"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. 

three reasons why families with #specialneeds opt out of VBS #SpnMin #kidmin #church #inclusion

We're full swing in Vacation Bible School this week at church, and as I'm the director for special needs inclusion and a mom of a child with cerebral palsy, I'm reflecting a lot about why many families whose kids have special needs are absent from VBS (or "Super Summer Adventure" as our church calls it).

Why do some families like mine opt out of VBS?
1. You never gave them the opportunity to opt in.

I know you pour your heart and soul and time into VBS planning each year. Truly, I do. I've done it myself. But as you plan the stories and crafts and schedules and games and songs and so on, did you stop once to think, "How will this work for kids who think or behave or interact or communicate or move differently from typical kids?"

If you didn't, then you haven't proactively considered families affected by special needs, because disabilities affect one of those areas of development. And if you're not planning with kids like theirs in mind, then you're unintentionally saying, "Our VBS is only for kids without special needs."

I know that hurts to hear, because you are working so hard to plan an awesome week for all those typically developing kids. But it hurts even more for those parents to hear the message you're accidentally communicating, which is that church is not for their child.

Tip: Next year, reach out to families affected by disability in your church (or, if none are currently at your church, in your community) and ask them to be involved in the planning stages so you can be more thoughtful. Also, trust me when I say that one-on-one helpers for kids with special needs who need that support are just as crucial to an inclusive VBS as class teachers; your volunteer roles might need to be a little more diverse to include our families well.

2. A lot of kids with special needs don't handle new environments well.

Even if your church is their usual environment on Sunday mornings, VBS is different: Louder. Longer. Busier. Bigger. Maybe at a different time or in a different part of the church than other children's ministry programming. During summer, which is already a time in which family routines are thrown off and kids are often in a state of major dysregulation.

Simply put, that's hard for a lot of our kids.

Tip: Respect that some of our families, just like some families with typically developing kids, will happily opt out of VBS without any hurt or hard feelings. For those who want to come but feel like they can't, offer two helps: (1) invite the family and child to walk through VBS before it starts, either by physically visiting the church beforehand or by sharing a social story - with pictures of each area if possible - that describes step by step what will happen from the moment the child arrives until the moment he or she is picked up and (2) let families know that they are welcome to try it out without any expectation that their child will come for the entire week.

3. Kids with special needs often have full calendars already.

Let me share what our week looks like during VBS:

• Every morning: Arrive with my six kids at 8:45(ish), take them to their classes, and then go serve the other kids I love.
• Monday: Pick Zoe up at her class at 11:15, drive home for her physical therapy at 11:30, check in with Lee to make sure he has all the room numbers to pick up our other five when VBS ends at 12 noon during his lunch break from work, and welcome our other kids home around 12:30 as our therapist is heading out.
• Tuesday: Pick up all the kids from their classes at 12 noon, have one of the big kids feed Zoe a light snack/lunch in the car, arrive home to put her down for a nap, do lunch for the rest of us, and then wake Zoe up for another snack just before speech therapy at 2:45, which I had to reschedule with the therapist since it usually would have been smack dab in the middle of Monday's VBS time.
• Wednesday: Same as Monday.
• Thursday: Pick up all the kids from their classes at 12 noon, have one of the big kids feed Zoe a light snack/lunch in the car, arrive home just in time to meet our occupational therapist at the house at 12:30, and feed the rest of the crew while Zoe has OT.
• Friday: Same as Thursday, except it's speech at 12:30 for Zoe and then Robbie (once again, at a rescheduled time because our usual time conflicted with VBS).

It's totally worth it for us, but IT. IS. EXHAUSTING. For many families like ours, it's not worth it or even feasible.

Side note: Local friends, forgive me if I disappear next week. I think we all might need some time to recuperate and regroup after this very fun but very full week!

For some families, their child's educational special needs have them in a school setting during the day even when other kids are out for the summer, which might conflict with a morning VBS. For other kids, medication wears off by the evening or bedtime routines are sacred for everyone's sanity, so an evening VBS might not work. (For example, our family has to keep a strict nighttime routine because our son with epilepsy is less likely to have seizures if we protect that time. That means we skip a lot of evening events at our church for the sake of our entire family, because seizures are disruptive and scary for all of us.)

In other words, some families affected by disability won't come to your VBS because it doesn't work for them, so don't take it personally. Do, however, make sure you extend the invitation to let them decide. Invitations mean a lot of our families.

Tip: Make sure your families know that it's okay if they can't come every day. Even if you're pretty certain that a child won't be able to come because of conflicts with their specialized schooling, therapies, or routines, INVITE THEM ANYWAY. You don't want these families to feel left out!

All of the pictures in this post are from our church's Facebook page. In the first three days of our church's VBS, we've included a whole lot of typical kids as well as precious ones with Down syndrome, global developmental delays, cerebral palsy, hearing impairments, ADD/ADHD, anxiety disorders, HIV, and autism, all learning together about Jesus.

If your church is including kids with disabilities at VBS this summer, I'd love it if you leave a comment sharing what you're doing! Or if you're a parent of a child with special needs, how can churches like ours welcome you and your kids? 


All for His glory,

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.

Waiting?

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.

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.)

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.