I’m on a treasure hunt. I’m looking for beauty in the every day. I’m searching out and documenting the fun in the normal, the ordinary, the forgotten.
I’m hoping that I’ll get a chance to draw or paint a few of these eventually.
Over the last two days I’ve had the opportunity to attend an incredible teacher training called iChampion Summit at Tarleton State University. The school district that I work for is a partner in presenting this conference and it truly is a worthwhile event! Heck if you attend, you could even see me present a workshop or two. 🙂
The keynote speakers challenge and engage.
But this post isn’t about the incredible things that these speakers are asking us to do.
Instead, I am just going to be real for a minute and while some might label me an “awfulizer,” I’d tell Jimmy Casas (the really good keynote who had awfulizer as a slide..) that until we can talk about Education’s Greatest Thief, then we can’t really move forward.
And what is Education’s Greatest Thief?
Think about it.
We all have stories of bitter teachers. In all likelihood we have all commented on that bitter teacher and how he/she needed to retire ten years ago.
But have you ever stopped to wonder about the generations of bitter students, much less the teachers!!
And why do we have so many bitter people in and around education?
And in education we don’t talk about unfulfilled expectations nor do we acknowledge justified disappointments. We are just supposed to pretend that everything is fine and that leads to bitterness.
No! I’m not saying everyone is bitter.. but I am saying that until we are ready to have a conversation about the reality of education and the challenges that students and teachers face in the classroom on a daily basis, we will always have unfulfilled expectations and justified disappointment.
I feel so passionately about this, I’ve made a little video. If you feel so inclined, I ask you to watch my video and join the discussion.
And yes, I completely messed up the title of my new favorite book.. It’s called The Gifts of Imperfection.
Comments appreciated. Haters not so much.
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.
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.
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!
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.
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!
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.
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!
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.
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!
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.
If 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!!
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!
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.
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!
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. 🙂
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.
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.
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.
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.
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..
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.
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.
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.
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!