Category: family

Parenting the Twice Exceptional: Finding our way in an autistic, gifted, and learning disabled world

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Parenting is complicated no matter the ability, disability, or ‘normal.’ After almost 21 years of parenting, I feel like I can say that with some authority. But this post isn’t about how well we have done; this post is a little woe is me and a lot of brain dumping as I need a place to process, and there doesn’t seem to be much for parents in a world like mine. It’s sad because I know there have to be many parents raising children like my girls, but there are so few resources and no tangible help.

To begin, I have always known that my girls were on the spectrum. I taught public school for almost 25 years and taught every age, stage, and development level. It didn’t matter that the schools didn’t recognize their uniqueness. My husband, Doug, and I did, and we managed. The schools did recognize the girl’s giftedness, almost immediately, but would not acknowledge their disabilities. It wasn’t a surprise. The girls functioned at school and passed their classes, and seemed fine. In parent/teacher meetings, their unique abilities were always dismissed as “quirky” or some other cute descriptor.

And so we were always at an impasse. What we saw (and see) at home and what we knew to be true has been a different world than what was on display at school and what the teachers were trained to see. And let me be clear, I do not fault the teachers at all. Unless you are a special education teacher, you do not have autism and learning disabilities training beyond the “big ones” like Dyslexia. Even then, it is a crapshoot at best. But what has bugged me the absolute most over the last couple of decades is that since the educational system itself does not know what to do with twice-exceptional (2e or 2E) kids, they ignore their needs and pretend like there isn’t an educational obligation to reach these kids. 

But there is one. If the goal of education is that all students work at their ability, then ignoring the needs of twice-exceptional students is a failure. The safeguards for special education students are ignored for twice-exceptional kids; worse, twice-exceptional kids like mine can’t even get an authentic evaluation! Instead of offering evaluation and services, we have been told time after time that our girls didn’t need anything (since they passed the state grade level tests at the highest level..) and that we needed to adjust our expectations. We have literally had to threaten legal action to get 504 evaluations and meetings, even though we had documented medical expert advice.

So what do we do? 

We walk on a tightrope covered in eggshells buffeted by swirling winds. Okay, I’m dramatic. But dang, I am tired. Every day is different. As a medical mama for almost 21 years, I know that life. I learned early what Maddie’s medical signals were and knew how to fight, when to step in, why she was struggling, and where to take her for help. But understanding the world of autism and learning disabilities, autism and anxiety, autism and ADHD, autism and depression, to put it mildly, is different. One of the best blogs on 2E kids I’ve read discusses how twice-exceptional kids are developmentally asynchronous. This is the absolute truth. Asynchronous development means that intellectual development is at one place while the social-emotional level is at another place. The greater the disparity, the harder it is to find a balanced approach to life (and parenting)! 

My youngest daughter, Kylie who is eleven is a great example of this. In kindergarten she was tested for the gifted program. She scored one of the highest scores the district had seen for her age. But she refused to participate in any game, circle or classroom group activity whenever possible. She learned to read at some point before pre-k, (I don’t know when, has she always read?), has a memory in the 99th percentile, but she has a slow processing speed and a disability in math. From an educational standpoint, when I pushed to have her evaluated for autism, I was told that since she was passing all of her classes and wasn’t a discipline problem, there wasn’t a need. When I took the test results in and demanded that she have a 504 because the math homework load was causing nightly meltdowns, screaming fits and horrible evenings, the math teacher was shocked. She “seemed to be fine in class.”

And that is our greatest struggle.

Just because the world sees a child/teenager that seems to be fine, doesn’t mean that is the reality. What we have learned in the last couple of decades is that when kids like ours feel so deeply and process everything in such detail, that they have to have a chance for it to come out at night. And guess what? That means the parents get the junk. I am so thankful that we are a safe place for our girls to process life with, but I’m tired.

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I’m not writing this for your sympathy or trying to sound like a martyr. Raising our girls is an amazing experience, a joy, and a privilege. But it is hard. And 95% of that hard is never seen.

So a glimpse into our world. 

