A China Plate for Butterfly

Recently, I surprised Butterfly with a mother/daughter date one beautiful Saturday morning. We headed to Lavender Fields Farm, a local organic herb garden, to take their wreath class. This particular class has turned out to be a requisite mother/daughter event for our family. I made my first wreath at LFF with my mom. About two years ago, my oldest daughter Lizard and I took the wreath class together (I blogged about that here) and now it was Butterfly's turn.

Like I desired with Butterfly's sister before her, I wanted to celebrate the completion of a devotional book we worked through together, Growing Little Women for Younger Girls, by Donna J. Miller and Christine Yount. In a sense, the event was intended to mark a graduation from little girl to young lady. Our first activity was to make living herb wreaths.

After making our wreaths, we entered the tea room where a special china place setting had already been laid at Butterfly's place setting. (The idea for this event came from the book, Gentle Passages: Guiding Your Daughter Into Womanhood, by Robin Jones Gunn). We talked about how she is like a china plate, meant to shine as she reflects God's glory through her life and her service to others. She agreed that she didn't want her life to resemble in any way my paper plate that was destined for the trash can. We discussed how a china plate is special and should be handled with care and it should be protected from harm. At this point, Butterfly exclaimed that she really understood now why her dad and I are careful in choosing what books, movies and activities she experiences.

The china set we bought for Butterfly is called Shenandoah. It has a delicate pink flower with a pale yellow background, two of Butterfly's favorite colors. Lizard and I selected it for Butterfly at a local antique shop some months ago. It turned out that many of the dishes in the set were covered with dust and grime, but I was delighted to find that their sparkle returned with the help of a sink full of soapy water and a bit of gentle elbow grease. As I was washing Butterfly's china, just a few days before our trip to LFF, I discovered that one of the dishes had a chip. I was disappointed and hoped that Butterfly, who wouldn't even know about the china until our special day, wouldn't even notice that particular dish for a long time.

Somehow, when I secretly and carefully packed up a single place setting of Butterfly's china into a picnic basket that I would later give to the staff at LFF to place at our table, I unknowingly packed that chipped plate. I was chagrined to have to acknowledge that imperfection when it was debuted to Butterfly. However, God made the moment beautiful, as we were led to discuss that even with a chip, the plate was still exquisite and able to serve. We decided that really, all of us are chipped plates. We make mistakes (lots of them), we do get hurt and sometimes we are even damaged, but if we ask Jesus to wash away our sins and allow Him to heal our hurts, we can again shine brightly for Him.

In many ways, Butterfly's china plate event mirrored her sister's event, but not in every way. Besides the chipped plate, there was one other surprise that set Butterfly's day apart. She was given a custom art print, made by a talented Christian artist who has a shop on Etsy called Willow of Wonder. The girl in the image is based on Butterfly. I suggested she wear the same dress the day of our event, because she was wearing that dress in the photo I sent to inspire J-- at Willow of Wonder. When Steady Man and I were working with J-- to select a scripture or song lyric for Butterfly's print, we decided to look at some of Chris Tomlin's lyrics, as he is one of Butterfly's favorite singers. Butterfly's pose, with arms lifted high, led us to choose "I lift my hands to believe again. You are my refuge, You are strength. As I pour out my heart, these things I remember. You are faithful God, forever!" We also felt this lyric reflected Butterfly's joyful personality well. I couldn't have been more pleased when Butterfly first laid eyes on her art print. She was ecstatic. She loved it. She realized it really was her and she was in disbelief that something so beautiful was made just for her. When she read the lyrics, she exclaimed, "That's my favorite song!" Well, we didn't realize that when we chose it and I told her so. Then she reminded me how she had once made up hand movements to that very song and then I remembered, and I silently thanked God for leading us to choose that song lyric.

On the back of Butterfly's plate, I wrote her a message and gave her a scripture. For this particular occasion, the NLT version reads best:

'In a wealthy home some utensils are made of gold and silver, and some are made of wood and clay. The expensive utensils are used for special occasions, and the cheap ones are for everyday use. If you keep yourself pure, you will be a special utensil for honorable use. Your life will be clean, and you will be ready for the Master to use you for every good work." II Timothy 2:20-21

God Bless Germany!

