Zoe's surgery next week(aka why you might find me in the corner breathing into a paper bag)

A week from tomorrow, I'm letting a doctor cut up some nerves in my little girl's back.

No big deal, right?

Okay, so it's a pretty big deal.

The surgery is called selective dorsal rhizotomy (or SDR). Selective, because it involves the surgeon carefully selecting which nerves to focus on, using an EMG to measure the electrical activity in them and identify which ones are problematic. Dorsal, because it involves the nerves in the dorsal root (that is, the sensory portion) of the spinal nerves involved rather than the ventral root (that is, the motor portion). Rhizotomy, because that's that fancy medical term for a surgery that involves severing some of the nerve roots.

This surgery is a common procedure for kids with spastic diplegia due to cerebral palsy. That's the case for Zoe. She was born prematurely, probably around 30 weeks, which resulted in periventricular leukomalacia (PVL). Those big words mean that portions of her brain that control motor development never formed. As a result, her brain sends some wrong messages to her body. For her and other people with spastic diplegia, those error messages tell her muscles to tighten up. We do a lot of daily stretching, but that's not enough. The spastic tightness in her hips, legs, and feet are why she can't sit, crawl, or walk independently like other kids who are about to turn 3 like she is.

In SDR, the surgeon will open up Zoe's back, remove part of one of her vertebrae, separate her motor nerves from her sensory nerves, prod her sensory nerves with an EMG to determine which ones are sending the wrong messages to her body, and then permanently cut those unhelpful nerves.

Yikes.

But we wouldn't be doing this if the benefit didn't outweigh the oh-my-goodness-they're-doing-to-do-what? feelings about it. Zoe doesn't need this surgery to live. So if we decided to say "forget this" and walk away, we could do that.

For Zoe, though, other options aren't great. We're already doing a lot of physical therapy each week, but that's not enough. Less invasive options like baclofen or Botox aren't great for her. Baclofen affects muscle tone all over, and her core has low tone while her legs and arms have high tone, so it would hinder the muscle development in her trunk which she has fought hard to gain. Botox can help but it's also toxic in high doses; dosing is determined by a child's weight, and Zoe is so petite that her safe Botox dose is too low to target all the muscle groupings that could use it. Plus Botox deadens all the sensory nerves in the area and not just the unhelpful ones and it wears off, so SDR is a more precise and permanent.

also, this cute bob brought to you by SDR to prevent a tangled mess during the first 3 post-op days in which she has to stay lying in bed

If you're a details person, here's the link about the surgery from the team in St. Louis who will be operating on Zoe. Why St. Louis? Because their surgical team has the most experience and best success rates of anywhere in the world. If I'm going to let someone slice and dice on my kid's spinal cord, I'm not okay with anyone but the best.

those threads in the pic? they're nerves. that's kind of a big deal. (source: St. Louis Children's Hospital)

We leave this Saturday the 4th, pre-op is Monday the 6th, surgery is Tuesday the 7th, and we'll be in-patient until the 12th. If all goes well, we'll fly home the 13th and begin post-surgery therapies here the next day. Lee will hold down the fort with the other five kiddos here, working during school hours while Patu has daily playdates with her bestie.

Following surgery, she'll have physical therapy 4-6 times a week for the first six months post-op and then 2-4 times a week for the next six months. Thankfully, Zoe's longtime physical therapist will cover 3 of those sessions, along with a new therapist for one session a week and a school-based therapist for two sessions a week once she starts her special ed preschool program on December 1. (This is all in addition to speech therapy twice a week and occupational therapy once a week. Thankfully, Zoe loves one-on-one attention, so she thinks her loaded therapy schedule is pretty awesome.)

In other words, this surgery is a pretty big deal. Prayers, warm thoughts, encouraging texts, and the like are appreciated!

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.)

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.

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.

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.

And now? UNDETECTABLE.

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.

None.

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.

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?