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Omaha and Beyond

Our trip to Omaha last week was amazing. We knew going into adopting FangFang that the medical care necessary for a child with osteogenesis imperfecta (OI) would be significant. What a blessing to be able to see a specialist in every single related area all at once!

We arrived on Tuesday night and checked in at Rainbow House, which is right down the street from Omaha’s Children’s Hospital and is where most of the families getting treatment for kids with OI stay. We’d heard good things about it…and there were some good things…but actually our experience there was awful and ended up having repercussions that extended days (and dollars) beyond our stay. That’s all I’m going to say about that now, but we were pretty disappointed.

However, our experience at the hospital itself was great. It would be impossible for me to recommend the OI clinic in Omaha more highly!

Matt took Miranda, Mei Mei, and Atticus out for some adventures on Wednesday morning, and FangFang and I headed to the hospital. First up for her was a dexa scan, which measures bone density.

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Her bone density z-score actually came back at -5, which means the density of her bones is 5 standard deviations below the mean value for children her age – that is a huge difference.

We also did a bunch of x-rays – partly as a baseline, partly to give us more information about a recommended course of treatment now. I was really pleased – everyone was so helpful and easy to work with. I wanted an x-ray of her right humerus, as it had broken last September and felt a little off to me, but that wasn’t included in the standard list of initial x-rays, so the radiology nurses called right away to get an order from the OI clinic for that, so we could do it all at once.

FangFang and I had some time to kill in between appointments so hung out in the cafeteria for a while, about which she was pleased!

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You mean I can choose any snack I want, Mom?!?!

Next up was audiology. She clearly did not share their view that their attempt to look in her ear was a “no ouchie” situation, and after that she was pretty uninterested in their attempts to engage her further. We were able to measure that her ear drums do move, which is a good sign, and we’ll just leave the rest for next year.

Then we were free for the afternoon! Matt and Atticus went back to Rainbow House for naptime, and all 3 of the girls and I went to the hospital playroom for a play date! The online community of OI moms is so incredible, and 3 of us moms had discussed ahead of time the possibility of getting our girls, all with OI, all home from China within the last couple months, together. It was so cool to connect in person!

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The kiddos had fun playing, and we mamas got to chat, which was so nice!

Xiao (on the left) and FangFang were actually both at Agape Family Life House together in China, so they were reconnecting here for the first time since they were adopted! At first they seemed to have some cognitive dissonance seeing each other again in a totally new environment, but as our time went on, they warmed up to each other and were interacting really sweetly.

photo by Xiao's mama, Heather, of Snapshot Photography
photo by Xiao’s mama, Heather, of Snapshot Photography

It was so good to see. FangFang continued to ask about Xiao throughout our time in Omaha. We were so thankful it worked out for us to reunite these two, and we hope they can continue to enjoy this relationship in the years to come!

That evening we were able to reconnect with an old friend from our days in Chicagoland, who is now a professor at a nearby university, and we enjoyed a dinner out with him and his family.

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We really enjoyed that not only was this a trip to get some much needed medical care for FangFang, but we were also able to work in some fun times and connections with friends, both old and new!

Thursday was an early morning as we headed to clinic. We were given a large room (the better to house our large family!), and we settled in there. We just stayed in that same room all morning, and all of the doctors and medical professionals rotated around and came in and talked with us. It was awesome to see so many experts so quickly and easily!

First we met with Dr. Rush, the clinic director, and his team.

photo by FangFang!
photo by FangFang!

Then we saw Dr. Esposito, the world-renowned orthopedic surgeon. We also met with a social worker, a dentist, a physical therapist, an occupational therapist, and several nurses.

