Surgery Tomorrow Morning

Tomorrow morning we take an important step in this journey of living life with osteogenesis imperfecta (OI). FangFang is scheduled for bilateral femur rodding surgery. For those of you who would enjoy a detailed explanation, feel free to check out this link from the OI Foundation. The short version is that right now, her bone density is very low, and her right femur has significant bowing (curving). That means that if she were to try to pull to a stand (something she has been starting to attempt recently), chances are high that her femur would snap. Try to imagine for a moment the pain that would be involved in a significant break of this largest bone in your body, and you’ll understand why we’d like to avoid that scenario. Her left femur fractured about 10 months ago in China, and she had a rod placed in that leg at that time, but it will be replaced during this surgery, and her right femur will be rodded for the first time. These rods will act as internal splints, straightening the bones, giving them added strength and stability, and lessening the severity of any fractures that do occur in the future.

FangFang’s orthopedic surgeon recommended this course of action when we saw him in January, and it is the consensus of the other parents with whom we’ve spoken that it is absolutely the best choice for her. And so, instead of spring break on the beach or exploring a fun area nearby or just enjoying some quality family time at home, we have spring break: bilateral femur rodding edition.

My mom and FangFang and I made the 5 hour drive to Omaha this afternoon and got settled into our hotel room, where we hope to get some sleep before an early hospital check-in tomorrow morning.

Would you please pray for us this week as we tackle surgery and these first few days of recovery? In particular, these are some things for which we’d very much appreciate prayer –

  • that the surgery itself goes well. The surgeons performing her surgery are some of the very best surgeons in the world who specialize in caring for children with OI, and they have done this exact same operation innumerable times, and we have full confidence in them, but no surgery is ever routine when it’s for your child.
  • that we are able to manage her pain – both physical and potentially emotional – well over the next few days. Physical pain after this particular surgery is intense, and we, as well as the nurses involved in her care, will need to stay ahead of her pain with the best medications for her. Additionally, we’ve done all we can to explain what’s going to happen and read books and show her pictures, and I’m as confident as I can be for a 3-year-old who has been exposed to English for just over 3 months that she’s well-prepared, but it’s hard to know how much she understands. She’s going to wake up after surgery with an epidural and double leg splints. She’s such a happy kiddo, and I’m hoping she won’t be too distraught by her situation this week.

  • that my mom and I are able to comfort and entertain her well this week. She’s going to be in pain, and she’s going to have very limited mobility. We’re going to need to be creative and hands on in our parenting (and grandparenting) to care for her well, and while I’m hoping for some bits of down time, I don’t really know what to expect, and I know I need to be prepared for some long days and nights.
  • that Matt and our other 3 kids can have fun together during this week at home. Honestly, I think he has the harder parenting job this week, caring for 3 kids by himself 24/7 (except for brief breaks offered by a friend, for which I am SO thankful – having a couple hours to himself to run to the gym is going to make his job so much easier!).

  • that we can head home early. I’ve been told that if everything goes well, we can hope for discharge on Thursday or Friday, then they’d like us to spend another night in town, and we’d be able to head home the next day. I’d really like to be able to head home ASAP. I don’t enjoy being away from Matt and the rest of our kids, and I think FangFang will be much happier at home with her brother and sisters than stuck in a hospital room. Even tonight, as she was falling asleep in her hotel pack ‘n’ play, she repeated several times, “Night night, Atta.”
  • that we’re able, as a family, to care for FangFang well even as we return home. I really don’t know what these next few weeks will look like, and I want to be flexible with our daily routines and with school and with my expectations of what things will look like, and I hope we can all be selfless in our care for her during her recovery.
  • that the rods do their job well. FangFang very much wants to be able to stand, and we believe (and all the medical professionals with whom we interact believe) that having rods in her femurs will help her to do so safely, and we hope that is the case.

I’ll keep you informed as I’m able. Thanks so much for joining us in prayer as we take this step forward with our baby girl!

An Encouraging Book: Different by Sally and Nathan Clarkson

A while ago, my best friend from college recommended Sally Clarkson‘s podcast to me, and it’s now one of only two podcasts to which I make time to listen regularly. I’ve found it to be such an encouragement to me in my mothering. When Sally started talking about the new books she had coming out, and I read her guest post on Ann Voskamp’s blog, I knew I had to read this book. It’s called Different: The Story of an Outside-the-Box Kid and the Mom Who Loved Him.

