Leader in Waiting

Waiting is hard. We all know that. It’s especially difficult when the waiting is personal. It seems like I’ve been waiting for a chance to be an educational leader for twenty years. The reality is that I haven’t been waiting “that” long, it’s just hard when I know that I have so much to offer and my skills aren’t being utilized equal to my potential.

Nevertheless, I’ve been adding to my education and my resume. I may not be an administrator yet, but I’ve completed my Superintendency certificate.

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I’ve also written another play and have a research article accepted for publication.

One of my friends recently posted a question on her social media feed that I have been pondering.. “How long do you knock on a door before you accept that it is closed?”

I have to say, I can’t help but wonder if the same applies to me. By no means am I going to give up my dream to be a leader. I don’t have to… I AM A LEADER. But the reality might be that being an educational leader might have me leading and serving in an area that I didn’t plan or expect.

And isn’t that the sum of life. So much of our life happens in the waiting. I can chose to be bitter about the fact that the “fast-track” to administration has never included me. Instead, I’m choosing to learn more, reinvent myself and ultimately, I will be a stronger leader.

 

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Primary Immunodeficiency

Saturday afternoon as I sorted the mail, I wasn’t expecting a sucker punch. But I got one. There in a seemingly innocent receipt from one of our specialists was a new diagnosis for my daughter. No explanation. No preparation. Nothing. It was just listed there between Unspecified asthma and Other allergic rhinitis like a harmless friend.

But its not.  In fact, nine vials of blood were sent to the Medical College of Wisconsin (the only center in the country to run the incredibly specialized tests that she had to have) last spring to see if maybe we might have some answers. And we were told no. That the tests were inconclusive and that we should just stay our course and not change treatment.

And then bam. There in black and white and insurance codes was D83.0…  that’s Common Variable immunodeficiency with predominant abnormalities of B-cell numbers and function .. for those untrained in insurance codes.

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Guys, that’s a primary immunodeficiency and we are smack dab in the middle of a horrible flu season and my child is getting no preventative or precautionary medical treatment.

I am RUNNING SCARED!

You would think by now I’d be use to this kind of crap.

I’ve been a parent of a sick child with rare diseases for eighteen years.

But I’m still scared.

Tonight as we face the week ahead, all I can do is pray for my sweet resilient daughter and pray for her protection. Her incredibly complex medical picture makes easy answers and typical protocols not work for her.

So please you guys out there.. if you are feeling achy, tired and run down, do me a favor and stay far, far away from my girl. I desperately want to keep her home the next couple of weeks, but that isn’t possible. We joked tonight, as we have many, many times over the years about needing to get her a bubble.

Tonight my laugh was brittle.

Definitive Choices

IMG_0456How often do we choose to live in the land of the wishy washy choice so that we don’t have to go all in on something? I know that I do it. And I’m an “all in” personality.. Big time! But there are areas of my life that I need to be reminded to “go big or go home.”

Over the last two days, I had the privilege to work with a number of  high school one act play casts from the surrounding area as they prepare for competition. During this time, I found myself repeating quite a few concepts over and over to each cast. One of those was to make concrete choices and get rid of the wishy washy decisions.  It is early in their production cycle, so many of the notes I gave were quite useable (I hope!) as they have time to truly process what I said and then choose to use my thoughts or ignore them.

This got me thinking about decision making it in terms of real life.  I personally love making a decision and then going headfirst into a new adventure. I know that scares some. It invigorates me! My problem typically isn’t starting, it’s finishing.  Nevertheless, there are a number of areas in my life where I need to reevaluate my choices.

There have been times that I have chosen to go headfirst down a wishy washy path purposefully forsaking the definitive choice. Sadly, I see that and realize that the window for the definitive choice has passed me by in some areas. Knowing this, I desperately want to stop, and take the advice of business man, Brian Buffini:

“While there is a time to think about a solution, reflect on it and gather feedback from others, there comes a time when you have to forget about input from other people. Be confident in your choices, and stick by them.”

2017 By The Numbers

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450 Hours Sweating, 100 Kid’s Performances, 80 Doctor Visits, 40 College Hours, 25 Paged Play in Production,  20 Boarding Passes, 10 Radiology Reports, 4 State Parks Hiked,
3 Medical Walking Boots, 2 Surgeries and 1 Very Active and Tired Family.