Obsessions have included:

  • A three year fixation on the Fibonacci sequence, hand written in a notebook out to the quadrillions.. or maybe it was the septillions.
  • Reading and AR points, earning over 100 in a single six weeks (in 3rd grade!)
  • Building things out of hot glue and cardboard
  • Money. The counting, the saving, the considering, the wondering… on and on. But no real understanding of how money works.
  • Television series, movies made by the same actress, movies in the same genre

Refusals have included:

  • Will not attend anything without mom/dad/sisters there, will not stay at an event without said family, will not spend the night anywhere without said family
  • Took a zero on AR for a grading period because she didn’t want to test on a book that she had read 
  • Would not complete a project because it would come with a public award
  • Will not take a class that would enjoy because others might see/know
  • Will not participate in a group activity.. but refuses one on one lessons as well

Daily issues have included:

  • Autoimmune disease and autoinflammatory responses
  • Food sensitivity/allergies
  • Extreme, yet inconsistent, food aversions and limited meal options
  • Textures, noise and stimulation
  • Shredding paper
  • Not having an awareness of bodily needs such as being hungry or needing to use the restroom
  • Crippling anxiety

And these are the easy and simple things.

I don’t wish for my girls to be any different than they are. I love them, their quirks, their passions and their ideals. But along the way, if anyone could have welcomed us into this crazy twice exceptional.. okay THRICE exceptional world, it would have been nice. Autism Spectrum Disorder is not so unheard of these days, but most diagnosis information is based on how ASD presents in boys. Therefore, our twice (thrice) exceptional girls are rare!

Research articles should you be interested in reading more:

2nd November Spotlight: Andrea’s Photos and her Hair

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Andrea McDonald has been a friend of mine for I guess almost 17 years. She’s one of those dynamos that conquers anything she decides to do. I chose her for a shoutout because she has an amazing photography business that she built from the ground up.. and then decided to start a side-gig as well!

Dang.

So first I have to say, if you live within a couple of hours of Fort Worth/Dallas and need amazing photos, you should use Andrea. The pics that she has taken of my family are incredible. Her business is called Rooted in Love Photography. The url is rootedinlovephoto.com

These are of our family in 2016. Wow. I’m going to have to start saving for some new family pics. The investment is .Worth. it.

But these days I’m all about her hair product business! A few years ago, Andrea started using and promoting Monat hair products. I joined her facebook group and have watched her hair transform. Well, I last month, I decided that my hair had to have help. So I messaged Andrea and got started.

Andrea’s Monat business link is https://andreamcdonald.mymonat.com/shop/

Here are my in progress pics.

Ugh. My hair looks so dry and straw-like.
Day One. My hair is so soft.
One Month. Wow, I can already tell the difference!!

I can’t wait to see how amazing my hair is going to look in a year!

To answer your question. Yes, the products are expensive. But you only use a tiny bit at a time. And here is the biggest thing besides my hair looks SO MUCH BETTER… I don’t have to wash my hair all the time anymore. For the first time in my life, I can go 3 or 4 days between washings and even bigger, I don’t have to wash my hair after running! OMG. Not washing my hair and blow drying it and flat ironing it every morning is huge!

So there you have it. If you need photographs or great hair products, give Andrea a shout. Have a great week!

A Trip of a Lifetime

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Over the first week of June, Doug and I went to London for our 20th Anniversary trip. It was amazing, wonderful and every sort of adjective that you can think of! We ate incredible food, we visited all of the tourist spots and we walked at least 60 miles.

Traveling with Doug is fun. We get along really well and rarely get cross with each other. After 20 years of marriage, we complement each other perfectly and I don’t take it for granted!

One of the best parts of the trip was our day trip to Grantham and Cambridge. When I was in college, I spent the fall semester of my junior year at Harlaxton College in Grantham, England. That semester taught me how to be a traveler, how to navigate through foreign countries and handle myself in places where English isn’t the primary language. That semester abroad gave me wings for my future.

I’ve always looked to the Fall of 1995 as a special time and I wondered if the reality of Harlaxton would live up to my memories. Well, on Saturday, June 8th I got to take Doug to see Harlaxton. And it was everything I remembered and more.

After spending the morning in Grantham we took a train to Cambridge and joined throngs of tourists walking the streets of Cambridge and gawking at the schools and churches. Cambridge is an incredible city. The highlight of the afternoon was going to Evensong in the Chapel at Kings College. As a couple, Doug and I have spent many, many hours inside churches, but we have never been able to experience something like this together! Even better, because we were quiet, reverent and patient when we entered, we got the absolute best seats!! We sat directly across the aisle from the choir and facing the officiating preacher. It was amazing! The image below is one from the internet as they don’t allow photographs inside the chapel.

