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.

Christmas 2017

It has been several years since we have traveled for Christmas, but this year we made the trip to Wisconsin, where I grew up and where my mom still lives, to spend Christmas with my mom, my dad, and my brother David (Daniel was out east with his wife Sharon and her family).

It was probably a good thing that we were heading north instead of hosting people here. Traveling for FangFang’s latest surgery and then continuing to help her recover once home, plus trying to get in a bit of schooling with the big kids, and just live life (feed everyone at least 3 meals a day, make sure everyone has clean underwear, and keep everyone alive) was pretty much all I could handle the couple weeks before we left. This was the extent of my Christmas decorating.

And you know why that was up? It’s because my mom made it with Miranda last year while I was in China, and Miranda didn’t want to take it down, so it stayed up all year. And ripped. And I just left it there. We did no Christmas tree at home, no Christmas crafts. We did watch some Christmas movies 🙂 Matt did some Advent stuff with the kids. And I started reading through the Jesus Storybook Bible Advent reading plan with them…and then failed to finish it. But this year’s holiday season was one of realizing that we could not do it all and that we needed to prioritize what was most important, focus on that, and not sweat the rest. We talked about Christmas being a celebration of Jesus’s birth and what that meant. We listened to Christmas music. And we looked forward to heading to Wisconsin to be with family 🙂

The big girls were very excited and told many people that while everyone staying here was probably going to have a green Christmas in Missouri, we would be enjoying a white Christmas in Wisconsin. They were rather disappointed when we arrived to only small patches of snow on the ground. David and I took all the kids for a walk a couple days after we got to Wisconsin, and they collected all the snow they could find in this stroller and then brought it home and dumped it outside the window of my old room, where the big girls were sleeping, so they could look out at it to enjoy a white Christmas!

Unfortunately, it was really cold, so that was pretty much our only outdoor outing for the whole trip. We did have a lot of indoor entertainment, though 🙂 Madeleine CaiQun’s siblings got her a paleontology excavation kit for Christmas, and she chipped away at it (sometimes with a bit of help from Miranda) until she had uncovered every single bone and put together her dinosaur model!

Miranda has been interested in learning more about how to sew, so she dove into this sewing kit project as soon as she received it!

We’ve learned, over the years, that our kids do better with a “Christmas season,” as opposed to one giant, overwhelming morning of a million presents and no time to enjoy any of them, so we started letting them open presents, one or two at a time, several days before Christmas.

Even so, Christmas morning was a big deal 🙂

I love these photos of my kiddos spending time with family and enjoying their gifts <3

We made our traditional Christmas cut-out cookies and frosted them the evening of Christmas Day. Somehow the frosting turned out super runny this year, which made things more difficult than usual, but we managed to enjoy the evening and make some nice cookies 🙂

The time in Wisconsin was, overall, very relaxing. We didn’t go out much – it was freezing cold, and Matt had a sinus infection that sent him to urgent care (and then back to bed) early on in our trip, so we ended up spending a lot of time just relaxing at my mom’s. That wasn’t all bad, though. Matt made a lot of small artworks. I read some books. The kids played and had space to really enjoy their time with extended family. Miranda played more games of Yahtzee with my dad than I could count. We received several more cooperative games for Christmas gifts, and we all enjoyed playing those together. There was time to play with Playmobil and puzzles and, of course, dinosaurs. Some of us adults frequently played cards after kids were in bed…and Atticus woke up a couple times and sat with me while we finished our games 😉

And we did get out a bit. In addition to our Chicagoland trips, I finished reading Wonder out loud to the big girls, so the two of them and my mom and David and I went and saw the movie one evening. And after Matt started recovering, we were able to go out and connect with a few friends in the area. Miranda found a fellow climber in my cousin’s daughter, which was so fun to see!

Overall, it was one of the most relaxing Wisconsin trips we’ve had. I think we often pack them full of things to do and people to see, and while I love getting out and enjoying other places away from home and connecting with friends and family, our last few weeks leading up to Christmas were intense that it was probably perfect timing for us to have some pretty low key time with family. It was a good Christmas celebration!

Our Little Atticus Boy is 3!

At the end of November, our little Atticus boy turned 3!

It was actually a really hard day for me – because I was in Omaha with FangFang and not with him. I’d known for quite a while that her tibias needed to be rodded, and I knew that if at all possible, she and I and another adult needed to go to Omaha for the surgery. FangFang, at age 4 and with a history of trauma, is completely opposed to my leaving the room after surgery. She doesn’t want to stay with a nurse, and she doesn’t want to stay with child life. This is understandable – but makes it difficult for me to do surgery trips with her as the sole adult (unless I can carry everything we’ll need for our stay in one trip and have no interest in eating for the duration of our time in the hospital). I talked with my mom about her availability, and I talked with a friend whom FangFang loves about her availability, and it just kept coming back to that week of Atticus’s birthday – that’s when it worked for my mom to travel with us to do surgery.

So I talked to some other mamas of kids with medical needs, who assured me that, yes, they had occasionally missed a birthday for one of their other kids, and it had all been okay; I spent a day crying; and then I e-mailed to schedule the surgery.

Fortunately, Atticus is young enough that he has no real ties to the specific day, and he was quite happy to celebrate his birthday early. In fact, it was probably even more fun for him, because we had family in town for Thanksgiving. We did love getting to celebrate with everyone!

Our little guy is obsessed with dinosaurs these days. Just about every present he received was dinosaur-related. There were dinosaur toys…

…there were dinosaur books…

…and there were dinosaur clothes!

Atticus, like our other children, has what our pediatrician calls a “strong personality.” One way in which this manifests itself is his pronouncements that certain clothes are good and others are not, seemingly at random. We have kiddos who have sensory challenges and preferences, and this isn’t that – it’s just a decision he makes. So, unfortunately, while he wants to wear dinosaur clothes on a daily basis, he has also announced that half of these items of clothing are unwearable! Youngest child or not, he has no problem developing firm opinions of his own and making them known.

He is almost completely potty trained (hallelujah, I’m almost done with daytime diapers!!!!), which actually makes this clothing dilemma less of a big deal, because he is my only kiddo who has had most success with the nude method of potty training…so he mostly runs around naked all day long when we’re at home 🙂 We may not be a conventional family, but it works for us 🙂

Anyway, back to our birthday boy and his dinosaurs 🙂 Even with many new birthday dinosaur presents, he is still excited every time he finds a new dino item. He was my grocery shopping buddy soon after his birthday, and he saw this walking, roaring dinosaur at Aldi, and he was so excited when I said he could use his birthday money from my dad to purchase it!

Aside from his dinosaur focus, he also requested an ice cream focus for his birthday 🙂 He choose pizza and ice cream for his birthday dinner, which was greatly enjoyed by everyone!

About 3.5 years ago, when we found out that the baby with whom we were pregnant was a boy, I was a bit intimidated. I wondered whether I’d be a good boy-mom. I wondered if I’d love him the way I loved my girls. And now, with a little 3-year-old boy in my life, I can say unequivocally that this little guy is a treasure. Our Atta-boy has hilarious thoughts – I mentioned to him the other day something about when he was born in the hospital, and his response was, “I was not born in the hospital! I was born on the coffee table!” The girls and I dissolved in laughter, and I assured him that he was in fact, born in the hospital, and I offered photographs as proof (which he, fortunately, accepted!).

He’s a climber and a jumper, but he’s also a snuggler. He loves to laugh and play. I could not love this little guy more <3 I’m so thankful for the 3 years we’ve had with him so far and look forward to many more!