We learned so much. We went into this already having a lot of general knowledge but lacking the medical expertise to apply what we were learning to specifically what FangFang’s care would need to be. The doctors there believe that FangFang has Type IV moderate OI, which is what we’d expected. Her right femur shows evidence of having fractured and healed multiple times in the past, and it’s significantly bowed, so it will need to be rodded. Hopefully we can do that surgery before it fractures again, but it would also be great for her bones to be slightly more dense before we attempt it, so we’ll probably wait 4-6 months. That gives this mama a bit of time to prepare for the surgery, too, and try to prepare FangFang as well as possible. We’ll also have her left femur re-rodded at that time. It broke about 8 months ago and was rodded in China, but the rod has migrated a little bit, and that will start to get uncomfortable, so Dr. Esposito is recommending that we take care of both legs at the same time.

After clinic we split up. It was great for both Matt and me to be there and be able to ask questions and meet all of these key players on FangFang’s care team, and all 4 kids did amazingly well, given the expectation that they sit in a small room reasonably quietly for over 4 hours. There were some other things we needed to take care of that afternoon, so Matt took Madeleine CaiQun and Atticus with him to tackle that, and Miranda stayed with FangFang and me at the hospital. FangFang would be getting some bloodwork and her first stateside infusion of Pamidronate, which works to strengthen her bones and help them grow in their density.

Unfortunately, FangFang is not a super easy stick, and no matter how good they are, she is not happy for anyone to be poking at her veins, so that portion of the day was a bit traumatic for her. We got the infusion going, though, and then we were free to wander the halls!

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They had plenty of fun toys in the infusion center, but we hadn’t had lunch yet, so we went off in search of some food. I was so thankful that Miranda had stayed with me. She really has stepped into this role of big-sister-to-3 amazingly well, looking out for FangFang and offering hugs and playfulness and protection. Any time I needed to step away to use the bathroom, I asked a nurse to keep an eye on them, but it was Miranda who really engaged with FangFang and kept her happy.

We actually spent most of the afternoon in the surgery waiting room with Xiao’s parents. It was great to get to chat with them more…and they also helped me out a few times. I joked with Heather that everyone needed a friend who could serve them even while their own daughter was in surgery!

By the end of the day, we were super ready to be done. I hadn’t realized quite how long the whole process of getting the infusion would take, and we were finally discharged that evening about 12 hours after we’d checked in to the hospital that morning. Whew! It was a long day.

Between the reports of the suspected impending ice storm and our unhappiness with things at Rainbow House, we opted to drive home that night, so Matt and the other kiddos picked us up at the hospital when we were ready to go, and away we went, arriving home around 1:00 am.

The kiddos did really, really well with the whole trip, and we were so thankful we were able to get to Omaha so quickly and get such great input from so many experts in the field about how we can best care for FangFang. It was really awesome, and we’re so thankful for that opportunity.

The days ahead are rather daunting, as Matt heads back to work today. It has been such a blessing having him home in these early days as a family of 6, enabling us to have a much smoother transition than I suspect would otherwise have happened. However, he does have to return to teaching, and I’m somewhat intimidated by the prospect of having much longer days at home by myself with all 4 kiddos! Yesterday, a day during which Matt was gone for much longer than he was regularly away for most of winter break, was also a bit rough – I had moments of feeling quite triumphant…but that feeling was quickly squashed when both littles, enamored with the novelty of having Mom put them down for their naps instead of Dad, refused to sleep, rather complicating my plan for the day. We obviously have some kinks to work out. We’ll also be beginning the process of meeting with our local specialists (a local orthopedic surgeon, a PT evaluation, an OT evaluation, a school system evaluation, etc), and we’ll have to see how all of that goes and what the effects on our lives and schedules are going to be! Please pray for us as you are able!

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Heading to Omaha This Week!

Later this week we’re packing up and heading to Omaha for their OI clinic! Why, you might ask, would we do that?

When we were reviewing FangFang’s file, before committing to pursuing adopting her, we’d gotten in touch with our pediatrician, who reached out to one of the orthopedic surgeons in the area. He let us know what treatment would generally entail (surgeries and bisphosphonate infusions) and said that care could all be handled locally. And it likely could. So why travel? Why, in fact, change our insurance coverage to a different, likely more expensive plan, solely so that we could travel?

