It’s not ScreenPrinting, It’s SCREAMPrinting

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.

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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!

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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.

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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.

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Yearning

I have so many thoughts swirling in my head.
So many things I want to say.IMG_2104

 

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

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

But guys, let me just say…

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

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

Graduation

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.

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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!

Yesterday you were a child, Today an adult..

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Photo by Derek Dodson

Maddie turned 18 this week. Of course I knew this was coming.. but I still wasn’t ready. We have been working on college scholarships and planning graduation events, but somewhere along the way I forgot that with graduation and college, my “little” girl was going to become an adult.

Unlike many parents, I’m not worried about Maddie being a responsible adult. Maddie has been responsible pretty much her entire life. And it’s not that I can’t let go.. I will and am..

But here is the deal.

For 18 years I have spent pretty much every breath that I have in me protecting Maddie’s health. I have spent thousands of hours in doctor’s offices, in waiting rooms and researching diseases and cures when the specialists didn’t even know what to do or how to treat her.

And then, starting at 12:01am on Maddie’s birthday, I started getting the emails.

“You have been unlinked to Maddie’s account”

“This email has been removed from the account”

“You have been removed from this account”

over

and

over.

I have been removed and unlinked from Maddie’s life.

There aren’t even words to describe how that feels. Maddie didn’t choose to unlink or remove me. An automated system that just the day before wouldn’t allow Maddie to make a single decision for herself now requires her to make all of the decisions and excludes me from even seeing her account!

It hurt.

But more than that, it scared me.

I wasn’t ready and I hadn’t downloaded all of Maddie’s files. I realize now that I should have been more proactive, but dang.. just living in the trenches is hard enough. Someone should have warned me! That automated system should have sent me an email 30 days prior saying that unless Maddie authorized it, I would be removed from her accounts.

For those of you out there that have never had the struggles that come with having a child with 13 different diagnosis codes and almost a dozen different specialists, I’m sure you think I’m overreacting. Just hang with me a moment…

This week along with Maddie’s birthday, she has had some ongoing and new health issues. She saw her primary doctor who did blood work and is working to get in to see two of her specialists next week. Both specialists will need to see the results of the blood work. None of these three doctors work together or are part of the same network. My job for the last 18 years is to be the manager and provide all of the paperwork and logistics for each of the various doctors. Now it’s Maddie’s responsibility. A responsibility that Maddie will take the lead on, but truly wasn’t ready to take on. As she said, when the doctor’s office calls with results from the blood work, she isn’t even going to know what they are talking about! And Maddie is an educated patient!

I can’t help but be a little terrified.

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What I learned from watching my daughter in Colorguard

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

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

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

Colorguard is a SPORT.

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

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

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

Guard teaches the importance of the
individual WITHIN the team.

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

 

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

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

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

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

 

Fostering Creative Thinking

Children are innately creative. I know this. I see this everyday.  Yet I regularly hear adults say that their children aren’t creative. I try to be nice. I’ve learned to just keep my mouth shut and not call out these parents, but oh it is difficult! Children NEED to be creative. It is who they are! From invisible friends, bringing soldiers and dolls to life, and even simply playing house, being creative is a necessary part of a child’s growth and development.

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Why do parent’s say that their children aren’t creative? Well, over the years I’ve decided that it is a control issue. Creativity is often messy.  Creativity requires a suspension of disbelief. Creativity embraces differences and pushes boundaries. All of these are areas that make adults uncomfortable. Believe me. I know! Even in my world where creativity is a prized treasure, it is still messy and at times drives me crazy.

But it is worth it.

So what do you do if you can’t fathom the thought of glitter in your carpet, paint on the back porch,  a million legos underfoot or blanket forts in the living room?IMG_5539IMG_7590

 

 

 

 

 

 

 

 

 

Well, start simply.

There are some great games that you can play. While Kylie is the one pictured here, all of my girls are willing and happy to play the games in the pictures together! And that is a win in and of itself! Our family plays games. We play card games, board games and dominoes. We put puzzles together and build lego creations. If the idea of Playdoh crumbs smushed into the kitchen table and chairs gives you the willies.. start with games like Otrio, Trax or Mental Blox.

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(FYI.. this is NOT a paid advertisement.. these are my real life recommendations!)

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Fostering creative thinking is a soapbox issue for me. Why? Because I’m amazed at how many adults DON’T KNOW HOW TO PROBLEM SOLVE! And we as a society are not teaching nor are we modeling to our children how to problem solve, how to come up with new or different solutions to problems or even how to think for ourselves!

While I am a huge advocate for technology and I want equal access to information and all that technology brings, I am worried about the immediate reaction to just “google it” when something doesn’t work.

Resiliency is more than being able to survive when the internet is down!

We have to model and teach children that when there isn’t a clear answer, sometimes we have to simulate the what-ifs and work through options. We have to not only allow FAILURE, but embrace it and show our children how to move through failure to success!

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So there you have it. I challenge you to go be creative today. And no, you don’t have to go paint a picture or create a sculpture to be creative. Go play a game, create a fairy garden in the flower bed, build a treehouse.. do something that doesn’t already have a set finish point and that requires your brain and your body to work together in a new way!

And finally, enjoy the journey

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.

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!