September 18, 2019 - The Comeback Kid - One Year Later

GRIT Spotlight: Bailey Trinder

 

Only one year ago, Bailey Trinder was starting his junior year at Foundation Academy, active on the football team and eager for a great season.  But a tragic car accident on September 6th, 2018 left him with a 3% chance of survival. After 46 long days at Orlando Health, he miraculously went home to his family in a wheelchair, paralyzed from the waist down.

He returned to school the following January and turned a corner mentally and physically. Even though he had ongoing occupational therapy, he was ready to tackle the real world and get back on track with his schooling and activities. His teachers and friends were an immense support system, as well as his family and local church. They all made acclimating back into normal life smooth for Bailey.

But he had some adjusting to do. After the accident, Bailey’s thoughts shifted from normal teenage worries like how he would perform in the next football game, to, How can I help my teammates now, from the sidelines?

Even arriving at places required him to think, Where is the easiest access point for my wheelchair that won’t be too much stress on my arms and shoulders?

Bailey’s parents, Brian and Betsy are astounded by his attitude and maturity when handling situations following the accident.

“You think you know your kids, but then to watch him go through everything he’s gone through… There are days he just blows me away.” Brian, Bailey’s dad says. They are proud as he takes each new challenge in stride.

Bailey never gives up and when negative thoughts creep in, he remembers his supportive community. He thinks, “All these people are pouring into me and encouraging me just so I can feel bad. I don’t want that. They want to see me do great things.” So he gets out of the negative mindset by focusing on their kindness and great hopes for him.

But negative thoughts are never too far away.

The first Friday night football game Bailey watched from the sideline was heart-crushing difficult. Those were his teammates, his friends, out on the field doing what he loved most. Competing, sweating, and bonding together play after play. They were staring the competition in the face, choosing grit and determination over fear.

Bailey struggled to stay positive as he looked on, sitting in his wheelchair. He could have left, refusing to put himself through the torture. 

But he stayed. He would never abandon his team. With each negative thought, he focused on what he could do instead. He narrowed his eyes, scrutinizing each play and looking for missed blocks. He flagged down his teammate and listened to his perspective, analyzing the situation before encouraging him to push harder on the next play.

And each Friday night game under the lights gets a little easier.

He has always loved sports and competition from when he was four years old playing tee-ball or competing against his brother in anything. Soon he fell in love with baseball and enjoyed playing catcher. His dad says he has always been a “fierce competitor” as Bailey was always motivated by others better than him to practice and play hard to improve his game.

The competitive drive runs thick through his blood and he can’t get away from it. Even now, he participates in sled hockey, wheelchair basketball and is looking into track and field events like shot put, discus or javelin.

His favorite so far has been sled hockey; similar to regular hockey but the players sit on sleds with blades on the bottom. They propel themselves forward by digging spiked hockey sticks into the ice.

“To me, it’s better than being in the chair like for wheelchair basketball or track and field. It’s good to get out of the chair and into something else.” Bailey says.

With his vicious competitive nature, the other team would be smart to stay out of Bailey’s way as he perfects his slap shot.  

The wheelchair he uses every single day obviously wasn’t his plan, but Bailey has come to peace with his new life since the accident. His faith has strengthened, and he realizes God has a purpose for him.

“It wasn’t my plan to begin with. He didn’t change His plans because of my accident; He made a plan with my accident in it.” Bailey says.

He originally questioned God when he first woke up in the hospital and couldn’t move. He struggled through setbacks in therapy, thinking, How did this happen? Why now? Why me?

It could have been worse, and he takes comfort in the fact that he is here today for a purpose.

These days Bailey goes wherever he wants and focuses on the things he can do instead of what he can’t. He takes great pride in something even as small as opening up the door for himself and has the confident attitude of, “I have done this before, I know how to do it, and I can do it on my own.”

