a week of anniversaries

In a way that I’d never have predicted, the middle week of February has become one of great significance in our family’s story.

This Tuesday was the one-year anniversary of the shocking death of Matt’s older sister, Denya. Her daughters, in a gesture of which she would have been proud, chose to celebrate her life this week by asking Facebook friends to share their happy memories of her. It was fun to read of her love and laughter as experienced by other friends and family, too, but we definitely miss her. I miss her always encouraging Facebook and blog comments, her support for every new venture we pursued, her wise parenting advise, and, of course, the times spent hanging out together in her kitchen, enjoying and chatting about life together.

Yesterday was actually the one-year anniversary of our receiving pre-approval (PA) to adopt FangFang. We didn’t post about it far and wide on Facebook or anywhere else at that time – largely because we were en route to New York for Denya’s funeral, and we hadn’t yet told all of our close friends and family about our pursuit of adopting her. But still, as we drove on, snow-covered roads bringing us ever closer to the reality of the loss of our sister and friend, we celebrated the news that a new life would be joining our family, a precious girl we knew primarily through these pictures.

Our next milestone is today – the one year anniversary of Matt’s heart attack. One year ago today, after attending the calling hours for Denya, we were all resting in our hotel room when Matt suffered a sudden cardiac arrest. With our children looking on, I called 9-1-1, and our reality quickly transitioned from this

to this.

Matt’s heart attack has been a defining moment in our lives, one that, like having our first child, divides all of time into “before” and “after.”

Post heart-attack life is different than pre-heart-attack life. We have a radically different diet, eating almost exclusively low-sodium, plant-centered, pescetarian foods. Exercise is no longer viewed as a luxury to be pursued “once things settle down” but as a necessity, essential to sustaining life. We’ve become convinced that we cannot allow others’ desires to govern our lives – saying “no” has life-giving power. And beyond the practical changes we have made, we see life differently. Our default assumption is no longer that we are virtually guaranteed to have long, healthy lives together. The statistics for survival after cardiac arrest are sobering. My hope and prayer is that Matt and I will have many more years together – and I dream of what our future may look like – but we can no longer pretend that death is a far away specter of which we need only think once we are retired empty-nesters. Matt shared some of his thoughts on this day and that reality here. And the truth is that it is a source of some anxiety for me. We’re doing all we can to live healthily, though – and that’s all we can do. Beyond that, the calls for us are the same as those for anyone else – we seek to act justly, to love mercy, and to walk humbly with our God. We fumble toward one another, seeking to love and care for each other well, to honor our marriage vows. We pursue growth as parents and do what we can to encourage and pray for our kiddos to grow into thoughtful adults who will pursue God, be thoughtful and understanding, and fight for what’s right in the world around them. We look for ways to engage with the community and the world around us.

Life this week, while in many ways haunted by these anniversaries, has, for the most part, been simply normal. We’ve read books, learned about math, coached kids through resolvoing squabbles, played outside, eaten meals, done laundry and dishes, and relaxed with an episode of the West Wing or a game of Yahtzee after the kids have gone to bed.

And we look forward to the last of this week’s anniversaries. Tomorrow 4 years will have passed since the day Madeleine CaiQun joined our family.

This sweet girl has brought so much joy to our family – so many snuggles, so many good conversations, so much laughter. And so tomorrow we will eat Chinese food – noodles and dumplings, in honor of her province and the foods she loves so much – and celebrate.

This week is such a strange mix of reminders of life and death, of mourning and celebrations. We press on and pray that we can act honorably in the midst of it all.

FAQ: Home Almost Six Weeks! How’s FangFang adjusting? How are you?

At times it feels longer and at times shorter, but we’ve now been home with FangFang for almost 6 whole weeks! Some of the questions I get most frequently these days, in my few interactions with people who are not medical professionals or grocery store employees, are about the big picture of her adjustment and ours.

Attachment and bonding are always processes, processes with many variables and unknowns, processes best examined in retrospect. However, they are of such paramount importance for adoptive families that we adoptive parents are constantly on high alert, watching for indicators of progress (or lack thereof). We wonder to what degree our children are really getting it, that this is what family is; we wonder if they are really beginning to trust us; we wonder to what degree to indulge and to what degree to push; we wonder if we’re making the right decisions for our new children and for our families as a whole.

