Our game didn’t last long since the rules kept changing in his favor. I played along through, because, well, his smile!

New eager green leaves changed the shape of shadows in the backyard.

We stayed home for most of spring break. Explored locally which always has new places to discover. We had a picnic where Ian insisted on noodles instead of a sandwich. This boy and noodles :)

Ian brought his astronaut along for the adventures. He lost the little camera piece on the trail back to the car. We used the photo for reference and actually found it among the weeds and rocks!

Chewie got his first haircut. We could see his eyes again! Not for long, it’s already shaggy two weeks later :)

We took advantage of clear days to bring the kite to the park. Anika got it all of the way to the end of the string, so it was only a speck in the sky. Then she learned the challenge of winding all that thread back onto the spool :)

Blossoms!

Anika and her pup. She adores this dog. And he adores her, which I adore :)

Ian needed Anika to have Pokemon to play with him. And I guess she had a secret wish for her own collection for years and years. What? So we had to get her a binder and sleeves and a starter deck.

I even got a training deck for them (a big deal because we are broke-broke). It helped for a day. Until Anika realized that the rules were still skewed a bit towards Ian and he called her a ‘cheater’ if she started winning the match. I need to sit and really figure out all the layers of the game. Until then, they’re back to collecting for the sake of collecting, which is fun too.

I played with free-lensing while they played Pokemon. I like this new way of documenting our world!

I hope that spring found new beginnings for you, too!

This post is part of our monthly gathering of photographers sharing images of family life. Find more inspiration with Carey this month. Her ever-lovely images feature light, movement, and so much laughter and love. Click here to visit her ten images for April.

One of the many things that I love about young teens is that they have mad skills, and still love being kids. They leap into chances. Photographs were both challenging and so rewarding! I mean, look at these tricks!

They look weightless.

Yet still let their silly out.

Ian loved jumping up the walls (he’s allowed for once :)). And running leaps.

The birthday girl. Good memories for her for sure.

I adore how Anika and Ian find one another. They still wear matching tie dye shirts (unplanned). And still sit together to rest before the next round of jumping. Even after all the wrestling and squabbling, all the fussing and complaining, they find each other in the end. Sisters and brothers forever.

Jump and jump and jump and laugh and jump more.

Then sugar.

Make a wish.

The orange socks from the trampoline park. Matching looks good.

I love how this party let them be active and wild and silly. What a great way to welcome thirteen!

Ian researched a space report. He chose Mars as his topic. We visited the library. Checked out a few books. Modern research means that I also browsed Pinterest and shared possible ideas. We watched YouTube videos with simulations of how we send robots to Mars. He had a tangle of ideas mashed together from various movies. I constantly want to blur the line between reality and possibility. I also want him to think critically. I want him to decide thoughtfully. Deeper than the fantastical stories about Mars were big questions about, “Are we alone?” and “Why do we explore space anyway?”

I love how children get us thinking about old questions that we buried beneath a slew of other questions (usually about paying bills or deadlines or what’s for dinner?). I didn’t have answers for him. And he didn’t mind one bit. The exploring, the journey, was the end in itself.

As to Ian’s learning process, he enjoyed the ideas. He wrote facts on index cards. Why are the planets named after gods anyway? Who decided that? Which sent me on another internet quest where we had to filter through the sites with STRANGE BEASTS FOUND ON MARS (actually an interesting video showing rock formations and how shadows could look like animals).

We decided to get Legos to represent how people learn about Mars. He was quite amazed that we didn’t send people to Mars. So we’d create a station to demonstrate that people launched robots to Mars. Then it takes a robot 8 months to arrive at Mars. And the people had to figure out how to control that robot from an entirely different planet (Earth). We were both quite amazed at the ingenuity involved in space exploration. We found a Lego City set that almost fit our idea. This set implied astronauts, so we’d turn that into a question for his audience. Do astronauts visit Mars? Not yet.

We found cool Space Sand which led to many experiments before the presentation. The sand is super-super dry so it repels water. When you lift it out of water, it’s still dry.

Then I said, “Don’t you want to paint something? Have a background? A box?” I even saved a box. No, no, no, it’s fine, Mom. Don’t worry, Mom.