Occupational therapy ends at the end of this month and he will be undertaking something new: Driving.  He has a push-rock hand control system installed that will allow him to brake and accelerate by hand.

Bailey also has been reaching out to help others through public speaking. He humbly shares his powerful story to a crowd. In a speech to 400 people at Orlando Health he said, “Just because life changes doesn’t mean I can’t change lives.” He focuses on making an impact and even though public speaking can make anyone nervous, he pushes through the fear, knowing it could help just one person.

No matter what lies in Bailey’s future, whether it is Stetson University, University of Florida, or a Business Management degree, his confidence, and positive attitude will pull him through, no matter what. 

Written by Kimberly Patton, Marketing Journalist for AaronStrong

www.kimberly-patton.blogspot.com

May 24, 2019 - Shining in the Dark

GRIT Spotlight: Katie Stedelin

On the night before the first day of Katie Stedelin’s Senior Year in the fall of 2018, her mom told her, “I have something to give you.”

Judging by the look in her mom’s eyes, Katie was nervous when she took the letter from her. Right away she noticed her dad’s handwriting.  

“He told me to give this to you on the first day of your senior year.” Katie’s mom said. He had passed away on March 21st, 2017 but wrote this letter in rehab and gave it to Katie’s mom to save.

Part of the letter read;

“I have put you through some difficult times and for that, I am very sorry.

I want you to know that I love you very much and I am very proud of you.”

 

The letter wrecked Katie because it was from someone who made a lot of mistakes but loved her desperately. Clutching the words from her dad gave her strength to embrace the truth and move on.

When Katie was in 3rd grade, her dad left for the first time. She didn’t know it at the time but later learned of his gambling, alcohol and drug addictions alongside struggles with mental illness. Katie’s dad Ron took money and left her and Katie’s mom Debbie alone, coming back unannounced whenever he wanted. Whenever he showed up, Katie never knew how to react because sometimes it was over a month since she had seen him last. Through the years, he underwent rehab four separate times.

Before he left, Katie had a wonderful relationship with her dad. They had the same personality with so much in common and they were best friends. Katie says he was a teacher, a “mountain of a man”, completely huge, and so funny. His loud, belly laugh used to embarrass her when they went to the movies but inside she was cracking up right along with him. She shared so much of his personality and so they were stuck like glue, best friends.

Unfortunately, after a bout with cancer and a car accident, he became addicted to pain-killers and then later, heroin. Heroin is one of the most addictive substances in existence, and an addiction to this drug is hard to overcome without help.*

Growing up, Katie fought with her emotions about her absent father, as she missed his giant personality and wanted him to show up to her birthday parties. She stuffed most of the anger down into a deep, deep place, rarely opening up to anybody about the truth of her dad. In middle school, she had emotional outbursts but was too young to make the connection that these were because of her dad’s revolving door-like presence in her life.

For a long time, Katie’s mindset was to confront him with pleas;

“Dad, just stay. Why can’t you just stay?”

She didn’t understand. His choice to abuse drugs was not something Katie could wrap her mind around, she just missed her dad.

One day when Katie and her mom visited him in the rehab facility, he talked excitedly about coming home.

Katie’s mom gently spoke to her husband Ron. “Honey, you have to stay here and take care of yourself. You have to get better.”

He became angry, threatening Debbie and saying he would steal Katie away from her. Debbie quickly told her daughter to leave the room to protect her from her angry father. But first, Katie stared at him with a sudden realization.

As she got up slowly, she looked at him, searching his face for anything familiar.

“Dad…?”

She didn’t know who he was. She looked in his eyes and he was not there.

The childhood father she remembered was gone. 

The childhood father she remembered was gone. 

When high school came around, she rarely saw her dad. Just before her freshman year on July 4th, he suffered a psychotic break. He was Baker Acted* three times because he was in danger to himself and others because of his mental illness of PTSD, bi-polar, depression and anxiety. They detained him into custody and put in a mental hospital.

