I Have A Confession

I think I might of ruined Sporty’s cheetah speed.

I have this deep, sinking feeling that her latest surgery ruined her cheetah speed.  I told her it would be locked away in her cast, ready to emerge once she was healed.  But it hasn’t returned and 7 months later, I’m worried it might not and it is absolutely eating away at me.  She’s been able to compete, and hang in there but at one of her softball tryouts this weekend, one of the league coaches called her out on it.  She texted me afterwards (yes, my 8 year old texts me from her dad’s phone) to tell me she did well but “Coach C told me I wasn’t running as fast as I could.”  She told him she was still recovering from surgery but she’d get it back.  Problem is, I think she was running as fast as she could.  She just can’t get the motor going, it literally looks like her legs are bricks when she runs.  I hope I’m wrong, I hope it’s her AFO slowing her down and limiting her mobility.  At her second tryout (yes, she had 2 because she’s Sporty and she doesn’t stop trying despite it being 95 degrees out and her lack of cheetah speed), she was the slowest runner at tryouts, only by .4 seconds, but she used to be the fastest.

She was fast, she was fine.  She wasn’t in pain.  Her foot was tight and relapsing but it wasn’t impacting her life.  Why did I take that all away from her?  Even if she never gets her cheetah speed back and she can forgive me, I’ll never forgive myself.  She was cheetah speed, that’s what made her Sporty.  How could I be the one to take it away from her?

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Sporty Being Sporty

Here’s Sporty being Sporty at her game Wednesday. Of course she wanted to play despite it being Open House at her school. So we played 3 innings and then bolted to school!


Sporty’s foot is feeling much better since she’s been back in the AFO. Her pain is gone and she’s running much more naturally. We have 2 more weeks until we return to Dr Fluffy Unicorn for a checkup, I assume we’ll have to get her out of the AFO eventually but I have no clue what his plan will be. I’m also nervous about her other foot. She has no flexibility in it. I swear, it’s always something. But she’s pain free and she’s not really minding her AFO. She just wants out of it because I promised her a new pair of shoes when she got out of it. Priorities!

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Pre Existing Condition

This is going to get a little political, maybe controversial. I don’t usually share my political opinion. The hubs and I discuss politics behind closed doors but I don’t put it on social media, I don’t get into it with friends or really anyone. Every one is entitled to their beliefs but I have to put it out there that I am deeply saddened by the decisions our president made on healthcare and so for the sake of Sporty’s future, I feel compelled to put it out there.  This post is way outside of my comfort level with this sort of topic.

This photo popped onto my timehop a couple of days ago. It got me thinking. The man holding Sporty as a newborn is my grandfather, Poppa Jack.

He’s a man I have the most respect for, he was my most favorite person in the world. He was a die hard Republican. He fought for our country. He was a dermatologist who never bought the car of his dreams because he didn’t want his patients thinking he was charging them too much.  I used to visit him on spring breaks when I was in college instead of flying home to California, I loved that special one on one time I got with him, even when he made me leave movies 15 minutes before they ended. He always believed in me.  He was a man, whom when I called him up in tears, over Sporty’s clubfoot diagnosis, got on the internet at 95 and researched treatment options for Sporty. He called his orthopedic friends and told me she’d be fine and to use Ponseti. He was generous to his family.  He was also critical and hard on those he loved.  Young Jedi is named after him.  He was a man, who even as he was letting go of life, lit up when he saw Sporty and when he met Young Jedi. He hated Democrats, in fact if we felt like a good fight we brought up one of the many Democrats that he loathed, usually the ones from our home state of California were at the top of his list.

He’s holding his first-great granddaughter in this picture. This is the first time they met, when she was about 4 months old, and he adored her, she had just finished casting for her feet and just moved into her brace.  I was most afraid of telling him about Sporty’s feet, somehow I felt he would be the most critical, I also didn’t want him to worry.  He always worried about his family.  To my delight, he was one of the most supportive people about her condition.

In this picture is also a young, healthy girl, with a bright future who happens to have a pre-existing condition. All because at sometime around week 16 of her development, a chromosome decided to mutate and give her crooked feet. Or maybe it was the excess amniotic fluid that my body developed that caused her clubfeet. But I took my prenatal vitamins, I ate healthy, I tried to eat organic but she still had clubfeet. I did everything the books said, yet still, my baby was born with a birth defect, one that will live with her forever.