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You may remember that FangFang did not exactly appreciate my presence or attempts at caring for her in China. Having spent our time in China telling myself just to stay calm and positive and keep pursuing her in love regardless of what she did, I’ve needed to make sure I have been doing things to cultivate the warm, fuzzy love feelings for both of us. I’ll sometimes wrap her up in a blanket and rock her back and forth and look into her eyes, taking advantage of the oxytocin bump for us both. I’ll hold her on my lap while I read out loud or offer a hug or a kiss or a smile as we pass by each other. I try to take advantage of those 3-minute lulls in activity to do something relationship-building with her (and the other kiddos). We’ve incorporated more loving rituals into our lives as a family as a whole to build connections between all of us; for instance, before we begin our “reading school” time each day, the kids and I all sing the “Twinkle Twinkle Little Star, What a Wonderful Child You Are” song together. And as our time as a family of six grows, the love between us all is growing, too.

FangFang had actually decided pretty quickly after we left Sharon and Daniel that I was her person now, and that has been consistent, for which I’m thankful! The Ergo or Tula carriers, which she despised in China? She would now love to spend hours being worn and often protests when I tell her she needs to get down and play.

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She looks to us in new situations, and she frequently asks to be held – she’ll scoot up to me and put her arms up and ask, “Baby FangFang?” multiple times a day! She’s a pretty snuggly little girl. One night one of us casually mentioned something about love, and she, sitting next to me on the couch, looked up at me and put her hand on my cheek, and announced, “FangFang love.” Cue heart melt!

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She has continued to warm up to Matt more and more. She still prefers me, but she allows him to put her to bed, and if I’m unavailable, she’ll let him hold her, and she asks about him when he’s away from home.

She is generally a happy little girl, for which I’m very thankful, since that was the impression we got of her from the photos her foster home shared. I was worried that it would take a long time for her spark to come back after leaving them and coming to us. She does have occasional sad moments whose reason we can’t entirely discern and for which her English is insufficient to explain, which is very sad but is also very typical for kids adopted internationally. We try to hold her close and reassure her that we love her and she is safe, and eventually something (usually food) brings her back to her typical happy state!

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She also loves the other kiddos, and they love her, though there is certainly a large amount of interpersonal drama between any and all of them, too. We’re trying to cultivate kind, generous hearts and develop good relationships, but everything is a work in progress!

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I’m not entirely sure how to read her interactions with others outside of our family. Thus far, we have kept her with either Matt or me at all times. We haven’t exactly cocooned (a common adoptive family bonding strategy, keeping your child’s world small for a period of time after they come home, staying home as much as possible), largely due to the necessity of medical appointments and evaluations – in addition to our visit to the Omaha clinic, so far she has seen our pediatrician, had a local X-ray, a CT scan, a private PT evaluation, a private OT evaluation, an evaluation by the school system, and met with a local orthopedic surgeon. We’ve also been going to our church worship gatherings on Sunday mornings and just keeping her in the sanctuary with us for the entire time, and we’ve had a few people come over for dinner since we’ve been home. She is definitely more of an extrovert than most members of our family – she loves interacting with others. For the most part, she warms up to people pretty quickly but still continually looks to us for reassurance and generally behaves appropriately with them, which is encouraging. However, we do notice some overly affectionate tendencies, and there was one night recently on which some friends stayed for dinner, and within minutes of their arrival, she was reaching out toward the guy for him to hold her – the return of the mommy shopping! We weren’t sure that she initially realized that he wasn’t Matt – but it was still a little disconcerting.

We’ll continue to take things slowly. In the grand scheme of things, 6 weeks is not very long, particularly for a child who has lived for over 3 years outside of a family. There are definitely moments during which Matt and I yearn for a date night by ourselves, or we think about being able to go to our missional community group meetings, or I wish it were easier to go hang out with friends. This is just a stage, though. Laying the groundwork for healthy, secure attachment is so important, and we want to respect that and take the necessary time to do it right, so we’ll hang in there, keep reading the signals, and do what we believe we need to do to facilitate bonding and attachment.

Overall, we are so glad that she really is settling in pretty well. She seems to be increasingly understanding that we are her family and that this is her home. She seems happy. She’s learning English and increasingly able to communicate her needs and desires. We’re all getting to know one another more and establishing these new family dynamics, and everyone seems to be doing pretty well with that. We’re worn out, both mentally and physically, and we know we still have a long way to go, but I don’t think we could ask for much more at this point in our journey!

