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.

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What I learned from watching my daughter in Colorguard

About five years ago if you asked me what colorguard was I would have asked if you meant the “flag girls” on the football field at half time with the marching band. I would have meant no disrespect, but I didn’t have a real frame of reference for colorguard beyond that they were the pretty part of the half time band performance.

Today however, if you ask me about Colorguard, I can talk about it for a looong time! Cause you see, I am a veteran “Guard Mom” whose daughter was Captain this year, is graduating from high school next month and last week performed her in final Winterguard competition. Oh.. you don’t know what Winterguard is? Well, Winterguard season is December through April and the guards perform a show entirely different from the fall and perform it inside a gym. It is quite a competition!

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So here are some of the things I learned over the last four years..

Colorguard is a SPORT.

Guard rehearsals are like practices for sports. Full sweat, smelly feet, sore muscles and long hours.IMG_2186 2

(Color/Winter) Guard is a synonym for FAMILY.

Over the last four years we have come to know the guard director, staff and students very well. These teenagers and their families have become our family.  The director has been a mentor and another mom for Maddie. Being part of the guard family is an honor.

Guard teaches the importance of the
individual WITHIN the team.

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One of the coolest parts of the color/winter guard team is that each individual and their work is incredibly important to the combined efforts of the team.  Hand positions, foot work, throwing (and catching) hard tosses, and the ability to keep up and on the beat are deal breakers for the overall look and ranking of the guard. Because of this, the team learns how to work together and use the unique skills and abilities of each member while working to get better and stronger each week.

 

Guard teaches young women that beauty and strength are two parts of the same whole!

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One of the greatest gifts that guard gives to teenage girls is the understanding that beauty and strength are two parts of the same whole. Being a member of the guard means that you have grace and dignity as well as strength and fire. These lessons learned during teen years are life changing and help girls mature and become strong and beautiful women.

I am so thankful that Maddie was a “guardie” and that I had the privilege of being a “Guard Mom!”

(Thanks to Amanda Akins and Derek Dodson for the incredible pictures!)

 

Winterguard, bruised knees and a powerful performance

I love watching Maddie perform. So much of our life is defined by the limitations that are put on her, that when she is able to participate in LIFE with her peers, we celebrate!

One of Maddie’s passions is colorguard/ winterguard. Participating in an event that is so hard on her body is costly to her. The exhaustion, sore muscles and constant bruising is a high price to pay, but worth it because she loves the sport.

Maddie is on Stephenville High School’s winterguard team and they have their championship competition on Saturday. On Tuesday, they were able to perform for the student body. They performed beautifully and it is always wonderful for their peers to see the amazing things that they are able to do!

Enjoy.