Rare Disease Day and Osteogenesis Imperfecta Type IX (Type 9)

Today, February 28, is Rare Disease Day – and so it seems fitting to share with you today that we’ve received some new information about the specifics of FangFang’s diagnosis of osteogenesis imperfecta.

With osteogenesis imperfecta (OI), it is possible to receive a clinical diagnosis or a genetic diagnosis or both. A clinical diagnosis is based on observations made by a doctor of features that are associated with osteogenesis imperfecta. FangFang has had a clinical diagnosis since the early days of her life. It was made in China and confirmed in America. There are a number of different types of OI, each associated with a different genetic mutation and each having slightly different effects, and a type can only be determined with certainty via genetic testing, but guesses can be made based on clinical presentation. Because of the specifics of her presentation, FangFang has been clinically assumed to have osteogenesis imperfecta Type IV, which is generally moderate in its severity.

Osteogenesis imperfecta itself is a rare disease. The current estimate is that approximately 25,000 – 50,000 people in America have the condition. The geographically closest person to us who has OI and whom we know lives 2 hours away. That means I rely heavily on Facebook groups and connections I’ve made online within the OI community for my learning and information about how to best parent FangFang in light of her diagnosis.

Even within the umbrella label of osteogenesis imperfecta, though, different types occur with differing frequencies. And yesterday I received a phone call informing me that, while we had all assumed FangFang’s genetics tests would yield a result of Type IV osteogenesis imperfecta, that is not actually what they showed. She, in fact, has Type IX (Type 9) OI.

There is no one else in our 2,000+ member Facebook group of parents of children with OI whose child has been diagnosed with Type 9 OI. When I asked in a larger group that is open to adults with OI, as well, the responses were the same – interest, for sure, but no one else is reporting having that same diagnosis. That’s a bit of a lonely place to be!

In a worldwide database tracking reported cases of OI, there are a grand total of 16 cases ever reported of this type 9 osteogenesis imperfecta.

This is the face of someone with a truly rare disease.

We don’t really know yet all of what this means. To be honest, we probably won’t ever know. Research into everything about osteogenesis imperfecta is still so new. The bisphosphonate treatments that FangFang receives quarterly to strengthen her bones have only been around for 20 years or so. Sometimes one drug or another works better for people with a certain type – but if there is no one else with your type, there’s no way to know until you try it. FangFang’s type is so rare and newly discovered that it isn’t even listed specifically on the OI Foundation website. Really, I expect that no one knows much about it.

I have an e-mail out to the doctor who is the most likely person in America to know anything about Type 9 OI. He is no longer officially part of FangFang’s care team in Omaha (he took another position at another hospital a few months ago), but he is a good guy, and I hope he may have some information for me.

Until then, I have resorted to consulting Dr. Google – and even Dr. Google has failed me. I spent about 2 hours yesterday searching and found next to nothing available publicly. I’m aware of its rarity, its inheritance pattern, and the gene it affects. That is all. There simply is not general information about this condition available in an easily accessible form.

And so, this week (and beyond, I’m sure), I’ll be scouring medical journal articles, to which we, thankfully, have access through Matt’s position at the university. Not being a doctor, trying to read medical journal articles is not really my preferred pastime, but I want to arm myself with all the information I can find, so I can do everything possible to obtain the best care for my daughter. I hope we’ll do alright. And I hope we can be a resource for anyone coming after us.

This Is Us, Traumaversaries, and the Long View

February is a tough month around here. We’re coming up on the second anniversary of an incredibly traumatic week in our family’s life.

That week began with an early Sunday morning phone call from Matt’s mom telling us that his sister Denya had passed away completely unexpectedly. After we got the call, we went to church. I don’t know why we went to church. Trauma responses are not rational.

And 3 short days later, I called 9-1-1 from an upstate New York hotel room as our kids and I witnessed Matt suffer cardiac arrest. We spent the next week in the hospital (here you can read parts two, three, four, and five if you hadn’t already), leaving our kids – with no advance preparation – in the care of grandparents and aunts and uncles for the week. After discharge we spent another week at Matt’s mom’s house before a friend flew out to help us drive home to Missouri, where we began our journey toward recovery and health.

As we have approached these anniversaries, I’ve been feeling it. It’s a true traumaversary for me – an anniversary of trauma that affects you so deeply that your body itself remembers it. I’m more emotional. I fought back tears as a woman at the grocery store accused me of taking her spot in line. I’m more on edge with my kids. I’m more easily irritated with Matt. The strain of other normal interpersonal interactions feels greater.

