Omaha 2018

Did you catch that title? “Omaha 2018.” No subtitle. In contrast to our four trips to Omaha in 2017, my hope has been that this would be our one 2018 Omaha excursion – but I knew that would largely be determined by what we found out during this trip.

About a week and a half ago, we loaded up our minivan and packed up our family of six and drove out to Omaha, where we were overdue for FangFang’s annual OI clinic visit. World-class practitioners in multiple specialties related to osteogenesis imperfecta (OI) work together in Omaha to provide a clinic experience that, to my knowledge, is unmatched.

We arrived on Tuesday night, and FangFang and I headed to the hospital on Wednesday for the testing that would give us valuable information about her growth, her bones, and her body in general. This year was a light year in that all we needed to do was a dexa scan (which measures bone density) and a collection of x-rays (that check the status of the rods she currently has placed in both femurs, both tibias, and her left humerus; show us the status of her spine; and generally look at how her bones are growing and whether there have been significant effects from any recent fractures).

The highlight of the day for us was seeing FangFang’s former foster sister, Xiao, whom she knew in China before we ever met her. Our families have stayed in touch since the girls have come home, and we hope to continue to be able to schedule their clinic visits together and maintain this relationship for them. Our children from China have so little from their pasts – these connections that we can help them keep are so special. And in each other, they each have a friend who truly understands, who is living life as a Chinese adoptee with OI. Those connections will likely be invaluable to them as they grow and begin to negotiate the world with increasing independence.

We’d actually hoped the reunion would be even larger. There is a third sweetheart, Gabby, who lived at the same foster home as FangFang and Xiao in China, and she recently came home and was scheduled for her first clinic appointment at the same time as us – but unfortunately, her older sister (also from China, also with OI) broke her femur the week before clinic, and their family was unable to travel ☹ That was such a bummer – we’d been so looking forward to seeing all of them! There are a few other families with kiddos from China who have OI with whom we hope to continue to maintain connections, as well. We’re so thankful for these sweet moments between Xiao and FangFang – even at 3 and 4, they delighted in seeing another child like them, using a wheelchair, having scars from rodding surgeries, occasionally sporting a splint – we’re going to do all we can to continue to facilitate these connections for our kiddos!

While FangFang and I did that testing, Matt took our other kids to a park, and once we were done, they came back for us and we all spent the rest of the afternoon playing at the park.

In an attempt at frugality, I’d booked all six of us in a standard hotel room for our time in Omaha. While it was certainly frugal, it was also rather miserable. We were all on top of each other all the time, the kids had no room to run around or play, and it was just generally an unpleasant situation. We ended up spending most of the waking hours during which we were at the hotel letting the kids watch tv, because it was our best strategy to keep the peace. And now we know. We can certainly handle standard hotel rooms for a one night stop or something of that sort, but for any extended stay, it is unwise!

We debated how to handle Thursday morning clinic – whether all of us should go, so Matt and I could both be present for all of these doctor meetings or whether it would be better for him to take the other kids to do something more entertaining, and FangFang and I could focus, undistracted, on our conversations. It would have been great to have both of us there for all of our conversations, but ultimately, we realized that as the researcher and doctor-appointment-attender parent, I was probably going to be negotiating 95% of those interactions, anyway, while Matt parented our kids, and it would probably be easier for him to parent them somewhere other than a hospital room 😉

FangFang and I were at the hospital by 7:45, and we got to chat a bit more with Xiao and her family before clinic started.

After a nurse got FangFang’s height and weight, we were taken to a room that would be our base of operations for the rest of the morning while doctors and other providers rotated around to talk with us about their individual areas of expertise as they related to FangFang.

First up, we saw Dr. Esposito and Dr. Wallace, the orthopedic surgeons. I knew that their assessment of how her bones and the rods she’s had inserted into many of them (both femurs, both tibias, and her right humerus) would largely determine whether we needed to make a planned return trip to Omaha any time this year – and, thankfully, they don’t believe that will be necessary! Of course, we may end up back there anyway – a significant fracture requiring surgery would mean a drive to Omaha for Dr. Esposito and Dr. Wallace to operate – but we at least don’t need to plan anything now! Her left femur rod is the one they have the most concern about. It was the earliest placed, and the surgery was done in China, and it will likely be the first to require revision, but they said that as long as she isn’t experiencing pain or limping, we should leave it alone. We looked at her spine, and her scoliosis is not particularly severe, and the wedging we can see on x-rays has improved in the last year, largely due to the Pamidronate treatments she receives. Essentially, everything looks pretty good from an orthopedic perspective!

