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.

 

Spring Break Excitement…Or Not

You may be wondering what a family of six that is saving money for a fun summer trip (as well as continuing to rebuild the emergency savings account that was wiped out with the last adoption!) chooses to do for spring break. It turns out…not much. Well, that’s not exactly true. We’ve been doing a lot – it’s just that none of it is particularly exciting.

In fact, with the exception of a blissful 36 hours in which everyone in our home was fever-free, we have had at least one sick child every day for the last 11 days. We’ve had runny noses, coughs, and fevers, and yesterday we added a confirmed ear infection to the litany of afflictions. The downside of having a lot of children is that illnesses can slowly make their way through them, one at a time, rendering at least portions of the family home-bound for long periods of time. We’re thankful it’s not worse, but this is getting pretty old!

In a way, it’s been nice that the weather has been so yucky – 40s, maybe 50, cloudy, rainy, and muddy. At least we haven’t felt like we’re missing out on much! Even though this week is Matt’s spring break, the kids and I are plugging away at school. We may as well do school now, when weather is yucky and everyone feels bad, so we have more time to enjoy the fun, warm, sunny days when they arrive.

dinner table school

We also have a number of medical needs in our family, and poor Matt is at my mercy this week, as I’ve scheduled as many appointments and meetings as possible to try to avoid having to drag all 4 children to everything. So far we’ve tackled an eye doctor appointment for one child, a meeting about access to our church’s children’s programs for one of our kids, an unexpected pediatrician appointment to confirm the ear infection, a cardiology appointment for Matt, and we tried to do an endocrinology appointment for two of our kids…but, for the first time (which actually might be impressive, given the number of appointments we have? or maybe it’s still just depressing) I had the day wrong, and they told us our appointment is actually tomorrow. Sigh. Tonight I’ll meet with another adoptive mom to talk some adoption stuff, and tomorrow we’ll do the actual endocrinology appointment and hit a physical therapy appointment. It’s all stuff that needs to be done…but it’s not exactly Disneyworld 😉

I am thankful that we live in an era in which medical care is readily available. I’m thankful for our high quality health insurance that allows us to pursue that care without worry. It has not escaped my notice that not everyone has that right. My child who woke up with an ear infection doesn’t have to suffer longer than necessary. And since we need to take care of all of these specialist appointments, it is so nice to be able to do it during a week when Matt is around. This is part of what life with a medically complex child and others affected by various medical issues is all about. We knock out the appointments, do some school around them all, and try to get in some bits of family fun, as well <3

I hope your spring break is more exciting than ours – but also that if you are a family who has weeks like this, filled with a never-ending stream of appointments, that you can see the grace in the ability to do that, too.

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.