Until the night before. After a few friends had presented their reports. When, all in a rush, he decided he needed a very-cool craft after all. And how could I not have all the necessary things available and ready so he could create this very important vision that he couldn’t even share with me without yelling?

Apparent Mom-fail moment. He was in a melt down. I was in a melt down. The cards weren’t finished. And he wouldn’t even talk about his presentation. Sister managed to help without triggering greater emotional turmoil and at least the cards were done.

Around 9:00 at night after he had plenty of time to calm down, he asked, “So what am I doing tomorrow?”

Oh, the challenges of being seven.

We talked through the presentation ideas. I’d be in class in the morning. We’d have water for the sand. He could read the cards, talk about how the sand was so dry on Mars, then demonstrate the cool trick of lifting the sand out of the water dry.

And that is exactly how everything happened. He presented the little figures. Showed how the robot would go
all the way to Mars while people stayed on Earth. Talked about research. And showed off the sand.
All according to plan. And it was just fine after all.

It turned out that reports all went home that day. So his project wouldn’t have been on display anyway. Chaos and happenstance working out in the end. Here’s to explorers, learning, and getting through the rough patches on the way.

I did step into the hall to photograph reports that other students presented. Creative learning all around!

*Please note that this post does contain affiliate links. Should you choose to purchase, a small amount returns to me while your price remains the same. Yay! Thank you for supporting my family.

Easter baskets this year featured a little Star Wars and a little Pokemon. The little beanie dog props up Anika’s iTouch, which she finds utterly charming. Ian’s favorite animal is a bobcat. And his favorite color is orange. Win-win!

The big bunny was brought to me by the Easter Bunny in the weeks before Anika was born. This bunny was a reminder that my baby was coming soon. That baby sure has grown. The stuffy reminds me of all those dreams. Most of which have come true :)

Tiger is not allowed on the table. Seriously. But he sat here so perfect in line with the baskets. I had to snap a photo before chasing him off.

Ian’s big wish for his Easter basket was a ring pop and Pokemon cards and the bobcat. The ring pop was opened first. Nothing like sugary cherry for breakfast.

Then, the Pokemon cards. Where he found an EX card. Apparently very rare and very fancy.

The Easter Bunny leaves a circle of dirt inside the door. Apparently this is how he travels from home to home. This year, Chewie found the dirt before the kids. He had to investigate for himself. Good thing he didn’t fall down the rabbit hole.

I took photos of the eggs for the kids (since eggs don’t last). Tiger had to investigate the eggs for himself.

And the orchid bloomed overnight! Magic indeed.

Anika adores the little ramekin egg brunch at Grandma’s house. My mom sets up a bunch of goodies that we get to choose. She adds beaten eggs and bakes in the oven. Anika has officially decided this is Easter brunch tradition. She’s been looking forward to it for ages!

My funny bunnies.

Tickle fights!

Easter table and Grandma’s fridge whose she keeps a collection of family photos.

Bunny ears for Grandma.

And bunnies hiding.

This year we hosted the first Beer Hunt before the egg hunt. The kids got to be the hiders, which they loved!

Then the main event. Looking for eggs.

Since we worked up such an appetite (haha), we had to come inside for more food. Home-baked scones with strawberries and whipped cream. Delicious!

We hope everyone had a great holiday if you celebrate!

Happy Easter. Happy spring!

When I am asked if a glass is half empty or half full, I say, “At least we have water.” I see positives in most situations. Each setback can be a redirection. Frustration can lead to inspiration. Life is neither good or bad.

Most people like uplifting disability stories. They want hope. Positivity in the face of overwhelming odds.

And I support all that.

I feel the pressure to be happy, to wear a brave face and smile despite circumstances. After all , isn’t it best to be happy? And our thoughts define our world, so I should think happy thoughts. I get that.

I also support discussing the very real challenges that come with disabilities. I want to give our stories the dimension that we are warriors in many ways.

Health can be the beginning of our stressors. Movies and popular culture may focus on overcoming physical limitations, running marathons or climbing mountains. However, our challenges may be much more mundane. People may believe that most of our energy goes into doctor appointments, wellness, nutrition, self-care. Sprinkle in doctor appointments, braces, surgery, and recovery. Then a little fundraising, awareness, fighting towards a cure… Basically, life centered around care.