Moving Toward Normal

Matt went back to work last week, so while we’re still settling into life and working toward our new “normal,” this was a big step toward that normal. It was an intimidating one! When we came home with FangFang, going from being home with 3 kids by myself a lot of the time to having both Matt and me home with 4 kids felt pretty manageable; I was not sure that transitioning to a lot of time of me being home with 4 kids by myself was going to be the same!

Honestly, overall, it has gone better than I expected!

The hardest part has been the toddler naps (or lack thereof). Matt had been putting the littles down for their naps, and they’d gotten used to that, apparently to the extent that my presence is now a significantly distracting novelty. Last Monday neither little one napped. Tuesday only one napped. But Wednesday and Thursday both napped, and it was glorious! I could work! There was a break for me in the middle of the day. It was so nice. No naps on Friday. Monday of this week both littles napped (but only after a combined 2 hours or so of effort from me), and Tuesday neither napped. That has been incredibly frustrating – not only do I not get to work or get any calm, quiet time during the afternoon, but I spend 60-90 minutes trying to get the littles to do something they’re not going to do, and that’s time I don’t get to spend doing anything else productive, and they don’t nap anyway. Then we’re all grumpy for the rest of the afternoon. I’m really not ready for them to give up naps – but whether I’m ready for it or not, I’m not sure they’ll keep napping regularly for very long. I need to come up with a different strategy for getting in my work hours, and I think I may need a different nap-encouragement strategy, as well. I’ve gotten some advice, and I’m working on it. In the meantime, this is an area in which we could use prayers – for patience, gentleness, and sleep.

We’ve been able to do school every day, which has been really encouraging to me. We’re figuring out what works and what doesn’t. Being intentional about getting out some good toys for the littles makes a huge difference. Often times, trying to do everything in the morning does not work; but neither does saving the most intense stuff for the afternoon. We need to start with math right away and get through it before we move on to anything else. And while the bigs are doing math, I can often read to the littles and get in a little bit of quality time with them before I need to devote my focus to the bigs again. Once math is wrapped up, I give all the kids a little bit of time to play. Then we do Language Arts and “reading school” – Bible, history, geography, and the girls reading out loud. If everyone’s stamina is holding up, we can sometimes get in science, too, but it often works better to leave that for after the littles’ naps. We’re making our way through the curriculum at a pretty good pace, and while I would have loved to have gotten more done before we went to China, I’m generally pretty happy with where we’re at right now and how we’re able to move through it even with everyone home.

science experiment time!
science experiment time!

I’m working on the balancing act of my own household responsibilities and investing in the kiddos beyond school time. Miranda really enjoys games like Backgammon and “the dice game,” a simplified version of Yahtzee that she’d been playing with my dad. Madeleine CaiQun loves reading and snuggling. Both littles are very into almost anything I’ll do with them – building towers and toppling them and snuggling and reading together. Everyone loves it when we pretend they are airplanes and I fly them around. I’m trying to make time for those things.

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At the same time, though, I need to pay bills and keep up with dishes and laundry. Friends from church had been bringing dinners for us a few times a week through last week, which was so helpful, but I’m now back to planning and preparing all of our food. I’m incredibly thankful for all of the meals I prepared and froze last summer and fall – those are going to sustain us through much of this semester, I expect. Matt has also been helping out with all of the necessary household stuff in the evenings.

And in the midst of it all, we’re tackling appointments and evaluations. In the space of 11 days, we’ve had or will have 11 different appointments, procedures, or evaluations – not all for FangFang but many of them for her.

The big girls are convinced that while we're waiting for PT to start, they should be helping FangFang learn to crawl.
The big girls are convinced that while we’re waiting for PT to start, they should be helping FangFang learn to crawl.

I’ve also spent hours filling out paperwork and talking with intake coordinators for various programs and checking items off of our running to-do list with the nurse at our pediatrician’s office. Friends have been kind enough to help out with our kiddos, which I so appreciate, so that I’m not dragging 4 kids with me to every single appointment or procedure. A pretty quick x-ray appointment? We all go. It’s just part of life. However, today’s CT scan for which sedation is required and I need to be able to focus on a 3-year-old who derives major comfort from food and is not allowed to eat for hours before the procedure and whose sedation recovery I’ve never experienced before? I’d like to tackle that one without another 3 kids in tow, thankyouverymuch!

