World Clubfoot Day

Another World Clubfoot Day is upon us and it’s time to celebrate not only my favorite Clubfoot kiddo- Sporty but also all of the friends we’ve made along the way! It’s also, Sporty’s favorite time to request a video produced by moi! We had trouble finding the perfect inspirational song that we have in the past but I finally settled on “Rise Up” by Audra Day because day after day, bump after bump, set back after set back, Sporty continues to “rise up” and to quote the song, I know she’ll continue to do it “a thousand times again.”

Since last World Clubfoot Day, we have relocated to the very warm Phoenix area. We’ve been here 11 months and it’s starting to feel like home (and like home is on the surface of the sun). We had one trip back to Dr Fluffy Unicorn in December and have another scheduled for mid-July. At our December appointment Sporty still showed some pretty significant tightness (she has grow almost 6 inches since January!) so he prescribed some custom AFOs which she’s been in for almost 6 months. Mom here isn’t entirely happy with her left foot but we’ll see what July brings.

Sporty of course continues to play softball (negligent blogging mom here missed the entire winter/spring tournament season) and is on a team that she absolutely loves. She’s been catching most of the innings and loves being back behind the plate. She continues to take hitting lessons and we’ve seen her bat wake up and she’s starting to get some hits, she’s been batting first or second in the order and her confidence is growing by the day.

Finally, we’ve started to give back to the Clubfoot community by volunteering for Clubfoot CARES, packing welcome envelopes for new and expecting families that are going to welcome Clubfoot into their lives. We’ve been really blessed with great treatment and a positive outcome and I felt it was important for Sporty to learn to give back. She packs each package and wonders if the family is having a boy or girl and if they will have one Clubfoot or two like she had. It’s really cute and inspiring how she’s embraced it.

Most importantly today is about education. My biggest fear when Sporty was diagnosed with her clubfeet was bullying. I was so afraid that her feet would look different and as she got older she’d get made fun of, cause let’s face it kids, especially girls, are mean. But I’m proud to say that Sporty fully embraces her feet and is confident enough to share and as a result can’t be bullied. She owns it like nothing we ever imagined in our wildest dreams. I expected her to keep her feet a secret at her new school but one day they were discussing what made people different and special and Sporty brought up her feet. Her classmates asked questions, she answered them and the next day she brought in her prior years’ World Clubfoot Day videos as well as casts and AFOs to share with her class. Talk about making yourself vulnerable! But her classmates embraced it and were moved by it. Many of them went home to tell their families about her feet, they googled clubfeet and learned about it and understood it. That’s what this is really about, education, acceptance, and embracing our differences no matter what they are.

So without further delay, World Clubfoot Day ala Sporty to the music of Audra Day. Keep “rising up” people!

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Giving Back

I’m super excited to write this post! A few months ago, I volunteered Sporty and I to help the Clubfoot C.A.R.E.S organization and we got picked to put together packages for families that are welcoming their new Clubfoot warrior. The packages are full of all sorts of information a new Clubfoot family could ever ask for. A perfect job for Sporty and I!

I felt like it was time for Sporty to start giving back, I want to teach her (and Young Jedi) that we’re super fortunate and they’ve been exposed to the best care and resources (for each of their respective diagnoses) that we could find. We also live in a very privileged area and it was time to give back, to stop just taking but be positive contributors to society. We’ve always offered our help and guidance for new families but I wanted to do more!

When I told Sporty about our new volunteer work, she was SO excited! I thought for sure I’d get push back but for weeks she’s been asking me when we could get the packages going and we finally got all of our materials in, so today we packed our first set. I helped her for a few and then she totally took it over. She took complete ownership of it and I could tell she felt good putting these together (and if you’re a recipient reading this and you have a crooked label or wavey seal job, know that your package was packed with pure love by Sporty. She even wondered with each package if your baby was a boy or a girl, if they were bilateral like she was and what their name was going to be). Ironically, 10 years ago today (thanks Timehop) she had her first of three Clubfoot surgeries.

She even asked me to take a video of her packing (ignore me yelling at Young Jedi, he was being a turd. 🤣)

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It’s Tourney Time!

A packed car can only mean one thing! It’s tourney time. Sporty joined a new team after a rough separation from her original team. She is so happy on her new team, the girls all support each other really well, the coaches are beyond encouraging and positive and she’s in love with the sport again. They had their first tournament this weekend and we had so much fun watching the girls start to come together. It’s a new team so there were some tough games (I.e. huge losses) but they already have the chemistry so I know they will come together and be successful.

Sporty played amazing. Maybe the best I’ve ever seen her play. She knows her coaches believe in her and so she’s confident and plays to her fullest. She caught 3 of the 4 games this weekend and considering it had been nearly 6 months since she caught and that she’s never caught at the 10u level, she did amazing. I am so proud of her, mostly because her ankle hurt too but she was determined to work through it. She earned nicknames like “go-go gadget arms” and “spidey wall.” And she felt good about herself. She batted in the #2 and #3 spot and was confident in the box. It was just so amazing to see after she had been so down.

