too might walk in newness of life." Romans 6:4
"having been buried with him in baptism, in which you were also raised with him through faith in the powerful working of God, who raised him from the dead." Colossians 2:12

Do I still think it's weird to have such a sacred moment in the same pool where the kids splashed and played during their week at summer camp? No, not really. After all, the Philip in the Bible baptized the Ethiopian eunuch in a body of water they were passing on the road. It's not about the place but the purpose.

Immediately after her baptism, Patience and Jocelyn ran to each other and embraced in the water. I didn't have my camera ready for that, so this is the best shot I managed.

This unplanned moment meant Jocelyn, who didn't have a change of clothes, rode home wet.

Sacred meet awkward.

Then one of the pastors led us all in prayer at the end, and Zoe bowed her head and folded her hands as she's learned to do during family prayer times. Philip wasn't paying attention to the pastor, and he started tickling Zoe and messing with her. She lifted her head, yelled "NO!," slapped Philip in the face, and shouted, "Pray!"

Finally, in the last intersection of sacred and awkward of the night, we didn't stay to celebrate with our church family because school started the next day and showers & bedtime routines took priority. Patience doesn't like people to make a big fuss over her, so it was probably for the best because I know mine weren't the only teary eyes poolside.

So I'll end this post as I began it:
Thank you, Providence family, for loving us well and celebrating with us. 
(Even though we didn't stick around to let you celebrate with us in person.)

Friday, August 15, 2014

why I press on when I can hardly bear it {on #Ferguson, Ebola, & my own racism}

Y'all, some days I just can't even bear it.

As much as I love technology, lately I've found myself longing for the days in which it didn't exist and I wouldn't know about another unarmed black man being killed or the loss of another life to mental illness or the death of more people to Ebola or the persecution of many people groups (including, but not limited to, Christians) in the Middle East.

But we need to know. 

Let me step back for a moment, though, to share a different story, one from my small life that I think fits in the context of the bigger stories being discussed today.

Two weekends ago, a rainy Saturday morning found our family at Monkey Joe's. We had our Groupons printed and our socks on, and our party of eight was all set for bouncy house fun. As we pulled up, though, I felt my chest tighten as I noticed that everyone else in the place had much darker skin than I do.

I hate to admit this, but I thought, "Next time, we'll go to the one in Cary."
You know, the whiter suburb.

But we unloaded and filled out waivers lest my crazies ended up injured and tucked our shoes into cubbies and let loose. And as our time in that packed play place wore on, I was convicted.

As I chatted with the black mama sharing our lunch table, sharing words in between pages she read on her Kindle, I was convicted.

As I saw my children light up when they pointed out other little boys and girls who fros and twists and mohawks like three of our children were wearing, I was convicted.

I was convicted and ashamed as I realized the assumptions I had made, the ingrained attitudes I felt, and the judgments I passed about a group of people who mostly resembled three of my children more than me. As I shared with a friend in response to the events of Ferguson, Missouri,
"I thought I understood, but I didn't. Not until I became a mama of a black boy who will one day - God willing - grow up to be a black man. Stories of Trayvon and Michael Brown and John Crawford and others like them mean more to me now, and I'm ashamed that they used to mean less. I know many mothers battle anxiety about the future for their kids, but that's never been a temptation for me... until raising a black boy and having my eyes opened to so much of what that involves. Oh, my heart."
The next time we go to Monkey Joe's - after all, we have at least 2 more trips of Groupons to use - it will be that location again. Next time, I will see the beauty in diversity and the blessing in differences. Next time, I will know better and be better because I was willing to let God convict me of an ugly part of myself where racism and prejudice dwell even though I'd like to say I'm better than that.

I'm not.

I don't think any of us are.

When I think about Ferguson, I can't help but think about the Ebola outbreak in parts of Africa. What does it say about us that few people here knew or cared about the deaths in Liberia until the virus was contracted by someone who, for many Americans, was raised like us and believes like us and looks like us and has the same passport as we do?

Does a white life matter more than a black one?

I've been following the outbreak for a few months because of a friend in the area, but Ebola didn't break into my news feed until a white Christian American got sick. I'm uncomfortable with that, because my God cares just as much for the sick Liberians.

