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.

On Priorities, Family Teamwork, and Chores

Matt and I have talked a fair amount about our priorities for ourselves and our family, and, as will come as no surprise to anyone who has entered our house ever, having a perfectly organized, always-clean home is just not at the top of the list. I think that at this point in our lives, having 4 children ages 3-7 and homeschooling them all, the choice is really between having a clean house or ever doing anything else at all – and because I’d like to have time to enjoy my husband, enjoy my children, have relationships with other people, occasionally read a book or write a blog post, or really do anything else ever, having a clean house is not a make or break thing.

That said, I do crave order, and it stresses me out when our house is a mess. We’ve always existed in that space of realizing that our house will not be perfectly clean – and being okay with that – but never quite being happy with how it does look on a daily basis. I read an article earlier this year that confirmed for me that this is a real thing – there is a link between stress and clutter. Since then, Matt and I have been slowly but steadily working to de-clutter our house and keep it more organized and clean, and that has been so good. I’ve found a rhythm for more of our household tasks that helps me to stay on top of them without it adding too much strain to my day, and having those routines has been so helpful.

Until a few weeks ago, our children’s contributions to our household tasks had primarily been on an as-requested basis, with the understanding that everyone was to help when asked to do so – and they’d sometimes even volunteer themselves or ask to help with various tasks. The big kids’ only real, routine chores were to (1) help clean up the living room every day after lunch and (2) put away their own laundry. However, we started to get increasing amounts of resistance when we’d ask our big kids to help with various tasks. As I shared recently, one of them whined, when asked to help set the table, that she felt like a slave when I asked her to do things around the house. The increasing resistance was pretty close to crossing my line of necessitating drastic measures, but the comparison of themselves to slaves was a leap far past that line.

Matt and I announced a family meeting, wherein we made a list of all of the household tasks that need to be done in order to keep our home running smoothly, how often those tasks need to be done, and who usually performs them.

Surprise, surprise, the performer of the majority of these tasks was me! We discussed the fact that our family is a team, and as such, it shouldn’t be one person’s job to handle all of the household work, and we asked the big girls to volunteer for jobs they’d like to do. Novelty is a strong motivator, and they each actually chose a number of tasks for which they’d like to be responsible!

I put together a couple laminated sheets, listing out each child’s Family Teamwork Jobs (aka chores) and the days on which they are responsible for those jobs, and we’ve been using that system for almost a month now.

It has made a huge difference. The novelty has worn off, and the complaints have begun, but we have persisted in spite of that. There are very few jobs that even the big kids perform entirely on their own – but they’re still learning how to do each one and getting better at each as we get more experience, and I work with each of them to accomplish what needs to be done, so it’s an opportunity for us to build connection by working together. Additionally, I now have a schedule (and some accountability, in the form of 7-year-olds and their lists) for completing each task, so each one is more likely to be done than when I just waited and hoped for time to tackle it.

We’re seeing increased personal responsibility from our kids, and this is another vehicle to reinforce for all of us that our family is a team, and we work together to accomplish what needs to be done. I do give them some grace (most often when it is helpful for me to do so – i.e. when I just need the dishes to be done without spending 30 minutes doing them), but we largely stick to our schedules, and I think we’re growing as people, growing as a family…and our house is cleaner and more organized! We’re counting it as a win 🙂

Creative Cake Baking: Making a Love Cake

Yesterday evening, I took a step out of my comfort zone. I really like to know, understand, and, if possible, control what is going on around me, and it’s frustrating for me when I can’t make that happen. I like logic and order. And as you might expect, being a mother to 4 children ages 7 and under, my life could rarely be described as “orderly!”

My oldest daughter, Miranda, is a lot like me, but she also shares some traits with her father, and one of the most beautiful similarities between her and Matt is their creativity and desire to explore. Miranda loves to come up with new ideas and execute them. She loves telling stories and painting and making plans. And another thing she loves is baking.

A few times in the past, she has come to me, carrying a hand-written-and-illustrated recipe, and announced that she wanted to bake something. “That sounds great!” I’d reply. “I was just thinking about making a cake, too! I have this recipe right here; maybe we could combine ours and make one together?” And then we would – surprise, surprise – follow my recipe as we baked together. She always went along with it good-naturedly, and I breathed a sigh of relief.