Studying Germany was especially fun for our family, as all three of our kids have been involved in Bavarian schuhplattler for several years. Schuhplattler translates as shoe slapping. We got involved, not because we are certain we have German ancestry, although we might, but because I was looking for a physical fitness opportunity for Lizard.

Butterfly in her dirndl for a schuhplattler performance during Oktoberfest.

Historian, especially, loves all things German. Perhaps part of the reason is that one of his best pals in Pittsburgh has a German-born mother. He is interested in the culture, the language, the history and the food. We felt this was his best "feast" yet, not just because it was absolutely delicious, but also because he showed more confidence than ever in the kitchen.

Historian showed excellent knife skills in preparing the pork to become schnitzel.

The table was decorated with the colors of the German flag, a doll in a dirndl, an Oktoberfest stein, a puzzle and game from Germany as well as German-made Schleich figures.

Historian and his perfectly cooked pork shnitzel and spaetzel (homemade German noodles).

The applesauce represents the more than 130 quarts made and canned by my friend K and me in October. I was taught how to make bulk applesauce by my German-born friend Vera.

Historian also prepared a scrumptious Black Forest cake that had us all raving.

After dinner, we played Labyrinth Der Meister, a German-language game given to us by our German-born friend Heidi.

Fortunately, we never completely left Germany. Because of schuhplattler, Historian's status as a Germanophile and our love for the German friends God has put in our lives, Germany will always be close to our hearts.

Next stop, Kenya!

God Bless Brazil and Norway!

To conclude our trip to Brazil, Historian cooked the country's national dish , feijoada, for us. It consists of black beans and three kinds of meat. Four of the five of us loved it (one of us never likes anything with beans). Unfortunately, I didn't take any photos of that meal. I did, however, capture the kids making an anaconda out of coat hangers, an old bed sheet, twine, paint, googly eyes and red felt. The anaconda can be found in the Amazon Rain Forest of Brazil.

Our anaconda has been found slithering in bushes, climbing in trees, hiding in MY bed sheets, lurking on porch steps and hovering over sleeping teenagers. Who knows where he will turn up next?

Today, we finished up our trip to Norway.

For lunch, Historian made smoked sausage and Norwegian pancakes (pannekaken) which are similar to crepes, served with butter, strawberries and powdered sugar. This meal was a huge hit. The brightly colored table decorations, made by the girls, were inspired by the traditional blue, yellow and red clothing (called "gakti") worn by the Lapps (Sami) people of northern parts of Norway, Sweden, Finland and Russia.

The kids added the Norwegian flag to the table as well as a "dragon," because the kids say Norway is famous for its dragon legends.  In the back, you might spy a rosemaled box.

Rosemaling is a traditional art of Norway. I thought that the word "rosemaling" had something to do with the rose flower, but it translates as "decorative painting." That explains why the flowers used in rosemaling aren't very good representations of roses. You can see another rosemaled box here.

For dinner, Historian made lefse, a Norwegian cross between potato bread and potato pancakes. All three kids liked these and Historian was requested to make them on a monthly basis.

After boiling the potatoes, Historian riced the potatoes. I think he enjoyed this.

We loved the spaghettified look of riced potatoes.

Tomorrow, we head to France! Au revoir!

Seven Tips for Interacting with Special Needs Kids (and Their Families)

Being the parents of a child with special needs has been one of the greatest privileges of our lives. Our special needs girl (who has spina bifida) is full of spunk and joy. We know God has created her with a purpose and it's been fun to see her already being used to minister to the people she encounters.

It's also given us a lot of stories, mostly considered humorous by us, related to how people have responded to Butterfly who, unlike some special needs kids, can't often hide her disability, whether it's because she is using a walker, canes or a wheelchair, or crawling on all fours. In sharing some of these moments, I thought it might be fun to frame these stories as a guide for people who'd like some insight on how to interact with a person who is differently abled (or their parents).

If you are going to offer medical advice, do know what you are talking about or soften your "advice" by asking questions to see if you are on the right track.
I was once sent a long e-mail by a well-meaning friend who was eager to inform still-pregnant-with-Butterfly me that all that I needed to do to "fix" Butterfly was to take her to a good chiropractor after she was born. I don't think this person had any idea at all about what spina bifida is. Another acquaintance, also by e-mail, promised that Butterfly's life would be turned around, if I would only purchase the high-priced magic juice she was selling. Even better I could become a distributor under her. I probably don't need to explain how we felt about this.