God cares as much for my black son as He does for my white one,
my son from Africa as much as my son from America.

photo of my boys by Rebecca Keller Photography
He loves them both.

And so do I.

On the days when I can hardly bear it all, I press on for them. And I write on for them too, even owning my own ugly places, in hopes of making the world - and myself - a better place for them.

Monday, August 4, 2014

Undetectable: The word every HIV affected person loves to hear

A couple weeks ago, while seeing our child's pediatric infectious disease team, we received wonderful news: UNDETECTABLE. In the latest blood test, our child's HIV viral loads were undetectable.


This is the goal of treatment, I know. But knowing that intellectually is very different from feeling it emotionally when you see the lab results and hear the word. Glory.

Most readers of this blog aren't members of an HIV affected family, so let me back up a bit to explain. The two blood tests for HIV are CD4 counts and viral load counts. The first measures immune system function, the higher the better, while the second measures the number of copies of HIV per milliliter of blood. When our child came home, that CD4 count was dangerously low while the HIV count was high. Over time, the CD4 count has been improving as our child gets stronger and healthier, and the viral load has been dropping.


We don't have to been seen again for a few months, but the nurse calculated a next weight benchmark for medication adjustment because our child might gain enough pounds before our next appointment to warrant a dosage change. HIV can, among other things, stunt growth, and that was true for our dear one. Reaching undetectable viral loads means a major growth spurt is right around the corner.

Technically, undetectable means - at our lab - less than 40 copies of HIV per milliliter of blood. But to give you some scope of what that means beyond the anticipated growth spurt, here's a snippet from a news story on the reported findings so far of a multi-year study of sexually active serodiscordant couples (that is, couples in which one partner is HIV+ and one is HIV-):

When asked what the study tells us about the chance of someone with an undetectable viral load transmitting HIV, presenter Alison Rodger said: "Our best estimate is it's zero."

In this study, undetectable is defined as less than 200 copies of HIV per milliliter of blood, whereas our lab's definition is a little stricter. In two years so far in the study, the 1,100 couples have recorded 44,400 instances of unprotected sexual activity. In those 44,400 encounters, the only precaution against HIV transmission was the HIV+ partner taking ARVs and having undetectable viral loads, just like our child. The result? No transmissions of HIV occurred among those couples as a result of their sexual activities.


Our child wasn't a threat to any other child before reaching undetectable viral counts, because HIV is only transmitted by sexual activity, breastfeeding, or shared blood, as in transfusions or reusing syringes. Childhood accidents and spilled blood have never transmitted HIV - not in a home environment, not at school, not on the playground, not in the NFL or NBA or any other sports environment. But eventually our child will become sexually active, so this latest research is very good news to us, especially in light of our child's undetectable viral loads.

So what do we do now?

We'll continue to stick firmly to our child's medication regimen, because that's what will continue to suppress the viral load. We'll keep sharing the truth about HIV, in hopes that the world will be a less ignorant place by the time our children are adults.

And we'll celebrate, because undetectable is definitely worth celebrating.

Wednesday, July 23, 2014

I love my modern village.

Just this week, I've seen a HuffPost Parents piece pop up again and again in my newsfeed, lamenting the loss of village-style parenting in our modern world. To that, I say, "Hogwash."

Even if we assume that the village always functioned in the romanticized manner she described, I'm happy to wrap myself in my online village. In that archaic village, for starters, I wouldn't have the rich opportunity to connect with as many families like mine: transracial adoptive families (and adoptees or first parents who round out the adoption triad), special needs families, other parents with HIV+ children (in private groups I can't link to, for the sake our our children's protection), and so on. Our daughter Zoe will have a potentially life-changing surgery in St. Louis in October, and I would never have known about that from a local village without more global connections. Furthermore, she and I will stay with one online friend and her family while we're in St. Louis, and we have a back-up option with another Facebook friend.

I promise, Mom, these friends are safe. Don't worry!

Beyond that, though, I know I'm not alone in making a mothering village out of Facebook. Just as the HuffPost blogger wrote about "doing the washing side by side, clucking and laughing hysterically, tired in body but quick in spirit," I find myself checking in online with other mamas, near and far, in between filling my modern washer and dryer (which, after washing by hand for six weeks in Uganda last fall, I will not take for granted again). Even as I get frustrated at times at all the lack of listening and lot of yelling online, I don't buy that those same behaviors wouldn't be present in the village too, even if they would be much less public.