He was open to various kinds of therapy to get better and during one hypnosis therapy session; the therapist pulled memories from his childhood. Unfortunately, he experienced child abuse from everyone he trusted growing up. As he wrote in his letter to Katie, “I was the subject of some unsavory life experiences.” Knowing these facts would help Katie learn to be compassionate toward her dad even amongst his harmful decisions.

In November of 2016, he graduated from the rehab facility and things were looking good because he was about to start a fishing business. He didn’t want to be in the same town where his drug dealer was so they were looking at houses on the coast.

But Katie was still struggling with anger so she avoided talking to him. Debbie wanted things to be better, and they attended rehab programs as a family. During these programs, they watched videos that explained how drugs affect the brain and what happens neurologically. Katie realized her dad was dealing with addiction and disease, and he didn’t hurt her on purpose. It took some time, but she started to feel more compassion toward him.

Understanding the science behind drug addiction unlocked a whole new world for Katie and finally granted her peace enough to carefully move forward in their relationship. 

Ron’s original plan faded when in January Ron’s fishing boat sunk in an accident and he lost the chance to start his new business. Each of his dozens of job interviewsended in rejection, putting him in a funk. Katie was in the middle of her sophomore year and he brought her to school and picked her up every day. Those small moments strengthened their relationship and their interactions became increasingly more positive.

On Valentine’s Day, he wrote her a sweet letter saying how proud he was and how much he loved her. He had finally got a job and would’ve started at SeaWorld on April 1st, but he never made it there.He told his family he was going fishing and never came back.

Ron Stedelin passed away in a hotel room of an overdose on March 21st 2017 at 57 years old. His tolerance level had gone down so far that when he used the drugs, his body couldn’t handle it.

Katie and her mom were left to pick up the pieces. Regarding what has gotten her through, Katie now says, “If I didn’t believe in God and didn’t have my faith, I would be dead.” Her faith would be what pulled her out of the deep pit of pain, grief, and self-hatred.

It wasn’t long before she had more disheartening news. Three months later her older brother Ron John was gunned down in a drug deal.

Though Ron John and Katie were several years apart, they were close and Katie confided in him often. She didn’t know he was involved in drugs until after he passed away.  By December, she still hadn’t grieved from both of their deaths. Her old habit of stuffing her emotions was her defense mechanism to avoid the pain. But   every night she had nightmares of the haunting scenes surrounding their deaths; the dark hotel room where her dad died, the alley where brother’s bloody body lay on the ground. Her brain had painted a picture and the horrific images didn’t leave.

 

Katie showed immense perseverance as she worked with a therapist for grief and PTSD. He asked the hard questions and helped her process the emotions she had stuffed for so long.

 

She wasn’t just dealing with loss; she was wrestling with how her dad’s addictions related to her self-worth.

It took hard work to force herself to properly grieve by embracing the heavy emotions she had buried.

In the summer she interned at her church and the powerful love in that community gave her strength to keep going. It took time, but slowly she stopped blaming herself for everything that happened and received healing love from God. Bit by bit, things started to get better. Her life that had been torn apart by drug abuse and death began to gain hope.

Katie has come a long way since the angry, confused child she once was. While her father was still with her, she was able to get help to understand his struggles. After his passing, she has worked through her grief and is now committed to self-care, a healthier body and mind, and making wise choices to continue to walk in the right direction.

She is determined to heal from the wounds of a painful childhood and move forward into the future with hope, knowing that she is in control of her choices.

More recently she has gotten healthier physically and has lost 28 pounds so far while working with a trainer. Katie is happy with her progress and eager to get stronger physically and emotionally.

She graduated from Lake Minneola High School this year and her plans are to study worship music at Highlands College in Alabama to become a worship pastor, and then obtain her Bachelor’s Degree in Psychology to become a therapist.

Her bright attitude and encouraging spirit uplift those around her, and she makes her mom proud every single day. She is an amazing example of someone who doesn’t allow negativity to keep her down, but instead she powers through, sharing her light with everyone she meets.