Sitting next to Doug and reciting the Lord’s Prayer and participating in other liturgical aspects of the service with him was something that I will cherish always.

The entire trip was really a trip of a lifetime. We did so many incredibly amazing things.

I could go on and on, but I’ll stop here… Betsy, Greg and Chelsea with Euro Travel Coach made our trip happen. Months and months before the trip I started asking Betsy questions about how to make this trip the best possible trip. After consideration and thought, I went ahead and booked their Custom Itinerary Planning Plus. It was expensive, but OH SO WORTH IT! Euro Travel Coach asked questions, listened and then booked everything for us from the hotel to Wicked tickets to train tickets to numerous meal reservations. I did nothing! It was awesome. For a control freak like me, that was hard to let go, but dang, they took care of every detail of the trip. So if you are considering a vacation in Europe, you should totally check Euro Travel Coach out. (and NOPE, no kickbacks are coming to me for this advertisement!)

At the end of the day, I loved every moment of this trip. The almost 40 hour trip home because of mechanical problems on the airplane can’t even diminish my joy. Here is to hoping that we don’t have to go another 20 before going to see where Doug spent a semester of his college experience! I just hope the Euro Travel Coach has expanded to Brazil by then! 🙂

Pessimistically Hopeful

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Pessimistically Hopeful.

That’s what I’m feeling today. About a lot of things, but maybe that is really the way I’m describing my life right now.

I’m pessimistically hopeful because there are potentially some good and great things on the horizon, but when you add the real dose of life experience to that hope, I’m pessimistically hopeful at best.

To start, I’m using these pictures of this spiny cactus to remind myself that sometimes life emerges from the unexpected and thought dead. You see, we bought this spiny cactus last summer at a farmer’s market and it lived in its plastic container for almost a year sitting on the edge of the flowerbed, not planted..it was forgotten although I walked by it at least once a day and regularly thought we should plant it.. but I didn’t. Through the winter and into the spring it looked dead. I figured the couple of hard freezes had gotten during the winter must have killed it.

Finally, a few weeks ago, Doug planted it in our front bed. It was listless and couldn’t remain upright without a support. Doug put the old decorative fence piece next to it and let it lean on it. A few of the sections fell off immediately and it looked sad. Dead.

But it wasn’t.

The rain, the sun and nutrients from the ground has brought it to life. The once sad looking plant is beautiful and healthy and bringing forth amazing flowers.

And so, I’m reminding myself that sometimes life does actually deliver on the potential and possibilities. I know that sounds incredibly jaded and sad. But dang, the last decade has had some really tough lessons and lingering issues were the answers were never given and the dreams and goals never reached.

But today, I’m enjoying the beauty of the flowers and praying for that same gift for Maddie’s feet.

Yesterday we met with a new doctor, Maddie’s 31st specialist. We were never actually suppossed to see him. It was an incredibly strange set of events that got us to this Neurologist over five hours away. He was kind, and interested. He was caring and deliberate. And more than anything, he listened, he looked and he took his time. In fact, the appointment was at 10am and he spent an hour talking with us and then asked if we could come back at 2pm for testing. We did and after another almost hour of working with Maddie he gave us hope.

Maddie has been wearing AFO braces on both feet for almost a year after spending much of the previous year wearing walking boots on one or both feet when one day her feet just stopped working.

She has had every test imaginable and all come back normal. There has been no explainable reason for her feet not working. But Dr. Martin yesterday said, there is ALWAYS a reason, we just have to find it.

And he might have.

So Maddie will start physical therapy and has a plan and a goal.

More than that, we left hopeful and not defeated. Over the last dozen years, we have left defeated, disheartened and discouraged time after time from specialists. We either left with no hope or were treated dismissively as Maddie is a “complicated case.”

But yesterday, we were treated with care and dignity.

And so, I’m pessimistically hopeful.

I pray with my entire being that just like the cactus that has flowers blooming despite everything, Maddie will return to college in the fall being able to regular shoes some of the time and will eventually be free from the AFO braces. I pray that her body will grow strong. I pray that she will continue to bloom, just like she always has, despite the struggles that are put in her path.