Here's how my village works. I posted, with great vulnerability, what I was feeling on Monday without any pretense or facades.

What happened? My online village rallied with likes to affirm that I wasn't the only one and comments, messages, and texts to encourage me in this mothering work. A fellow mama of many whose youngest is about to turn 18 asked if she could bring me Starbucks and then stayed to join in the sorting, folding, and hanging of little girl and boy clothes, making heaping baskets seem far less daunting as we tackled them together. A couple friends asked if we needed food (after all, that's how we show love here in the South) and  another - after seeing a couple posts on Instagram about our summer colds - offered to run an errand or two if that would help.

Does Fakebooking happen online? Yes. Does wearing a mask and pretending all is well and then crying in the confines of your own house or hut or tent happen in the village too? Yes.

Community doesn't have to be the village. Community can be an online forum or a group of adoptive parents at a guest house in Uganda or the passing conversations in the halls of the elementary school as we meet the teacher and drop our children in classrooms and head off to homes or jobs or the discovery of who we are as women after the years many of us spend primarily as moms with little ones underfoot until they're school aged and we're not quite sure how to fill our days without those grubby hands ever present. Community is a homeschool co-op or a Bible study group or a series of group texts. Community can be Twitter or Facebook or blogs, and community can be coffee shops and laundromats and mealtimes.

I refuse to buy into the notion that present day villages can't be made, that community evaporates in the presence of doors that lock and machines that wash clothes and other modern conveniences, and that today's motherhood has to be as isolating as that HuffPost blog writer describes.

What would our parenting experiences be like, I wonder, if instead of wistfully waxing about the village of days past, we chose to create our own modern villages using the technology from afar and touches near that this day and age has to offer?

Sunday, July 6, 2014

U-NEEKs: Uniquely crafted and loved, just like each of our darlings

Obviously, our family is unique, so when I heard about the U-NEEK line from Dayspring of toys, apps, and gifts for children, my curiosity was piqued. Even more so when I saw the tag line from Psalm 139: "fearfully and wonderfully made."


Jocelyn and Patience have Jazz and AllieBird, who are purported to be best buds respectively with Robbie's Indigo and Philip's Mustachio, according to their tags. (Mustachio's tag also offers the nickname of Bubba, which rolls off Philip's lips more comfortably, so that's what his green guy goes by.)


Patu has Dweeber, and anyone who knows us in person needs to ask her to say Dweeber. Seriously.
Because three year old pronunciations are awesome, and because laughter is good for the soul.

Zoe has Splat. She only has about 40-50 words she uses regularly, and one of them? "Plat." Heaven help the person who tries to play with Splat! This weekend's "NO!" and "bad Patu!" from Zoe were the result of that sort of attempt from her sister.

Each stuffed U-NEEK is only slightly larger than a Beanie Baby or Beanie Boo, making them handy to bring on a roadtrip or tuck into bed with a sleepy little one. Our little ones didn't care much for the tags, but Jocelyn and Patience are obsessed with knowing the backstories for each of our little Dayspring friends. That curiosity includes an insistence on learning each U-NEEK's Bible verse, which makes for 6 newly memorized verses for the girls - a huge win in hiding God's word in their hearts, don't you think?




I didn't let them bring their U-NEEKs in, but last week's trip to the aquarium and the beach included comfy, cozy companionship in each child's car seat, showing our kids' unique love for each of their fluffy friends.

As for my take on them, the only downside is that the girls' notebooks show that we're missing two of the U-NEEK collection, so I hear, "When are we going to get Wally and Trysta May?" every so often.

Hmm, maybe I have some chore completion incentives here... 

Sure, these are simple stuffed animals, but my precious ones love them and - at only about $9 a toy - they're a cheap investment to turn little hearts toward God's word and the truth that each child is uniquely, fearfully, and wonderfully made.

From now until July 14, U-NEEKs are available at Wal-Mart and Hobby Lobby, so you don't have to take my word for it - go check them out in person yourself. And maybe I'm the only crazy one who is already thinking of Christmas, but I'm picturing U-NEEK creatures as perfect stocking stuffers.