And I can’t say enough good things about her coaches. Poppa Bear even looked at me in the middle of the game after hearing Sporty’s coach encouraging comments to Sporty while catching a very long inning and said “we really hit the jackpot with this team!” As an added bonus, the parents are all super friendly and welcoming!

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Like Riding A Bike

Or at least you think it would be. You would think that after all of those years in her brace or in an AFO I would be well prepared for a new DAFO. The orthotics company ordered us fancy $30 a pair socks that she hated so I found myself the day after Sporty got her new DAFO staring at the sock aisle at Target because she wanted “thicker” socks, whatever that means! Confused like I felt 10 years ago when o was trying to find the right sock for her brace. See the right sock is the difference between blisters and discomfort and not wearing the brace and wearing the brace all night and getting progress. I came home with $70 worth of tube socks, all of which have been open and 50% have been tossed aside and deemed too thin, not tall enough, too cute to wear with a DAFO (the unicorn ones).

And then there was the adjustment period. I thought she would just adapt right to them. I thought it would be like riding a bike, especially because she’d been asking for her DAFOs for days, complaining she felt tight and needed a good stretch. But there were nights of tears. And I wanted to be weak, just like 10 years ago when she first started her brace as a baby and wailed in frustration. But just like I did a decade ago, I reminded myself this was for her own good. So I stayed tough, gave her Advil and made her wear them. And now, nearly a week later, she’s used to them. She even brought them to school to show her classmates and when her foot was tight during Benchmark testing, she put it on. Only Sporty would volunteer to wear her DAFO during the day when Dr Fluffy Unicorn said she didn’t need to.

So here we are in nighttime brace wear {again}, hoping we get more mobility so that we can avoid another surgery. Fingers crossed peeps!

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Suns Out Guns Out

Thought I’d share these videos just because the weather looks gorgeous and to remind myself when it heats up in the desert in a couple of months that next January it will be in the 70s and gorgeous. Sporty has been working hard at her hitting coach while we figure out her softball team. We finally have her on an awesome team coached by 3 women who were college softball players. They’re encouraging, nurturing and strict all at the same time. Sporty has never been happier and the coaches really seem to like Sporty and the effort she puts out at practice. I can’t wait to see what this season brings!

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On Our Way

Well it took 5 weeks but insurance finally approved a custom DAFO for Sporty. My call telling them that they could approve it or approve surgery may have had something to do with it buuuut we’re finally making progress in getting it. The orthotic place has been great about getting us in pretty quickly too so I took Sporty in last week for molding.

You know you’ve been around the block a bit when you’re 10 and you micromanage the orthotic guy molding your feet.

Hopefully we’ll have them in a couple of weeks! I’m excited to see if they help, Sporty really wants her cheetah speed back and I think a good stretch will help her in that department.

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A Decade

This post comes a few days after your 10th birthday Sporty but I promise you it’s been on my mind for weeks before you hit your double digits. I’ve actually been dreading this milestone even more than I’m dreading my big 4-0 later this week.

Sporty, I’m not sure where the time has gone. I know it sounds cliche but somehow between doctor’s appointments and softball practices and everyday life, you grew up. No longer my 4lbs of fury but a strong, resilient, smart, caring young lady. And it hit me, as fast as these 10 years have gone, I know the next 10 years are going to go even faster and that will make you 20 and that just makes me want to cry! You and your brother want to grow up so fast and I get it but stay young as long as you can! Stay young and carefree and fearless as long as you can because before I can blink, you’ll be 20 (and I’ll be 50 and well, that’s not acceptable!).

Your milestone birthday has got me thinking about those days 10 years ago following your debut. You were so small and we were so eager to start your treatment. You had a birth defect and 10 years later I can admit I was ashamed. Not of you, I could never be ashamed of you but rather that people would think I did something wrong during my pregnancy to cause your birth defect (and I hate that word because there was nothing defective about you, you just needed a little construction). I ate organic, I didn’t eat sushi or deli meat, I didn’t drink, I never smoked, I never did drugs, I took my prenatal vitamins but yet I had a baby with a birth defect. And I was ashamed, despite countless doctors telling me it was nothing I did, that short of it being genetic they weren’t sure what caused Clubfoot, I was still ashamed because I grew you, I carried you for 8 months and I didn’t do it right. I failed you. I made your life harder than it needed to be because the gene that causes feet to develop properly mutated. Despite science and facts, these feelings of failing you didn’t go away.

This is my biggest regret today. I wish I had taken more time to look at your perfectly newborn feet pre-correction. We only have a few pictures and now I find myself searching for those, reminiscing at how far you’ve come. All of the casts, surgeries, AFOs, braces that you’ve endured to live your best life ever. And that’s what you do. You have no fear, you live every moment to the fullest, you jump from rock walls, you slide into bases, you ride your bike off of curbs (despite my helicopter parenting advice not to do so). Now the shame has been replaced with pride and purpose. You and me kid, we were given Clubfoot for a reason.