 

Written by Kim Patton

Marketing Journalist for AaronStrong Foundation

* https://www.thewatershed.com/get-help-for-your-addiction/florida-baker-act/

* https://www.addictioncenter.com/drugs/heroin/

 October 8, 2018 - Never Give Up!

GRIT Spotlight: Chris Lowe

As Hudson Lowe turned 20 years old in July of 2017, he was rumored to be the next Elon Musk. Hudson was an environmentalist, founder of Ocoee Green Initiative, and the speech winner of Florida Association of Student Councils (FASC) in 2015.

He was the kid that posted stickers near the light switches, encouraging everyone to turn out the lights when not in use. He created his own solar panels and was passionate about renewable energy. In 2016 Hudson traveled the world for a global leadership symposium as his career in environmentalism seemed to take off. 

Besides his global achievements, he was also a funny, handsome young man who loved playing the guitar, drums and flying through a Rubik’s cube in seconds. He was, as his mom states, “an all-American kid, larger than life and set to change the world.”

But less than two weeks later, he took his own life, leaving friends and family shocked and devastated. As his family grieved and began to work through the pieces of his life he had left behind, they found a notebook that expressed his biggest dreams. They read Hudson's words, “I want to start a non-profit and call it Our Green Future.”

The non-profit exists today, and the mission statement is “To promote a sustainable world and a greener future, for each and every person. With a focus on sustainable solutions, climate action, and education of today's youth, Our Green Future, Inc. is working towards a world of compassion and consciousness.”

Chris Lowe, Hudson’s mother, and her family began to move forward with Hudson’s dreams, knowing that they could accomplish what he wanted if they put forth the grit and determination that Hudson displayed every day.

But as she carries on her son’s mission, she is bombarded with kids and parents who reach out to her for help and advice regarding their personal struggles. So, Chris embraces the vulnerable position of opening up to friends and strangers about the circumstances surrounding Hudson’s death.

Hudson began taking Adderal during college when studying for finals. It was readily available to him and helped him focus during stressful weeks. But he soon started struggling to sleep at night and wrestled with constant headaches. So after a trip to the doctor’s office, he was given several prescriptions to combat all of the side effects. Mood swings came, sending him into a pit of depression, something that he had never struggled with before then.

The physical and mental battle raged on for nearly two years. At the time of his passing, Hudson was taking six different prescriptions. And the side of the bottle of his anti-depressant read,

“May cause suicidal thoughts.”

Hudson struggled to get a handle on his feelings, but he continued to trust his doctors. The last thing that Chris Lowe heard out of the mouth of her son was, “Mom, I know my own body, the doctor knows what he’s doing, I have got it under control. Once I figure this all out, I am going to travel the world and speak to kids about how to get through this.”

Through his pain, he was determined to ultimately use it to help others.

Chris feels strongly that the medications took away Hudson’s human instinct to fight for his life. Hudson may have thought that the pills should have been helping his hopeless thoughts when unfortunately they could have been the reason he had them in the first place.

 

Because Hudson was always the type of person to focus on the solution, not the problem, Chris is passionate about informing students and parents about the dangers of medication.

“Treat the situation before you need the med,” Chris explains.

“We all struggle with negative thoughts, whether we are 16 or 50 years old. Medication makes the highs feel really high, and the lows feel really low. We have to learn to deal head-on with what makes us anxious or depressed before we turn to self-medicating.”

She gives her listeners suggestions that can help.

1.    Think about everything you are putting in your body: Junk food, caffeine, drugs, chemicals and additives, prescription pills. Eating healthy goes a long way to helping your body to function well.

2.    Essential Oils and proper breathing methods: When you are not thinking about your past or your future but are focusing on the moment, anxiety subsides. Listening to yourself breathe in and out slowly calms down a rapid heartbeat and can prevent panic attacks.

