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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Today Young Jedi had a Thanksgiving performance. I had signed up to chaperone Sporty’s field trip back in August so I was going to miss it but luckily Poppa Bear is on shut down this week so he was able to attend. I signed up for cookies for the little feast that was following the performance, mostly because I figured that was something Poppa Bear could handle bringing to class. Last night Poppa Bear was at softball practice with Sporty. Young Jedi and I got back from walking the dog. He noticed some cookies on the counter and asked what they were for. I told him they were for his class after their performance. He didn’t say much about them other than how delicious they looked (um, yeah cause they were coated in frosting and rainbow sprinkles!). He ran upstairs to shower and came down a little while later to ask if he could pick a prize from the prize bin. I was about to tell him no because while he had a decent day, it wasn’t spectacular. Then he went on to explain that a little girl in class can’t have cookies because she has diabetes. He wanted to give her a little something while everybody else was eating their cookie so she wouldn’t be sad.

My heart just about burst into a million pieces. Young Jedi has worried about this little girl before but I was just blown away by his thoughtfulness, his ability to empathize with how she would feel watching her classmates eat these sugar bombs knowing she couldn’t join them, the exclusion that she would feel. I was so proud of him so of course he was able to pick out a little prize for her.

I wish the world could see this side of Young Jedi and not the loud, gruff, impulsive and belligerent boy his anxiety makes him. I wish the world could really, really see Young Jedi’s true identity, deep down core of his soul – the kind, thoughtful, energetic, empathetic, passionate boy that he is. Mental illness is real and it’s nasty and it has such a stigma associated with it. But behind Young Jedi’s anxiety is a boy who feels everything and cares deeply, even if his anxiety makes it appear he doesn’t care or feel, the truth is, he feels more than anyone else!

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