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2017 was a busy year.

As I sit on my couch almost dizzy from the congestion in my head, I’m going to use this “down time” to wrap up the year! I so wanted to send out cards and a letter. I love getting cards in the mail. But I gave up. I can’t do it all… as much as I like to and think I can most days!

Anyway..

Wrapping up the year mentally has been fun. Doug and I talked through the highlights and the struggles. We know we are busy, but when you put the numbers to the activities that we do on a regular basis, it is mind boggling! No wonder my house is always messy and that there are 3 baskets of clean clothes in my living room on any given day!

So let’s start at the top of the recap:

  • 450 Hours Sweating: Doug and I make working out a priority. Most days it’s an early 4:30am start, but it is worth it for our sanity!
  • 100 Kid’s Performances: This is literally the tip of the iceberg as for every performance or contest there are double or triple the number of rehearsals and practices that we have attended.
  • 80 Doctor Visits: I’d like to say that this year was an exception and that we don’t usually see the doctor this often. I wish. Some years we have more than 100 visits. Granted, Lexi has seen the doctor way more this fall than ever and Maddie was healthier, but the sum total is in our “normal” range.
  • 40 College Hours: I completed my Superintendent’s Certification in 2017 (18 graduate hours) and Maddie completed 22 hours of college credit spending the summer before her senior year of high school as a full time college student!
  • 25 Paged Play in Production: I wrote a play this year. It’s called Unexpected Hope and it is in production! I can’t wait to see Stephenville High School perform it for their UIL competition this spring.
  • 20 Boarding Passes: Traveling is something that Doug and I love to do and we are teaching our children to enjoy. In 2017 as a family we went to Disney World and Doug and I went to Mexico and San Fransisco. Doug also travel on his own for work to St. Louis.
  • 10 Radiology Reports: Dang. Four MRI’s (two each for Maddie and Lexi), a CAT Scan for Doug, plus numerous x-rays as Lexi broke three bones this year, Doug broke one and Maddie, well, she’s Maddie.
  • 4 State Parks Hiked: In the midst of chaos, we love to get outside. We are firm believers in forced family fun in all it’s glory in the middle of nowhere and no technology!
  • 3 Medical Walking Boots: yeah. Doug, Maddie and Lexi.
  • 2 Surgeries: Doug and Maddie.
  • 1 Very Active and Tired Family

And there you have it. I’m looking forward to 2018. We have lots of plans and major life events coming up. Maybe we will get through 2018 with fewer doctor visits and bills! Wouldn’t that be a dream come true. Nevertheless, we know that no matter how few or how many medical related issues, our priority remains to…

Live BIG, Dream BIG and Love BIG.

No wonder I don’t have my Christmas Cards ready to mail!

I’m sitting on my couch drinking my second cup of coffee and enjoying a Christmas cookie for breakfast. I thought about getting up and going to work out… but it is the first day of Christmas break and I’m going to just enjoy a few minutes of peace instead. Well, it’s peace-ish..Kylie has already been up for an hour and a half and is talking to me. It’s only 7:30am.

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I had the best intentions of doing more blogging this fall and I really wanted to get Christmas cards made and sent out.. but life has been BUSY! I realize that is always my excuse, but it’s the truth!!

So instead of recording experiences and prepping cards, I’ll just hit the highlights since my last post.

Lexi turned 13!! We had a family party and then she and three friends spent the night at a hotel with an indoor pool and had a blast. I had an adjoining room and one of my friends came over and scrapbooked with me! It was a fun party.

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Doug turned 50!! I surprised him with a trip to San Francisco. We loved it!! I need to blog about our trip…

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We hosted our family Thanksgiving. We learned how to make dressing and played outside. We had a great day of just being together.

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Kylie was in her fall safari themed musical at school. She made her own ears. She is not just creative, but she makes useable items as well. Super cool.

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Lexi auditioned for Junior High All Region Band and made it! So proud of her. It is rather hard to bring home your french horn and practice when you have been on crutches for a few months!IMG_0961

Lexi broke her right ankle the first weekend of September. She has been either on crutches with a cast/boot or in a boot for more than three months. Another MRI was done this week and she sees the doctor the day after Christmas to reevaluate. This is some slow healing.