And into this context of our lives steps the tv show This Is Us. Featuring a white family that adopts a black child, it is quite popular among my adoptive mom friends, and Matt and I began watching it last year. It is, quite simply, phenomenal. Of course, it resonates with us in particular because of the nature of our family and its similarities to the tv show family. Matt and I have adopted two of our children trans-racially, and we have a number of children all close in age to one another. But it goes beyond that – the show explores family dynamics, personal choices, and how we all live in a way that resonates with viewers deeply.

The show hops between different time periods in the family’s life, and we’ve known since season one that Jack, the father in the family, was going to die while the children were in high school. Season two has focused on the lead up to his death and its effects on each of the children in their now-adult lives. And a week and a half ago, he died. In fact, he suffered a cardiac arrest (after inhaling too much smoke in a house fire). When told, his wife’s immediate response was to take a bite of the candy bar she was holding (trauma responses are not rational). And then she had to go and tell their children.

I sobbed.

I sobbed through the entire episode, and I sobbed through the next one, in which they plan and attend his funeral, scatter his ashes, and begin to figure out life without Jack.

It all hit pretty close to home. I’ve envisioned all of those scenarios. My brother-in-law and nieces lived them out two years ago – and are still living them out today. Things could have gone very differently for us on that night two years ago. And now we live on borrowed time. Matt’s health is generally good now, and we hope for many more years together. Of course, only God knows the number of days any of us have left, but we know that ours may be fewer than most, and we think about what that may mean for us.

And in This Is Us, we see what it means for every character. Their experience with trauma affects them forever. It colors their lives. It does not need to define their entire lives, but it never goes away.

I remember sharing with a friend, before we brought Madeleine CaiQun home from China, that we’d need to parent her differently than we might parent a biological child because of her experiences with trauma in the first few years of her life. This friend asked, “So how long will it take before she gets beyond that and you can just treat her like normal?”

The answer? Never.

And this is the long view. We never “get over” our experiences with trauma. We move through them. We learn to live with them. We learn how they affect us. We learn how we can manage their effects. We learn what truths speak to us when the effects of our trauma rear their ugly heads. We learn what sort of supports we need.

I am seeing that I need to dial back my expectations for myself, for Matt, and for our kids during this month. I need to watch for my desire for control and counteract it by working to hold all things loosely. I need to practice loving well, even when I feel like retreating.

And I need to take these insights and apply them to the ways in which I parent my kids. My first three kiddos share my traumaversary. My two kiddos from China have experienced a number of huge traumas in their lives. All of these experiences shape who they are, how they respond to stress, and how they live their lives. I can recognize that even I, as an adult, am not fully in control of my emotions and the ways in which I respond to the additional stress I feel at these sensitive times. How much more difficult it must be for them, as kids, to deal with hard stuff! I can choose to recognize that and parent out of compassion and kindness, rather than rigidity and selfishness.

Watching the Olympic figure skating competition last night and seeing Patrick Chan skate to “Hallelujah,” I was reminded of the truth and beauty in the words:

And love is not a victory march

It’s a cold and it’s a broken Hallelujah

I needed that reminder heading into this week.

A New Extra-Curricular Activity – We’re Learning Mandarin!

For a few weeks now, our Friday afternoons have brought us a new extra-curricular activity, one about which I could not be more excited – the 3 girls and I have started learning Mandarin! One of Matt’s students, who is from China and has experience teaching Mandarin to children, asked me if I would be interested in our kids learning the language, and I responded with an enthusiastic YES!

We have tried, at times, to learn some more Mandarin, but we hadn’t found an option that was (1) a good fit for our family and (2) affordable. And now – enter Jenny, who is willing to come to our house and enter into our craziness and teach us!

While Matt and I were incredibly excited about the opportunity for some of us to start learning this language spoken in the country of birth of two of our daughters, not everyone was thrilled initially. One of the kiddos we’ve adopted is very ambivalent about all things China – and that’s absolutely fine with us. She has every right to those feelings. But we explained to her that part of our job as parents is to keep doors open for her. Someday she might want to return to China for an extended visit or even to live there. It’s possible – though improbable – that she could someday find members of her birth family still living in China. Someday she might want to be more involved in the Chinese American community here in the States. She is not now and might never be interested in any of those things – but she might change her mind as she gets older. And if she does change her mind, having some Mandarin will be an asset for her. Learning now keeps doors open for her for her future. We will never push her through any of those doors. Her life is hers to live, and those decisions are hers to make. But our job is to make sure the doors stay open, so she has the tools to make those decisions when the time comes. And now that we have gotten a few weeks into our language learning and she has started to become more comfortable with Jenny, she is warming up to the idea.