She’s a vibrant, carefree, healthy and happy 8 1/2 year old with a pre-existing condition. And she now has a big red “X” on her medical history.  Her clubfeet will be forever.  That’s the hard reality of our journey but something that I have grown to accept over the past year.  She has a pre-existing condition that will be with her for life.

I’m pretty sure if Poppa Jack were alive today, he’d be appalled by the healthcare decisions of the nation, the one he fought for, the one he loved.  And as much as he hated Democrats, he loved his great-granddaughter more and he’d want what is right for his family and for all who need healthcare.

So we’re angry and I’m even more worried than I was before because as much as her future with clubfeet is unknown, so may her ability to receive adequate healthcare at an affordable cost.

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Community

This one is about the people I’ve met on our clubfoot journey.  The ones who understand the stress, the worry, the constant scrutiny of feet.  Most people sympathize but few understand.

Last week when we went to see Dr Fluffy Unicorn, he asked me to call a momma-to-be who will be joining the clubfoot club soon with the arrival of her baby boy in two weeks (so if you’re reading, hello and welcome!).  She’ll be using Dr Fluffy Unicorn and he had told her about Sporty so he asked me to touch base with her and talk to her about treatment and all of the fun {insert sarcasm} feelings that go along with being told your baby has a birth defect.  We seriously talked for an hour and could have talked forever but she had her 3 year old home and I had to be a little productive while Young Jedi was at school so we parted ways after an hour.  It was a great conversation from diagnosis, to what to expect in treatment, to special clothes, to Dr Fluffy Unicorn.  I’m so glad we were able to connect and I really hope I set her mind at ease a little.  Her little boy is really going to live a good life, just like Sporty.  And I really hope that we’ll meet in person one day!

But it got me thinking about all of the people I’ve met along the way and how important each of them has been on our journey.

There’s my friend in Virginia who was probably one of the very first people who reached out to me when I was still pregnant with Sporty through a yahoo support group.  Her little guy is about 6 months older than Sporty and she really got me through those first years, first casts, brace years, tenotomy.  We’ve even been lucky enough to meet in person when Sporty was about 15 months and had just taken her first steps.  She seriously got me through those first few years sane, without her, I may have cracked under stress and she’s still one of the first to be supportive or sympathetic of Sporty and all of her accomplishments and set backs.

Then there’s my wonderful friend in San Jose who’s clubfoot son was born on the same exact day as Young Jedi.  We’ve only hung out a few times, FaceTimed a few more, but she’s my sister from another mother.  I keep trying to convince her to move closer so the boys can go to school together and we can hang out!

There are so many more of them, so many that I can’t list them all.  Many of them I’ve never physically met but we know each other, we’re friends on Facebook or Instagram, we know each other’s triumphs, each other’s struggles, we cheer for each, we are sad with each other with set backs.  We worry for each other when they have their foot check-ups.

Lots of people always say, “oh clubfeet!  it could be so much worse.”  It’s true, it could be worse, but it could also be better.  It’s “just” their feet I’ve heard, it could be so much worse.  Yes, I know this very well, but your feet carry your body, they determine how you enter a room, they set the pace.  I know each kid has their own struggles but for us in the support group, we understand our daily struggle.  We understand the fear of relapse, slipped casts, putting a brace on at the end of each day, the worry of pain later on in life and because we live it, we have our own little community full of support.  We understand how much more those first steps mean, how far our kids have come when they take the soccer field, football field, or softball/baseball field.  We understand why a simple run can mean so much.  And we understand how quickly a corrected clubfoot can relapse.  So while clubfoot isn’t necessarily a group I would have volunteered for, the friendships and the community have made it a group I rely on, it’s a community that keeps each other going.

 

 

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This Girl!

This is not a clubfoot post but a proud mommy post. Sporty’s school does Character Traits each month and two kids from each class get recognized for exemplifying the trait for that month.  It’s kind of like the Good Citizenship Awards from when we were growing up but every month has a new theme. Sporty has never gotten one.  A few months ago she made a comment about how she wished she could get one. We talked about behavior and that you have to earn the award. That means being a good person, treating our peers with respect, taking pride in our work and focusing on doing work correctly and being a leader.

Sporty, let’s see, how should we says this, Sporty doesn’t always make the best choices. Sporty can be loud, super competitive, a micro manager and doesn’t always make the best impression. That was my nice way of saying she can be a pain in the butt and disruptive to class.

