Costume Changes

The moment we wheeled Rebeka through the Disney gates, the Disney staff called her “princess.” “Have a great day, princess,” or “step this way princess.” Our second day at Disney started out with a trip to the “Royal Faire” where Rebeka was decked out in a super fluffy, glittery Cinderella dress so she could look the part. After changing, she settled onto the floor with dozens of others princesses to watch a Tangled play.


We hunted down almost all the Disney princesses throughout the course of the day to get their signatures and some pictures. Of course, Cinderella was a favorite.


We rode the carousel again. The boys have been real troopers, riding the Little Mermaid ride twice and gamely enduring the more tame rides, though they’ve had a chance to sneak off for the thrill rides as well. By the end of the day, all of us were dusted with Rebeka’s princess glitter. Her dress left a trail of sparkles wherever she went. She looked like a beautiful night sky, her dark skin and all that glitter like twinkly stars. But, when it was all said and done, Rebeka is still our silly, goofy Rebeka.



In addition to seeing the ocean and going to Disneyland, we had another item to scratch off Rebeka’s bucket list: snow. We drove over two hours out of L.A. to Big Bear Lake, and headed straight to a tubing hill we’d read about. It was super warm, mid-60’s, but there was still snow on the ground and we couldn’t wait for her to experience this new thrill. Unfortunately, after just one slide down the hill, the staff apologetically told us that anyone wearing a cast who has had surgery can’t tube. I guess we should have known that. It would have been really bad if Rebeka went flying off her tube and hurt herself. Rebeka had fun on her inaugural slide, but she honestly didn’t seem too disappointed, and Clay was a little relieved. He said the hill was dicey, and he could easily see how an accident could happen.

Undaunted, we traveled a little further down the road and hung out at the base of a ski area.



We did another costume change, but this time instead of a princess dress she was donning waterproof riding pants (thank you Daehlers!), and a plastic bag for her cast. Eventually she also put on mittens, a hat, and a heavy coat she brought from Bugesera. She arrived in Austin last August with three coats and a couple of heavy sweatshirts, and she was finally getting to use some of them! She was eager to try a snow angel:



And of course we had to make a snowman.



Our family usually goes skiing/boarding at Spring Break, so being around snow seemed right. As we watched people coasting down the hill, we all got a little itchy, wishing we could take just one run down. Alas, the day was getting late and it wasn’t worth the hassle and cost for just a couple of runs. So, we hopped back in the car and headed back to L.A. This has been a weird trip in a lot of ways. It’s strange not having Alayna with us (she’s on her junior trip in Europe). Our car trip has a totally different dynamic. Little “super-dee-duper-dee-doo’s” resonate from the backseat. The wheelchair rattles and clangs around in the back. But the mountains are beautiful, and the family picture is still very sweet.



We look forward to trading stories with Alayna once we’re all back home again. Thinking of her reminds me of the many costume changes she made as she decided which clothes she would take and how they would all fit in the one carry-on-size suitcase she could bring. She must have tried on dozens of outfits and combinations to find just the right ones.

We have just one more day in California, and I think we’re done with “costume changes.” No Cinderella dress or snow pants required for the aquarium or the bird sanctuary. Then maybe we’ll go in search of the Hollywood sign, or Sunset Blvd., or revisit the beach . . . so many choices, so little time.

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Day Two: Super-dee-duper-tee

Rebeka has a new refrain. She wakes up saying, “super-dee-duper-tee” and she goes to sleep saying it just one more time, “super-dee-duper-tee.” We think she’s excited.

Our first day at Disney was a blast. We decided to splurge and get a VIP guide who can get us to the end of every fast pass line at any time, cutting out wait times waaaay down. This way we can do both parks in two days, and see everything we want to see. We found out just minutes after meeting our guide that she has been to Rwanda. TWICE! It was a match made in heaven, we love Courtney.

