Rebuking the Lie

I am 44 years old and I have lived most of my life thinking that I am fat. The reality is that I’m not. Yes, I need to lose 15 pounds. But I’m fit. I’m healthy. I’m strong. I’ve been these things most of my life.

But the reality and the mind are not necessarily friends.

This weekend while sitting and talking with one of my sisters, she told us the story of rebuking a lie about herself and her parenting that had taken hold in her head. Last fall an incredibly mean-spirited person called her some ugly names and said she was a bad mom. She is NOT a bad mom. She is an INCREDIBLE mom. She is so thoughtful and consistent in her parenting. Even though she is still early in the parenting journey, I listen and learn from her all the time. The reality is that the person who said ugly things about her, didn’t know her and knew nothing about her parenting.. but the seed was planted and she realized that she had to rebuke the lie and claim freedom and grace and strength in the fact that she is a GOOD mom.

I listened to the story and was outraged and ready to go fight this nameless person. I was so mad on my sister’s behalf.

Last night after we got home and I was getting ready for bed, I realized that I have been struggling for YEARS with a lie that took hold in my head and has paralyzed me. Everyday when I look in the mirror and consider my food choices, in the back of my mind a little voice has said, “what does it matter, you are just a fat a** anyway..”  I was shocked. I realized for the first time in probably 30 years what was happening to me.

So this morning, I decided to do some research and look for physical proof that I have been a fat a** all of my life.

Here is what I found. I was not fat.

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Out of 44 years, I have three years where I was overweight and one year where I was very heavy. During the 2010-2012 years I had a very sick child where I took her to the doctor over fifty times each of those years… and I had a baby in 2009.  In June 2012 I realized what was happening and took control of my health.

To anyone else, I would have called out that lie that they were saying about themselves. I would have preached grace.

But for myself, I believed the lie.

So today, I am rebuking the lie that I was told so many years ago. Oh the power I gave someone else’s words. The careless words of others have wounded me daily for years.

And no more.

I am not fat.

Today I am embracing freedom and grace.

Today I am claiming my mental and emotional health back.

Today I am standing on the promise that I am created in God’s perfect image and that I am STRONG. I am HEALTHY. I am FIT!

Today, I rebuke the lie that I have allowed define me for all of these years.

No more.

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Momma wasn’t ready to go from Walking Boots to AFO braces

IMG_3463If you have been around here much, you know that my sweet daughter Maddie has faced 18 years of health struggles, mysterious symptoms and daily pain. Her strength and grace in the midst of chronic health problems simply amaze me.

The past year has been no different. In fact, if anything, she has been more resilient and more determined that her limitations would not hold back her dreams.

She graduated a month ago from high school, 23rd out of 216 in her class. She crossed the stage wearing walking boots on both feet because of a spontaneous bilateral foot drop.

Since that time she has been to three different specialists, has had nerve testing and has had body scans completed.. and there is no medical reason for her feet to not work. The only explanation is that this must be a side effect of her auto-immune disease. And because there is no nerve damage and no “reason” for this manifestation, there is no prognosis or timeline for recovery. Her first episode with a foot drop was back in November and it just affected one foot. This episode took out the other foot and set back the first foot that had been recovering. The only link.. she was in a flare of her kidney disease.

So here we are in Texas and it was 105 degrees today. Neither of her feet work to be able to walk without support and they aren’t getting better. The walking boots are bearable if you don’t have to wear them all the time, and if you know its just for a few weeks… but not if there is no end in sight.

Today we went to the Hanger Clinic and Maddie was fitted for AFO braces. This was real. And IT. HURT.  It hurt because we had to acknowledge that we don’t know when/if she will get better. Every night I tell her that maybe she will wake up tomorrow and her feet will work. But we have to make realistic decisions and choices.

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Maddie chose the Noodle AFO brace as we were able to take it home today. She can get custom ones later if we see that she will need them.  These braces are carbon fiber and will allow her to have more mobility.

She walked around in them and then we paid our portion of the bill.. Dang. These things are expensive…

The specialist that helped us was fantastic and she went to college at Texas Women’s were Maddie will start in the fall, so that was nice as she had first hand knowledge about the terrain that Maddie will walk.