And Atticus…well, he remains uninterested and unfocused. Mostly we just set him up with something else to do while the rest of us learn 🙂 But he does deign to join us for the fun art projects Jenny brings for us to work on!

We are so thankful for this opportunity! Part of that is just getting to know Jenny more. I’m always so thankful for Chinese and Chinese American people who are willing to invest in my Chinese American daughters. As their mother, I can do a lot for them, but I will never be able to pass on to them my own firsthand accounts of living life as an Asian woman in America. It’s so special for me when they are able to have relationships with other people who can offer them something I cannot! That includes far more than language, though of course it includes language, as well.

Madeleine CaiQun and FangFang don’t really remember much Mandarin – before we started our lessons with Jenny, they knew only words that I also knew (which were very specific to toddler adoption – things like “milk” and “bed”). Their pronunciation, even now, though, is pretty good, which is so nice for them, because, honestly, at least for me, it is hard! I really have to think about the tones, in particular, because they are such an integral part of speaking Mandarin that really is not analogous to anything in English. But the current star of our little Mandarin-learning group? It’s actually Miranda! She is motivated to learn and enjoys success, and Jenny says she speaks like a native Mandarin speaker. Jenny has offered to give her extra lessons after our group times, and she eats up that extra attention! She’s already learning a lot.

And the rest of us are learning, too 🙂 This past week we started working on our first Mandarin dialogue, which the girls and I are practicing in preparation for this week’s lesson! Jenny is great at working with us where we’re at. I told her we were practicing during the week, but that was both a blessing and a curse, because we all remembered more when we practiced, but practicing meant that I had to lead our lessons, so instead of hearing a native Mandarin speaker, the kids hear my American accent! After hearing that, she made audio recordings of herself for us to use this week in our practicing 😉

I’m so thankful for this opportunity. Not only does it offer our whole family an opportunity to build a greater connection to Madeleine CaiQun’s and FangFang’s birth country and its culture, but it opens up more opportunities for all of us in general. There may be more countries that use English as an official language, but China’s population is over 1.3 billion people, and learning a language spoken by that many of our world’s people can only serve us well. I know it’s so great for kids to learn another language, and Mandarin has always been what I’ve wanted our kids to learn as part of their schooling, and I’m so, so thankful that they now have the opportunity to do that. Plus it’s another opportunity for learning for me – a challenge, for sure, but it’s one worth tackling!

Book to be Released Next Week: Confessions of an Adoptive Parent

When I posted this photo on Instagram and Facebook, a number of my friends who are foster or adoptive parents (or preparing to be either of those!) commented that they were interested in what the book was all about.

I heard both Mike and Kristin Berry speak back in October at the Refresh Chicago 2017 Conference and was encouraged by their words and by the conference in general, so when they announced that this book was coming out this year, I was honored to be invited to be part of its launch team (Disclaimer: I received a free copy of the book and the pre-order bonus materials in exchange for my participation in the launch team.) 

The book has a very similar feel to the Refresh Conference – one of its primary aims is to make sure that foster and adoptive parents understand that they are not alone. Mike tells a number of stories from his own experience as a foster and adoptive parent (while still keeping many details of his children’s stories private), which help to communicate that no matter what a family is experiencing, their struggles are not unique. The Berry family has parented children who behaved in unsafe ways with other children, who became pregnant earlier than planned, who have had to be placed in residential treatment facilities for periods of time, whose experiences of trauma directly play into their behavior, and who are not always respectful, kind, mature individuals. No matter what struggle an adoptive or foster parent is walking through, this book will offer reassurance that they are not the only ones.

It’s also very readable – I carried it with me and read it all over the place 🙂

reading while waiting for Miranda’s swim meet to start!

Some of what I found most helpful from the book were the reminders to press on. Berry writes, “So now we have a choice. We can shake our fists at the heavens and say, ‘This wasn’t part of the deal,’ or we can choose to move forward, love our children through the trials, work to understand trauma, and live to the best of our ability in this new normal” (p. 76-77). Probably all of us parents have had moments of wondering whether this life was really what we signed up for, but I appreciated the encouragement to persevere through the hard times. Berry says, “I’ve found that when I stop dwelling on what I wish would have been, and accept what actually is, I find hope quicker” (p. 77).