Rebeka’s desire? A princess dress. The only souvenir she asked for? A bubble “gun” that blows bubbles when you pull the trigger. Her favorite ride? The carousel. She was game to try almost every ride, even Space Mountain, but she’s not a fan of super-dee-duper fast, or scary. She loved the parade,and our “VIP” status meant we got a primo viewing spot. The princesses took special note of her, it seemed, blowing her kisses and waving. She was all smiles.Here are some of our fave pictures.





This was by far her favorite, we rode it twice.

This was by far her favorite, we rode it twice.

This was a super tame ride, but it started by riding our little boat through the jaws of a whale's open mouth-Rebeka DID NOT want to go in that mouth!

This was a super tame ride, but it started by riding our little boat through the jaws of a whale’s open mouth-Rebeka DID NOT want to go in that mouth!

Once we were in the whale's mouth, she was still a little scared.

Once we were in the whale’s mouth, she was still a little scared.

This was our first princess signature. Merida from Brave took lots of time making Rebeka feel special.

This was our first princess signature. Merida from Brave took lots of time making Rebeka feel special.

The parade was awesome!

The parade was awesome!



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California-Day One

I thought it would be fun to share some pictures of our Spring Break trip to California with Rebeka. Day one was mostly travel, with a very early morning wake-up call and lots of time on the plane. When Rebeka traveled to America, her first time on a plane, she never got a window seat. We made sure that was remedied.



She was so excited, making silly faces when we took off and she felt it in her belly.

She was so excited, making silly faces when we took off and she felt it in her belly.

We went straight to Hunington Beach after landing in L.A. where we saw amazing kites, a very cool pelican, a couple of dolphins, and some “swell” surfers.

We got right up close to this guy, and watched as he crouched and then dove for a fish.

We got right up close to this guy, and watched as he crouched and then dove for a fish.

Isn't he gorgeous?

Isn’t he gorgeous?

This is Rebeka's first time to stand at a seashore and see the ocean. When we asked her what she thought, she said, "It's good." We're working on more descriptive adjectives.

This is Rebeka’s first time to be at the seashore and see the ocean. When we asked her what she thought, she said, “It’s good.” We’re working on more descriptive adjectives.

We walked on a long pier out to a cute little diner for a 2:30PM lunch, then went to the beach.

Another "foot in the street" for those familiar with our first blog.

Another “foot in the street” for those familiar with our first blog. It’s no longer innocent of honest to goodness beach sand.

Clay insisted that we would ALL put our toes in the water. Rebeka said, very seriously, that she would NOT put her toes in the water. Clay had other plans for her. And, of course, after screaming came giggling.

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She loved it. She also loved playing in the sand, burying Nate’s feet.

Did we mention she's flexible?

Did we mention she’s flexible?

I loved watching them all. It was fun to watch Benji run like a puppy. Shirt-less is his natural state, he loves the water and he isn’t afraid of a little cold.


Ultimately he ended up face down in the ocean, but he didn’t care. Nothing a little sunshine and a towel wouldn’t fix. Day One, ocean, check. Today we’ll do our first Disney Day, so stay tuned for more pictures. I think what we’re all most excited about is seeing Rebeka’s face when we walk through those gates. She told us she thought when we landed in L.A., we would walk out into Disney. The L.A. airport was a big disappointment! No matter how we try and explain what Disney is really like, or show her pictures, they just can’t live up to the real deal. I don’t know . . . I think the ocean runs a close second to Cinderella.

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A local Boy Scout troop delivered bags and bags of mulch the other day, stacking them neatly next to the garage. When Rebeka asked what mulch was, we tried to explain it was kind of like crushed up trees, kind of like dirt, and we spread it in the flowerbeds. She was intrigued when I told her it was kind of like when we picked up leaves, but instead of picking it up, we would spread it out. Rebeka had great fun picking up leaves earlier this year.