You see, I have at least one child who is an outside-the-box kid. I actually suspect all four of my children may be, each in their own way, likely manifesting it in different ways and at different times. However, there is one child in particular of whom I am thinking right now. Matt and I have had innumerable conversations about what we believe is going on with this child, and we’ve prayed and sought advice from several people whom we trust. We’ve just recently begun the process of exploring whether it might be good to have some more formal professional evaluations done.

In the midst of all that, there is so much doubt and second-guessing. Is my child struggling in this area because I have failed them in some way? Has my discipline been too harsh? Too permissive? Have we made poor choices, and is what we’re seeing now just the result of that? How are the things we’re seeing affecting our other children? Am I a horrible mother? 

And into those fears and questions stepped Sally and Nathan Clarkson with this book, and it was such an encouragement to my soul. Frustrated by the frequent unexpected delays to my agenda that this child’s behavior can cause, I read Sally’s words, “And I began to deeply perceive that people made in God’s image, no matter how challenging, are of more importance to Him than efficiency, control, or order” (page 27). To my fear that my parenting is ineffective and that everyone does or will view me as a bad mom, she speaks, “So instead of worrying about what others thought or about what I thought children should be like, I tried my best to focus on Nathan’s true needs, his actual capabilities, and what he needed most to learn. I aimed at reaching his heart through consistent instruction, encouragement, accountability, and training, moving him little by little toward self-control and responsiveness to our family ways” (page 27).

I found reassurance that I wasn’t the only one to make a commitment to this as a parenting strategy: “So I learned to pick our battles carefully. I tried to focus on those things that mattered spiritually, not minor issues or man-made rules. I intentionally pressed in on issues that would affect relationships, character, and faith and tried to back off of other, less crucial issues” (page 41). That same strategy is the reason you’ll often see our big girls out and about with drawings on their faces these days. It is certainly not my preference – but we’ve got bigger battles to fight. I’ve told them that if they’re going to draw on themselves, it needs to be with washable markers, but beyond that, we allow it.

I read challenges to press on in pursuing and loving this child – “[God] does not require us to control our children or friends, much less ‘fix’ them. But he does call us to pay attention, to love others, to be the ones who reach out as consistently as possible…My most important ministry would unfold one obedient moment after another as I learned to love and understand and serve those who were closest to me. Nathan or one of my other family members would push my buttons. And I would have to overcome my feelings and practice giving patient answers, to give up my rights one more time…[W]alking in the power of the Holy Spirit often means choosing to be patient and loving when you feel like being impatient and angry. It is the practicing of growing in these areas that grows our spiritual muscle” (pages 136-137).

I found encouragement that persistent compassion and grace can reach hearts – “Knowing when to correct and train, when to overlook, and when to enjoy and praise is a constant balancing act for a parent, but I tried to err on the side of compassion and sympathy with Nathan. These seemed to be the tools that opened Nathan’s heart to correction. And these gifts could only be given through personal time invested over and over again” (page 145). And I saw reassurance that prioritizing my relationship with my children matters – “If we are gentle, loving, kind, forgiving, then our children will have a picture from us that God is also gracious, kind, loving, forgiving” (page 160).

Perhaps most encouraging of all, I read that I was not alone, that even Sally Clarkson, who speaks around the world, encouraging moms, had hard days in parenting, and yet she made it through them. She writes, “[M]any dark, challenging days filled my journey of motherhood. Yet my foundational faith told me every day that God was good and that He had given me this day to live out my faith in Him by doing my best to bring light, goodness, and kindness into the world. And so it was amidst my struggles and trials that I learned the secret of celebrating life as it had been given to me” (page 194). And she raised a son who, while outside-the-box, has learned to follow God in his own unique way. He himself says, “The truth is, we live in a deeply fractured world, and we don’t always have a choice about being broken. But we do have a choice about where we let our brokenness lead us. We can follow it into escape or addiction. But we can also follow it straight to God. To the One who knows us inside and out – with all our mistakes, broken parts, insecurities, and battles – and who still loves us” (page 186). And of the fruit of his experience with his difficult growing years, Sally writes, “I am convinced that the stories he is now telling could never have had such depth if his soul had not been shaped by the pain and tears of being different” (page 214).