From there we went to Fort Worth Running Company for shoes. I hated to go there as Maddie can’t run and has never been able to run. But I get my shoes fitted there and I knew that they would treat her with respect and courtesy.  And she was! Oh my! The salesman worked with Maddie and did a phenomenal job. When he finished I commented that he hadn’t expected something like this when he got to work today and his reply was that in his previous job he helped fit orthopedic footwear! What an incredible gift to us today. He had no idea the level of stress and heartache we were feeling.. instead he focused on Maddie and making sure that she felt stable and comfortable.

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As we left the store, I couldn’t help but notice her steps and her legs. I’m so thankful that she has these horrible braces. But I am so very mad that she has these horrible braces. I ache for her.

Maddie’s entire life has been about keeping her well and away from germs. I’m used to questions about her kidney disease, her immune system, her chronic pain. But I wasn’t prepared for mobility issues. None of us were, but I guess we should have been given that she has been in physical therapy on and off since she was 8.

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There you have it. This beautiful young woman is strong and is going to do incredible things one day. She is a bright and shining example of all that is good in this generation. Despite all the crap that life throws at her, she smiles, survives and loves others.

If nothing else, I am praying that the AFO braces in all of there “realness” will give the sense that Maddie’s struggles are real and long-term. Lots of people wear walking boots for a short period of time.. but no one wants AFO braces.  For someone that has lived with an invisible illness for 18 years, this is like turning a spotlight on her life.

And for all of you out there, I have one request.. PLEASE STOP asking her about her feet. Please help me cut off the random stranger in the parking lot that practically runs us down to ask what happened to her feet. Please help me stop workers (and even hospital workers!) from asking how she broke both feet. Please help me stop uncaring and uninformed people from asking callous questions and making hurtful comments. This experience has shown us that adults are significantly ruder than children and that the self-importance of people knows no bounds.

We leave for Disney World in just under a week. She will use a scooter as she has in the past…

I’m so glad she has the braces for the trip.

I’m so sad that she has the braces for the trip.

My heart was not ready to go from walking boots to AFO braces.

Graduation

Graduation has come and gone and with it, Maddie completed her high school journey. There were many times over the last twelve years that I wondered if we would make it to this point.. but we did.

Watching Maddie graduate was wonderful, yet like every other accomplishment in her life, it was not without a struggle. Maddie has been wearing two walking boots for about a month now and these boots, while worn for protection and the ability to walk “normally,” are not easy to navigate ramps and uneven ground in.

But Maddie does just that.

I am so proud of her. It’s hard to not get weepy when I consider her struggles and her accomplishments. Many would use the daily pains and hurts as excuses to not leave the house, but Maddie perseveres and refuses to give up.

Maddie’s educational journey is really just beginning. She wants to be a music therapist, so that means two degrees, an internship, and a board certification. I know that she is going to do incredible things and be a difference maker for children who face physical and/or cognitive struggles.

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So for those of us out there who get frustrated when life doesn’t meet our expectations, I ask you to remember those like Maddie who face daily struggles of chronic pain, chronic illness, rare diseases and complex and often undiagnosed problems.

Since Maddie can get up each day with a smile, a song in her heart and the desire to reach her goals, surely we can join her in that journey!

Educators Need To Do Hard Things

As an educator, it is important to remind myself that learning new things and mastering new skills isn’t always easy. I think educators and those in the business of education often found learning to be easy.. and so we forget that for some, learning is HARD.

So for the third time, I’ve selected the month of May to be my month of hard things… in the form of my Handstand Challenge.

Why? Because handstands are HARD. Because handstands force you out of your comfort zone and require not only that you trust your hands and shoulders to hold you up, but require you to balance and hold your core tight at the same time. In essence, handstands require physical effort and mental strength.

I also really enjoy watching my progress over the month. It fits my grit mindset of 20 times to learn it, 200 to master it. So over the course of a month, I’ve captured my learning process over 20 times (31 to be exact) and I’ve done more than 200 handstands because with every up there are 5 to 10 failures. By the end of the month, I haven’t mastered handstands, but I’ve made a lot of progress!

And interestingly, each year I start from a stronger place. Just like the educational foundation that we hope students have as they are given new content; my handstands are significantly better than last years handstands when you look at the data (date and photo).  Even better, when you go back three years, the progress is quite impressive. In 2015, my day 1 handstand was up against the wall outside of my house. I remember clearly being scared that I would fall, that I would slip, that I would break something!

