some things truly are a matter of life & death

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This week a story about our family and other families who have adopted children with HIV will be published online at NBC News. In it, we're open about some of the positive and not so positive responses we've gotten about HIV from loved ones.

We didn't take our involvement in the story lightly. We continued to keep our typical safeguards in place, like not identifying which of our children is the one with HIV and not publicly identifying anyone who has responded unkindly to the diagnosis. And we prayed - man, did we pray! - in advance of the interview.

The primary reason we said yes: the contrast between our child and a little girl named Daphne. 

 The stories started out similarly, but their endings are tragically different.

We found out about our newest three children, including the HIV diagnosis for one of them, and declared with our acceptance of their referral that a child's diagnosis doesn't preclude him or her from the love of a family. We waded through the reams of paperwork and the labor of fundraising. We finally arrived in Uganda, fought for medical care that had been denied until then, and spent six weeks working through the legal process to bring Patience, Philip, and Patricia home as our children. Here, they have flourished, and the one with HIV now has undetectable viral loads, meaning that HIV is being suppressed by the daily medication regimen and our child is now developing like any other child.

Good story, huh?

Meanwhile, another little girl in Uganda also had HIV. Her name is Daphne. It's not my place to share her full history, but she ended up in an orphanage with no one in country able or willing to adopt her, given how sick she was. Friends here in the Raleigh area stepped forward to adopt her. A couple weeks ago, Alison and I were all set to have coffee and chat about our experiences parenting a child with HIV, sharing anything I could to help prepare them for their newest darling. Two days before that coffee date, they received hard news: Daphne wasn't coming to the United States. Her change of residence was from Uganda to heaven instead. Her body was too weak, and she succumbed to HIV-related illnesses that ended her earthly life.

I'm going to be blunt here:
Our response to "the least of these" can be a matter of life and death.

 When we care enough to do something, lives are saved.

Even when we care as much as Daphne's would-be parents do, sometimes it's too late.

When we do nothing, children die.

balloons being released a week ago at a celebration of Daphne's life

So, yes, we're being transparent with a national news outlet this week. It's not because we want to shame anyone who hasn't loved us well in this transition or because we like to see our names or faces or stories all over the place. No, certainly not.

It's because we aren't comfortable waiting for people to come around about HIV when children are dying. We aren't okay with children becoming orphans because we care more about our own status quo than we do about the poor access to medical diagnostics, care, and treatment in other countries that, if changed, would prevent orphans from being created by illnesses that wouldn't lead to death here. We can't stand quietly as we received the news that our children's father died last week, following their mother's death previously, because we know that stigma about HIV delayed their treatment until it was too late for it to help.

We are the parents of a child with HIV. For us, that means we have to stand firm to say NO! to stigma.

Because, after all, it is quite literally a matter of life and death.


(If you'll be at CAFO 2014 in Chicago at the beginning of May, please join me and the Project Hopeful team for Friday's "Parenting HIV/AIDS" session to learn how NOT scary it really is.)

wearing my special needs mama badge like a pair of snug jeans

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Let me start with an apology to my male readers: I have absolutely no idea if this post will leave you confused or if you'll relate or if you'll worry that my next topic will be about visiting the ObGyn.

(don't worry. it won't.)

 But this week a friend has been on my mind, a friend who is just beginning to realize that she is now that special needs mama she never planned to be. As I prayed for her family and then kept finding my mind wandering back to them as I went about the rest of my day, an analogy came to mind.

Special needs parenting is kind of like a snug pair of jeans.

 We all have that pair of jeans (at least, all of us ladies... guys, just trust me on this if you can't relate) that fits great after about an hour. Or maybe after one day of wearing them when we pull them on for the second day in a row. But when we first pull them on? The button is hard to close, the fabric squeezes too hard in all the wrong places, and it's almost a workout just to get them on.

For me, that's how it is with my special needs mama badge.

(As far as I know, there's no actual badge for us. But if one existed, I'd rock that bad boy.)

 We have three children with special needs: cerebral palsy, epilepsy, and HIV. For two of those children, we had the luxury of never knowing our child without a diagnosis because we adopted them after that pivotal moment. We never had to reconcile our dreams for our children with the surprise of their diagnoses. Zoe, in our history with her, has always had cerebral palsy. Our hopes for her have always involved the knowledge of the brain injury she already had before we knew her.

Those pairs of jeans are often easier to slip into.