However, my life has so many more dimensions. Many days, my health becomes a distant priority after caring for children, chores, running my photography business.

Chronic health challenges cause fallout in all areas of life. Relationships, friendships, finances.

Financial fallout is enormous. We just finished taxes. My husband is anxious because we made “less money than ever.” I went from full time teaching to part time, to teaching enrichment classes, to no teaching at all. I’ve lost work every year for the past three years. I had to ‘retire’ ten years ago. I’m trying to build another business, but running a business is also hard work.

People may think that disability benefits solve financial hardships. I am so very grateful for my disability benefits. However, they are nowhere near what I could earn with full time salary. They help. But they’re a small portion of what I earned prior to my health challenges.

Meanwhile, the guilt overwhelms me. I feel responsible for this difficulty. If I could work, if I could reach my potential, if I didn’t have these crazy limitations… If only.

I know these thoughts are useless. We can all cast blame for our circumstances outside ourselves.

With disabilities, though, it’s frustrating to know that I went to school. I planned a career. I worked hard. I didn’t plan to be sick for my entire life. I wanted meaningful occupation.

Well intentioned friends suggest that I get a “regular part time job.” I have a Master’s degree and teaching credential. I should be able to find a job, right? One that works around a school schedule since I’m the primary childcare provider, that can accommodate flares, that doesn’t create the “burn and crash” cycle where I accomplish tasks, yet recover for days afterwards… Not as easy as it sounds.

I start feeling like an anchor that drags down my family right alongside me. It’s hard not to think, if only I were healthy…

And I see how being unable to work impacts my family. I have to tell my kids that we don’t need to go to the movies. We don’t need new clothes. After all, t-shirts make wonderful pajamas. I don’t plan trips or adventures. I cook small portions of fish or meat for the kids and say I feel like cereal for dinner. I slowly suffocate under the weight of never spending money…

Pretty grim, actually. Fighting the undercurrents today, fighting to stay up in the sunshine where everything can turn around so quickly, where I can build a community that values my art and supports my creativity.

The limitations are not limited to health issues.

The world shrinks. The guilt compounds. And then the future looks dark.

At least we have water.

Always I come back to appreciation for important things. We are here. We have a safe, beautiful home (even if it’s messy). We have supportive family and friends. We have so much.

And the fears and anxiety are real. The guilt is real. The limits are real. The stress. Very real.

But sinking into the darkness won’t help.

I need to build. Believe. Hope. Yes, limits are frustrating. The guilt is huge. I also get to show my kids that stuff isn’t what matters. Being together matters. Time matters.

We get to share this story. With all the challenges. And I won’t fuss about that at all. That bring infinite gratitude.

We have plenty of water after all.

Though I want to share the message with the world- having a disability is more than healthcare and accommodations. It impacts our lives in so many ways. Quality of life can be improved when we care for the whole experience of living well with a disability. I don’t have answers. I do believe in discussing ideas. Change is possible.

*my experiences and chronic illness and CMT (Charcot Marie Tooth) are mine and mine alone. They are not meant to represent everyone’s path. Wishing everyone wellness and prosperity!

Where I pick up Ian from school and he chooses an after school snack. A banana which he cuts with a child-safe kitchen knife (it’s plastic). Gives him a sense of importance without the risk. And his favorite noodles. While watching Youtube. Oh, and I did treat him to a Mango Tango juice (another favorite).

We had a nice little glimpse of spring.

I sat outside with the puppy so he could run off a little of his (seemingly) endless energy. Anika arrived home with carpool and rushed straight for her daily dose of puppy love.

He loves when the wind ruffles his ears.

He started a conversation (barking) with the neighbor dog. Which reminded Anika of her tree fort (which is really a hedge fort). She had to climb up to see if the view had changed since last summer. It hadn’t changed much.

These have been her favorite boots all winter. Nothing like clambering in hedges in fuzzy boots.

She went inside for her snack and Ian came outside to play. That gap in the hedges leads to the fort, in case you’re curious. Ian threw the ball for the puppy. Then tried scootering over the new growing grass. He couldn’t go very fast, which he thought was hilarious.

Tiger watched intently.

Ian practiced basketball a bit, then needed his dose of puppy love.