This post was sponsored by Dayspring with $50 of U-NEEK merchandise provided to us, but my opinions as well as the pure child-like joy from our six are all our own.

Thursday, June 26, 2014

"horribly devastating?" no.
a life worthy of love.

We're coming up on the two year anniversary of our trip to Taiwan to meet Zoe and finalize her adoption and return to the US to join with Robbie and Jocelyn as a family of five.

Expect loads of "two years ago today" posts on Facebook and Twitter, thanks to my addiction to TimeHop.

What I've been reflecting on lately, though, isn't what happened two years ago but how much God has used Zoe's arrival in our family to shape me and Lee. I don't talk about this part of her story much, but her records from Taiwan were pretty hopeless looking. Upon reviewing her MRIs and medical reports from Taitung, several prominent neurologists around the country agreed that she had little potential to move, think, or communicate like a typical person. Why so many doctors looking at her file and weighing in? Each one did so for different families who each subsequently passed on the opportunity to adopt the baby girl called "Jesse" back then. The last doctor to review her medical information recommended against her adoption, saying she would be "horribly devastating" given how extensive her brain abnormalities were and how all-encompassing her cerebral palsy would be.

Yes, that little girl in the middle right there:

I'm flooded with adjectives and emotions to describe her, but "horribly devastating" is not one.
Not even close.

Many of you know this story already, but it bears telling again. On the eve of Jocelyn's fifth birthday, a friend sent me a Facebook message. She knew we planned to adopt a child with special needs someday, and she tripped over her words a bit as she shared about a baby girl in Taiwan whose future was unpredictable and who needed a family. We said we'd pray about it, not because we intended to pray about it but because we thought that was the church-y answer to give instead of saying no right away. It was a Saturday night, and we planned to reply on Tuesday with a list of reasons why we weren't her family. "We'll pray about it" was merely a stall technique and not an honest answer.

Then on Sunday or Monday night, Lee rolled over to me in bed and said, "Maybe we should actually pray about it, because we said we would." He quickly followed with, "I mean, I know the answer, but..."

So we prayed.

And God moved our hearts from a hyper-focus on all the reasons it didn't make sense to an assurance that our small faith in a great God was enough to say yes, even when the answer didn't seem to make sense.

You know the rest of the story. It led to a tiny prayer room in a hospital in Taitung where we met a very ill eight month old who was discharged from the hospital into our care a couple days later, to fly to Taipei for her visa and then through San Francisco to land in Raleigh, meet her older siblings, and then head to see US doctors within hours of our arrival.

Jet lag, I'm certain you had those doctors thinking we were INSANE. Because we were, kind of.

But I like to think we're the best kind of crazy.

As a response to the doctor's condemning words and the heartbreaking reality that many families had said no before she crossed our paths, we chose a name for her that would speak truth: Zoe Amanda. Zoe means life, and Amanda means worthy of love, and really, truly, absolutely she is a life worthy of love.

What one doctor described as "horribly devastating" is one of the greatest blessings we have ever known. I don't have the time to list them every way she has improved our lives, but our days are richer, our faith is deeper, our mealtimes are funnier, our circle of framily is wider, and our world is better because we said yes to God when He led us to her.

I'm always caught off guard when people say that she's lucky. She's not, y'all. It's us.
We're the lucky ones. 

Tuesday, June 24, 2014

on the horizon (maybe) for Zoe

Update: On June 27, 2014, we got word that Zoe is indeed a good candidate for this surgery, so we'll be scheduling it soon and moving forward. Even though we have more answers now than when I wrote this, everything in this post still expresses our heart for our girl...

I need to start by making one fact perfectly clear: Zoe is loved exactly as she is, and nothing she might be able or unable to do in the future will change that.

That said, there's this surgery called selective dorsal rhizotomy (SDR) that could be a game changer for her if she's a good candidate. And as I write this, her packet of medical information is on the desk of some folks in St. Louis who will are responsible for the "if she's a good candidate" decision.

Cue the nerves.

I wasn't planning to write this post until we had an answer, but given that most people who have asked about Zoe lately have been treated to way more details about this than they were asking for, I figure it's time to put this out there.