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with all 4 kiddos in the x-ray waiting room

I did leave the house by myself with all 4 kids multiple times last week, an accomplishment of which I was immensely proud! It requires a little bit of planning, but it feels pretty manageable, so I’m thankful for that.

I don’t feel like we’re in any sort of normal rhythm yet. I think we’re tackling everything we need to do in order to move toward that, though, and I have hope that we’ll get there. Of course, we may get there just in time for the end of Matt’s semester, which changes everything again, or for a femur rodding surgery, which will change everything, too, or – please, no! – a femur fracture, which would also change everything, but we’ll work through all of that as it happens. We just keep moving forward, taking one step at a time, and moving toward the goals we hope to reach.

Why I Marched

I’ve generally stayed away from politics on this blog, and I don’t intend to change that in large scale. But I do write about our values, our experiences as a family, what is important to us, and what we do – and all of that affects our politics. I was raised by liberal Democrats; became a Christian and a conservative Republican in college; and have now transformed into an independent who tends to vote Democrat. The details of all of those changes are beyond the scope of this post, but their outline gives a bit of context.

I don’t expect everyone – or anyone – to agree with me. I don’t think my views are typical in America today. But I want it recorded for our family, for my kids, how we are working to think through these difficult issues and try to act honorably in the world.

I’m pro-life. I believe that babies are people, both before and after they exit the womb. I believe that, once created, they have a right to life. However, I also believe that black men are people, that just as the unborn baby in the womb of the woman considering abortion deserves to live out her life, that black man choked or shot by police officers deserved a right to his life. I believe children in Syria have a right to life. I believe children living in poverty in America deserve food and high quality schools and to be treated with dignity. I believe health care should be affordable. I believe people with disabilities – including my daughter – should have the same opportunities as everyone else. I believe in a healthy middle class and in prioritizing support for those who are less fortunate instead of subsidizing those who are most wealthy.

I realize that the Women’s March in Washington DC is, in part, about protecting a woman’s right to get an abortion. However, I do not believe that abortion access is all that’s included under the umbrella statement, “Women’s rights are human rights.” Women’s rights also include the right not to be sexually assaulted by anyone – including the President of the United States – no matter what she’s wearing, no matter how much she’s had to drink, no matter what. Women’s rights include the right to be treated with as much respect as a man in a similar situation. Women’s rights include the right to be seen as leaders instead of as bossy and to be seen as more than just their bodies. I support all of those rights.

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Additionally, it doesn’t seem to me that it’s been proven that prohibiting abortion is necessarily the most effective way to cut abortion rates. It seems to me that, similar to our “war on drugs,” focusing on the demand side has much greater potential efficacy than attempting to regulate supply. Shannon Dingle wrote this past summer about why, as a pro-life person, she was planning to vote for Hillary Clinton, and that post resonated with me to such a high degree that I shared it on my own Facebook page multiple times. It seems to me that the Democratic Party and the causes associated with it is, to a much larger degree than the Republican Party right now, the party of life. It grieves me that there is no party with which I can identify and support completely. However, faced with a choice between two imperfect alternatives, I’m going to choose the better one. I’m going to choose life.

The event here in Columbia was marketed as being for trust, equality, freedom, hope, peace, justice, rule of law, dignity, and prosperity. It was described on the Facebook event page as being meant to “demonstrate a broad opposition to the Trump agenda” and to “show unity in the fight for the rights of women, other marginalized groups and issues including climate change, environmental concerns, minority rights, peace and social justice.” 

I’m for all of that.

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And I want my children to see that there are things we can do, even in defeat. Back in November, on election day, I let the big girls stay up late, expecting to celebrate with them as we saw the victory of the first female president in history announced. Instead we had a somber bedtime that night, and we’ve had many conversations since about what Donald Trump stands for and why we’re disappointed that so many people voted for him to be the leader of our country. I want my children to know and see that even when we don’t win one battle, we continue to work and fight for the principles in which we believe. I want them to be thankful for the many blessings of living in America – not least among them, the peaceful transfer of power and the right to assemble in protest. I want them to see what that looks like and have the opportunity to participate in it.

And so today, Matt and I loaded everyone into the van and went to meet up with the rest of the marchers.

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And together with so many others, we marched through downtown Columbia.

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My big girls chose what they wanted their signs to say. In support of her new sister and her rights, Miranda’s proclaimed, “People with OI matter!!” Madeleine CaiQun’s announced, “I am the future!”

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I was proud to march with them today.

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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!