He’s been assigned his first chapter book at school so he cuddles with the penguin he’s borrowing from a friend (Praig, which is a combination of Pengy and Craig for some reason). He’s proud of his independence. So am I :)

And so passes another leap year.

I’ve also been trying to capture more video. Since even a Monday Leap Year is extra-special, here’s a little lifestyle video to document the day. I wonder how different it will look in four years!

Leap Year from Lenka Vodicka on Vimeo.

Thanks for visiting my 10 on 10! Click over to Lisa R. Howeler at Gladwynn for the next adventure!

Ever swim in a river and feel the current building strength all around you? Find yourself swimming twice as hard to go half the distance? Ever wonder if you should fight harder, or just drift awhile?

That’s what I call pushback.

I feel the currents when I test my limits. Pushback is the complex conversation that I have with my chronic illness.

My limits change daily. I don’t always know when I’m going too far. I’m getting better at noticing the little signs that mean I need to Pay Attention. Pronto.

I’ve talked before about a Flare. A flare is a full-blown deluge of symptoms, a flood of challenges that can crush me. The pushback is a lot more subtle. And, if I can pay attention, I can respond and (hopefully avoid) a flare.

Sometimes I’ve pushed on purpose. Working or playing too much. I know what’s coming. Other times, the pushback sneaks up on me. Maybe triggered by a trip to the grocery store, getting sick, fighting allergies. No matter what, I’ve learned a few strategies for responding. First, what are the signs?

Waking up tired. If I wake up more tired than the night before, and I’m dragging before the day begins, whoa… It means that I’ve used more energy than I had in reserves. It’s like healing takes a lot of energy, and sleep isn’t enough. Which is odd, considering the next sign.

Yet I can’t sleep. Which is so frustrating and weird because I crave sleep all day. Then, when I finally get the chance, I’m either wakeful, or I wake up a lot (every couple of hours) or wake up way early and cannot go back to sleep. Then I feel more tired all day.  It’s a messed up cycle. I’ve learned that not being able to sleep means that I need it all the more. Grrr…

Trips, Falls, Extra Clumsy. I wish I could say this was the cute-clumsy like is shown in movies, where the heroine conveniently trips into the hero’s arms or other nonsense. No, this is tripping over nothing. I misjudge corners so I clip the wall with my shoulder. Clunk my knee into a coffee table. Yesterday I kneeled to take a photo of the puppy. When I tried standing, I just wobbled and lost my balance, sitting on the pine needles. No harm done, usually. But the trips and falls can be disaster. I need to pay attention.

Dropping Things. More clumsy moments that are usually more embarrassing than anything else. The biggest annoyance is that they make a mess, which makes me even more tired trying to clean up after my accidents. Yesterday I dropped coffee-beans all over the kitchen counter and floor. Sheesh.

Speak of making more work for myself just when I need to rest the most, I also Lose Things. Where did I put those keys? Or that permission slip for my son’s field trip? Losing things is a sign that I am distracted. My mind becomes unsettled, stirred up by all the work going on in the background trying to heal and recover. It’s not that I lose things on purpose. More that my memory is having trouble focusing.

Forgetting things. Oh, that field trip is tomorrow? I keep lists and a calendar. The forgetting often has to do with little details. Again, as though life has stirred up the details. I forget due dates for my kids’ projects. Usually, not a big deal. But family and friends (and teachers) who can be understanding are so important to me.

My mind gets foggy. I lose my edge. I can have trouble making decisions. I know this is pushback because decisions get trickier as the day goes on (and I get more tired). Though the fog isn’t an active tiredness that can be cured with a nap or early bedtime. No, this is that background tiredness that is my body trying to heal while also trying to get everything done. I’ve learned not to go grocery shopping (or any shopping) while the currents are strong. I can be reduced to a paralyzed dismay trying to choose between one sale item and another.

Losing perspective/easily overwhelmed. I am very good at finding the positive in most situations. But I have moments where I cannot see my way forward. I feel out of control. Darkness covers the sky. So I look at the trigger. If the trigger is trying to choose a sale item, I’m in trouble. Or if it’s losing a permission slip, I’m in trouble. I recognize this deep water now (but that doesn’t make it feel easier).