Before I dive into the surgical details, let's start with the obvious question:
Why St. Louis when we live in North Carolina?

A few pediatric neurosurgeons in our state do this procedure, but none specialize in it and none have many years of experience with SDR, based on my research. SDR is a big deal, and I want a specialist and not just a hobbyist if my daughter is on the other side of their scalpel. The surgical team in St. Louis is world renowned: This is what they do, and they do it well.

Furthermore, most SDR surgeons wait until age 5 or older for the surgery, whereas the St. Louis team prefers for patients to be young, around age 2 to 4. At 2 years and 8 months old, Zoe's in the ideal range. They do plenty of SDRs on older, even adult, patients but they've found that orthopedic complications from cerebral palsy can be reduced if the procedure is done earlier in a child's development.

Finally, the St. Louis team is picky. They tell plenty of families, "No, your child is not the right fit for this." They do evaluate children without seeing them in person, but they require MRIs, hip and spine x-rays, videos of a couple dozen physical tasks from multiple angles, a physical therapist's evaluation, and a few extra bits of paperwork.

In other words, a lot of documentation... unless you've completed two international adoptions in the past two years, in which case this paperwork is NOTHING compared to the reams you've completed and had notarized, apostilled, translated, and shipped to the other side of the world.

Oh, and our insurance will cover it, even though it's not in our state, because (a) a doctor in the BCBS of NC network referred us and (b) the team in St. Louis is a BCBS provider for a different geographical area. We'll cover costs for travel, lodging, and our portion of post-surgery therapies (as physical therapy is limited in most insurance plans, including ours), but the bulk of the expenses will be covered.

So what's SDR?
First, let's define cerebral palsy. In CP, brain damage or under-development occurs in the womb or not long after birth. These abnormalities makes their brains communicate the wrong messages to muscle groups. For Zoe and many other kids, the result is spasticity: tight group of muscles that they have to fight against to make the movements the rest of us take for granted.

Remember the last time you had a charlie horse? You know, those annoying muscle cramps where your calf or another muscle gets really tight out of nowhere and it can hurt really bad? Well, that's life for Zoe, except she's usually just a little uncomfortable by her degree of tightness rather than being in that much pain.

In SDR, a patient's back is opened up to reveal the spinal cord, nerves are tested to determine which ones are contributing to muscle spasticity, and the ones that are the most severely causing spasticity are severed permanently. Here's all the details, if you're into that sort of thing.

Now you're grasping why we don't want just any doctor to do this for our girl...

In the right hands, this sort of surgery can dramatically improve the mobility potential for people like Zoe with severe spasticity. Sitting on her own without support, using her walker more than her wheelchair, becoming more independent in general... all of those are realistic outcomes for her if Zoe is able to have SDR.

So, for now, we wait to find out if she's a good candidate for it. 

If she is, we schedule it and figure out how we'll manage me and Zoe going to St. Louis for a month for the surgery, in-patient recovery, and out-patient rehab program, all while Lee and the other five probably stay put here in Raleigh.


I don't do that well.

I think that might be why God keeps giving me more and more opportunities to practice.

If the answer is yes, we'll praise God and figure out the logistics of what's next.

If the answer is no, we'll praise God and figure out the logistics of what's next.

Because whether this surgery is a good option for her or not, we love our Zoe girl no matter what.

Yes, that is her big brother helping her eat with a spoon at a family tea party, and yes, the picture is slightly blurry because I couldn't hold my hands steady as I melted at the preciousness of the moment. LOVE.

Monday, June 16, 2014

our summer schedule for schooling and sanity

Yep, school just ended last week, but my kids aren't getting a break.

Go ahead and call me cruel if you want. I don't care.

Jocelyn is right around grade level for reading and ahead in math, while Patience is behind in everything considering she only came to this country in November. To keep forward momentum for the girls as they head toward 2nd grade and to prepare the boys for kindergarten, we needed a plan.

Structure? Not my strong suit.

Good intentions? I'm all over those... while consistently inconsistent on my follow through.

So I took a note from a viral blog post I saw on Facebook, something about giving kids unlimited screen time after they've finished a list of tasks for the day. Cue our list...