My Enneagram Results

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The last few months have been a season of self-growth and self-reflection. I have found it to be an interesting and rewarding time. Not necessarily easy, but an incredibly worthwhile effort. After years and years of taking classes, earning degrees and becoming the best teacher that I can be, I decided that it was time just to focus on being the best ME that I could be. For an achiever and goal-oriented person, this was difficult as there is no measure of ME and for/against ME that I can use.

Along the way I read about the Enneagram Type Indicator. This test is a personality test, but it’s more than that. I really enjoyed taking the process. I took the Riso-Hudson Enneagram Type Indicator online at the Enneagram Institute. I chose the long test as would by my norm. If you are going to do something, go all in!

My results overview were that I scored highest on The Challenger, then second was The Achiever, and third was The Enthusiast. No shock!

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But what I really enjoyed reading was the report that came with the test. The report gave insight to my strengths and described me when I am at my best. It also talks about how I view and handle relationships, who I am most compatible with based on enneagram type and how I can work on all relationships from this framework.

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One of the take-aways for me after reading the report is that I felt acknowledged. Yes, I know it’s a weird word to use for a generic report from an institute that has never met me, but yes, acknowledged! My frustrations with my job and career path isn’t a bad thing, nor does it mean that I’m not doing my job to my best of ability. What is means is that YES, I was created for more and I will feel frustrated and stifled as long as I am not being given opportunities for growth and leadership.

Oh how I wish organizations would use personality inventories like this to help make decisions about employees career opportunities and growth potential.  After twenty years in public education, I can say without a doubt, if a type description like the Enneagram was used appropriately for job placement, everyone would benefit. Teachers like myself with challenger and achiever personalities would be given leadership roles and administrators with personalities that don’t lend themselves to leadership would be able to look at themselves and be able to overcome their weaknesses by creating the right team.

At the end of the day, I’ve been both in the right place and worked for people in the right place and have been in the wrong place and worked for people in the wrong place. What inspires me is about Enneagram is that I can look at myself and others in the wrong place and find ways to thrive despite the circumstance. I know that after reading the nine types, I am looking at others and myself from a place of understanding and not from frustration. And that is worth gold.

Equal Parts Pride and Sorrow

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A couple of weeks ago we took Maddie to college. It was truly the hardest thing I have ever done. Yes, she was ready. Yes, we knew it was coming. But still, it was harder than I imagined. Maybe because she is our first. Maybe because she has so many health challenges. But no matter, it was not easy.

Here she is at Texas Woman’s University. She moved in a day before the rest of the dorm because we had to thoroughly clean her room and we knew that with twenty floors of students moving in all at once, Maddie would not be able to navigate through the crowds nor have a place to park!

When we got upstairs to her room, there was a comedy of errors as the leadership was using her room for training (you know, since no one was moving in yet..) But they quickly cleared out and bonus for us, they now knew that she was there!

Maddie’s room is on the 4th floor and the view is incredible! I’m so thankful that she has big windows and looks out onto a green space and the chapel.IMG_8478

We cleaned and shopped and decorated her room. Every once in a while I’d just have to stop and take a deep breath. With every placement of a picture or decorative item, I knew we were one step closer to leaving.

 

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Maddie requested that we not cry at the dorm. So, we went out for ice cream before we left. Smart? Maybe. Or Big mistake. I’m not sure.

We really did okay.. until Kylie realized that it was time to go. Watching your baby say goodbye to her sister. Dang. That was brutal.

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And then Maddie had to turn and walk away in one direction and we turned and walked in the other direction to the car. I felt like my heart was being ripped out. No, I’m not being dramatic. It was that hard.

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Doug drove home and I cried. I wanted to turn around and go back for her. But we didn’t.

Maddie is doing great and making friends. So far, her health is good. My prayer is that she gets truly settled in school and has bonded with her professors before her first relapse. Not seeing her everyday is hard. I can’t look at her face and see how her body is holding up. I can’t hold her hand or touch her shoulder. I’m not there to offer a piece of pumpkin bread or run get her a snack.  It sucks.

And that is why sending my child off to college was equal parts pride and sorrow!