The next couple days, every time we drove into the garage, she would ask about the mulch. “When will we do it?” This afternoon, the anticipation got too great for her. She explained how she would beg Clay, “Pleeeease can we spread the mulch?” Beg she did, punctuating it with one of her signature, high-pitched squeals. Benji was disgusted by this mulch enthusiasm. None of our kids are mulch enthusiasts. In fact, Nate gave a soapbox speech at a competition last year all about how much he hates the stuff. Rebeka was able to work her charm, and Clay dutifully hoisted a few bags of mulch into the backyard flowerbeds and they spread it together.


We decided Rebeka should go without her brace while spreading mulch so it wouldn’t get dirty, and we protected her cast by tying a bag on. This naked left foot was something new for Rebeka. She wears her brace all the time, day and night, only taking it off to bathe her foot. She was worried about putting her bare foot in the grass, afraid it would “tickle.” She kept it propped up on the other leg for quite a while, so even her heel wouldn’t touch.


It finally dropped to the ground as she raked the mulch with great vim and vigor.

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When we went back inside, I looked at that pretty little naked foot. I usually don’t pay much attention to it, I’m too busy scrubbing it and socking it and bracing it and shuffling Rebeka on to bigger and better things, like breakfast. We tried sliding it into her croc without the brace and realized how tiny it is without all that extra plastic.

There are many words I could use to describe Rebeka. She’s tough. She’s silly, so she fits right in with our family.

Alayna styled bows out of hair, those without enough hair had to make do with ribbons . . .

Alayna styled bows out of hair, those without enough hair had to make do with ribbons . . .

She’s mature beyond her years, but at the same time she seems young. She’s ten years old but still gets excited about wearing princess dresses to Disneyland next week. A good word to describe Rebeka would be innocent. And for some reason that’s the word that came to mind when I looked at her little foot. It looked innocent. In it’s current flat-footed state, it hasn’t touched prickly grass or run down the red dirt roads of Rwanda. It hasn’t felt a hot sidewalk or a gritty, sandy beach. And while I can’t wait to see her foot become “seasoned” with grass and sand and sidewalks, I get that it’s hard. I get that it’s been treated with tender care for months and months now, and exposing it to the great big world is going to take some getting used to.

On March 18th her doctor will remove the cast on Rebeka’s right leg and we’ll get our first peek at that other innocent little foot. And while her doctor has seen hundreds of these corrected club feet, we will look at it like Rebeka looked at those bags of mulch, with great excitement. Maybe we’ll even squeal a little. Then it will be casted back up again, for 2-4 more weeks. There is lots of work in our future, lots of mulch to spread, lots of steps to take. Each day is a new day, and we don’t know exactly what to expect. We know how hard it was last time, but we don’t know what this next time will be like. We’re innocent, and so we can be a little excited. I like life that way. Innocent expectation, accompanied by a certain someone’s high-pitched squeal.

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Live, Learn and Leave

About five years ago our family was in the middle of a nine and a half month, travel-around-the-world trip. While traveling, we rarely stayed in one place more than three or four days. During our limited time in a new city, we’d learn the transit system, where to find the best chocolate éclairs, and the ideal sock-hanging scenario in our hotel bathroom.

We did a lot of laundry in sinks and bathtubs.

We did a lot of laundry in sinks and bathtubs.

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Clay’s dad came up with the perfect phrase to describe what generally happened: live, learn and leave. What he meant by that was that we’d live a few days in a new place, and by the time we learned what we needed to know, we’d leave.

Today we took Rebeka to Dell for a cast change in the operating room. While we weren’t sure exactly what to expect this time, painful memories from our last visit still lingered, there are certain things we’ve learned. We’ve learned that giving Rebeka some “sleepy medicine” before she gets wheeled back makes the rest of the anesthesia process a snap. She’s learned how to swish and spit and wipe her tongue with a paper towel to get said “sleepy medicine” taste out of her mouth. We’ve learned to bring “Georgie” and “Baby” for company. We’ve learned to be sure and pack her pink headphones for the recovery room wake-up, as movies are an excellent distraction.