Because our printer likes to pick her own colors, the actual page - which I printed and laminated and hung with 3M foam squares on the big girls' bunk beds - is in different colors, but I like the look.

My goals were to keep the girls reading and writing and working on math, while getting them to engage their siblings in reading, basic math, and phonemic awareness. I posted it on the last day of school and told the girls we would start the next day, so naturally they wanted to start that day.

Here's hoping they follow the plan this well every day!

Meanwhile, I just have to hold them accountable and pick out daily math pages for them to complete.

Low effort: that's my style.

I've already written about the magnets and zones (if you'd prefer not to click through, it's our chore system), so I think the only piece requiring explanation is the boxes. Most are made by a company called Lauri, and they're ready-made manipulatives for building early math and literacy. I think these pictures will show the finer details, but feel free to comment if you have any questions.

For Jocelyn, this will be a time for her to teach the brother she's working with that day. For Patience, she and her bro partner will be learning together for some of these.

Jocelyn and Patience are also reviewing spelling from 1st grade, using the 45 spelling lists they had last year; that happens during afternoon rest time (aka nap time for the little girls). In particular, we're focusing on vowel sounds for Patience, as those are the most challenging for English language learners, and going through three lists a week. I have a few workbooks we're also using from time to time, like cursive for Jocelyn and handwriting practice for the boys and reading comprehension for Patience.

Will this work? Eh, I don't know.

But it's a good plan to start with, and - with the exception of the week our oldest four will spend in day camp at New Life Camp - it'll work no matter what else is going on that week, even through VBS and a roadtrip to see some Alabama friends. Today marks our fifth day, given that the girls wanted to start on the last day of school and that I decided not to stop them when they decided the rules applied on weekends too (which wasn't my plan, but shh! don't tell them now), and all is going quite well.

Here's hoping for continued summer success! 
(And a lot of fun too... I'm not a total vacation killjoy, after all.)

Friday, June 13, 2014

HIV FAQ: Why did I do this series of posts?

For the final post in this series, I want to thank y'all and leave the door open for you...
I don't have any specific questions, but acknowledge my ignorance when it comes to HIV & am looking forward to reading your blogs. Thanks for educating me!
This series might be over, but I want to leave the door open. Please, keep the questions coming. Please, know that we are approachable. Please, understand that we will only be hurt or offended if you come to us with rejection before you've ever asked a single question about HIV.

One of my favorite moments in this journey was when a friend at church pulled me aside before Bible study, concerned about her daughter's busted lip. She didn't know which of our children has HIV, and she knew one of our kids was in the same class as hers. She told me about the situation and then said, "So I can't put a bandaid or anything on it, because it's her lip, but it's a wound, so is there anything I need to know to keep her safe from HIV with an open wound?"

I love so many things about this.

First, I love that she was comfortable talking to me about it. Second, I love the opportunity it gave me to explain that childhood boo-boos have never transmitted HIV. And third, we hugged and moved on, like two moms who were discussing any typical childhood concern for their kids.

I bet she doesn't even know that I cried later, so grateful for such a sweet and positive encounter.

We want to keep educating, so please, please, please let us do that.

Many of you know that the Today show featured an online article on HIV discrimination featuring our family. Here's an update: those friends have read what we've shared and done their own research, and now? They're not afraid of HIV anymore. We're moving toward that happy ending that we hoped for.

God is truth, and God is love. And? "There is no fear in love, but perfect love casts out fear." (1 John 4:18)

That's why we lovingly share truth about HIV.

Thursday, June 12, 2014

HIV FAQ: What about when your child is old enough for dating and sex?

Oh, goodness. This is a topic I think about a lot, but I'm nearly breaking out in hives at the thought of blogging about it, because (a) SEX! and (b) MY CHILDREN ARE ALL AGE SEVEN AND YOUNGER, FOR THE LOVE!