Malaise/lassitude. Fancy words for bad moods :). It’s like tired with a little “doom and gloom” in the spirit of, “this only gets worse” and “don’t plan anything ever again.” The malaise makes fun ideas sound like massive chores. And I just want to crawl into somewhere quiet and dark and endless. Even knowing the mood will pass doesn’t always make it go away faster.

The good news is that recognizing the signs can be enough to turn the river in a better direction. If I ignore the pushback, if I push even harder against these reminders, then I get a flare or worse. The pushback is my first sign of rapids ahead. And, if I can surrender to the current, if I can slow down, lean into the CMT fatigue, then I can make a difference. If I really rest, probably days of rest, the currents often bring me back to shore.

I do have more interventions. For another post. Things I use to help restore balance to the force (heehee). Balance to my life. After weighting the difficulties, I like to find solutions. Perhaps we all have ideas.

I can’t control the currents. I just need to take my deep breaths. Relax. I can get very frustrated. And, actually, my greatest danger comes after I’m recovering physically. It’s like I throw myself into healing, and, once I’m not channeling all the energy towards getting well, it create a vacuum. A vacuum that fills with bleak waters. And that is actually harder for me. Getting through the mental pushback is the bigger challenge.

That’s a post in itself. For now, I need to rest. Like it or not. The only way out is through :)

*I’m sharing my personal experiences with Charcot Marie Tooth disease, a genetic quirk that causes me issues. My stories are not meant to represent everyone’s experience with CMT or chronic illness. My hope is that we can find common ground and build community.

Can you believe that this cake is made with spun sugar? The “stones” are edible! Stunning.

You can learn more about The Studio Collective by clicking here. Artists contributing to the Open House include Tin Roof Farmhouse Roots Reclaimed Katie White Photography Melanie Soleil Photography Hair and Makeup by Angela Antonio’s Catering Art in Bloom Flowers I do’s by DebLydia Beauty Lydia Photography Bungalow Personal Style & Event Planning Bri Mcki Photography La Tavola Fine Linen. We are all invested in making every wedding and special event unique and beautiful! You can learn more about Giovanni and I being your photographers or videographers here.

It’s been awhile. Since I even sat at the keyboard. My words have been wrapped inside me. Questions become doubts. Quiet feels easier.

Yet, the questions swirl and stories persist. The words don’t go away. They get louder. And while silence seems easier, I don’t really know if the short-term easy is actually long-term easy.

Having an invisible disability (one which is not obvious) can be a great gift and challenge. It’s a gift in that people don’t see the disability at first, so hiding limitations is entirely possible. And, yet, that’s the challenge! Because I am in charge of my limits.

Why hide?

Honestly, I worry that sharing my stories will cast a shadow over my life. I worry that my opportunities, my potential clients, even my friends and family, might change ideas about me. When, in truth, my challenges impact me the most. I show up. I arrange schedules. I eat well. Give myself extra caffeine when necessary. I figure out ways to make my life work.

Society can define a person by their disability. Not talking about disability gives me freedom to be photographer, writer, crafter, mother.

Yet. Yet…

How will anything change if I hide?

How will people see that having a disability doesn’t change that I am a photographer, writer, crafter, mother? Having a disability doesn’t diminish anything. Having a disability adds a layer of challenges, sure, but don’t we all have challenges? Perhaps my challenges give me a few more limitations, a few more obstacles…

But the strategies to compensate or work around those limitations are universal. The feelings that rise up as I face ongoing challenges are universal. We all hit walls, find ourselves in storms, and we all appreciate moments of joy. We can find common ground.

So I have decided to stop letting the words swirl around inside me. I’m going to share stories again. The light and the dark. The difficulties and triumphs. The wholeness of living with disabilities.

I know I’ve come to this place before. I’ve felt strong and capable. Then I worry. What if people worry? What if people don’t want to hire me? What if they see me as always tired or broken?

Or … what if they see my strength and creativity? What if they see my unbreakable spirit? And my willingness to try and try again? What if they see the chance to support me and my family when they hire me? And what if they trust that I have the tools, skills, and ideas to make their images beautiful? What if we can meet authentically?

What if we can change the stories? Change the world?

Hiding won’t change anything. And I seriously would love to change the experience. Own our story instead of hiding our story.

Let the adventure begin. Again.