3.    Enjoying nature: Simply walking the dog or going for a hike does wonders for a body because it is getting some fresh air.

4.    Volunteering: Helping others gets your mind of yourself and helps you have a broader view of humanity.

5.    Turning devices off: Ask yourself, do I ever completely disconnect? Turning your phone off at night and using a separate alarm clock may be just the right dose of peace and quiet that your body needs. It may be tempting to numb pain with social media, but the comparison game that comes with it can be dangerous.

 

6.    Yoga: Stretching, exercising or following a simple meditation video for a few minutes each day can bring peace to your busy mind.

When Chris travels to schools to address hundreds of students, she locks eyes with her young audience and says,

“I’m standing here, so your mother never has to be where I am. "They, in turn, listen to her tell Hudson’s story and offer inspiration as she pleads with them that they matter, they have a purpose and as Hudson used to say, “Never give up!”

To donate, visit the website: www.ourgreenfuture.org

Current Project, “Tanks a lot.” Chris Lowe is collecting tank tops to be turned into reusable bags. She needs 45,000 to represent every person in the US who passed away from suicide in 2017.

If you have any used tank tops, or t-shirts cut to a tank that you’d like to send, you can mail to:

P.O. BOX 440

Ocoee, FL 34761

 

Written by Kimberly Patton, Marketing Journalist for AaronStrong

www.kimberly-patton.blogspot.com

July 20, 2018 - What Evan CAN Do

Evan Dargis just finished his fifth-grade year at Real Life Christian Academy as well as his second complete baseball season playing as a pitcher and a first baseman. Given his medical history, these facts are nothing short of miraculous.

 

At his very first practice of the season last fall, he shows up with his bat bag over his right shoulder and his worn glove tucked under his left arm. He walks and talks with his friends, eager to start a competitive practice under the beautiful Florida sun. Some of the kids that don’t know him stare at his left Radial clubhand; how his arm is short, his wrist located where his elbow should be, and his fingers number three instead of five.

 

As the coach orders the team to hit the grass for 20 pushups, he mentions an exception as he looks down at Evan.

 

“Evan, you can do something else.”

 

The coach assumes that push-ups aren’t possible for this kid. But like anything else, Evan has figured out a way to work right alongside his teammates. He drops to the ground and digs his right arm into the dirt, lifting his body up and down with his strong right arm.

The teammates stop their pushups and drill their eyes in Evan’s direction. Coach doesn’t miss the chance to use Evan’s determination to challenge the rest of the boys. “Alright guys, when you finish your pushups, try Evan’s version!” They struggle, realizing that their “next level” is Evan’s “normal.”

When Evan Dargis was born on November 20th, 2006 to Rebecca and Brett Dargis, the ultrasounds that had prepped them for his birth could not have been more wrong. Their fourth and final baby boy was not as healthy as the gray screen had long promised.

 

They held their son as he was attached to monitors, and listened to the doctor carefully report all the defects little Evan had. The list was painfully long.

 

His heart suffered immediately with double outlet right ventricle (DORV), transposition of the greater arteries, pulmonary stenosis, atrial and ventricular septal defects. All this meant that instead of Evan’s body pumping blood in a figure eight, everything was flipped.

 

In addition to the heart troubles and left radial clubhand, his neck kinked in a severe case of torticollis, he only had a single kidney and at first, no spleen. 

 

With no spleen, Rebecca kept Evan in a bubble so that he wouldn’t catch a dangerous infection that he wouldn’t be able to fight off. She prayed for a spleen for Evan, dreaming of the best chance at a normal life for her last born. At two years old after his body grew a functioning spleen, he was able to be taken off penicillin.

 

During this tumultuous time when Evan had three open heart surgeries before age two, Brett and Rebecca were constantly gritting their teeth through difficult conversations with specialists. Each of the 11 doctors gave them a grim outlook as they looked over Evan’s chart screaming of his heart problems. Whether they were discussing respiratory or kidney function, his radial clubhand or something else, their response was always the same. “This is the LEAST of his worries. The biggest hurdle is his weak heart…”

It seemed impossible.