But nothing prepared us for what her doctor had to say once he came out of the operating room. He said, “we’re done.” As in, we’re done with operating room cast changes. Never again. We were giddy, and so was he. We thought we had at least one, maybe two more OR visits in our future. We went back to find Rebeka still sleeping in the recovery room, and when she awoke, wonder of wonders, she was fine. Just a “little bit” of pain. A tiny swallow of medicine and we were on our way out the door. After months of operating room cast changes we’d finally found the perfect combination of anesthesia/pain blocks/medication . . . and then it was time to leave. Were we a little sad?


Well . . . we aren’t sad about no more painful cast changes, but we will miss all the sweet nurses and doctors and anesthesiologists we’ve come to love and admire. There were many, many people who came to know Rebeka by name, from the person who checked us in at the front desk to the nurse who checked us out when it was all over, and everyone in between. Still, we are excited. As we gathered up our stuff to leave, Clay decided to give his hands one more squirt of antibacterial foam. Containers are located on every doorframe. I hear Rebeka say, “Gah!” and look over to see her finely misted with foam, her hair, her face, and her wheelchair. Clay insists it was an accident. And so we left laughing, just as we arrived back in November, on Rebeka’s first OR cast change, laughing. On that morning we were all feeling a little nervous and scared. When Clay unexpectedly grabbed Rebeka’s tiny baby doll and sat on her, we were surprised and a little horrified but definitely laughing.

We’ve lived. We’ve learned. And now we leave. We’ll be back at Dell, but not the OR. We’ll be back for a brace for Rebeka’s right leg, back for PT, but we’re definitely on the downhill slide. We have several more months before it’s time for Rebeka to return home, we’re thinking June or July. It’s hard to think about the leaving part, so for now, we’ll just enjoy the living and the learning.

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Here Comes the Sun . . .

Things are so much better since I wrote my last post. We aren’t waking up in the middle of the night to give Rebeka medicine, no more leaky Ziploc ice packs, and she’s back on the plasma car after a short hiatus. I thought these two pictures represented her journey from cloudy skies back to our sunshiny Rebeka. This first one was taken just last week on Nate’s birthday, February 5th. She’s trying here, but she was still all propped up, sleeping on the couch at night and heavily medicated. Even a clown nose and a party blower can’t hide the fact that she’s not feeling so great.

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And here’s our sunshiny Rebeka, sporting the new Longhorn headband her teacher made for her .

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Have I mentioned how much we love Mrs. Karen? Sure, she teaches Rebeka reading and writing, addition and subtraction, but she also hauls her sewing machine to our house so they can make a Valentine garland together.

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They sewed these little hearts and then strung them together to make the garland Rebeka is wearing around her neck.

They sewed these little hearts and then strung them together to make the garland Rebeka is wearing around her neck.

There were some cloudy school days in the very beginning, when Karen first started coming and Rebeka was still so shy and we were all figuring each other out, what she knew and what she didn’t. Karen discovered if she walked across the room and said, “Good morning!” and then said, “I can’t hear you,” when Rebeka whispered “good morning,” she could eventually coax a smile and a hearty “good morning!”  Karen brought sunshine to our school days, singing goofy songs and encouraging each small step Rebeka made. I watch them now, doing school on the red rug, listening in as Rebeka sounds out a Bob book, and I smile. Lots of sunshine there.


Rebeka is a pro at bouncing back. Last weekend we decided to give that girl a day of beauty. Sweet Natalie arranged for Elizabeth to do her hair, and then go get her ears pierced. Now, doing Rebeka’s hair is not always a pleasant affair. It hurts!


But the results were pretty stinkin’ cute! And check out those beautiful ears!

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When I asked if it hurt, she said, “A little bit. It’s okay.” The girl is bouncy. Like all girls, she can also be a bit finicky. She decided the curly whirls had to go, but she’s taking extra-good care of those earrings and can’t wait to show her sisters back home. My dad is in Rwanda right now, and he was able to pay a visit to Rebeka’s family.