Having an outside-the-box kid doesn’t mean I’ve done anything wrong as a mom. It doesn’t mean that there’s anything wrong with my child. It means that this is the path God has set out for us to walk, and we’re going to figure it out together, certainly making mistakes, but attempting to live honorably, challenging one another, and having our lives enriched along the way. I was so encouraged by this book, and if you are parenting an outside-the-box kid, I’d encourage you to pick up a copy and read it, too.

Homeschooling: It’s Not All (or Mostly) About Academics

Today’s post is a follow up to yesterday’s post with our mid-year update on our homeschooling year. At least in our house, homeschoooling is not all – or even mostly – about academics. We’ve found that the opportunities to address and build character are plentiful – generally more plentiful than we’d like. More than we want them to learn academics, we want them to grow as people.

This morning was no different. One of my girls needed to do a math lesson. The actual work of the math lesson would take her less than 5 minutes. However, from the time we got started on it until the time it was done, an hour and 15 minutes elapsed. Most of that was taken up with addressing issues of personal growth, in particular emotional growth.

A big thing we’re working on with our girls is emotional development. Specifically, we’d like them to be able to identify and self-report their emotions, and we’d like them to have healthy ways to self-regulate when they are dysregulated – when their more negative emotions are feeling overwhelming. We’ve found that the movie Inside Out is a great tool for us in that endeavor.

Today the daughter with whom I was working on this particular task drew two pictures for me as we were working through this situation. This was the first.

Here, Sadness is in charge of the control panel, and she’s giving a speech. Anger is throwing bricks to build a wall to keep Joy away, even though she is still in the control center. Joy is calling to Sadness to help her, but Sadness wants to listen to Anger, so she is saying, “Joy, stop talking!”

As my child and I talked through the situation, she told me she was ready to draw a new picture, and this is what she drew.

Now Joy has broken down the wall, about which Anger is not happy. Joy is running back to the control panel, telling everyone else, “Get out of my way!” Sadness is letting her take over again.

After that picture, we were ready to have another conversation about tackling her math work. When we’d first started the morning, she’d asked if she could have one minute to play a game of tic-tac-toe with her sister before she did math, and we’d made an agreement that that was fine, but she then needed to start math right away. However, once the game was over, she wanted to cut out their game and glue it onto another paper before doing math, and I’d said she needed to honor her agreement and get started on math, but she could cut it out as soon as she was done. That was what aroused some strong emotions and prompted our opportunity for pursuing some growth.

In our conversation after we had worked through some of those emotions, I told her I realized it was important to her to cut out the tic-tac-toe game, and I wanted to help her get to a place where she could do that. It was important to me, though, that we get started on math, since that was what our agreement had been. Perhaps we could make a compromise, though – she could do half of her math exercise right away, then cut out the tic-tac-toe game, and then finish her math. She countered with a proposal that she do only a quarter of it, but I showed her what the math exercise was and how quickly she’d be able to do it, and she agreed to do a full half.

Then it took less than five minutes for her to do half her math exercise, cut out the tic-tac-toe game, and then finish her math work.

And this mama was exhausted and told the big girls they could have a Wii bowling break before lunch, and we’d do more school after lunch!

Homeschooling 2016-2017 – Mid-Year Update

It’s been rather a while since I’ve written about our progress with homeschooling this year, so I think we’re due for an update! I wrote in detail about our curriculum choices for this school year here, and we are in large part finding that those are working well.

Our curriculum outline lays out a pathway for getting through all of its materials in 180 days (36 weeks). By the time I left for China in December, we’d made it through 11 weeks of curriculum, something about which I sometimes felt a significant amount of stress. I knew life was only going to get crazier once FangFang came home, and I was worried that we’d never finish “on time” if we couldn’t even get through a third of the material before I left. Fortunately, there actually is no “on time” in homeschooling, particularly in these early elementary years. It doesn’t really matter if you read about the fall of Rome 10 months or 14 months after you start with Creation. And actually, we’ve been moving faster post-adoption than we did pre-adoption (go figure). In the 4 months between starting this school year and heading to China, we made it through 11 weeks of curriculum; in the 2.5 months since Christmas, we’ve accomplished 8.5 weeks of study. Phew! We will eventually finish 🙂