Well, this week my friends, Sporty got herself a character trait award for “Doing My Best.”


I had a meeting with her teacher yesterday to plan the end of the year class party and it was too hot (seriously in the 90s) for Sporty and Young Jedi to play on the playground so they came in and we were talking about projects and the teacher made a comment about the reason she got her award is because she works on projects by herself. We’re there to help guide her of course but she does the project and they look like a 2nd grader does them. She also struggled with reading this year but worked really hard to bring her level back up and increase her confidence in it. She may not be the smartest (and she is fairly bright) or most well behaved all of the time but she has drive and determination.

Sporty said when the principal called her name to go up and get her award, she had to do a double take and her exact words were “wait what!?!”  Then her teacher said she stood on stage with a surprised look on her face the whole time mouthing “I can’t believe it.”  Haha!

Added bonus…she gets a free kids meal at BJ’s. Guess where you’ll find us this weekend???

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Because 

afoaShe wouldn’t be Sporty if she relaxed, took it easy, and let her foot rest.  At least she’s wearing her AFO for this gravity defying activity! 🙈

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Best Case Scenario

Well after speaking with Dr Fluffy Unicorn’s nurse yesterday we decided that Sporty should be seen asap especially since Dr Fluffy Unicorn will be out next week. Sporty has been in so much pain, we all had an “I hate clubfoot” screamfest last night. We even skipped softball practice yesterday without much argument. The main concern was that her tendon detached from the foot and that was the cause of pain.

I hate feet. I’m just going to put that out there. I find it very ironic and cruel that I got a foot birth defect in my life because feet gross me out. I hate them. But last night I decided to put my big girl pants on and feel around her foot where it was hurting and on the bottom where her tendon was anchored I felt a little knot. And well that was it for me!  I went running.

I’ve been sick to my stomach all day with the thought of her tendon being detached from her foot. We always knew it was a risk but never so soon after surgery. I always thought she’d pop it sliding into a base or something super bad a$$ like that.

The drive up was a LONG drive (especially since Young Jedi was in rare form and we were all tense). It was an even longer wait in the waiting room. On the plus side, I unloaded a bunch of books and coloring books on them for the waiting room so my house is now down a couple dozen books.

Dr Fluffy Unicorn (I might need to start abbreviating this!) came in and Sporty ran the show. My foot hurts here, here and here and when I do this, this and this. It was unreal. I wish I had recorded it. I barely spoke the entire appointment. I was merely an observer. Sporty kept asking why it hurt, what was the cause and based on the exam it seems she’s just not recovering as quickly as we expected. The knot that sent me running – a dissolving stitch that still hasn’t dissolved 5 months later. So now I get to give her daily massages to try to break it down (have I mentioned that I hate feet and they gross me out???). During their conversation Sporty was presented with 3 options to help with recovery: sit around and do nothing (which even he knew would never happen) 2. Have a cast to rest her foot 3. Go back into her AFO while she healed. Nothing sounded appealing to Sporty but when forced to chose between a cast and AFO, AFO won. Good thing she didn’t throw it away a month ago after her last appointment. Overall he was quite happy with the way her foot looked, position and flexibility.

We also got to present Dr Fluffy Unicorn with a book by a fellow clubfoot mom with a special message to other families by Sporty. Dr Fluffy Unicorn loved it!  And I realized this is the first time I’ve ever gotten a picture of Sporty with Dr Fluffy Unicorn!


So we’re back to him in a month. But considering what my deepest fears were, we really ended up with the best cast scenario. Tomorrow, Sporty and I are off to softball with AFO in hand and hoping that we can squeeze her cleats on over it!

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Choices

I’m trying to teach Sporty to listen to her body. To know her limits. When we found out about her clubfeet we vowed to never let it be an excuse for her so it never has been. But with surgery there comes recovery and with that limitations.

I told Sporty what Dr Fluffy Unicorn suggested to help ease her foot pain. I told her he didn’t want her playing but ultimately it’s her body, she knows how she feels and that I trusted her to make the right decision for herself. She chose to play. Because she’s a baller. Because she wants to get a college scholarship to play ball. Because she didn’t want to let her team down.

She started asking for a pinch runner in the 3rd inning. I knew she was hurting because, well Sporty is made to run so to ask for someone else to run means she’s hurting bad. When we got home she could barely walk.