Then in mid November, Maddie experienced a 50% foot drop. For no reason at all. Just one day her right foot decided to not work. The doctor said that it is a reality of her autoimmune disease. These things will just happen. So she is in a boot until the nerves in her right leg decide to work again. Yes, that means we have two red hair beauties that are almost the same size in right boots. Yes, we stop traffic!

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Kylie got her first pedicure. Our lives are so very busy with Almost Adult 1 and Teen 2 that Child 3 gets shuffled back and forth and back and forth. It was nice to just chill and do something with Kylie that wasn’t school related.

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We decorated for Christmas.

We watched Maddie at the Yellow Jacket Football games. Our football team advanced in playoffs to be part of the final four. It was so cool to watch Maddie and the band perform at AT&T Stadium (Home of the Dallas Cowboys). Yes, Maddie performed each week in a boot!

Kylie got her braces off.

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Lexi and Maddie both had band Christmas concerts.

Kylie saw Santa

Doug and I saw Santa after we ran a local 5k…

We had Maddie’s senior pictures taken. They are amazing and I can’t decide which ones to buy.. and the reality of her growing up and leaving home is setting in…

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And I finished my Superintendency Internship! Along with everything else in our lives! I recorded over 150 minutes of video evidence of me presenting to organizations and/or interviewing district administrators about school districts, I documented over 150 hours of research and service within our district, completed the course work that accompanied the internship and I took the certification test and passed! It is so very nice to have this checked off as complete on my list of things to do!

When I look back at the highlights of the last couple of months, it is no wonder I don’t have my Christmas cards ready!!

So there you have it. I’m hopeful that this spring things might not be quite as hectic and I’ll be able to blog more. I also have some goals for the spring. Don’t worry. Nothing big. No new course work for me.. just goals like “make better food choices” and “clean the bathroom”.. things like that.

Thanks for sticking with me and have a great 2017 holiday season!

Transitional Parenting

Transitional Parenting.

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Maddie and Me. Photo by Amanda Akins Photos

That’s the kind of parenting that I am doing right now with my daughter who is a high school senior. Actually, I’m struggling to be a transitional parent as I am so used to being a hands on all the time mom… and still am to my 12 year old and 8 year old… but my high school senior is very ready for me to let go, and let her go.

But oh this is hard.

I’ve heard all of the stories for years. I didn’t doubt them.

But it is different when it is YOUR CHILD!

For the last almost 18 years, my entire world has been wrapped up in keeping Maddie well. Every decision, every plan, every possibility has been weighed against the potential medical response that Maddie might need. I can’t explain it really. Maddie’s medical needs have been an ever present issue. And now, it is terrifying to let go and help her walk away and prepare for college.

And she is doing it.

Maddie applied for college the first weekend applications opened. She was accepted almost immediately.

Maddie has been to a scholar’s preview and has accepted her first scholarship.

Maddie is taking ownership of her scholarship essays and telling me to butt out.

Maddie is ready to take on the world.

Her momma might need some counseling.

It really is amazing how wonderfully Maddie is doing right now. She is the healthiest that she has ever been. She is confident and strong.

These were the days that we prayed for when she was little and things were so scary.

So we are in a time of transition.

May God have grace on parents of high school seniors!

 

 

Rough Creek Trail Run

I ran the Rough Creek 10k Trail Run yesterday. WOW! It was an awesome experience. I’ve never completed a trail run before and I now know that when they say

  • steep ascents and descents for a bit, rolling hills for a while, and flats to open up and run your heart out.
  • well-groomed non-technical trail and rocky, rugged, technical sections too!

They MEAN IT!!

Dang. My calves are sore and the bottoms of my feet are feeling raw from planting on those rocks. I’m going to have to go shoe shopping before next year!

 

I’m proud of my time and place. There were 83 10k people with 51 being female. I came in at 44/83. As is my usual, I’m right in the middle of the pack. In my age group I was 6 out of 23. Not bad.

Now that I know that the course for the 10k is really closer to 7 miles, I will plan better and do more trail running. Okay, so I didn’t do any trail running prior to this, so even one run would result in a better time for next year!

Nonetheless, I had two goals for yesterday. Not fall and finish. I accomplished both!

Experiences of the Exceptionally Average

I’m going to tell you something about myself. I’m average.

There.