That all came to an end about a week ago. Miranda came to me with, this time, an entire hand-written-and-illustrated book with her latest cake recipe.

“Mom,” she said. “You know how sometimes we bake together, and we say that we’re combining your recipe and mine? Really we mostly just follow your recipe. I’d really like to make a cake that follows my recipe.”

Inwardly I cringed. My inner control freak whispered to me through its clenched teeth, “That’s because we know my recipe will be edible! If we’re going to spend all that time and use all those ingredients for which we’ve paid good money, shouldn’t we at least make something that we know won’t taste horrible?!?!”

But instead of speaking those words to my precious, earnest daughter, I took a deep breath and said, “Okay, let’s do that. Can you tell me what the ingredients are? Then we can make sure we have them, so we can make your cake.”

She named off flour, sugar, cinnamon, salt, eggs, milk, and butter. I breathed another sigh of relief – at least we were in the right neighborhood for cake ingredients. I asked her whether we needed cow’s milk (which we don’t generally have on hand) or whether almond milk would suffice, and she assured me that almond milk would work great. I told her I was pretty sure that most cakes included at least one of baking powder or baking soda, and I couldn’t remember which or why, but we might want to investigate that to see if one or both were really necessary. She responded that we didn’t need to look it up – we could just include a bit of both.

The one thing we really would need to buy, though, she said, was frosting, unless we were going to make that, too, but she hadn’t come up with a recipe for that yet. She hasn’t had as much experience with making frosting, so I wasn’t sure she’d have a good sense of the ingredients that should be included, and I thought we were probably already pushing our luck with following a 7-year-old’s made up recipe for baking a cake from scratch, so I offered just to buy the frosting.

I picked up a container of frosting in this week’s grocery shopping trip, and so, last night, we set about making our cake. Miranda honestly did almost all of it by herself. I helped her pour some of the ingredients when they were in large or full containers, but she was the one who did most of the work and ensured we were following the recipe. She loved it.

And I tried to hold my tongue and not make a million suggestions 🙂 I reminded myself that this whole thing was about connecting with her and honoring her desire to follow her recipe, to create something she’d designed. I needed to prioritize the connection, not the cake.

I did point out to her that she’d gotten out the bread flour instead of just the regular flour – but she insisted the bread flour was exactly what she wanted to use. And as I was reaching into a high cupboard for some of the baking ingredients for her, I asked if she wanted to add some vanilla (which she did). I really tried to let her take the lead. The only thing I mandated was that we really needed to bake it at a temperature more like 350 or 375 instead of the 151 degrees that she’d written down in her recipe. She assured me that that was really what she’d meant anyway.

We baked the cake during dinner, and after the bigs had taken their baths (and, unfortunately, the littles were already in bed), Miranda and Madeleine CaiQun and I frosted it.

Then the the two big girls and Matt and I tried it.

I was a bit nervous – but honestly, it was good! We all actually enjoyed it, and the girls are excited to share it with the littles and enjoy it as dessert for this week!

Matt asked Miranda what it was called. “A Love Cake,” she responded. How very appropriate <3

I’m so glad that I went along with her desire to create her own recipe and actually follow it and bake her cake, just the way she wanted <3 It was one of the highlights of my weekend. I need to remember, over and over and over again, to prioritize the connection and the relationships with my kids instead of the tasks themselves. These kids of mine make me a better person!

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.

A Day in the Life of a Homeschooling Mom

A blog I follow is doing a series on a “Homeschool Day in the Life.” I loved reading through some of the writers’ entries on that topic and especially reading through their current and some of their older entries and seeing how their lives had changed over time. It’s such a fun record of what life is really like during a given stage and how that evolves over the years in small changes that often pass unnoticed at the time but add up into significant shifts over time. I’d like to keep that record for my family 🙂

This year we have kiddos in 2nd grade (Miranda, age 7), 1st grade (Madeleine CaiQun, age 7), and a very, very, very loose pre-school (FangFang, age 4, and Atticus, age 3). I’m sharing about our day from last Friday.