Pray with understanding.
Prayer is always good and please pray for us, but please don't make our child feel like she is sick, because, praise God, she isn't. Once when Butterfly was a toddler, we were stopped in a McDonalds by a concerned family asking if they could pray for Butterfly. We agreed and they prayed sincerely that God would "heal her" and we were grateful, yet it felt odd because we know Butterfly isn't sick. Now that she is older, people have offered to pray for her healing or pray for her to "get better" and privately she says to us, mildly irritated, "What were they talking about? I'm not sick." I just want to be careful with my girl's heart and her trust in God. What if He chooses not to heal her in this life; chooses to be glorified in her life as she lives abundantly for him WITH spina bifida? Privately, I have prayed thousands of times for her to be restored, to be "healed." I know that hundreds of God's children have prayed the same. At the same time, our faith will not be shaken by God's answer. A good rule of thumb here is to just ask the person or parents, "Is there any way I can pray for you and your family?"

No pity needed or wanted.
We have been overwhelmed by the kindness of people: babysitting, hand-me-down clothes, meals after hospital stays and on and on. So many people have sensed our need or just wished to minister to us and we have been truly blessed. I've even had a few friends cry with me over our sorrows. All of that is compassion. But please don't pity us. Please don't look at my child with sad eyes, shake your head and say for all to hear, including her, "Poor baby." You must not know her. She loves life, makes friends wherever she goes and has even recently said "It's more fun not being able to walk." Perhaps she's right. How can we, who haven't lived her life, argue? Once a man stopped the kids and me in the library and regaled me with how sorry he was for Butterfly and insisted that I take $3 to buy my kids ice cream cones. He intentions were very sweet, but I was glad Butterfly was too young to realize that she'd just been given a hand-out, out of pity.

Don't limit them.
We love to hear about adults with spina bifida who have achieved great things. But please don't tell us stories about how you know someone with spina bifida who was able to live in a group home or get a job as a Walmart greeter, as if we are to take comfort in that. Granted, there is nothing wrong with living in a group home or working at Walmart in any capacity, but to suggest that our daughter doesn't have the full gamut of choices for where she lives and the kind of work she will do really does hurt.

Ask questions.
We love most questions. Questions like, "Do you mind my asking why you (your daughter) uses a wheelchair?" are awesome. However, "What's wrong with you (her)?" not so much. We get that one a lot. And for the record, nothing is wrong with her. She is the way God created her. We've heard of a few plucky kids with SB who have answered that one themselves with, "Nothing's wrong with me, what's wrong with you?" I kind of love that, but I'm still glad Butterfly hasn't responded to anyone that way... yet.

Speak, don't stare.
We love meeting new people, so if you or your kids have questions, just talk to us. Butterfly can't stand to be stared at, but lots of people, kids especially, stare at her... for a LONG time. We are encouraging Butterfly to flash big friendly smiles at kids who stare at her and, when it is appropriate, to go up to them and break the ice. She's had some awesome experiences doing just that; even so, sometimes she just wishes the staring would stop. If you notice your child staring, perhaps you could bring him or her over to meet Butterfly. We realize they're just curious and they'll probably really like Butterfly, and maybe us too. Most kids do.

After reflecting on this particular tip, I want to add that a far worse fate for Butterfly would be to have people vigorously working to AVOID looking at her. I think that sometimes happens as special needs kids become special needs adults. It is ALWAYS lovely to meet someone's eyes (any one's eyes, regardless of their abilities) and smile, perhaps say hello, even if they can't or won't respond in kind, and then go on about your business.

Don't sweat it.
Most importantly, just be yourselves. Few of the stories I've shared have caused us any more than a moment of discomfort.  Ultimately, if worrying about doing or saying the right (or wrong) thing will keep you from getting to know us and deprive us of getting to know you, don't sweat it. Just jump in there and say and do what comes naturally. We think we'll like you too! We usually do!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

I want to do it AGAIN! (overcoming at Great Wolf Lodge)

I love water parks, always have. I remember when they were building the first true water park in Cincinnati. I was 15 and, through a family connection, I got a job selling season passes for the not-yet-opened The Beach water park. In the middle of a typically cold Midwest winter, as Christmas shoppers bustled about in the mall, I and my coworkers wore shorts and t-shirts while tossing around beach balls to draw shoppers to consider choosing water park season passes as Christmas presents.