I said it.

It’s a relief.

There is something to be said for understanding who you are. This understanding has been earned the hard way.. through blood, sweat and tears.. but I truly appreciate the process and what I have learned about myself.

So here is what I know.

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I’m an average artist.

I’m an average runner.

I’m an average musician.

I’m an average teacher.

I’m an average friend.

I’m an average parent.

I’m average.

And I’m okay with that!

Why? Because being average doesn’t mean I am mediocre. Being average doesn’t mean that I don’t strive on a daily basis to be better or do more. But being average does mean that I have had the opportunity to recognize my strengths and weaknesses and that I am possibly more of a realist than someone who lives life from the front.

I want to share with you some of what I have learned from being thoroughly, completely, fully and even exceptionally average…

  1. It will not be easy.

    Learning to read was hard for me. I continued to work at this long after my peers had mastered reading fluently. I didn’t read well until 4th grade and this ability didn’t come easily. It took lots of repetition and reading aloud, but finally, the light switch was flipped in my brain.

  2. It will not be quick.

    One of the life lessons from the ranks of the average is that you learn perseverance. Be it homework, test preparations, learning a new role/job, or running distance miles, these tasks will take time and repetition.  Today as I plodded down the road contemplating life, I embraced the 11:30 pace that I was “running.” For whatever reason, in this season my running pace is a good two minutes plus slower than my old pace.. and that old pace wasn’t fast! But the grace in being average is that I didn’t give up. If I had once been fast, I would have quit at this pace. But living life in the average lane means that I understand that most things are going to take time!

  3. It will not be seen.

    Unless you are the valedictorian or salutatorian of your graduating class, no one else is going to remember where you sat at graduation!  I graduated number 21 in my class… since I don’t even remember if it was the second or third row… how can I expect anyone else too!

  4. It will not be flashy.

    Life is not made up of paparazzi moments. Life is made up of work and sweat and grit and occasionally, you get to be a photobomber.

But life as an exceptionally average person is not drudgery. We, the average in all things, are incredibly employable!

Why? Because of our experiences in life! When you learn through life experiences that life isn’t easy, quick, seen or flashy.. you learn to find meaning in the process and enjoy the journey!

So here is my advice to all the  “exceptionally average”… embrace it, acknowledge it, and then be empowered to do more.

It’s not just about HAVING an innovator’s mindset, you have to USE it!

I’m reading George Couros’ book, The Innovator’s Mindset.

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I love everything about this book! What I am finding interesting is that even though I have always had an innovator’s mindset and have embraced all that being an innovator entails in both my personal life and as a teacher;  I have not always empowered my student’s to embrace the innovator’s mindset.

As I am reading this book, I am pondering many of the norms in my classroom and in my school and asking myself lots of questions. For example:

  • Why do we have to do ______ a certain way?
  • Why do we come from a place of negativity when it comes to rules and expectations?
  • Why do we expect kids to fail/get in trouble/do things wrong?
  • When are we giving students choices?
  • When are students leading learning?
  • When are we modeling the innovator’s mindset?

All of my questions come back to Couros’ examination of student compliance vs student empowerment. It shames me to think about the fact that even in an artistic environment where students are asked to innovate and create everyday, I have always required compliance! OUCH.

But guess what? I am required to comply everyday as well. I have always hated the posted rules, class room procedures and expectations requirement for “good” classroom management. For years I bucked the system and didn’t post things.. but in order to be an “effective” teacher it was necessary to  post these guidelines.

So I did.

And guess what, students that didn’t comply didn’t care which rule they broke. Students that didn’t behave responsibly didn’t check my posted expectations and procedures to see how they deviated from the posted signs. The only thing that my signage did was to show adults that walked through my class that I had “good classroom management.”

So today I yanked my signs off the wall! These signs take up valuable wall space and I’d rather post positive messages and show off student work! What gave me the courage to take down the warning signs? Well, Couros made me do it!

I want my classroom to be a place of empowerment. I want students to be willing to risk it all and try new things in my space. I want to push students to expand their mindset and become an innovator. And I can’t do that from a place of compliance.

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No, I’m not going to have a free for all in my classroom! I am way to organized and driven for that nonsense! But I need to move past the statements that demand compliance.