I have been trying to get up early and spend some time doing my own Bible study before my kids are all up – but I’ve had a cold, and I wasn’t sleeping well, and in the night I re-set my alarm for 8:30 – a last possible wake-up time if a child didn’t wake me up before then 🙂 I got up around then and headed downstairs for our breakfast routine. Matt and I work together to get breakfast on the table for everyone, and while we’re eating, the big kids work on math and handwriting. Miranda is using Singapore for math this year, and she usually doesn’t need much instruction – math just clicks for her. Madeleine CaiQun uses Math-U-See, so she and I watch a DVD of instruction together every 5 or 6 days, but otherwise she just needs to do one workbook lesson each morning. As they finish, I check their work and call them back to the table to fix anything that was not correct the first time.

Once math and handwriting (our table subjects) are out of the way, the kids get some free play time. I’ll usually take this time to do any dinner prep that needs to be taken care of ahead of time, respond to some e-mails, or do some cleaning. On this particular day, I mostly did some cleaning, so our kitchen and dining room would be in better shape when our Chinese teacher arrived to help us make dumplings that afternoon.

Around 11:00 I gave the girls a 5 minute warning that we’d be starting our reading school soon. They know that means it’s time to start wrapping up, but we still had a bit of difficulty transitioning from play time back to school work. It’s easier when we have a concrete activity to do (a Cosmic Yoga show or a walk, for example), but they also love just having free play time.

For reading school, the big kids join me on the couch. More often than not, the littles join us, too, but on this day, they were fascinated by a book they got out on their own and chose to look at that together instead.

The big girls and I read through our books for Bible, History, Geography, and some Literature from our Sonlight curriculum and our readings for Black History Month. Normally we’d do Science, too, but our most recent book about Science had been a Magic School Bus book, and they’d been so excited about it that we’d tackled 5 days’ worth of reading and work all in one day! We also often do a lesson from our Language Arts book and/or Spelling, but Thursdays and Fridays get a bit tight for us with our afternoon commitments, and we were starting a bit late, so I opted not to try to get those in. We still had a pile of books to work through, though 🙂

Miranda was having a bit of a rough day. She is strong-willed, passionate, and intense – all amazing, wonderful personality traits – but sometimes it’s hard for her to settle in to what her mama wants to do at any given moment 😉 Routine helps with that but doesn’t eliminate the struggle entirely, and we continue to work and pray.

Once we finished that portion of school, it was almost lunch time. I agreed that the big girls could have a break from work and take some more time to play if they would promise to help me finish cleaning up after lunch. Lunches at our house these days tend to be leftovers, some thrown together snack type foods (veggies, fruit, yogurt, crackers, nuts, cheese, etc.) or, probably most frequently, some sort of pasta – spaghetti, ravioli, or macaroni and cheese – not the absolute healthiest, but they’re quick and easy and work for everyone! We reviewed our current Bible memory verses and some of our Chinese language learning during lunch – in particular, we were supposed to have a Happy New Year poem ready to recite, so we needed to make sure we were prepared for that!

After lunch, I reminded the girls of their promise to help clean up…and it did not exactly go how I would have desired. I needed to get the dining room table cleared and cleaned, and if the big kids are in a great, agreeable mood, they can do a decent job of picking up toys, but they’re still at an age where they often need me to help break the job down into smaller pieces and participate along with them, and the little kids are definitely still at that age. They disobeyed, I yelled, and we all needed to apologize and seek forgiveness. We managed to get it all done, and then we snuggled on the couch to read a couple Encyclopedia Brown stories before our Chinese teacher arrived.

On a normal non-Friday day, after our living room clean-up time, we’d usually have 15-45 minutes of quiet reading time, and then the kids would watch a couple shows on Netflix while I worked. Then on Mondays, Wednesdays, and most Fridays, we’d get ready to head out for Miranda’s swim practice. On his way home from work, Matt sometimes picks up the younger kids there so they don’t have to stay through the entire practice (and I don’t have to corral them all through the entire practice, because let’s just say that bringing a 3-year-old boy to swim practice is always an adventure 😉 ), but otherwise we all hang out there until we come home for dinner time. Tuesdays we have our small group, and Thursdays FangFang has PT earlier in the afternoon, so the whole reading and tv and work routine gets shifted later so it bumps up right into dinner time.