Osteogenesis imperfecta is an extremely rare condition. Approximately 25,000 – 50,000 people in the United States are estimated to be affected with OI – which means that in a country with a population of approximately 324,349,000, less than 0.02% of the population is affected. There is an OI Clinic right here at Mizzou, which, based on the most current data, sees…6 people per year. In contrast, in the same year, the clinic in Omaha saw 176 people. That number is still so low – but it’s almost 30 times higher than the number seen at Mizzou. The doctors involved with the OI Clinic at Omaha Children’s Hospital are recognized internationally as experts in caring for children with OI. Their research relates to OI, they speak at OI conferences, they consult with other doctors, and their expertise shines through when they interact with parents. As we began to research OI and speak with other parents of kids with OI, they almost unanimously recommended making the trip to Omaha and having these doctors involved in our daughter’s care.

Additionally, the clinic has a multidisciplinary approach. In just a couple days, we’ll be able to have FangFang do all the testing that is needed to give her doctors the information they need as they determine the best course for her treatment going forward, and see all of the doctors we need to see. We’ll do x-rays to get a good look at her bones and a DEXA scan to measure bone density. She’ll have an audio test (because our hearing is dependent upon the tiny bones in our ears, people with OI are more likely than others to have hearing issues), and we may do bloodwork and run some genetic tests. Then we will meet with a whole team of doctors and other medical professionals, including an orthopedic surgeon, an endocrinologist, an audiologist, a dentist, a physical therapist, an occupational therapist, a nutritionist, and a social worker, each of whom can speak to some facet of FangFang’s condition and give us insight into how best to care for her.

And this girl? In combination with these doctors? She’s going to kick some OI butt :)

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These are going to be some long days, but I am oh-so-thankful for the opportunity to go to this clinic and see these experts. We want to do everything we can to care for FangFang as well as possible, and that means getting her to the OI experts who can best advise us and help us to care for her. We’re excited to meet them, excited to hear their thoughts on a treatment plan for FangFang, and excited to get started doing whatever they recommend!

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First Fracture? Yeah, Probably.

I was planning to write about something else today…but I think I should share about this instead. As a pre-adoptive mama to a precious little girl with osteogenesis imperfecta (OI), I did my homework. I talked to doctors, and I talked to other mamas. I prepared and traveled to China with a break box (a box of medicines and splinting supplies that would allow me to care for any fracture at any time). But I hoped I wouldn’t need it – not for a long time, definitely not while we were in China, and hopefully not until after our first trip to see the specialists at the OI clinic in Omaha. And I prepared myself mentally for the drama of it all. I’m not a stranger to medical trauma and the necessity of sometimes keeping a cool head, doing what needs to be done, and leaving the feelings for later. I knew it could still be tough, though – imagine a three-year-old fracturing their femur. Not all fractures are severe, but some are, and the probability of a severe fracture in a child with OI is significant.

We made it through China with no fractures, and I breathed a sigh of relief, and with our appointment in Omaha approaching, I was hopeful we’d make it until then without any breaks to any of FangFang’s bones. Alas, it was not to be. I’m pretty sure we’ve got our first fracture on our hands.

Remember that toy car FangFang so desperately wanted and was so thrilled to have?

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Well, she and it may have been involved in a collision with the other toy car last night. I knew that was a possibility when I ordered the car, and it did give me pause. However, what I’ve taken away from conversations with people with OI and mamas to kids with OI is that most of them would prefer to be allowed to play and have fun and risk the fractures, rather than being isolated and protected in a bubble.

After the crash, she cried and reached for me, and I held her and comforted her. We asked her if she had an owie, and she pointed at her lower leg, and once she calmed, Matt and I took a look at it. She let us look at and feel it, and she never winced as we palpated it. She sat on my lap and laughed at her siblings’ playing, and she saw her pajamas on the couch and asked to take off her clothes and put on the pajamas and didn’t have any strong reaction to pants going off or coming on. But she didn’t want me to put her down and did point at her leg a couple times. I checked in with another mama to a kiddo with OI, and her assessment from afar was that it was definitely not severely fractured but that it could be a micro-fracture or a slight crack, something that might not even show up on x-rays for a week or two until a callus has formed – or it could just be a normal bruise like any other child might get. If it were bad, we’d know, and we should probably try to make sure we didn’t let her do anything to further aggravate any injury there but otherwise just watch and see how she was doing. That’s what we did, and we had a normal bedtime routine, and she slept through the night just fine!