Tips for Families with Special Needs on Enjoying Disney World

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Disney World is a place of magic and wonder. Sure, it’s also incredibly expensive and crowded and hot… but those things just don’t seem to matter when you are standing in front of the castle at Magic Kingdom!

There is something so incredible about being at Disney World and the feeling of expectation and fun and hope. I don’t know if everyone feels it, but as a family that has lived in the world of doctor visits, special diets and treatments, diagnostic tests and rare diseases for the last 18 years, Disney World gives us a chance to live and love and laugh “just like everyone else.”

No, the problems that we face everyday don’t vanish on Disney time. But the problems just don’t seem so big or so hard. Instead of researching unknowns and sitting for hours in doctor’s offices, we research which restaurant to eat at and how to get the most out of “magic hours.”

So here are a few tips for families with special challenges from a seasoned Disney family! Truly… we just returned from Disney for the 5th time in 6 years.

  1. Plan early!

    We typically use a travel agent (Cowboy Way Travel) because they know us and know our needs. But Disney online and over the phone work great as well. I’ve just found that for our needs (two connecting rooms with ground floor access and a scooter), the travel agent can take care of everything and it works. And since we use a travel agent, we also purchase trip insurance. EVERY. TIME. It’s worth the cost.

    Also, by planning early you can make the best use of the early reservations for meals and fast passes. We are talking making plans 180 days out for dining and 60 for rides/attractions!! I know the needs of my family and waiting till the last minute to plan a trip means that you miss out on the best times for rides and meals.

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  2. It’s not an adjoining room.. it’s a CONNECTING room!

    Even as seasoned veterans, when we got to our rooms we found that we had rooms next door to each other, but not connecting! Uh Oh. This doesn’t work with an 8 year old! Disney defines adjoining as touching and adjacent as near by.. if you need the rooms to be able to open inside to each other, you need a CONNECTING room. Our rooms situation was easily remedied, but it’s an important distinction to keep in mind as at peak times you might not get a connecting room if you asked for an adjoining room!

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    Rooms at Riverside

  3. Speak up!!

    When you run into an issue, SPEAK UP! Give Disney a chance to fix the problem.
    One night when we ended up in a monsoon and the bus driver was horrible, we spoke up. Why? Because Disney cares and they work too hard for a bad experience to color the rest of the trip. Taking the time to talk calmly with the concierge allowed us to express our frustration and gave Disney the chance to make it a positive.

  4. If you need the disability access, USE IT!

    But, remember to take ALL of your family’s magic bands with you when you set up access at guest services. You only have to do this once each trip as the disability information is in the magic band. Also, once it is set up, any member of the party can “badge in” and request disability access to a ride/attraction. The key here is to manage your disability access as you can only have one outstanding at a time! The gift of disability access is that you don’t stand in line. It doesn’t make the wait go away, so plan accordingly! We know that we can’t wait in the heat/sun, so we go to shows while we wait for the next attraction.

    And if you haven’t seen Festival of the Lion King, it is WORTH IT!

  5. Plan down time.

    One of the hardest things for me to do is “waste” daylight at Disney, but I’ve learned that in order for Maddie to function for the duration of a trip, she has to have down time. So while the big girls napped, Kylie lived it up at the pool and the playground. Port Orleans Resort has great pools and a fantastic playground. Side note: besides being more spread out, Port Orleans is great for families as the rooms are larger, the place quieter and the amenities spot on.
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  6. Expect to wait for a bus.

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    Hands down, the most UNmagical thing about Disney is waiting for the bus to transport you from park to park or park to resort. If you are in a wheelchair or scooter, the wait can be a while as they only take one or two chairs on each bus. Sometimes these waits are in the rain and sometimes these waits can be an hour (or longer!). Plan for at least a 40 minute wait and then be pleasantly surprised every time you arrive at your hub and find a bus on its way in!

  7. Take your own ponchos and an extra pair of shoes!

    In case you didn’t know.. it rains in Florida. Plan on getting rained on.

    The ponchos at Disney are expensive and tear super easily. We purchase our own ponchos that are heavier plastic and bring them with us! Also, since Maddie uses a scooter, she gets a larger poncho that will fit over the scooter so that she can drive it and stay dryish.
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    Bring an extra pair of shoes.. or be like me and spend an hour sitting in the laundry room holding the door to the dryer closed with your back!
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  8. Find the accessible areas for watching the parades.