We also met with a researcher for a 5-year longitudinal study being done out of Omaha, in conjunction with other research sites, collecting data about individuals with OI to use in research studies, and we’ll have FangFang start participating next year. There is not a great deal of research available related to OI, and we want to do anything we can to be part of developing that, hoping for more and better treatments in the future.

The endocrinology team was very happy with the improvements in FangFang’s bone density shown by the Dexa scan. It’s actually a bit confusing, knowing what the level of improvement was – there is a discrepancy between what the 2017 report shows as her 2017 measurements and what the 2018 report shows as her 2017 measurements, and no one was quite sure why. But, regardless, her 2018 numbers show either a 15% or a 30-40% increase over her 2017 numbers, so we’ll continue with her same level of Pamidronate treatment.

We also saw a dentist and a dietician. The dentist continues to see no OI-related issues with FangFang’s teeth, which is great news. And the dietician talked with me about our diet and what FangFang eats and what her growth trajectory looks like, and she was happy with all that we’re doing, so no changes needed there.

The physical therapist was also very pleased with what FangFang is doing and what we’re working on with our local physical therapist, which was great news! The occupational therapist recommended an OT evaluation and maybe 4-6 sessions of OT at home to work on underlying core strength and skills – grip strength, endurance, screwing and unscrewing. I’m not thrilled to add likely another appointment to our weekly routines, but it’s definitely a good idea to address these things as early as possible, so we’ll see what we can do!

Overall I was very encouraged by the clinic visit, knowing that the Pamidronate treatments are having the desired effect, that her bone density is increasing, and that we likely don’t need to return to Omaha until next year for clinic. That’s pretty much the best report we could hope for!

After clinic, Matt took the younger 3 kids back out to play at a park while Miranda and I stayed back at the hotel room. She did some math and some art while I put in a couple hours of work and then napped. Another consequence of that whole six people in one hotel room arrangement was that no one was getting great sleep!

Friday was a really good day. We’d planned to meet Xiao’s family at the zoo, just to hang out and have fun, and that we did! Another family in town for OI clinic joined us, as well, which was great! They’d traveled all the way from the Bahamas for clinic, making our 5-hour drive look like nothing! The kids loved running around and the zoo, and we’d heard great things about the it, and it did not disappoint.

It was great to have this time to consult with these amazing OI-care experts and so good to connect with other families with kiddos who have OI. We were so thankful for our time in Omaha!

A Busy May Full of Visits and Transitions

I took a few weeks off of blogging in May – it was a bit of a crazy month! My dad visited at the end of April, then my mom came for a visit.

Our Chinese teacher (who has become a friend) graduated and moved across the country to be with her husband.

We had an ER trip for FangFang when she flipped her wheelchair over on top of herself. She was, fortunately and miraculously, completely fine.

We’ve had FangFang enrolled in public school, receiving homebound services, but we had her last session and withdrew her from public school.

I spoke at our church’s women’s retreat, where we studied the book of James, super hard-hitting. I loved getting that time away with other women, having good conversations, connecting, and worshiping together. The camping atmosphere was…not my favorite 🙂 But we did have cabins with beds, and there was an actual bathroom, and I survived! And I learned a lot studying James 3 and 4 in preparation for my talk about our speech, about our hearts, about our recognition (or lack thereof) of God in the world, and about humility and wisdom – a lot to cover but some really good stuff.

FangFang also managed to fit in a trip to urgent care. She fell off of a picnic table at the park, earning a cut on her face that required 5 stitches.

We spent a day in St. Louis with my cousin Kevin and his family, which was a blast. We really enjoy Kevin and Rebecca, and they have a daughter, Sawyer, who is just a bit older than Miranda, so we all had a really fun time hanging out together.

Matt finished his semester and headed to Michigan for 6 days, at which point my mom came back for another visit to help out while he was gone. We might have survived without her, but it was definitely incredibly helpful to have her here, especially since no one slept well for most of that week! Atticus, in particular, is very attached to his routines, including Matt putting him to bed each night, and he was not always pleased to have me hanging out with him instead. And we got to have some fun outings – going to a pow wow and spending a bit of time at the pool.