This morning she seemed a little off, though. She seemed a bit nervous to take off her pajamas, and instead of whipping her legs up in the air for her diaper change and then sliding them into her pants legs, she was picking up that leg with her hands. She’d say, “Mama,” and point to the same part of her leg that she’d been indicating last night. She was also asking for me to rub lotion on it. Poor girl, I think she may have thought that was the entirety of my repertoire for making things feel better! But she clearly felt like there was something going on that needed care. So…back to my OI mama friend I went, and her response this morning was that it really sounded like a minor fracture. That’s what I’d been thinking more and more, as well, and our leaning in that direction was strengthened when, as I was discussing the situation with my friend, FangFang began to attempt to splint the leg herself! Wow.

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I gave FangFang some Ibuprofen and talked through our options for our next steps with my friend and decided to take care of this one at home. We could have gone in for x-rays, either through the emergency room or calling the doctor who will probably be her local ortho, but there’s a good chance a small fracture wouldn’t have shown up on x-rays at this point anyway. Additionally, whether it did or not, it seemed clear FangFang’s leg needed a splint – for kids with OI, as my friend said, “If it quacks like a duck, then it is a duck, meaning if it seems like a fracture it’s probably a fracture,” and you need to treat it as such. I could do a splint quickly and easily at home, though. Beyond that, the biggest help doctors can offer is a prescription for stronger pain meds, but this one seems like it should be manageable with Tylenol and Ibuprofen. Plus she’s going to have a comprehensive set of x-rays next week in Omaha, and she’s going to be exposed to enough radiation in her life that I don’t feel the need to have a double exposure here in a situation where the x-ray would give us no necessary information.

We pulled out our break box and set to work on our first real splint.

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One blessing is that she’s already had her femur rodded in this leg, so we don’t have to do as significant of a splint. I believe the likely fracture is in her tibia, so the joints above and below need to be immobilized. For a non-rodded femur, we wouldn’t be able to stop the splint anywhere along her upper leg, though, or we’d be creating a site at high risk for a femur fracture, so we’d have to splint up past her waist. Thankfully, in this situation we can just splint through mid-thigh.

(For you OI mamas out there, her foot actually is at close to a 90 degree angle here; it just doesn't look like it because of the awkward angle of the photo!)
(For you OI mamas out there, her foot actually is at close to a 90 degree angle here; it just doesn’t look like it because of the angle of the photo!)

And here she is, all set and back to her usual happy self :)

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She seems slightly annoyed by the fact that the splint’s bulkiness and weight makes it a little harder for her to move around, but I’d rather face a bit of annoyance than a more significant tibia fracture! Overall she really seems completely fine, and I’m so happy about that! First likely fracture down with minimal trauma and with a cool bright blue splint of her choice! Now we’ll just hope we can make it to Omaha before we have any more significant trauma :)

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The Littles

Upon my return from China with FangFang, Matt and I started referring to groupings of our kids as “the bigs” (Miranda and CaiQun) and “the littles” (Atticus and FangFang). It’s unclear to me whether this was an actual misunderstanding or a purposeful attempt at redefinition, but it became clear one day that Miranda was using the words rather differently. In her mind, “littles” was a category that included Atticus and FangFang but also CaiQun, whereas she, Miranda, was grouped together with Matt and me in the separate “bigs” category. This is classic Miranda. We’ve attempted several times to explain to her our conceptualization of the groupings, but she seems to remain unconvinced. However, for our purposes, “the littles” are our toddlers, Atticus and FangFang!