I admit that those really, really tall slides that boast what seem to be nearly vertical drops never have even been tried by me. I prefer my water park thrills to have twists and turns and bounces and bumps, rather than hurtling my body toward frighteningly small pools of water.

So it was with high hopes that we registered for homeschool days at Great Wolf Lodge, an indoor water park in Williamsburg, VA, the first week of December 2010. Our oldest enjoyed every feature of the park. Our middle daughter was pleased to run around with her friends with some level of freedom, but was reticent to try anything more than the medium slides. The youngest at seven, Butterfly, wore her leg braces and bear crawled her way around the park, making a circuit from the wave pool to the baby pool with baby slides to the hot tub and back, under the vigilant watch of one or both parents.

While we considered that first visit to Great Wolf Lodge a success, it amounted to a droplet of fun compared to the great splashes of delight that were in store for us this December! We arrived on Wednesday and were exceptionally pleased with our suite with living room, kitchenette, two separate bedrooms and two full baths. We wasted no time getting ready for the water park.

Immediately, Lizard, at 11, and with a heightened spirit of adventure, began testing her new-found bravery, joining her older brother on the biggest slides. And she loved them!

In turn, Butterfly, now eight, decided she was ready to try the medium slides. These can be found at nearly every water park. They extend from a large playground-like structure, featuring sprayers and buckets of water to dump on unsuspecting passers-by at every bend in the zig-zagging steps.

Feeling protective, Steady Man and I both escorted Butterfly through the maze of steps and rope bridges to the beginning of the first slide. I explained to the lifeguard on duty that while Butterfly can't walk (perhaps obvious to him by the way she had ascended the structure on all fours), she can sit up well. The young man considered for a moment and said, "Put her on!" For a flash, I was annoyed that this youngster, with so little life experience, was so ready to see my daughter go flying down that deadly slide, forgetting that we were the ones pleading with him for her to be allowed that very pleasure.

Having checked myself, I listened as the young man proposed a plan: I was to go down first, in order to be there to catch Butterfly at the end of the slide. Steady Man would go last, so that he could assist her onto the slide. Great! Here I go! Whoa! This is fast! This is twisty! I suddenly had visions of Butterfly being slammed this way and that, unable to hold herself up while water splashed in her face making her feel as if she would drown. Wait! Stop! Don't send her! My mind screamed. If only I had a cell phone, I could call Steady Man and tell him it's too dangerous, but cell phones and bathing suits on water slides just don't mix. My only recourse was prayer. I leaped off the slide and began praying for Butterfly's safety. Praying that she would be able to hold herself up. Praying that she would have fun.

It seemed like an eternity before I finally saw her coming around the last bend in the slide. Was that astonished look on her face from fear or was she merely anticipating hitting the small splash pool at the end of the slide? I couldn't tell. Then wham, she exploded into the pool of water in front of me. I scooped her up in my arms, looked into her eyes and asked what I was desperate to know, "Did you like it?" Her elated reply: "I LOVED it! It was so much fun! I want to do it AGAIN!" My heart cried, "Thank you Jesus!"

We lost count how many times Butterfly went down the two medium slides, lovingly referred to as "the green one" and "the orange one" that first day at the park. Steady Man and I also took turns going down "the big slides" with Historian and Lizard.

The next day, our only full day at Great Wolf Lodge, Butterfly decided she wanted to try the three big slides for which she met the height requirement. These are the kind of slides that require you to ascend stairs to the roof of the building in order to ride them. The first task was to find a way that Butterfly could sit on the tandem inner tube with Steady Man. Compared to Butterfly's tiny frame, that hole was enormous. That coupled with Butterfly's diminished ability, due to low muscle tone, to keep her frame from folding in half, made Butterfly at risk for disappearing through the hole in the inner tube.

The solution was for Butterfly to sit not so much in "the hole" of the inner tube, but rather on the tube portion that was between the front rider's seat and the back rider's seat. Sitting there, with Steady Man's legs supporting her seemed to work, although I couldn't help feeling the whole plan was a bit reckless. At the same time, we have never wanted to tell Butterfly that she can't do things because she has spina bifida. If she wanted to do it, we were ready to take the responsibility for any mishap.