    Parades are really cool to watch. Unless you are in a scooter/wheelchair.  Find the accessible areas for watching the parades and take a seat on the curb. It was so fun to watch the girls watch the parade. We are big fans of the Fantasy Parade as it is at 3pm in the afternoon at Magic Kingdom and we can see that one. It just doesn’t matter how late of a start we get, we can’t make it to a firework or evening show as a family. When the sun goes down, my family fades fast.

  9. Ask to speak to the chef.

    IMG_2333If you have special dietary needs, Disney can’t be beat!

    We really wanted to eat at Be Our Guest.. I mean really, who doesn’t want to eat at Belle’s Castle?! But the menu options were not great for Lexi and Maddie who can’t have the normal breakfast items!  So we special ordered off the quick service menu and the chef came out and asked us a few questions and then like magic breakfasts for both girls appeared that were egg and milk free!  And it’s not just this one restaurant, it’s all of the Disney restaurants!!

  10. Make sure the other kids don’t get left out in the process.

With so much of what we do and who we are as a family focused on keeping Maddie well, our other girls get lost in the shuffle. Disney is a place for magic for them as we are able to devote special moments and memories for the girls by themselves.

Magic hours have become our special one-on-one times and are truly those magical memories that get us through some of the hard spots throughout the year.

Lexi and I stayed at Magic Kingdom until almost 2am one night!

And Kylie and I snuck away in the afternoon to Epcot one day and then Hollywood Studios one morning. Spending time with one child is so different than with the group!

I truly have so much more to say, but I’m thinking just this is overwhelming. So I’ll leave you with GO! Just Go for it. I know it’s expensive. But we spend SO MUCH MONEY on healthcare that we have to spend some on our emotional health and our family too.

I commented the other day to the girls and Doug that as we move into the next phase of our lives I don’t know that we will go to Disney as often. Lexi and Kylie were very quick to speak up and say that Yes, we will be back soon!

14th Annual Family Lakehouse Adventure

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The 2018 Maxwell Lakehouse Adventure was in my opinion the best of the 14 we have had so far! I think a lot of it has to do with the fact that my children are old enough to just play and enjoy their cousins and I can sit and observe them and am not constantly doing the mom thing. With all of my free time, I took 413 pictures from 4pm Friday to 4pm Sunday…. that’s a lot of pictures! I can’t help it, my family is rather engaging.

Here is a glimpse of our weekend at Cedar Creek Lake.

The overview

  • 23 people
  • 3 generations
  • Youngest child.. Jake at almost 5 months
  • One 4 bedroom, 2 bath house with a perfect backyard, fantastic lake access and deep water.

 

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Our group picture is one of the highlights each year and this year with everyone wearing the shirts that Dad and I screenprinted made it even better!

The fishing was pretty bad. In fact, Kylie was the only one that caught a fish. But these “little middle” cousins are adorable!

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Jumping off the dock was an absolute highlight. With really deep water at the end of the dock, everyone could run and jump, twist, flop and cannonball to exhaustion.

Kylie and Nora both love tattoos. Uncle Mike allowed them to put as many tattoos on his back as they wanted. I don’t think he planned on them using entire sheets all at once… including the trademark information!! They had a ball. I love to hear their sweet giggles.

Lexi and Dillon, our “middles” bought fireworks with their own money and gave us a great firework show! We didn’t grow up around fireworks so I was leery, but they were great and with uncles and adult cousins around to supervise it, I was thrilled for Lexi to share in this new experience.

Lots of corn hole was played along with some badminton and other games.

The house came with three kayaks. This was PERFECT!!

And then there was baby Jake. Oh my. That boy is the sweetest and happiest baby ever.

There was so much more, but I’ve already made this a very slow loading post I’m sure! But I’ll end with a few pictures from my favorite spot… the chairs in the yard. The breeze, the family, the view of the lake and my family. It was great. My dad and I very much enjoyed our time in these chairs just watching those we love play and laugh together.

So until next year, I’ll leave you with one more picture of lakehouse #14.. cause #15 is going to be EPIC. 🙂

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Rebuking the Lie

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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.

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

Published on by EmilyMaxwellMcLemore2 Comments

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.