Amidst the constant barrage of terrible reports, they did experience an angel in the form of cardiologist Dr. Agustin Ramos of Florida Hospital for Children in Orlando. He was the only doctor from the very beginning that sincerely encouraged them in the right direction and gave them hope.

 

The Dargis family kept Evan away from the heat and did the best they could to keep him growing and gaining weight. They often carried his frail body on outings because his heart was working so hard just to keep him alive, and any other physical activity exhausted him.

 

Rebecca and Brett coped by focusing on the here and now because that was all they had. When asked what got them through, they said, “The power of prayer.’’ It sustained them through their deepest, darkest moments. The hope that flooded in changed their hearts and the prayers of friends and family cushioned them as they faltered throughout the journey.

 

The next step was Evan’s fourth extensive surgery where the doctors installed an adult-sized Contegra conduit in his heart. He spent the summer after third grade recovering at home. After the first night home from the hospital, Rebecca asked Evan how he had slept. Evan looked at her strangely, as if remembering a distant dream.

The next step was Evan’s fourth extensive surgery where the doctors installed an adult-sized Contegra conduit in his heart. He spent the summer after third grade recovering at home. After the first night home from the hospital, Rebecca asked Evan how he had slept. Evan looked at her strangely, as if remembering a distant dream.

 

“Mom, I didn’t sleep much. My heart was beating so loud in my chest. It was a weird sound that I have never heard before.”

 

His eyes glazed in exhaustion and confusion, but Rebecca knew that his heart murmur had gone away and his heart was pumping the blood correctly for the first time. Instead of the “whooshing” sound, his heart actually beat with a healthy thump.

 

Her eyes misted as she hugged her precious little boy, knowing that the surgery was successful.

After his six month check-up with Dr. Ramos, Evan had a green light to participate in competitive sports. He eagerly signed up for Tai-Kwon-do and then baseball. Dr. Ramos said, “Evan’s body will tell him if he is doing too much.” So, armed with extra padding for his one precious kidney and upper chest, he trots out to the baseball field.

 

He finds a way to play baseball despite his physical challenges. He uniquely tucks his glove under his left arm and then grabs it quickly to catch the ball. Although he sweats more than anyone else, drinks more water, and gets tired easier, Evan works hard and does what every other kid does.

 

Evan uses his little arm as a cup-holder, but also as a powerful teaching tool. He wants to encourage those who are struggling to focus on what they CAN do, not what they can’t do. He says, “Just because something is wrong with you doesn’t mean you can’t do something. I’ve got a lot of problems, but I can still do things.”

 

As an upcoming 6th grader, he doesn’t let his challenges stop him from living with a competitive drive and a compassionate heart toward others.

 

Written by Kimberly Patton

www.kimberly-patton.blogspot.com

March 20, 2017 - Malia Crushes Cancer

Megan and Glen Jusczyk were both raised in comfortable American homes, sheltered and warm. They worked hard, both playing Division One soccer and earning scholarships. In their marriage, Megan and Glen worked together in their community in Central Florida, focusing on soccer programs for kids. Success wasn’t handed to them but they had opportunities to go out and achieve their dreams. In a matter of time they would come to see that not everybody is so lucky. 

In April of 2011, a worst-case scenario crossed their paths, invading their comfortable family with a torpedo of pain and emotional torture. Their little girl Malia started complaining about her stomach at a mere two and a half years old. As Mama Megan rubbed her belly every night, she looked into her child’s face and knew something was wrong. A trip to the doctor didn’t prove fruitful until an ultrasound was ordered. Megan and Glen stared at the enemy on the screen: A softball-sized tumor warping through Malia’s insides like an unwanted guest, squeezing the life out of this unsuspecting little girl. Malia was swept up from her home and ushered into the world of doctors, needles and tubes. Megan and Glen were waiting anxiously in the hospital when they saw a line of lab coats walking towards them as if in a scene from a movie. The oncologists delivered the bad news: Stage four neuroblastoma.