So on your 10th birthday, my advice to you is…continue to live your life to its fullest, climb every mountain, round every base as fast as you can, ride your bike around the neighborhood like you’re crossing the finish line at the Tour de France (or Little 500, I don’t judge), block wild pitches at home plate like the game winning run is at 3rd base because 10 years ago we were told that you would barely be able to walk and compete in PE and here you are, proving it all wrong. Showing the world what you’ve got, showing that the human spirit is stronger than medical statistics. You’ve had bumps along the road but you continue to amaze and inspire us along the way. So happy double digits, I can’t wait to see what this year brings for you!

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Battle of the Cages

The Saturday before Christmas, Sporty’s hitting coach invited her to come and participate in his annual “Battle of the Cages.” He breaks his hitters up into two teams with judges behind the cage rating each at bat as a single, double, homerun. We figured we’d go and get some batting practice in since Sporty’s team is taking a few weeks off for the holiday and give her an opportunity to hit with some older girls.

Naturally we were late because when the 4 of us are together we can’t seem to get it together and get out of the door. All of the other girls had warmed up and as Sporty was getting ready to warm up, he stops the machine and introduces the 5 college players that were there. Then he walks over to Sporty and gives her an introduction to all of the players and parents as she is the youngest player that he has ever taken and she struggled when she started but how far she’s come. It was really awesome recognition for her. After 3 warm up swings, the competition began.

He broke the college girls into two teams and from there they picked the younger girls to make up their teams. Sporty got picked first round by an All-American that plays for Georgia. How cool is that!?! Sporty has become pen pals with a player from Indiana (my alma mater) who was also there and she was very sad not to get Sporty! (But we may be making a trip to Bloomington this spring to watch the Hoosiers play!)

The teams ended up in a tie but we had so much fun watching all of the older girls hit. Sporty was the only 10U player there. The event also collected food for a local food bank so it was fun and meaningful at the same time.

That evening I texted her coach to thank him for the day and let him know Sporty had an awesome time playing with all of the other girls and to set up a time for a lesson the next day and he responded back how well Sporty did and how proud he was of her. That she may have been the smallest and youngest but she earned the respect of all of the other girls and impressed a lot of the parents. He even told her the same thing the next day. Sporty has had a rough go here with softball so for her to hear that college girls and her hitting coach were impressed (because he’s the first to tell her when she’s hitting terrible!) meant a lot to her. She was close to quitting the sport altogether a few months ago so to see her spirits lifted and her confidence bumped up a notch was amazing.

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It’s a Process

Apparently getting a custom DAFO is going to be a bit of a process. Thursday I made the trek to a new orthotics place that I thought was in South Scottsdale but as google maps took me off the freeway and through Native American land that was all farms, I quickly did a yelp search of the place to learn that it was in chandler which was an additional 15 minutes from where we were. Oy.

We finally made it and I was impressed with the place. The guy said he’s done a lot of Clubfoot DAFOs so he felt confident getting her what she needed. He also examined her feet and had the same comments that Dr Fluffy Unicorn had. Because of glorious insurance (note the sarcasm) we require preauthorization and couldn’t mold her for the DAFOs until we got that. Buuuut Sporty got to design her braces, it’s the first time she’s ever gotten to pick out patterns so she was super excited. It’s going to be a real gem, let me tell you!

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Road Warriors

We just returned from our first trip to see Dr Fluffy Unicorn since our move to Arizona. As we were sitting at the airport, I wondered if the trip was worth it. Did we really need to be going through the travel hassle? The overstimulation of going back “home?” I mean it’s a great excuse to go back and maintain our friendships but is it necessary?

The answer is an undeniable YES! Besides the warm welcome that we got from the entire staff. Including laughing over the time they put a full leg cast on each kid, it was clear that Dr Fluffy Unicorn is the dr for Sporty. From the first words out Dr Fluffy Unicorn’s mouth telling her about how he was just telling a new patient about her and her success to Sporty telling him about her new softball team and new school and life in Arizona, I knew these trips were necessary. But then when I asked about a new custom brace and watched them leaning over the computer together and reading all of the funny names of the different braces and what they are each for, it was beyond clear that we’ll be flying back to see Dr Fluffy Unicorn for as long as he’ll allow us!

So Sporty is doing well. Her feet are super tight. From her Achilles all the way up to her hamstrings she’s tiiiight! But when she walks, she walks normal so we’re in watch mode. No toe walking and normal wear on her shoes. He thinks she’ll get past this phase ok based on other cases where patients have tightened up at around 10 and then once growth levels out they are ok. We got a prescription for a custom night DAFO and we go back in 6 months (I specifically requested July to escape the scorching heat, cause you know, it’s all about me).

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