June 2018 – Emily Maxwell McLemore

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

Published on June 28, 2018 by EmilyMaxwellMcLemore2 Comments

If 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.

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.

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.

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.

It’s not ScreenPrinting, It’s SCREAMPrinting

Published on June 20, 2018June 20, 2018 by EmilyMaxwellMcLemoreLeave a comment

My dad is a master screen printer. He has screened thousands upon thousands of paper/plastic/metal items over the years. We have screen printed flags and even blankets together. But he doesn’t screen print clothing items.

But we did this week. Last spring I was able to purchase a four color screen printing system for my classroom with an education grant. It is really cool and we used it with my students for one color jobs and have had great success. We are working our way up to the more advanced projects!

So for our 14th annual Maxwell Lakehouse trip, I asked Dad if he wanted to screenprint shirts for all 22 of us. Kylie and Dad came up with the design, I fine-tuned it and printed it, and we ordered tshirts. We made the screens and are increasing our skills with the emulsion process.

Finally we were ready to print. Kylie and Lexi had to come help. Given that I grew up screenprinting with Dad, no way were they not going to help us! Just getting the shirts ready to print was an undertaking given that our sizes start with a 6 month old and go up to an adult xl.

I took a time lapse video of our work. If you watch carefully you can see Kylie and Lexi screenprint a little themselves at the end! Lexi was the master at loading the shirts exactly right and Kylie pulled the shirts and set them on the drying rack.

We were doing fine.. actually we did great until about shirt number 17. At that point the fact that we were not putting the shirts under the flash dryer between colors became an issue. I knew it would be.. but I had hoped that we would make it to the end first. But no. Dad was so disappointed. I wasn’t. I guess twenty years of teaching public school has me thinking that getting 16 of the 22 done without too much of a mess is a win. Dad said we weren’t screenprinting, we were SCREAMPRINTING!

After we took stock of the shirts, we decided to run white on top of the blue. I LOVE the way it turned out! There are a couple of shirts that are not great, but overall, I consider this a successful project.

And next time, we will stop and figure out that blasted flash dryer so that we can print all the colors without ending up with “psychedelic” shirts!

I can’t wait to get our Maxwell Lakehouse family picture taken in a week or so.

Yearning

Published on June 12, 2018 by EmilyMaxwellMcLemore1 Comment

I have so many thoughts swirling in my head.
So many things I want to say.

But I can’t… cause I’m struggling to process it really myself.

I’m really not trying to be one of those vague woe is me social media posts people.. You know.. post

But guys, let me just say…

Specialist #25 had no answers for Maddie’s bilateral foot drop. We stumped him. And he was supposed to BE THE ONE. She has no nerve damage and no neurological reason for her feet to have just stopped working. The doctor was nice and concerned, but he had no answers.

Guys, I was scared to death over this appointment. We were assured that we would get some answers today. But Maddie knew. She didn’t have her hopes up.

And why should she?

Her entire life has been No Answer. No Reason. No Explanation.

So we have been referred to Specialist #26 and hospital #7.

And yes, of course we are thankful that more of the incredibly scary diagnoses have been ruled out. But could we, maybe, someday get an answer?

The yearning doesn’t go away.

The ache is ever present.

The hurt tangible.

My path is full of rocks

Published on June 3, 2018 by EmilyMaxwellMcLemoreLeave a comment

For the last few years I’ve been working hard on my professional goals and trying to advance my career in public education. I’ve done everything “by the book.” I’ve done the course work. I’ve passed the tests. I’ve done absolutely everything that I can do, even so far as having my research published in an educational administrative journal. And I’ve hit the wall over and over again.

Each time I’ve hit the wall, I’ve reevaluated. I’ve asked myself hard questions and I’ve learned important lessons.

But this weekend, after soul-searching after yet another difficult wall, I realized that I’m going after my goals in a traditional approach.. the accepted approach… the textbook approach.

And you know what?

The textbook approach has NEVER worked for me.

My dad has often laughingly said that I created my own degree plans in college and created my own jobs. And you know what? I have. Why? Because I had to in order to survive.

But during the last few years, with a good job and some, what I thought were attainable goals, I forgot that I don’t fit the box that others want. I gave absolutely everything I had to doing what was expected, traditional and allowed.

And I found that not only does that not work for me, I didn’t get the promotions that I worked so hard for. And I really want to give up.

But I’m not.

I didn’t learn to finally read fluently in fourth grade for nothing!

Traditional approaches to education didn’t work for me as a child. My path to reading and basic math was HARD and I have the elementary report cards to prove it. The four C’s I got in second grade on the second marking period were disappointing. Staying in at recess in third grade so that I could figure out math problems wasn’t fun. Having to read into a tape recorder at night and play it back and listen to myself read the words wasn’t easy. But I did it. And I learned to read and I passed my math classes.

Everyday I could have given up. But I didn’t. My brand of gifted (remembering pretty much every room I’ve ever been in, including the orientation of the bed compared the window for every room I’ve slept in for the last 40 years..) doesn’t make the standard list of gifted and talent attributes.

What I learned is that I have to fight for myself and be willing to take the path full of rocks. The path full of rocks is often lonely, its tough and you are destined to get scrapped up along the way. But it is worth it, because the view from the peak is incredible.

So that’s what I am going to do.

I’m setting out on my own path. It’s not a path of manicured grass with a pretty pond. It’s a path of rocks and I’m going to conquer it.

Watch out world.