This is Rebeka's mom, her oldest sister, and two of her younger sisters with my dad.

This is Rebeka’s mom, her oldest sister, and two of her younger sisters with my dad.

You may not be able to see it in this picture because it’s so small, but Rebeka noticed her big sister Esperanza’s earrings first thing! While he was there my dad delivered a special photo album we put together. Mrs. Karen spearheaded the project, helping Rebeka come up with the things she wanted to say and then helping her carefully hand write it. Rebeka spent a long time on the album, and I think all that hard work was worth it when we saw this pretty smile.

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The woman on the left is the translator, Rebeka’s mother has the scarf on her head, and that’s my dad showing her the album.

We’ve decided to take Rebeka to Disneyland for Spring Break, and I’m not sure who’s more excited, Rebeka or the rest of us. What I do know is that there are many sunshiny days ahead. And maybe it’s those gray days that make the sunshine all the warmer. There will be some more gray days. She’s got two or three more cast changes that will require anesthesia, waking up wincing and arched back and back to nighttime medicine. Hopefully she’ll recover faster. And by March 11th, those cloudy days will be well behind us as we don our Mickey ears and head to California.

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A Hot Griddle and Sharp Knives

IMG_3641A week ago Rebeka was sitting pretty with her nerve block, proud of her bright pink cast. I write this post the morning of Rebeka’s first cast change after surgery. It was rough. Rebeka woke up from the procedure in a lot of pain, back arched, tears rolling. Clay and I were on point in recovery, along with our sweet nurse, as Rebeka received Norco, then morphine, and then Valium, all in an effort to stave off the hurt. All that medicine finally kicked in and she zonked out, still wincing in her sleep as what we can only guess were muscle spasms surged through foot. She was wheeled out of the large recovery room and into a smaller room to await discharge.

The adrenaline was still coursing through our veins, even while she slept. On the heels of a hard week, waking up to give medicine every two or three hours, keeping her foot elevated and iced, carrying her with great care wherever we needed to go, while keeping up with the other three kids, we are all running a little low on energy.

These charts help me keep her medicines straight.

These charts help me keep her medicines straight.

But seeing her in pain, Clay and I kicked in again, focused on making things better, being her advocate, insisting to our nurse and anesthesiologist that this pain was worse than what we’d seen before and we really did think she could use more medicine. They were kind and believed us and obliged.  It was such a relief to finally see her sleeping, but what would happen when she woke up? When we got our discharge papers, we eased her awake. We tenderly wheeled her out of the hospital, being extra careful at all the tiny bumps we had to roll over. Clay gingerly hoisted her into my car. All the while, she was still gradually waking up. I kissed Clay goodbye and he headed to work, both of us emotionally exhausted. As I started to drive, Rebeka says from the backseat, “Can I have some french fries?” I just about cried. As we talked, I realized she didn’t remember hardly any of it. She was okay, but I was still filled with all this protective, take-care-of-things energy.

So here we sit, on the couch. She eats her french fries. The pain is returning. She describes it as “spicy” and winces often. We’re trying movie distraction, and as soon as we can give her more meds she’ll get them. I am so grateful for medicine and the pain relief it offers.

Her doctor removed two pins today and manipulated her foot to achieve a better position after just one week of recovery from surgery, so it’s understandable that it would hurt. A lot. The nurse said the best way to handle the muscle spasms is to keep the foot really elevated and breathe through them, like contractions. They shouldn’t last more than 48 hours, but on this end 48 hours sounds like an awfully long time. At least at the end of contractions you get a cute little baby. What do we get at the end of 48 hours of muscle spasms? My hope is that we get back our “old” Rebeka. It’s hard to take these big steps backward, after seeing how well she was doing. It’s hard to believe she actually walked to the mailbox just two weeks ago. It was like being in parade that afternoon, as friend after friend slowed down their car to cheer. I could practically hear the Chariots of Fire theme music wafting through the air.