We’ve definitely had to revise our routine since our homecoming, though. I’ve found that math has to happen first thing in the morning, or it doesn’t happen at all. It’s my girls’ biggest “workbook” type subject, and they don’t have the focus or the patience for it later in the day, whereas if they start with it, they work through it pretty quickly and do a good job. We’ve actually made some changes in Madeleine CaiQun’s math curriculum. I’d started the year with Singapore grade 1 math for her, and I’d known within a few weeks that it might not work for her for the whole year. The program is very heavy on mental math and on grasping numbers as abstractions, and she just doesn’t see things that way right now, so nothing was sticking. Right now I have her doing some Rod & Staff workbooks to really solidify basic addition and subtraction facts in her mind, and once she finishes those I’ll make a decision about what to have her do next. I love that we can investigate and find resources that work well for each child as needed!

After we tackle math, we usually have a bit of play time, and then we move on to “reading school,” by which I mean Bible, History, Geography, Literature, Science, Language Arts, and Reading – all of the subjects whose focus centers around my reading out loud to the girls. I always envisioned us snuggling on the couch and reading together, but it turns out that small children’s vision does not always coincide with mine, particularly when the littles are incorporated into the day 🙂 Usually I bring out some toys with which all the kiddos can play while I read, and it’s been a process to learn which toys work best. Trains still require my assistance to build a good track, so those work only if we build the track before launching into school.

Wooden blocks, Duplos, Whittle World, and Magna Tiles are all good options for us. The general rule for the big girls is that as long as they can play without talking and interrupting while I read and they can talk with me about what we’re reading when I ask questions, they’re welcome to play during reading time! We obviously do a lot of parenting-everyone-mixed-with-school, but we’ve found that it works well for us. We’re usually done with our school day before lunch, and in the event that we’re not, we just pick up whatever we have left to do in the afternoon, either after lunch or after rest time. Then I leave our literature reading for bedtime, which is a much more relaxed, snuggly atmosphere in which to get through those longer portions of fun reading.

The littles have completely given up napping for me, and I’ve decided to embrace it. I could keep fighting for it and block off hours of every afternoon for my generally-fruitless attempts to get them to sleep, which produce high levels of frustration for everyone, or I can just accept the fact that for whatever reason, this is our new reality, and we need to make our choices in light of that fact. It actually frees up our day quite a bit. It means we have more room for walks and park outings. We don’t have to finish school before lunch. I can let the kids play longer when things are going well. I’d dreaded this milestone, but I’m actually enjoying it, though I am pretty wiped out by the time Matt gets home in the evenings.

Anyway, in terms of school itself, we’re enjoying what we’re learning. I appreciate the early exposure to some topics I don’t remember covering until much later. We’ve learned some Greek and Roman history and read some mythology, which was a lot of fun. Most recently we are learning about ancient China, reading about the Great Wall, and enjoying some stories set in China, which has obviously been a great connection for our family! The girls are learning about nouns and verbs and memorizing some poetry. We finished a long unit centered around animals and are now studying the human body. We’re talking a lot about the Holy Spirit right now as we study the Bible, and we’re memorizing some Bible verses related to things we’re working through personally right now. Most recently, Miranda and MeiMei and I memorized Psalm 103:8 – “The Lord is compassionate and gracious, slow to anger, abounding in love,” reminding ourselves of who God is and how He calls us to follow after Him in acting in compassion, grace, slow-ness to anger, and love, but He also makes it possible for us to do so. Right now we’re talking about how God has a different path for each of us, but we can all follow Him in the individual things we’re doing, and we’re memorizing Ephesians 2:10 – “For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.” It’s fun that the littles also ask to have turns repeating the Bible verses as we work on them, and I enjoy including them in those small ways as we go through our school days! We also do just a few things that are truly centered around them, singing songs together, reading simpler books, and working on shapes and colors.

The big girls have continued to do gymnastics, with Miranda in particular starting to develop her own goals there – namely to climb the rope all the way to the top of the ceiling and ring the bell. She’s been working hard, and last weekend she was able to accomplish her goal!