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The littles have an interesting relationship, and we’d anticipated this even while we were reviewing FangFang’s file, and we’d discussed it with our social worker. There is a term in adoption – “virtual twins” or “artificial twins.” It’s usually defined as two biologically unrelated children in the same family whose difference in age is less than 9 months. This is obviously not a naturally occurring phenomenon, and it can come with a number of issues, and some social workers and adoption agencies will not allow adoption of a child whose adoption would create a set of virtual twins.

Technically our big girls fall into this category, though they’ve often not seemed like it. Miranda has always been very verbally advanced, and Madeleine CaiQun seemed so much younger than her age when she came home, that they seemed farther apart developmentally than they were chronologically. Now they seem much closer to being twin-like, and I do think that exerts a certain amount of pressure on each of them, but at least right now, I don’t think it’s significantly different than the experience of siblings born within a couple years of each other, and honestly, I think they benefit from having each other. They are each others’ best friend and playmate.

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The littles are not technically virtual twins, as FangFang is 14 months older than Atticus. However, practically speaking, they are much more virtual twins than the bigs were. This is due in part to the effects that osteogenesis imperfecta has on FangFang’s size and gross motor skill development. She’s smaller than he is and is quite adept at scooting herself around the house on her butt but does not crawl, stand, or walk. Additionally, as she is transitioning from Mandarin to English, her English language capabilities are obviously behind his.

This small age gap was honestly, something I was excited about. We’re ready to be done having babies, and we are loving the age that our bigs are at. We like playing board games and doing puzzles. We are dorky people and love reading books together and doing homeschooling. We’re looking forward to being able to travel more, to visit museums and historical sites together. Having all of our kids pretty close in age will allow us to do a lot of that together as a family. And it will simplify homeschooling in some ways. But most of those are future advantages to which we’re looking forward. The current reality is that we have two toddlers, two in diapers, two who are not safe to stand alone in a parking lot, two who need help getting dressed, need help falling asleep, and on and on. Even as a somewhat experienced mama, an adoptive mama for several years, and a mama to artificial twins already, I think I slightly underestimated the challenge that this next year or two may really be!

The first few days home were particularly rough. If one little one was on my lap, the other wanted to be there. If I was holding one, it didn’t take long for the other to find me and request to be held, as well. It was pretty overwhelming.

Home almost 2 weeks now, I’m seeing some light. She’s actually more jealous for my attention than he is, which I had not anticipated – the foster home at which she was living was also caring for several other young children around her age, so I’m certain she did not receive continuous one-on-one attention, but she sometimes seems to think that’s a right to which she’s entitled! I’m doing my best to give both littles some good quality time, and I think they’re each getting used to the other’s presence.

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I still think this relationship is going to be a challenge. They’re both similar to your average 2-and-3-year-olds in terms of their interest in sharing, which is to say that they have no interest in sharing anything 99 times out of 100!

Right now, with Matt in the midst of winter break, we’re able to do a lot of tag-teaming in terms of parenting the two of them, but that’s obviously going to be reduced significantly in a week and a half when Matt goes back to work. That’s going to be…shall we say…interesting. Honestly, that’s going to be the true test of how we’re doing as a family of six, how we do once Matt returns to work. But it’s not here yet, and I’m trying to take things one day at a time!

I do see incredible glimmers of hope in this relationship. The other day, FangFang hurt her leg a bit, and as I was comforting her and looking at her leg to make sure it didn’t seem like a fracture, Atticus came over, saying, “Gentle, gentle,” and laid down right next to her. She rolled toward him and tucked into him, and they put their arms around each other and just rested that way.

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Cue mama happy tears!

We’re also really trying to limit competition between the two of them. Atticus, as a third child, has very few possessions that are truly his – most toys in our house are communally owned – but he does have a few things for which we defend his ownership, including a Little Tikes car, which he loves. Her eyes lit up when she saw it for the first time. We put her on it, and she was ecstatic, and asked repeatedly, “FangFang car?” He, of course, responded definitively, “No! Mine car!” Future requests for a turn for FangFang were also answered with a concrete “no,” so back to Amazon we went, and a second car arrived yesterday around lunch time. And now? Happy toddlers :)

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Of course we’re going to work with them on sharing and kindness – we’re not always going to have two of everything – but it’s also okay to give them each a few things that can be just theirs.