Steady Man climbed the stairs to talk with the lifeguard-on-duty. He was referred to the lifeguard supervisor and, after discussing Butterfly's situation, she approved Butterfly to ride all slides for which she was tall enough. The only caveat, of course, was that we had to get her to the top of all those steps.

I can take credit for carrying Butterfly up all those steps perhaps three times. A couple of guy friends also took turns carrying her up those numerous flights. And Butterfly climbed many many stairs on all fours on her own. But Steady Man... what a dad! Between the medium and tall slides, he must have carried his sweet 45-pound angel up more than 100 flights of stairs. He was hurting, but he wouldn't let it stop his daughter from fully participating in the pleasures of the day. I was in awe of him.

And she loved those slides too! We all did!

These joys, combined with spending important time with special friends, made this trip to Great Wolf Lodge, a highlight of 2011 for the Smith Family.

I can do all things through Him who gives me strength. Philippians 4:13

Foaming Monsters

The girls and I are enjoying using Usborne's 100 Science Experiments as one of our science texts. Last week they made "foaming monsters."

First, they took construction paper, googly eyes (love those!) and plastic soda bottles (yes, we recycle!) to make their monsters.

After giving each monster a large drink of vinegar (to fill the bottle about halfway) and a generous squirt of dishwashing liquid, each girl added several drops of food coloring, because colored foam is even better than white!

Swirling the monster to mix the food coloring into the vinegar.

Next, we wrapped large pinches of baking soda in two squares of tissue and stuffed one into each monster's mouth.

Can you see the foam beginning
to form?

Foamtastic! This wasn't an explosion as we guessed, but a slow build. It seems the combination didn't sit too well in our monsters' tummies.

What's going on?

When you mix vinegar and baking soda, it makes carbon dioxide. The bubbles in the carbon dioxide cause the dishwashing liquid to foam so much that the solution spills out of the monster's mouth.

Butterfly the Equestrienne

When you have a child who struggles to accomplish (or who will never accomplish) the things for which all good parents await and celebrate: first words, first solid food, first steps, potty training, learning to read, learning to tie her shoes, learning to share and so on, there is an understandable heartache that you carry. However, there is also a special indescribable JOY, a thankful elation, when you witness that child doing above and beyond what you hoped or dreamed they could accomplish. That joy revisited us this past weekend in Lexington, Virginia, as we watched our daughter, Butterfly, who has spina bifida, compete in the Therapeutic Horseback Riding Association of Virginia event.

Butterfly's equestrian gear included paddock boots, jodhpurs, garter straps, show shirt, show collar with pin, show coat, hair net, and riding helmet with faux-velvet cover.

Butterfly's riding center did everything possible to make their riders feel celebrated. Butterfly's photo hung on one of the horse stalls at the event.

 Butterfly was a great sport posing for photos in her riding regalia.

We were blessed to have many out-of-town family members join us for the event including Butterfly's cousin. I regret not getting a photo of the entire family.

More decorations outside our horses' stalls.

Butterfly has mounted Rebel and is ready for her first competition.

Notice that Rebel has his mane braided. His tail is braided too.

Butterfly waits to begin the equitation round.

 We reminded Butterfly to keep focused and not get distracted by her cheering section. An equestrian should always look in the direction she wants her horse to go. In this case Butterfly is asking Rebel to track left (and she is completely ignoring her cheering section). What focus!

Butterfly received a blue ribbon (first place) for equitation. I wish you could have experienced the bubbling-up, tears-spilling-over joy we felt as we watched Butterfly ride. The ribbon was just icing on the cake for incredibly thankful and proud parents.

Butterfly and Rebel after their blue ribbon event. Rebel did a wonderful job too!

Butterfly also competed in pole bending, trails and dressage. 

She received red ribbons (second place) for pole bending and dressage and a yellow (third place) for trail.

Butterfly's total points earned her the title of "Reserve Champion" (second place overall) in her class. Check out that giant ribbon!

Butterfly made a new friend, T, who also competed for Galloping Acres. T received Champion (first place overall) in her and Butterfly's class. Way to go!

On the left are some of the riders and helpers from Galloping Acres. On the right is Shannon Lawson, director of the therapeutic riding program at Galloping Acres. We are so thankful to have them in our lives!

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40: 28-31