Additionally, we try to take advantage of opportunities that present themselves for us to take the kids out to special events. A few weeks ago, the big girls and I went to see the ZuZu African Acrobats with some friends from church.

And last weekend, we went to a Mandarin for Tots activity at the library. We attend a number of art-related events, as well. Obviously most of our social interaction occurs within the context of our family, but we’re also attempting to teach our kids how to engage with our community, too.

We’re also embarking upon a new adventure in schooling – we’re officially enrolling FangFang in public school. However, she won’t actually attend school outside of our home. In our efforts to do everything possible to make sure she has every chance to grow and develop to her potential, we went ahead and had her evaluated by the local school district, and her delays are significant enough that she qualifies for services. However, given the current fragility of her bones and the fact that we are still very much working on building attachment, everyone agrees that the best place for her right now is at home. I’ve heard horror stories from parents pursuing and working through IEPs for their children, but honestly, we’ve had an incredibly positive experience. It’s pretty awesome to me that in these assessments and meetings we’ve had to evaluate her development and discuss the best possible situations for her, there have always been at least 3 adults (usually more) from the school district involved and offering their input and expertise. Everyone has been happy to answer my questions and to listen to what I had to say – whether about the effects of osteogenesis imperfecta or our focus on attachment – and thus far, it has been a very positive experience. The current plan is that a special education teacher and a physical therapist will come to our home (or we can meet at a park or someplace where we can work on some of our PT goals) once a week for 30 minutes, and an occupational therapist will join them every other week. I’m excited to get started working with them and see how they can add to our efforts to help FangFang grow and develop!

Overall, I am really enjoying our school year, and I love getting to work with the big girls on formal school activities but also give them hours of time to play and enjoy being kids. I am thankful for the opportunity to homeschool and look forward to continuing to learn together!

pressing on through weariness

“And let us not grow weary of doing good, for in due season we will reap, if we do not give up. So then, as we have opportunity, let us do good to everyone, and especially to those who are of the household of faith” (Galatians 6:9-10). 

These past couple weeks have been wearying. There are the early mornings, the doctor appointments (and PT appointments and dentist appointments and on and on), and other physical demands of caring for 4 small children – and on top of that, seasonal allergies have arrived here in mid-Missouri. Beyond that, there is the emotional and spiritual exhaustion of parenting. I so often feel so inadequate to be the mother my children need.

And yet…I am the mother God has given them, and they are the children with which He has blessed me. I have no doubt that He is growing each of us through our interactions with each other.

A couple weeks ago, we watched the movie Inside Out again, and we’ve since had some good conversations about when Riley made the best choices, whether it was when anger was in control, or when she was feeling her other emotions, too. Most of the conversations have involved my teaching my kiddos, but one day, Miranda said to me, “Mom, you are letting anger control your choices right now.” And I was. And the intensity of my emotions dissipated immediately, and I apologized, and we moved on.

That’s a lot of what we do these days – moving on, putting one foot in front of the other, and pressing on. It’s all we can do really. In the harder moments, I’ve been thinking about the Bible verses, “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Romans 5:3-5). So much of parenting is true joy, but there is also the pain of seeing your children make bad choices, of leading them toward righteousness and seeing them turn away. Some days, I just feel done by 2:00. But done or not, we’ve got hours left before Matt arrives home, and I need to press on, and I hope that I am growing in my ability to endure well and growing in character. I hope that my children are, too, though it’s sometimes hard to see that in the small, day-to-day interactions. Yesterday afternoon one of my precious children told me angrily that she didn’t see why she had to clear her plate from the table after lunch – it was a waste of her time, and she didn’t used to have to do it herself. We talked about growth and building character. I’m not sure she believes it to be worth it at this point, but we’ll keep calling her to that standard.

There are many days on which I feel like my level of spiritual endurance is approximately equivalent to that of a six-year-old who resists at every turn the policy that she clear her things from the table after a meal. I want to grow, though. I want to have endurance, character, and hope. I want not to grow weary of doing good. I want to have hope that my children will grow to be kind, loving, and thoughtful human beings who follow the Lord. I want to trust that He is working in both them and me for good through these hard parenting times, and I want to do what He’s calling me to do as their mom.

And as God brings us to your mind in the coming days and weeks, please pray for us to that end.