This dynamic is going to be interesting in the coming months and years! Of course, when you’re a part of our family, that’s forever, and we work through whatever challenges we face, and we do it together. I think this relationship will have its hard aspects, and we’ll work through those, but I also hope (and truly believe) that it’s going to be an incredible blessing for them both.

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Snuggles, Tantrums, and Perspective

One day this past weekend I came downstairs this afternoon after snuggling my two babies to sleep, and my heart was full.

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As I was lying between them, I’d told myself, “This is what you were made to do.” 

This return home has not been without its hard times. Our original 3 are all working through the adjustment to having another child join the family, and we’ve seen some jealousy, some big feelings, some good (and not so good) conversations, and some world class tantrums. Jet lag is so intense. Matt and I are working through how to do marriage as parents of four and how to support each other in the midst of this new reality. I still have the last little bits of unpacking to tackle. This past week and a half has been immeasurably intense.

And in the midst of that, I’ve been so thankful for the encouragement of friends. A sweet friend of mine from Chicago, whom I don’t see nearly as often as I’d like but who is still such a blessing in my life, texted me the other day and said, “The gifts God gave you are an unusual mix – smarts, common sense, discipline…exactly what you need to do what he’s called you to at this time.” Those words of life-giving perspective were just what I needed in the midst of that afternoon.

I need to remember that parenting is good work. It’s work that God has called me to, it’s work for which He has and is equipping me, and it’s of the utmost importance. Sometimes it’s hard to remember that. Parenting isn’t generally grandiose. But the hearts and souls of these little people whom God has entrusted to my care are so precious, and the ways in which I interact with them matter. It’s easier to be peaceful and joyful in those interactions when I have a precious toddler sleeping on either side of me; harder when one of those toddlers is going on minute 25 of an intense tantrum. But whether a sweet moment or a challenging one, I am trying to remind myself that the time I’m spending investing in these little ones is important, and it’s the main work God has given me for this time in my life, and He is with me in every minute of it.

I actually thought I’d be less emotionally intense about the entire adoption process and the adjustments when we came home, having been through it all before, but that has not been the case. I was emotional while in China, and I’m emotional now.

That applies to the good and the bad. We got to go to church on Sunday morning and worship God as a family. Even up until the night before, we weren’t sure we’d attempt it. FangFang exhibited some pretty strong “mommy shopping” tendencies in China, but that has diminished some since we have come home, so we thought it might work for all of us to go and just to keep her close, and I think it went pretty well!

We sang the song, “Rejoice” by Dustin Kensrue, and as I sang the lyrics, I couldn’t help but reflect on our adoption journey:

All our sickness, all our sorrows
Jesus carried up the hill
He has walked this path before us
He is walking with us still

Turning tragedy to triumph
Turning agony to praise
There is blessing in the battle
So take heart and stand amazed

Rejoice, when you cry to Him He hears
Your voice, He will wipe away your tears
Rejoice, in the midst of suffering
He will help you sing

Rejoice, come and lift your hands and
Raise your voice, He is worthy of our praise
Rejoice, sing of mercies of your King
And with trembling rejoice

It’s such a blessing to be home with all four of our babies, and I know that God’s hand was in this whole process. I think of the health obstacles, the emotional obstacles, the financial obstacles, and everything else we had to work through to get to FangFang and bring her home, and I think of how it all came together with what in so many ways is perfect timing, and I know we couldn’t have done it all on our own. In the midst of the good and the bad, in the midst of sleeping babies and intense tantrums, in the midst of enjoying reconnecting with Matt and not really enjoying nights full of interruptions to our sleep, I’ll rejoice, thanking God for this work He’s given to me to do and thanking Him for bringing us to this place.