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We saw glimpses of that old Rebeka just a few days ago, perched on the counter, helping Alayna cook. I walked in to find her flipping pancakes on the hot griddle, and chopping veggies with a sharp knife.

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I would never have handed that child a sharp knife or let her get so close to the griddle, but Rebeka was doing just fine. She could handle the responsibility. Something tells me back home in Rwanda, she helped her mom cook. She wielded knives and lingered near open fires, and remained unscathed.

I am guilty of being overprotective. I am grateful for Alayna and her ability to give Rebeka some freedom. I am grateful for Katie in PT who knows Rebeka can do “just a little bit more.” I am grateful for those who push when I am too afraid to try. And maybe someday I will be grateful for this morning, this pain, these hard times.

If someone had asked me six months ago if I could handle pulling out nerve block catheters, caring for an inconsolable child in pain, carrying said child here to there and everywhere, and giving up freedoms I thought I had earned and deserved, I would have said “no way.” But nobody asked those questions. Nobody knew what to ask. They just gave. Like hot griddles and sharp knives. And here I am. Rubbing the feet of a girl I have come to love. I can do it, with the help of so many who have rallied around us, and a God who has us all covered. I just didn’t know I could.

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She’s Got Wheels

When Rebeka first came to Austin, I was a nervous wreck for many reasons. Here was this little girl who I didn’t know, and I had no idea how to care for her. How much could she do on her own, and how much should we do for her? All we had seen were pictures.

Clay first met Rebeka while on a trip to Rwanda. He was there to help small business owners, but he joined a mission trip to go visit Bugesera, and met Rebeka there.

Clay first met Rebeka while on a trip to Rwanda. He was there to help small business owners, and he took a side trip to Bugesera with a mission team, and met Rebeka there.

 I laugh at what she must have thought as we brushed her teeth for her and tried to put on her shoes (she had to show us how they tied when we couldn’t do it.) One thing I remember her doing is opening up the back door and going outside without a backward glance, lurching amazingly fast on the tops of her feet. I was so afraid she’d fall down the stairs or into a flowerbed from our high back porch! There were all sorts of things that could hurt her, but she loved to be outside and she was pretty accustomed to fending for herself.

One day I found her sitting on a table on our back porch.

One day I found her sitting on a table on our back porch.

Rebeka loved the trampoline, running around the edges chasing, or being chased.

Rebeka loved the trampoline, running around the edges chasing, or being chased.

 A lot of that freedom and independent spirit was squelched the day she got her first cast, August 29, 2012. No longer could she beg someone to chase her, or stand at the kitchen sink to clean dishes (because that’s pretty fun), or waltz out the door to go where she wanted to go. She had to wait on someone to carry her, or scoot on her bottom to get there. She couldn’t open a door from the floor. She was stuck.

Ever heard of a “plasma car”?

plasma car It’s this great little car that is propelled by turning the steering wheel back and forth, and it is Rebeka’s newest favorite thing. My parents had one at their house, and over the Christmas break we commandeered it and brought it home. The plasma car means FREEDOM!!! She’s now transporting herself to the kitchen table or the laundry room or wherever else she wants to go. She just props her legs up and she’s off. She’s learned to maneuver it quite well, picking up speed to get over little bumps or “park” it on the rug. She can get herself on it from the floor by herself, or drop down onto it from the dinner table. I hadn’t realized how often I was asking her “Where do you want to sit and what do you want to do?” while I took care of laundry or dinner or some other chore. Now, I just put her on the car and she can go look out the window or find Clay’s knees to tickle or take Benji and Molly on a ride.


Rebeka has actually lived with restricted freedom for a long time. I often forget just how handicapped she is, because she’s compensated so well. It’s when something little happens, like I’m holding her and I hand her a chip to eat, but she can’t lift it to her mouth because her arm is dangling and she has to have a table or a knee or something she can use to get her arm to her mouth, that I’m reminded.