Then our horseback riding instructor (who has also become a good friend) moved to the St. Louis area, and while we can keep in touch, we’ve said goodbye to having her as our regular instructor and seeing her quite as frequently.

And we switched Miranda from her regular swim club to summer swim league at our local pool. And it…did not go well. It was super crowded, including a lot of older kids, with more of a focus on racing against other kids during practice, as opposed to just improving yourself. It took only a couple days of misery before we switched her back to her regular swim team! I should have paid more attention to my own counsel, realizing that finding an activity that works well with a coach or instructor who is a good fit is hard to do – those good instructors are worth their weight in gold – and we should have just stuck with what was working. But we made it right, and even though we lost some money, and I felt like a bit of a flake, I’m glad we did it 🙂

Then we wrapped up the month with a visit from my aunt and uncle! We got to have dinner and hang out with them and give them a brief tour of the Mizzou campus and just enjoy having a bit of time together.

The month was full of so much good stuff – we loved having visitors and opportunities for connection.

But also? I hate change. Knowing it is coming makes me nervous, and I always mourn for what we are losing. If it were up to me, I’d very rarely choose those transitions. And I think that’s one reason why God put me in a college town, where change happens constantly, and I’d have to deal with it. I can’t hold anything in my life too tightly, and I’m forced to embrace change and newness.

I’m still mourning the losses, the unexpected injuries, the moving of friends, and all the transitions. But I’m looking forward with hope to what is to come.

Fifteen Years

Fifteen years. It’s been fifteen years since we said I do.

We were babies (almost literally – I can’t believe we got married when I was 20). We had no idea how much we didn’t know.

And as I look back on these fifteen years of glory, my instinct is to go to the “high points,” the mountaintop experiences and accomplishments. We’ve had plenty of those. We’ve traveled the world together.

(And the small joys – ohmygoodness, I laugh every time I see the forehead hickey you gave yourself!)

We’ve brought two babies into this world.

And we’ve added two more to our family through adoption.

Our 15 years of marriage have been filled with incredible joy.

And yet…I’ve had that line from Hallelujah running through my head – “love is not a victory march; it’s a cold and it’s a broken hallelujah.”

We’ve had our fair share of cold and broken hallelujahs too.

We’ve done counseling and Zoloft. We’ve had our fights. I’ve dropped to my knees and cried out to God in tearful prayers of brokenness and desperation. We’ve looked death in the face (I just can’t bring myself to post the pictures here right now, but, readers, you can scroll back through these posts if you haven’t seen them already).

I don’t know what the next 15 years hold for us. A part of me is terrified to find out.

And yet – I trust that no matter what happens, we are a team, united together ’til death do us part.

When we start to drift away, I trust that we’ll turn back toward one another, over and over and over again.

I’m thankful for many years of knowing you, of doing life with you, of reading good books and having great conversations, of being real and genuine and vulnerable, of hurting each other and making amends, of hard work, of loving and serving, of triumphs and celebrations, of victory marches and broken hallelujahs. And I pray that we’ll have many more to come.

In Which Miranda Becomes a Vegetarian

One of my greatest joys in parenthood is watching my children develop interests and passions of their own. All four of our children have what our pediatrician refers to as “big personalities,” so there is no shortage of passion here. Even if we tried to direct it, I’m not sure we could, and each time it bursts forth from one child or another, I feel like I’ve just gotten to unwrap another Christmas gift. I get a real glimpse at where my child’s heart is, and the wonder and awe that this child whom I have the privilege of shepherding through life has his or her own unique convictions and excitements and passions – and that I have a front row seat to witnessing them – is glorious.

One of Miranda’s latest passions is vegetarianism. As a family, we have been almost entirely pescetarian since shortly after Matt’s heart attack. For several months now, though, Miranda has been entirely vegetarian. She was never really a huge fan of fish, anyway, and while the rest of us have always made occasional brief forays into the carnivorous culture in which we exist (primarily related to social gatherings), Miranda abstains from meat entirely.

I remember very clearly sitting on the couch one morning, doing our history reading, and looking at pictures of Vikings carrying in animal carcasses in preparation for a feast. The meat-to-be looked so very…animal-like. I believe that was the moment that solidified it all in her mind with finality. She would not be consuming meat.

