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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Sometimes I Wonder

Sometimes I wonder if I am totally screwing up as a mom. When the kids bark at me to get them something, when they snap an order at me. I don’t ever jump, rather I correct the behavior but it becomes an endless battle that usually results in some sort of snotty attitude from Sporty or a tantrum from Young Jedi. And just when I think I’ve totally screwed them up and I wonder what happened to the kids that used to say please and thank you for everything or in Sporty’s case “No thank you please,” I receive this,

You see, I had to be up at 4:45, that’s in the am folks, Saturday and Sunday to get Sporty to her softball games. Papa Bear doesn’t move so fast and we weren’t waking the bear aka Young Jedi, so it defaulted to me. As she snapped at me throughout the day and gave me attitude, I wondered why I woke up early and skipped my spin classes, she presented me with the above letter. I took a big sigh and realized, maybe I’m not screwing up so badly after all but we still need to work on her spelling!

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A decade

It’s hard to believe it is a decade this month that we got Sporty’s Clubfoot diagnosis. It feels like yesterday that my head was a blur with things like “birth defect,” “worried,” “she’ll be able to walk but never compete with her peers athletically,” and “we recommend an amniocentesis to rule out other genetic disorders.” I can still feel the amnio needle piercing my skin and pulling out fluid, my head buried in Papa Bears arms too afraid to look at the screen and see that needle come within centimeters of Sporty. But here we are 10 years later and the joke is on that perinatologist that struck the fear of God in Papa Bear and I. If only I had a crystal ball to look into the future back then. To save myself the sleepless nights worrying about her arrival (cause I needed sleep then to make up for Young Jedi’s lack of sleep), to enjoy infancy and not focus on treatment so much. To see the strong, athletic girl that we are constantly shuttling to activity after activity.

10 years ago I was on bed rest waiting for our amnio results. This weekend, we’ll be at softball games all weekend watching her first softball tournament on her new team. Watching her take the field never gets old because I know our story could be much different. I know we’re lucky that, despite her tough case of clubfeet, she’s pain free and she has full mobility. I used to wonder “why us?” I now look at her clubfeet as a reason. I feel like we were given clubfeet for a reason. Sporty is now embracing her feet. She recently shared her journey with her new class. She could have chosen something else to share. This move could have been her fresh start. No one at her new school knows about her casts, braces or surgeries, and she could have kept it that way, but she chose to share her journey. That’s all I’ve ever wanted, to raise a girl born with a difference and to embrace and accept it. She’s who she is, clubfeet are a part of that, they don’t define her but they certainly have helped shape her resilience, her strength and her courage. I don’t ever want her to be ashamed of how she was born and so far she doesn’t seem to mind her difference. And as for us, if we can help new parents and show hope for the future, then the countless trips to the orthopedic surgeon, the hours spent shuttling her from activity to activity, if they give hope to another family. It’s all worth it. So here’s to a decade with clubfeet in our life. I really couldn’t imagine Sporty or our lives any other way!

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Call Me Cray

But I love a good monsoon. Obviously I don’t like the damage and destruction they can cause but I love the cooler temperatures that they bring and they seem to “reset” the desert. I love watching the lightening light up the sky and since they’ve been pretty common since we got here, I’ve learned to appreciate them. They usually also keep the wildlife at bay though this morning Wookie and I had a coyote encounter on the way home from our bus drop off.

Wookie and monsoons…not a fan! This was last weeks big storm when Poppa Bear had to take him for a walk and a huge boom of thunder hit while he was on his walk. We need to get him some Pet Ease or something to help his anxiety with the storms.

Last night we had another pretty big storm. Lots of damage that is no good (and the phones at the school have been out all day) but during the storm the temperature dropped from 98 to 68 degrees and it was soooo refreshing. So after I put the kids to bed, I grabbed some wine and sat on our (covered) front porch and enjoyed the sound of the rain and thunder and the cooler temperatures.

A neighbor texted to make sure we were home safe and pretty soon she and her husband were over and we were drinking wine and getting to know each other better. We used to do “court wine” in our neighborhood in California and that’s how all of the moms really got to know one another and our evening last night brought me back to those days and made me feel a little less homesick.

Nothing like a good storm, wine and good people to make an evening!

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Goodbye Summer

Vacation that is because it seems like the heat is here to stay for a while. Maybe forever which makes me want to cry. I made my way down to the shopping area today and walked in and out of Lululemon because it was too hot to try clothes on, and I have a gift card burning a hole in my pocket AND drum roll please….I was ALONE because today I sent Sporty and Young Jedi off to school for their first days of 4th and 1st grade.

The bus rolled up around 8:15 but our morning started much earlier because there were lots of nerves. Young Jedi was up and dressed by 6:30 🙄 and Sporty was up and dressed by 7:00. Now before you think, well they must want to wear their super cute new back to school outfits…nope, they wear uniforms to school this year. They were ready to leave the house at 7:45 and I could only stall them until 7:55 so off we went to the bus stop, where we stood for 20 minutes, it was already 90 out so we also sweated.

There were lots of nerves, new school, riding the bus, no parents beyond the gates but they walked to the bus and climbed up while Momma Bear choked back tears. The coddling mom in me wanted to be at the school and reassure Young Jedi and talk to his teacher but I know deep down this is probably really good for both Young Jedi and I! I need to teach him more independence and I think if he can do this, it will help his confidence. Meanwhile, I did a 6+ mile run (on the air conditioned treadmill) with no interruptions, other than the dog barking for 20 minutes because the very ferocious inflatable unicorn was in the pool and looked very threatening to his 11lb self. Then I went shopping by MYSELF! And now I’m sitting and counting down the minutes until the bus arrives back to the neighborhood, hopefully with my children on it!

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