Instead, here is one of my new posters…

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So yes, in a way I am still demanding compliance.. but the mindset is different. Instead of requiring that students all put the pencils away the same way or put their name on their papers in the same two inch space on their papers, I am demanding that students imagine. I am demanding that students dream, collaborate and inspire others with their work and their choices.

I can’t wait to see how the shift in mindset frees my students and my own personal creativity. I’m sure it will be wild ride, but I know that it will be worth it.

Open letter to Pediatric Specialists

This week we took my daughter Maddie to a new specialists. This was her 22nd Specialist. Twenty-two times we have sat in a specialist waiting room and have answered countless questions. 22 times. This number doesn’t even include dental/oral specialists, physical therapists, and all the other extra doctors/practitioners we have seen over the years.

We left frustrated.

We left a little more resigned.

We left a little more heartbroken.

So here are my thoughts, not that any specialist will ever see them.. but it makes me feel better to get them on paper. I realize that there are many specialists out there doing a fantastic job and making a huge difference in the lives of children (Dr Wasserman is our hero!) But for every incredible doctor we have seen, we have a handful that have left scars.

Those scars hurt.

And when your whole life is about finding help for your child, having a specialist add to the wound is wrong. I truly don’t believe they realize what they are doing… so here are my wishes and recommendations:

  1. My child has a name.
    Please make an effort to talk TO my child, not at my child. Even better, call her by name! The best way to make a connection is to find a few moments to get to know the patient. I realize that you don’t need a connection, but WE DO!
  2. Read the medical chart before entering the room.
    If we are seeing you, the likelihood is that there is a reason! Please don’t ask us simple questions about diagnosis and referrals, we need to see that you have read the chart and have made an effort. And really, when I have to explain what the primary diagnosis means or how to spell it, how can you expect me to trust anything else that you have to say?
  3. Honor the work that we have made to get here.
    You may not agree with what other doctors have done or said in the past. In fact, you may not see any reason for us being in your office, but please honor the work it has taken to be sitting in your exam room.
  4. Listen
    When you ask a question, listen to the answer. Don’t assume that you already have the answer. We can tell and the best way to get a child to stop answering your questions is to show her that you don’t really care what she has to say.
  5. Don’t discount our experiences
    My child has been sick for 17 years. I have sat in countless doctors offices and have experienced more than you could ever imagine. My daughter is in the 1% club for side effects, allergies, and illnesses. I’ve lived through the fine print! Please, don’t discount our experiences. Just because we don’t describe it exactly how you read it in the textbook doesn’t make it any less valid.
  6. My child is more than a test result and quality of life matters
    I realize that your care is driven by and dependent upon test results, but those things don’t mean much to me. I care about my child and the fact that she is hurting. When tests results mean another dead-end, can you please offer more than “well, at least we have another no..”
  7. Do a thorough examination
    My daughter told you that she had seen 21 other specialists for a reason… She didn’t like your vibe. You then proved it by doing a minimal examination. bummer. You proved you didn’t care right then.
  8. Acknowledge that you don’t have the answers
    After 17 years of consultations and testing, I don’t expect you to have the answers. I pray daily that you do, but I don’t expect you to do so. So instead of brushing off symptoms and clinical observations, acknowledge that you don’t know what to do! We will honor that and invite you to join the journey.
  9. Imagine life in our shoes.
    I’m guessing that living life as a speciality doctor gives you the understanding that you are the smartest person in the room most days. Well, being the smartest person in the room may or may not be the case, but you could at least be empathic! I don’t imagine you have ever considered what it would mean to you and your mindset if you had to go through life knowing that no matter what you did, where you looked, or who you talked to, you couldn’t make things better/heal/fix your child!
  10. Please leave me with hope
    At the end of a consultation leave us with hope. Please. Instead, after sitting through an almost 2 hour visit you said there was no reason for a follow up unless the blood work came back “icky.” Really? How hard would it have been to leave us with the “I’ll be in touch” or something tinged with hope?! But to make a decision that we aren’t worth your time before even seeing test results? really? nice.

So what do we do? We continue to fight. We continue to research on our own. We continue… It seemed awfully easy for you to look at us and say that the current medical research doesn’t have a unifying diagnosis for my daughter. But it’s not easy for us.

and so we will continue the fight, we will continue to search, we will continue to hope.

Cause Maddie matters.