On Friday afternoons, though, our Chinese teacher comes! Normally we work on language learning, but this week we got to learn how to make dumplings!

Jenny had already made some pork dumplings ahead of time, and she had prepared some vegetarian filling to bring so we could all work together to make vegetarian dumplings to stay closer to our mostly pescetarian diet. We all loved making the dumplings, and she has promised to give me her filling recipes, so we can replicate them in the future! Then, of course, we cooked and ate them – yum!

After Jenny left, I had the big girls do their independent reading and then come discuss it with me as they finished. This is the first year in which I’m not having them read all of their readers out loud to me. Partly that’s a practical matter – as they have grown in reading ability, they’ve also grown in quantities that they read, and it saves us all time if they read quietly on their own 🙂 But also they are good enough readers now that they can read quietly and independently, which is pretty awesome!

Then I let the kiddos watch a couple tv shows. I needed to finish cleaning up from our dumpling making and then get started on dinner, so I wouldn’t be able to get in any work time, but we all need some quiet down time in the afternoon. And I was able to make our baked oatmeal and smoothie “breakfast for dinner” meal and get another dish of baked oatmeal prepared and in the refrigerator to take the next morning to a women’s ministry event at church.

The big girls and I had some conflict again that evening when I asked them to help me set the table for dinner. They didn’t want to, they said. They wouldn’t do it, they said. When I ask them to do things around the house, they feel like slaves, they said. We had a conversation about authority, teamwork, and who actually does most of the household work. One daughter seemed mollified; the other stomped up to her room.

We’d been planning to attend a Chinese New Year showcase, featuring our school district’s students who have been learning Mandarin, but once Matt got home, he and I had to have a conversation about whether that could still happen in light of all the drama of the day. The daughter who had refused to help at dinner time insisted that she would modify her behavior, and she was able to handle it, and she wanted us to go – and I really wanted us all to go. We are pretty busy, and it feels like a lot of our life consists of Matt taking the kids to a fun event while I work or me taking kids to a fun event while he works, or one of us taking some of the kids while the other stays home with another group of kids, not all of us doing things together. I had been looking forward to a fun outing for us all to enjoy together, so I was glad to be able to make it happen. We loaded everyone into the van and headed downtown for the showcase.

Matt put the little kids to bed when we got home, and the big kids stayed up just a bit longer and watched a show while I exercised on our elliptical before I put them to bed. We’ve been reading some Encyclopedia Brown stories, as well as our primary Read-Alouds, as bedtime stories. After I read to them, I prayed for them and tucked them in and came back downstairs – parenting day done – phew.

Matt and I generally try to reconnect and spend some time together after the kids are in bed. I showered, and then we chatted about our days and my women’s ministry event the next morning and just random, fun stuff while we played Upwords. Usually we go to bed at the same time, and I read to him from the book we’re reading together, but on this particular night, he still felt like he had some energy and had a painting he wanted to work on, but I was pretty wiped out. I went upstairs and climbed into bed and journaled and prayed for a little while. I’d been feeling a bit disconnected from God – I’m sure in part due to my not getting up early to spend time in the Word on my own, but also I’ve been very focused on doing things recently, less on being thoughtful and prayerful about what He could be doing and how I could and should be responding to that. I needed to spend some time wrestling with that (and realizing that it had probably played a part in our hard day, as well), and then I read for just a few minutes before I went to sleep.

Honestly, it didn’t feel like a great day. Making dumplings was super cool, and it was neat to see the Chinese New Year showcase. But the kids and I had more conflict than usual. I got a lot of cleaning done but not a lot of fun, relaxing time with the kiddos. It was a stressful day. But some days are like that. I thought about going back and choosing a different day to write about (the next day we had a lot of fun and games and puzzles and happiness!), but that seemed less genuine. The truth is that we have some really fun, encouraging days, but we also have days full of conflict and anger and hurt feelings and apologies and repentance, and they’re both real. Maybe next year my “day in the life” post will hit on a better day 🙂 Until then, this was just one day in our homeschooling life!