For Robbie, though, I'll never forget the moment when so much changed, the moment when I found him choking on his own vomit while seizing for more than 15 minutes until the paramedics drugged him to bring it to a stop. That was our night that separated before from after for us.

I fought hard to get into those jeans, and it took much longer for them to feel comfortable.


Some days, though, even the comfy jeans feel snug again. Maybe I just pulled them out of the dryer where they've shrunk a bit, or maybe they're tight because I turned to chips, salsa, and root beer floats to soothe the sadness over ordering our daughter's first wheelchair.

(Which I did last week, both the ordering of the wheelchair and the drowning my sorrows in sugar and Mexican food.)

Either way, there are days that catch me by surprise when I have to fight to get the jeans on again, even though they fit just fine the day before.

So to that special needs mama who is facing those jeans for the first time, I say this: None of us love the jeans, but all of us love the reason for them: the children whose diagnoses handed us our special needs mama badges. Someday, the jeans won't be so hard to slip into. Someday, you won't care if they make you stand out a bit. Someday, you'll be so accustomed to the daily routine that you'll forget that other moms don't fight their way in those jeans every day.

Some days, though, you'll have to fight to put them on.

And that's okay. There's grace a'plenty for all those somedays.

To the friends, church leaders, teachers, family members, and others who want to love that mama well, I say this: just because we wear the jeans well doesn't mean we didn't fight to put them on. We wear them because they're our jeans.

Some days, we make it look easy. Some days, it might be. Most days, it's just what we do.
So Joshua did as Moses told him, and fought with Amalek, while Moses, Aaron, and Hur went up to the top of the hill. Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. But Moses' hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun. And Joshua overwhelmed Amalek and his people with the sword.
(Exodus 17:10-13)
Sometimes we think ministering to families affected by disability is about programs and volunteers and forms and logistics. Sometimes, it is.

Most of the time, though, it's about coming alongside families as they fight to wear those jeans they never would have picked out for themselves, holding them up as they grow weary and steadying them as they run with perseverance the particular and peculiar race God has set before them.

I am so thankful for all the Aarons and Hurs who have held and steadied me as I don these jeans I never thought I'd wear.

 So very thankful.

every story has two sides. but.

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As I re-launch the blog, I'll be re-posting one or two old posts a week for the first month or so. These are posts that I find particularly relevant and needed, not only when I wrote them originally but also now. Today's post was originally published on January 27, 2012 (back when I only had two little ones and one day before I would find out about an orphaned baby girl with cerebral palsy in Taiwan who is now our youngest daughter).


Every story has two sides.

But.

I’ve heard enough first-hand stories from families with special needs about churches who have rejected them.

I’m not talking about stories like “well, they just weren’t sure what to do with us.”

No, I’m talking about conversations like the one I had with one of our moms after respite, when she, with tears in her eyes, told me, “We love the church. My dad is a pastor. But we don’t go to church anymore, because our last church asked us to leave.”

Please take a moment to process that before you move on. Take a moment to consider how you’d feel if you were asked to leave the church because of your eye color or skin tone or height or IQ or some other attribute you can’t control. This child wasn't aggressive or dangerous; they were asked to leave because the children's ministry leaders said his autism was too distracting.

If I were writing about a church that kicked out a family because their son was black, we’d be outraged. But sometimes when I share the stories I hear from the families we serve in Access, someone responds, “well, you can't really fault the church. They probably just didn’t know how to handle it.”

Maybe it’s because I’m dosed up on enough prednisone to work me into a bit more of a ranty state than usual (and to allow my asthmatic lungs to work), but let me tell you what I think of that sort of response: it’s baloney. When church leaders kick out kids who aren’t up to the general education expectations they are used to, they don’t need our excuses.

 They do need grace. And repentance. And yes, training. And prayer.

 When I see tweets like this one (related to this story)


three prayers come to mind:

Jesus, help this family. 

Jesus, let this church learn from this situation, even if the facts being reported aren’t completely accurate. 

 Jesus, please come soon. 

  Amen.

you're our people. thank you.

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Yesterday was a hard day.

If you're wondering why, read yesterday morning's post at The Works of God Displayed.
And then read my tweet from last night:

Yep, brutal + beautiful = brutiful.

But?

It was also a good day.

Why's that?

Well, this happened.


Every day, I've been sharing an Upsee giveaway post from my friend Ellen at Love That Max, because each day's share = one more entry in the giveaway. The giveaway is still open for entries, so that's not how the picture above happened.

 (Though if we do win one that way, I already know which friend of mine would be blessed by receiving it.)