And so I am thrilled to see her regain some of her freedoms, the ones she had come to count on. Not only does she have wheels, Rebeka was also given a short leg cast last week. With a brace on the left, and a short leg on the right, she can bend both knees. She can walk upright with her walker. We are getting just a taste of what it will look like when she walks on the bottoms of both feet un aided. All that walking is helping get her legs in shape as well, strengthening bone and muscle. We’ve come up with a game: how fast can she walk the circuit from living room to front door, through laundry room, and back around? We keep her time sheet up on the fridge. I’m telling you, this girl loves a challenge.


With another surgery looming just around the corner, there is still much to celebrate. We did just that the other day, when a friend heated up her hot tub to take advantage of the rare evening when Rebeka is cast free (always the evenings before her next cast change).

She loves to clown around, and she makes these funny faces that are always good for a laugh.

She loves to clown around, and she makes these funny faces that are always good for a laugh.

And of course Rebeka loves to celebrate with her toes. She took advantage of an evening at home with Alayna to adorn her toes with some bright, festive colors.


That plasma car has got me thinking about freedom. Sometimes we take freedoms from ourselves. When we diet, or get up early to read scripture or pray, or when we have kids. Other times we have freedom taken from us, maybe from injury or age. I think either way, in the absence of freedom we have the opportunity to grow stronger. This is certainly true for Rebeka, and it’s also been true for us. It is good to sometimes let go of what we think we control, and let something better rise to the surface. And then when something like a plasma car comes along, we can be exceedingly grateful for our newfound freedom. I know the Davis family is all very grateful for Rebeka’s new wheels. I have just a word of advice for those visiting the Davis house these days: watch your toes.  

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Same Song, Second Verse

Life carries on in the Davis house, and though much of it focuses on Rebeka there have been some pretty big events for other members of our family. There was Alayna’s performance during halftime at the Cotton Bowl, when her school’s dance team, and many others, shared the field with the Kilgore Rangerettes.

photo 1 And then there was my big agent news, and getting to lecture to our local Austin writer’s group.

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And most recently Alayna completed the 3M half marathon in 1:50, fifteen minutes faster than she thought she could do.


Rebeka seems to seamlessly slide into all these events. Whether staying overnight with her sponsor family while we went out of town to watch Alayna dance, to celebrating my agent success in the library parking lot when I got the news on my phone (though she had no idea what we were celebrating), to getting woken up while it was still dark outside and then wheeled to the finish line where she waited, all bundled up in hat and gloves, to cheer when Alayna ran past.

I am grateful for this easy-going attitude, because we have another big event coming up. Rebeka’s next surgery date is January 29th. Nobody is looking forward to surgery, but we’re all looking forward to getting past it. We’re looking forward to her right leg being in the same place her left leg is. Where it doesn’t hurt to touch (at least not very much). When she can practice walking on it with her walker, and wear a sock on it, and no more casts. Part of me wants to adopt the attitude that this is just the same old, same old, no big deal. Same song, second verse. We know how this whole surgery deal works. One night in the hospital, go home and get up in the middle of the night for meds for about a month. Cast changes in the OR three times. We can do it. We did it before.

But there are many opportunities for things to be different this time, reasons to worry if I let myself. Anything from two nights in the hospital to the possibility of a skin graft (praying this isn’t needed). But I know worrying about them now does no good for anybody. I need to learn how to live in the moment a little better, and I know just who to teach me. The girl who begs for a boat ride, even when it’s cold outside, because that’s what you do when you’re at the lake.

DSC_0976 And the girl who finds my phone sitting around and takes a selfie with a fake moustache, because that’s what you do when you find an unattended phone.

photo 3 Rebeka is all about seizing the day, whatever that day may bring. And so we will seize all the days leading up to her surgery date, and when that date comes, we’ll seize that one, too. Maybe a different song, with an unfamiliar verse. Because that’s what you do when you’re with Rebeka.