“Mom, I made the wrong choice, I shouldn’t have run. I just didn’t want to let my team down.”

I get it Sporty. We talked about it being ok to sit a game out. Buster Posey sat out 10 days after taking a pitch to his head. He’s her favorite. He didn’t want to let his team down, I’m sure, but he’s no good to the Giants injured. It’s better to miss one game and heal than miss multiple. The Warriors head coach is sitting out because he’s hurt and they’re in the playoffs. Our bodies need to recover. Sporty, I want you to know your body and listen to it. This is something we’re going to deal with our whole life, I want you to learn how to manage it.

“Ok mom, next time I’ll make a better choice.”

Lesson learned. I don’t want her feet to define her. I also don’t want her in pain her whole life. I want her to live a long, active life without clubfeet defining or ruling it. Somewhere that fine line exists. Together we need to find it.

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With Pain Comes Compassion

There are many things I can say about Young Jedi.  He’s a tough kid, like a really tough kid.  I lose sleep over him.  I cry myself to sleep on his really bad days over him.  He’s explosive, he’s temperamental, he negotiates everything, he can be downright nasty.  He doesn’t share and many days he’s just plain embarrassing in public.  He can be loud and belligerent. Many days that I am out with him, I feel like “that” mom.  You know who she is, that stranger that you see out who can’t control her kid.  The one who, no matter, how hard she disciplines, it just makes the kid act worse.  There are many days when I feel like a failure of a mom because everything with Young Jedi is just so downright hard.

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But then he does something like this.  Then he shows me that he’s kind and compassionate and he cares for his family.  And I think, maybe I’m not failing Young Jedi after all.

Despite being 3 years younger than Sporty, he’s always been fiercely protective of her.  When he was 2 and she had her first surgery he blocked his classmates from knocking her down.  When Dr Fluffy Unicorn was taking off her cast after her first surgery, Young Jedi stood over him yelling, “Don’t hurt my Sporty!”  I saw his care and his compassion with her last surgery this winter.  And yesterday when Sporty came home from school and couldn’t walk, he dotted on her.  Rather than hit her and annoy her, he got her water, asked her if she needed snacks, refreshed her ice and when it came time to go upstairs for bathes, he gave her a hand and guided her upstairs.

So even though Young Jedi is on the Dark Side of the Force most days, there’s this, and I need to remember this because under that ornery exterior, there’s a sweet, generous, compassionate, caring, nurturing, and loving boy.  And that counts for something.  That matters.

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Complications

This is a photo I just took running to Sporty’s school, a bottle of children’s ibuprofen where my coffee normally goes. Last night I noticed her limping and running awkwardly while she was out playing with neighbors. I figured she was just fatigued after a slumber party the night before, followed by another birthday party, and then 2 hours of softball practice. Plus they did a ton of running at softball.

This morning she woke up and it was still hurting. She asked if I could call Dr Fluffy Unicorn. The only other time she asked me to call him was the morning after her tendon transfer when her pain meds weren’t working. My stomach sank. I knew that wasn’t good, she usually powers through. I dropped her at school and came home and called him. His nurse called back within 15 minutes, a huge improvement over his previous nurse whom I dealt with post-op. (Don’t get me started on him.) His new nurse is awesome. He assured me it was probably nothing major but we’re going to be conservative. No activity (yeah cause that’s going to happen), ice and ibuprophen. And he’d follow up on Wednesday (after I got a chance to check her range of motion, ice, rest and treat with pain meds)but no physical activity for now until the limp goes away. Sporty has a softball game tomorrow so I can only imagine how that’s going to go over, I negotiated with him letting her play tomorrow but having her have a runner.

I decided to drop her teacher a note letting her know about the pain and the dr request for no physical activity and to let her know if Sporty was in pain to go to the nurse and I’d bring some medicine down. (Another reason I no longer work). 15 minutes later I got a note from her teacher saying Sporty was in pain, they tried elevating it and it was too painful so she was in the nurse waiting for me to bring meds.

Fortunately the office is well acquainted with me. They were awesome when Sporty had her surgery and went above and beyond what they needed to do to accommodate Sporty, so when I walked in with medicine they were great. Sporty of course took her meds and was off to class despite me begging her to ice it.

*Heavy sigh*. Clubfoot can just go away now. We all need a nice long break from it. Please keep your fingers crossed that this is nothing and she recovers quickly.

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