Reminding us all that there is hope, no matter what, is another of the main points of this book. Part of that is practical encouragement – Berry tells multiple stories of kids and young adults who were making bad choices but whose paths eventually changed, and he offers the reminder that we are all in process, saying, “I didn’t come from a traumatic situation the way some of my kids did, but I still had to journey to where I am today. Twenty years ago I wasn’t able to do what I do today” (p. 187). And another part of this reminder that hope exists is spiritual. Berry writes, “That’s where I find hope – not in the wreckage of this journey, but in the fact that Jesus has willingly entered into our darkest moments and fights with us and for us in the middle of it” (p. 123). And he says, “You and I need to trust the God who created the universe and gave us life, confident that He holds our broken kids in His mighty hands” (p. 188).

Our children are younger, and we haven’t had all of the experiences that the Berry family has. However, we have had our own struggles as parents, and we do see the effects of trauma in our kids’ lives, and not everyone around us understands why we make the choices we do for our family. It’s encouraging to know that there are others out there who do understand this adoption parenting journey. And I appreciated the reminders to have hope and persevere in loving well, even in the midst of hard situations with our kiddos.

If you’re looking for some encouragement in these areas, I’d absolutely recommend the book! And if you pre-order in the next few days, there are some pretty extensive pre-order bonuses, which you can check out here!

2018 Goals

I spent a lot of time toward the end of 2017 thinking about what I wanted my goals for 2018 to be. 2017 was a crazy intense year. I’ve told a few people recently that I felt like I had about 800 balls in the air, and I dropped almost all of them at least once, and I’m slowly trying to pick up what is important. As we – hopefully – move toward a time of less necessary intensity, I’ve been wanting to be intentional about what my priorities and goals are, and I’ve come up with a few things.

  1. I want to try to cultivate peace and joy, both in my heart and in my home. First and foremost, I think this is a spiritual battle. I want to be more intentional about spending good time in my Bible and in prayer. I’ve started getting up earlier and doing a Beth Moore Bible study – just on my own – to help me stay in a pattern of doing that. Beyond that, I need to take some practical steps to enable peace and joy to flourish (like not over-committing myself to too many things). And I need to commit myself to examining my own heart throughout the day, practicing mindfulness and prayer and self-regulation, and I need to establish more patterns of treating every member of my family with respect, not yelling or expressing myself with sarcasm, even in my most frustrated moments. I think this is key to my growth as a person and as a wife and mom this year. 
  2. I want to rebuild our emergency savings fund. We basically wiped ourselves out financially to complete FangFang’s adoption at the end of 2016, and 2017 was such a crazy year with medical and travel expenses and just not having the mental or emotional energy to buckle down and commit to spending less money, so we pretty much just held steady financially. In 2018 we’d like to get back to a place of more financial security.
  3. I’d like to read 12 non-fiction books. I’ve been doing really well with keeping up with and enjoying some good fiction books lately. I read them on the Kindle app on my phone, which allows me to spend 2 minutes here or 5 minutes there reading as I’m able, which I so enjoy. But with non-fiction, I find that I am more thoughtful about what I’m reading if I read it in a paper copy, not a Kindle book, and I want to devote time and mental energy toward really integrating what I’m reading into my mind. That means I can’t just read it anywhere and everywhere and in 2-minute increments. But I am, at heart, a student and an intellectual. Matt and I are dorky people – it’s one reason we love homeschooling so much. I find that I feel more myself when I’m engaging with ideas, when I’m growing and learning. I want to make that a priority, reading and thinking on my own, and to that end, I’m making a goal of reading approximately 1 non-fiction book per month in 2018. And oh my goodness, I cannot wait to dig into this pile of books. I’ve started the first already, and it has been such an encouragement to my soul. 
  4. I’d like to get healthier. Exercise was sporadic, at best, for me in 2017, and I think my body feels the effects of that. And as I’ve gotten older, I’ve noticed that my metabolism isn’t what it used to be, and I’m needing to adjust to that. We remain committed to our pescetarian lifestyle and try to follow a fairly healthy, whole-foods, plant-based diet, but I think toward the end of the year, our meals tended more toward whole wheat carbohydrates and less toward vegetables, and I’d like to flip that around again. I’d also like to get a healthier amount of sleep – always a challenge with young kids 🙂 Overall, I’d just like to make progress toward being healthier.

Those are my top 4 personal goals for 2018. I’ll try to keep you posted here about how I’m doing in working on those, and I’d love to hear what your 2018 goals are!