But these questions are totally valid and might be helpful to some readers, so here goes...
This is in the way future, but how will you handle discussions about sex? What will be the same and what will be different?  
What do you plan to teach your child about dating relationships? Like, when should they disclose? Up front or after some time?
How will you address HIV as your child grows and possibly becomes sexually active? That can also be an age of children rebelling against parental advice. My child is HIV+, but she is an adult. I know you know her story: nogoingback-thereisonlyforward.blogspot.com Please feel free to share her blog with your readers. Now going into our third year living with HIV, we barely think of it after the horror of our first reaction to hearing that diagnosis. Life is just normal now.  
How do you educate the HIV+ child about protecting others from infection? (ie informing a school nurse or friend's parent if they skin their knee and need bandaging)  
First, to answer that last question, HIV isn't transmitted via skinned knees, so you might want to read this post: How do we keep other kids from catching HIV? But I included the question because issues of dating and sex are all about protecting others from infection.

Honestly, I can't answer most of these questions. Not because I haven't thought about it, because I have. OH, HAVE I! But I know from friends further along in this parenting journey that "the talk" with each child is different, depending on age, personality, and maturity.

When it comes to the stage in relationship that disclosure should happen, that's not a decision we'll make for our child. We'll talk about it, but that's a personal decision and not one Mom or Dad can make.

As with any parenting stage, we'll draw from resources available to us, including the AMAZING folks we have in Duke's pediatric infectious disease team. One is a social worker whose job includes helping us navigate these challenging topics. I expect that Rachel and I will have many conversations about sex and HIV in the future.

Finally, I'm optimistic that more and more medical advances will be made before our child is ready to be sexually active. That's the biggest reason why I can't answer how we'll talk about it then, because I simply don't know what the facts will be then. Already in the six months since we've been home from Uganda, new advances include:

All of those advancements were reported in 2014. We are hopeful that this trend will continue so that, perhaps, our dating and sex talks with our child who has HIV will be no different because of how far modern medicine has brought us by then. 

Wednesday, June 11, 2014

HIV FAQ: How do we explain HIV to our child who is positive and our other children?

Is your child aware they are HIV+?
How do you approach the topic of HIV with your child, especially as they get older?
I am not sure how old your child with HIV is but we are waiting to go to court to adopt [a child who is 15]. We have not talked to her yet about her illness and we are worried about that conversation. How she feels about it? Is she scared? Does she want to talk about it at all!! How did you do this? 
How do you plan to equip your positive child to face the world unashamed?  
Yes, my child is aware, as much as he/she can be at this age.

In Uganda, HIV was already a familiar term. Whenever we went to the doctor there, it was explicitly called "the HIV clinic" there. Our kids knew that HIV was the reason others in their family and community had died.

Did they understand what HIV was? No, not really. But no kid really can.

Early on, our biggest priority was explaining that the medication our child takes daily would lead to life. Our kids had the impression that HIV = death so we had to re-write that story for them to dispel fear.

As far as other conversations go, all six of our children are 7 and younger, so we talk about how one has booboos on the brain (cerebral palsy) that she needs therapies and other helps for and another has booboos in the blood that require daily medicine. In Uganda, HIV was talked about openly, so they had been exposed to the term, and the head of infectious disease at Duke (where we go) recommends talking about HIV from an early age and adding more details over time. For now, we talk about how the medicine keeps the booboos from making our child feel sick, and the booboos can't make anyone else sick unless they share blood or private parts.

When it comes to helping our child live unashamed, that's part of why we chose to disclose about HIV instead of keeping it a secret. I feel like it's hard - but not impossible - to tell a child, "this is nothing to be ashamed of, but don't dare tell anyone."

More than that, though, we teach all of our children that differences are important. Differences - in health or ability or appearance or anything else - make the world richer, and different. does. not. mean. less than. 

Finally, we are clear that HIV does not define us. Our child is SO MUCH MORE than HIV, and that's a lesson we'll be teaching and re-teaching all through our parenting journey.

And tomorrow? Sex and dating and HIV... oh my!

Tuesday, June 10, 2014

HIV FAQ: Why do you disclose that your child is HIV+?