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But even braced against the wall, I was so proud of the fact that I DID IT!

Moving to 2018, my day 1 handstand this year was in the middle of my living room with no wall to brace me, no helper to stabilize me and no pillow to catch me should I fall. The difference this time was that while I knew the handstand would be ugly, I knew I could do it. In fact, my Day 1-8 handstands are all pretty awesome in my opinion.. even though they only last a second or two!

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Isn’t that what we want for our students? Yes, some learning and some processes are ugly, but students NEED to know that they can do hard things! Progress needs to be celebrated and efforts acknowledged.

When was the last time a student was asked to CHOOSE something outside of their comfort zone that would be hard and then given the tools to accomplish it? And I’m not talking about passing the STAAR (state mandated test) test.. but a student-driven academic goal.

So as I look out at my classroom and watch 150 students pass through my door each day, I tell them about my handstand challenge. I invite them to follow my progress on instagram.. not so that they can make fun of me.. some will no matter what… but so that they can see adults in their lives doing hard things.. things that aren’t in their comfort zone.. things that don’t come easy. Because maybe, just maybe, some of these students will remember my sad attempts at handstands when they are in the midst of their own handstand struggles in life and keep going.

Yesterday you were a child, Today an adult..

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Photo by Derek Dodson

Maddie turned 18 this week. Of course I knew this was coming.. but I still wasn’t ready. We have been working on college scholarships and planning graduation events, but somewhere along the way I forgot that with graduation and college, my “little” girl was going to become an adult.

Unlike many parents, I’m not worried about Maddie being a responsible adult. Maddie has been responsible pretty much her entire life. And it’s not that I can’t let go.. I will and am..

But here is the deal.

For 18 years I have spent pretty much every breath that I have in me protecting Maddie’s health. I have spent thousands of hours in doctor’s offices, in waiting rooms and researching diseases and cures when the specialists didn’t even know what to do or how to treat her.

And then, starting at 12:01am on Maddie’s birthday, I started getting the emails.

“You have been unlinked to Maddie’s account”

“This email has been removed from the account”

“You have been removed from this account”

over

and

over.

I have been removed and unlinked from Maddie’s life.

There aren’t even words to describe how that feels. Maddie didn’t choose to unlink or remove me. An automated system that just the day before wouldn’t allow Maddie to make a single decision for herself now requires her to make all of the decisions and excludes me from even seeing her account!

It hurt.

But more than that, it scared me.

I wasn’t ready and I hadn’t downloaded all of Maddie’s files. I realize now that I should have been more proactive, but dang.. just living in the trenches is hard enough. Someone should have warned me! That automated system should have sent me an email 30 days prior saying that unless Maddie authorized it, I would be removed from her accounts.

For those of you out there that have never had the struggles that come with having a child with 13 different diagnosis codes and almost a dozen different specialists, I’m sure you think I’m overreacting. Just hang with me a moment…

This week along with Maddie’s birthday, she has had some ongoing and new health issues. She saw her primary doctor who did blood work and is working to get in to see two of her specialists next week. Both specialists will need to see the results of the blood work. None of these three doctors work together or are part of the same network. My job for the last 18 years is to be the manager and provide all of the paperwork and logistics for each of the various doctors. Now it’s Maddie’s responsibility. A responsibility that Maddie will take the lead on, but truly wasn’t ready to take on. As she said, when the doctor’s office calls with results from the blood work, she isn’t even going to know what they are talking about! And Maddie is an educated patient!

I can’t help but be a little terrified.

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The quest continues with Specialist #22

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Today we are meeting specialist #22.

Yes, today will be the 22nd time we have sat down with doctors who have chosen to specialize in a branch of medicine and have hoped for answers for Maddie.

I’m hopeful. I have to be.

But I’m not “getting my hopes up.”

Over the last 17 years we have learned resignation. Dang.

But we have never given up. We have never quit. We have never stopped searching for answers.

So today, we go meet another doctor. We tell Maddie’s story again.

Maybe, oh please, maybe today we will meet a doctor willing to captain Maddie’s uncertain and uncharted medical ship.

We have to hope.