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These Crocs Were Made For Walkin’ . . .

This is what surprise looks like.


And joy looks like this.


And this is love.


You know how fun it is to come across that perfect gift? When Rebeka saw the totally impractical but impressive four foot stuffed Curious George by the tree Christmas morning, we got the kind of reaction all gift-givers hope for. We got it again for the t-shirt, the book . . . it didn’t matter. All gifts were things of wonder and she was full of gratitude and “fank you’s” and big smiles.

Surprise. Joy. Love. Add shoes.


That’s right, we bought Rebeka her first pair of shoes! We had another fairly traumatic cast removal at home Tuesday night (New Year’s Day) but it went much better than last time. This time she knew what to expect, and her feet had two more weeks to heal. Her foot was still really fragile, though. She wouldn’t even set her heel on the ground and putting on a sock was a painful ordeal. Wednesday morning at Dell our new friend Bud made a cast and then took it off to use as a mold for a new brace. We’re making lots of friends at Dell, from cast techs to doctors and nurses and orthotics guys like Bud-who looks a little like Santa.

Touching her foot, putting on the cast and cutting it off, was painful and scary and Rebeka’s tears soaked the paper on the examination table and she squeezed my hands hard, hard, hard and pressed her head into my chest while Clay wiped her face and we all gritted our teeth and bore down. But, we’re beginning to realize this is part pain, but also part fear and anxiety. I think she’s also realizing this, and it’s getting a little easier on both sides. We got to pick the pattern we wanted for her brace, a pretty light purple with butterflies. And we were told, almost as an after thought, “Oh yeah, you’ll need a shoe.” I gasped. You mean we get to go shoe shopping?? We left the clinic with no cast on Rebeka’s left leg, the first time that’s happened since September. Not only that, we had a walker in my trunk, but we had to wait until we got the brace before we’d be able to try it out.

After all those tears, you’d think it would be time to come home and take a nap. Maybe watch a movie. But first on Rebeka’s list of things to do was to take a spin in the go-kart Benji got for Christmas.


Turns out I have no pictures of Rebeka on the kart, only video!

It’s a nifty little thing with gas and brake on the small steering wheel so she can drive it all by herself. That go-kart means freedom to Rebeka now, just as surely as those crocs and walker mean mobility in the future. She was my pace car when I went for a three mile run, driving it up and down our street while I ran beside her. She made a few accommodations for the sore heel, putting both legs on the left side of the wheel so she could keep her foot propped up, and she was off, with a promise that she wouldn’t “drift” or spin out this time. Surely this girl, who hurls herself into a 180 and then shrieks with laughter, wouldn’t take long to be brave enough to set that heel on the ground and get going.

Thursday (yesterday) she was fitted with her new purple butterfly brace, made just for her. As we waited in the waiting room, she noticed that the left toe was dropping. She was very concerned, and all of a sudden this girl who treated her foot like a china doll was pulling at her toe, and pushing the bottom of her foot down to make that toe be straight. Aha. So it didn’t hurt all that bad, and she still has that stubborn, strong drive to walk. The drive that hurtled her to America in the first place. I love her spirit.

Fitting for the brace hurt, a little. A few tears, and then this look came over her face of, “Wait a second, that didn’t really hurt too much.” We stocked up on a large supply of knee socks and got a new pair of shoes (the first pair didn’t fit). Her new ones are adorned with some very cool “jibbets.” Rebeka likes the iridescent mermaid best, my personal favorie is the 3D flower.


She is supposed to wear her brace all the time at first, except when bathing, to make sure that her foot maintains its good position. Surprise, joy, love. All those things swelled up in me when I saw Rebeka do this:


And then there will be shoes. Maybe even a pair of cowboy boots before she goes home. It’s shaping up to be a very happy new year.

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