Before I dive into this round of questions, let me be clear that disclosure is an personal family decision. I'll answer these questions for us, but other families I know and love have chosen a different way. 
We are adopting a child that has Hepatitis B and there are some similarities between HepB and HIV. The biggest piece of advice we've been given by doctors and other HepB parents is to not disclose our child's condition with others in our day-to-day lives (excluding immediate family). This has been a struggle because we are usually such an open book and our friends/family all know we are doing a special-need adoption and we are repeatedly asked what the special need is. I'm just curious what made you and your husband decide to share this? Not condemning your choice at all! We are not at all ashamed or embarrassed by our daughter's illness, but we are also passionate about protecting her privacy so she does not suffer discrimination or prejudice because we decided to make it public. Can you explain your reasoning for choosing otherwise? Thanks and God bless!!!
From a family adopting a positive child: We have only disclosed to our family because we feel it is her story to tell. We don't want to make that decision for her. Did you disclose? How was it received? thank you for your wisdom!!! 
The privacy vs. advocacy dilemma is a hard one for any parenting topic: how do we help make the world a safe place for our children to live unashamed while respecting their privacy to share their stories when and where and to what extent they decide?

I don't think there's one universally right answer, except PROCEED WITH CAUTION.

For us, that means only publicly sharing that one of our children is HIV+. A few close friends know, but it's not common knowledge beyond that. Most people who adopt a positive child, though, don't have the option w did of only partially disclosing. It was only because we adopted three siblings at once, with only one having HIV (which, side note, fits the stats pretty well - for a woman with untreated HIV, there's a 25-30% chance that she'll pass HIV on to her child in pregnancy), and I'm not sure what we would have done about disclosure had we only been adopting one positive child.

As far as medical professionals go, we've gotten different advice from different nurses, doctors, and specialists. To me, what it comes down to is this: disclosure isn't a medical decision; it's a parenting decision. When the medical professionals we work with for our children's health or for my health offer research-driven, medically-proven direction, we follow it. When they offer opinions about how my husband and I ought to parent our children, we consider their advice but certainly don't feel bound to it in the same way we treat their dosing instructions for prescriptions.

For us, we've seen three great benefits to disclosure (once again, for OUR family, whereas I know many non-disclosing families who could offer a similar list of benefits they've observed from NOT disclosing):
  1. We are able to educate others, in hopes that the world might be a little less ignorant once our child is gaining independence. We have experienced rejection, and some of those who rejected us and our child have changed their minds and hearts since. (Oh, and if you only knew the rejoicing when we found out!) That's huge, y'all. Furthermore, we have dozens upon dozens of other friends who didn't reject us but instead came to us with questions and concerns so they could be comfortable, plus two friends who have begun the adoption process planning to add an HIV+ child to their family because they've seen how it works for us. Once again, HUGE. 
  2. We haven't shouldered our children with secrecy. I can't share all the specifics of how we know this directly and deeply, but our experience and research tells us that secrecy usually shrouds unpleasant and even criminal situations, such as abuse or untreated addictions. Given our past observations - professionally and personally - of secrecy in childhood, we didn't personally feel comfortable encouraging secrecy. Also? Our kids are oversharers (hmm, I wonder where they get that from...) and young, so the concept of privacy can be hard to grasp at their age, whereas it would be perfectly appropriate for other ages. For now with their ages and personalities, "don't talk about HIV" would be heard as "TELL EVERYONE YOU KNOW ABOUT HIV!" (Side note: for us, not telling our children about HIV wasn't an option, because the topic had already been discussed in detail with our newest three, who in turn talked about it in detail to our first three, so while some parents can just say, "Little Johnny takes medicine," without explaining why, that wasn't an available choice for us.)
  3. We have shielded our child from feeling rejection from someone who doesn't know and then finds out and then doesn't let their child play with ours anymore. Sadly, when that happened in one friendship, I couldn't shield Jocelyn and Robbie from asking why we didn't play with _________ anymore, but I also didn't tell them the reason out of hope of restoring that relationship in time. For our newest three, we didn't want them to start to build an attachment with someone new only to have that stripped away like so many previous attachments in their tender lives.
I've written about disclosure and our decisions about it before, so I'll just end by sharing those links to three previous posts and one Today show article in which our family was featured, all of which address this topic in depth:

I know I've said this already, but it's worth mentioning again: This is the RIGHT decision for OUR family, whereas non-disclosure is the right choice for others. Please don't feel like this is the only valid path for those of us parenting children with HIV or other blood-borne pathogens. It's like breastfeeding vs. formula, cloth diapers vs. disposable, and so on... to each his or her own.