But, speaking of the giveaway, I got all teary as I read the comments on the giveaway yesterday, as a dozen or so friends have entered on Zoe's behalf with comments like these:












Y'all rock.

Then yesterday morning, as I was in tears missing a sweet boy who didn't get to turn 8 this year, friends from college sent me a precious message asking if we would be open to their buying an Upsee for Zoe.

Be still, my heart.

 In January, I wrote about my word for the year: receive. In that post, I confessed that I'm comfortable with giving but I find it hard to receive. But, as we parent six little ones with three special needs and trauma-filled baggage, we can't do it on our own.

We're not meant to.

We're created for community.

And our community? It is the richest.

Back in March, I wrote about a conference I was going to, a conference of "my people." And while those adoption mamas do understand me on a different level than some of you who haven't walked that road, I have to say this: you, if you're reading this and caring about our lives, you're our people too.

We love you.
We need you.
We're so blessed by you.

Some people have called us heroes, but really? You're our heroes.
We couldn't walk this road of faith without you.
Thank you.

 It was still a hard day.

But it was a good day too.

Stay tuned to see our Zoe rocking her Upsee once it arrives!

"Taking on" people with disabilities? A lesson from last week's DWTS

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My big girls love dancing. With six little ones, I can tend toward focusing on the littler ones, particularly since they have some special needs that require a little more attention. So...

We have special Dancing With the Stars time on Tuesday nights. 

 Yes, I know it airs on Mondays, but we watch it via Hulu Plus, which also allows me to check the interwebs on Tuesday so I know if I'll need to have fast-forward handy, like I did the first week to skip exposing my seven year old daughters to Jason Derulo's performance of Talk Dirty to Me.

{Catchy, yes. Appropriate, no.}

We fell behind last week, so this week found us finishing last week's show on Monday night.
If you're not a DWTS fan, which I haven't been before this season, let me fill you in on the disability element this time around: Amy Purdy is a double amputee, a bronze medalist in snowboarding in the 2014 Paralympic Winter Games in Sochi, an actress, a non-profit founder, and a reality TV star, including a stint on Amazing Grace and her role in this season's DWTS.

She's fantastic. She's open about her story and her amputations, including cracking jokes in Week 2 about the risk of her legs flying off during their swing dance and devoting her Week 3 dance to the way her father supported her through her bout with meningitis, including giving her a kidney as she recovered. I was a little worried, though.

When a person with a disability enters a competition full of people who are defined as "typical" by this world, one of two things tends to happen:

  1. the person is there as a filler for ratings/diversity/publicity with no intention of accommodating her in meaningful ways to allow her to compete (which, thankfully, has not happened), or
  2. the disability is presented so centrally that the person is secondary, either through explicit focus on the disability or implicit focus by constant discussion of how inspiring she is, bringing the focus to the disability, while the discussion about the other competitors is focused on their dancing, which is what the show is about. 

While the inspiration storyline has definitely been there, the judges have been focusing - especially last week and this week - on Amy's dancing skills.

But.

One comment last week from Erin Andrews made me cringe in a big way, though.

At about 7:45 in the video below, the host Erin asked Mark, Amy's partner, "What kind of pressure was this for you, taking her on?"



I know what she meant. I do. The pro dancer has to choreograph the dance and train the star to do it, and Mark has never done either for a dancer with two prosthetic legs. And I love Erin, dating back to the days when I hung out with her little sister at their house in our hometown of Brandon, Florida.

And?
I love Mark's answer, the way he brings it back to Amy's skills and the competition rather than her disability.

But we can all learn from this, because most of the time in the church, we don't mean to offend. Erin didn't mean to offend. What she did, though, was reduce Amy to an object or at least a lesser competitor. Her words would have been called out if she talked about the pressure of "taking her on" as a partner for any other star competing on the show. But when it's someone with a disability, is it any more acceptable to minimize their personhood?

Nope.

When you interact with people with disabilities at your church, do they feel like equal members in the body of Christ or like a service project you're "taking on" out of pity or obligation or something other than friendship? When you talk with special needs parents, are you thinking about meaningfully including their child or "taking her on" as another task on your to do list? When you consider families like mine in which four of our children were adopted, some with special needs, do you see children we love or diagnoses we took on?

(I sure hope you see the children we love, first and foremost!)

I'm thankful for my role as a special needs ministry leader and a special needs mama. It's not something I take on.

It's something I'm blessed to get to do.