Since then, our conversations about vegetarianism generally go something like this:

  • Miranda: I will not eat meat! It is mean to kill animals for food and eat them!
  • Me: I respect that conviction, and we’ll honor that. You don’t have to eat meat.
  • Miranda: No one should eat meat! If anyone eats meat, they should be killed!
  • Me: So…you think it’s evil to kill animals?
  • Miranda: Yes!
  • Me: So evil that anyone who eats an animal should be killed?
  • Miranda: Yes!
  • Me: Doesn’t that seem a bit ironic to you?
  • Miranda: No. Why would that be ironic?
  • Me: Well, you’re advocating for killing people, because you’re protesting that they are killing animals. If you value the lives of animals, do you think maybe we should also value the lives of people?
  • Miranda, looking at me as if that proposal is the most ridiculous thing she’s ever heard: No.

There you have it, my friends. Miranda Grace, the ultimate intensifier, has spoken. She is a vegetarian, and the rest of us are supposed to follow her lead – or else.

Either that, or I need to keep working with her on developing some sense of moderation and respect for others’ convictions and the ethical gray areas of life 😉

Access Matters

I’m sorry to have to admit that, for most of my life, I was pretty oblivious to issues of accessibility and disability rights. It took exploring adoption through a special needs program to begin to open my eyes, and it took adopting a child who actually has a medical need that is considered a real disability for me to begin to truly see. And I’m still learning – but I see more than I used to see.

Everywhere we go, everywhere we look, there are barriers to access.

Do I want to go to a park? Do I want to take my kids to play at a playground? Do we want to go to church (did you know that churches are exempt from the ADA?)? Do I want to sign my children up for a group or activity? Do we want to hire a baby-sitter to watch our children? Do we want to take advantage of the childcare advertised as being provided in conjunction with an event?

Because one of the members of our family has a disability, none of those activities are ever straightforward for us. Every single one requires advance planning, maybe scouting out a location, maybe explaining our situation to whoever is in charge.

Even the language that we, as a society, use to talk about disability and access is often awkward. I cringe when I hear the phrase, “wheelchair bound.” Does this look like a child who is “bound” to and restricted by her wheelchair?

I’d argue not. FangFang’s wheelchair is an amazing tool that allows her greater access to the world around her than she would otherwise have. Without it, she would have almost no “social mobility” – the ability to move herself around in public places. At home, she is quite mobile – she can butt-scoot or crawl to get herself almost anywhere, including up and down stairs – but butt-scooting down the aisles of Target isn’t exactly within our social mores. It’s true I could put her in a stroller, but in that situation, I’m pushing her around, and she has no control over where she goes. At four, just like other four-year-olds, she wants to have some freedom to explore her world, and it’s entirely appropriate for her to have that. That is what her wheelchair offers for her.

FangFang knows there are things that other kids her age can do that she can’t. She doesn’t often communicate that it bothers her…but when we find ways to facilitate her participation and her independence, her excitement is palpable. She has been potty trained for months, but because she doesn’t walk independently, and she’s so tiny, she has always relied upon me to assist her in the bathroom, even as she has seen her younger brother use the bathroom on his own. This week she received a custom-made step-stool, a modified version of this one, that allows her to be almost entirely independent in the bathroom. She is beyond thrilled.

It’s true, providing for access is expensive. It’s almost never efficient. But don’t the lives of people with disabilities matter? They’re people, right? My daughter who doesn’t walk independently is still a person, still an image-bearer of the Living God, worthy of respect and dignity, right? And my friend’s daughter, who is deaf? And another friend’s son living with HIV? We, as a society, should not be setting up systems that perpetuate exclusion. None of us benefit from that situation. Right? Do you believe that with me?

I hope you do. But sometimes I wonder. Maybe other people don’t? If they did, would it be this hard?

It breaks my heart that I am going to have to, at some point, teach FangFang to advocate for herself in a world that, in so many ways, is not built for her. I am so thankful for the ways in which we as a country have grown in inclusion – for the ADA, for IDEA, and more. But we still have so far to go. And as hard as the mental back-and-forth is for me, the mother of a child with disabilities (I need more help – I literally cannot do X unless someone else helps me; but who am I to request additional help, beyond what everyone else gets, when I know people already have a lot on their plates; what should I do here?), I am committed to the fight, for my child and for those who come after her; would you like to join me? I don’t want them to have to fight so hard. And I wear my new shirt to remind myself of the future for which I’m fighting.