Neuroblastoma is an extremely rare childhood cancer, affecting 10 children in every million, usually before the age of 5. The five-year survival rate for high-risk cases (Stage Four) of neuroblastoma is less than 40 percent. 40 percent of neuroblastoma patients are younger than 1 year when diagnosed, 35 percent are aged 1-2 years, and 25 percent are older than 2 years when diagnosed.*

Megan and Glen wasted no time and snapped right into GO mode. They researched their options, weighing location and treatment opportunities.  Boston Children’s Hospital had been rated #1 in the world for treating neuroblastoma that year. Since they were both originally from Massachusetts, it was a no-brainer to pack and move there immediately. Megan got a job transfer and worked for the insurance while Glen monitored Malia through her treatment. Neuroblastoma treatment costs at least $40,000 out of pocket, even with good insurance.  Megan and Glen’s eyes would be opened to other families going through treatment who didn’t have good insurance or worse; were single parents and couldn’t work.

The whirlwind of chemo began, coupled with a stem cell transplant, blood transfusions and immunotherapy. Malia lay quiet on the bed, receiving every tube and uncomfortable surgery with an understanding that this was the way it had to be. She didn’t throw things. She didn’t scream and say “No”, even though no one would blame her if she did. Her once timid demeanor transformed into a brave fight for her life. Malia toughened up, feeling the seriousness of the situation and finding a will within her to crush this disease.Megan and Glen clung to relentless optimism. They had no other option, and they refused to let their mind wander to the worst possible outcome. Other kids in the same units left this world and Megan and Glen grieved with those families. Funerals were becoming painfully common. Megan watched her daughter suffer, feeling as if her arms were tied behind her back, unable to help in any way. No one could take Malia’s place, and as a parent, that fact alone tortured her. But they clung to hope with every fiber of their being.

Malia was in treatment until after her 4th birthday, and in July of 2012 was declared “NED” (No Evidence of Disease). They followed up the treatment with a trial for two more years, and she is now a beautiful 8-year-old leading a normal life with her family in Massachusetts. She pitches on a softball team with ferocity, and even bravely jumps off the high-dive at the pool with a big smile on her face.

In 2012, Glen redirected his existing non-profit organization to focus on their brand new vision. After their ordeal, the Jusczyk’s immediate desire was to stretch their arms wide to love on other families.

 

"It was not an option for us to do nothing.”

 

The non-profit is called For Kids’ Sake Foundation and its mission is to raise money for neuroblastoma research and help provide for families suffering through experiences with neuroblastoma. Megan admits that running the non-profit foundation is difficult, and each event may not go as planned.

But she says, “I am never going to quit and it is not going to fail.”

 

Megan and Glen’s tenacity shouts loud, and it has paid off immensely. Next month they will be writing a check for $100,000 to go towards neuroblastoma research. Even on the hard days, this family has persevered through.

We all should be grateful for what we have. Our families. Our opportunities. Our health. But Megan and Glen didn’t want to just be grateful. They wanted to make a difference. They carry on their backs the weight of many. Their efforts are the salve and balm to the wounded ones.

For more information and to donate; visit http://maliacrushescancer.com

-Written by Kimberly Patton, AaronStrong Contributor

 November 24, 2016  - I am > FIRE

The sun rays filter through the car window, and Kris Kruse and his partners are on patrol in beautiful Lake County, Florida. It is July of 2015 and Kris has just started touring on duty as a police officer. He has always looked forward to a career in law enforcement, and now it is official. He wears the badge. His radio crackles with calls. He is living out his training on a daily basis, his future spread before him like open waters ready to be explored.

But he barely made it through 8 months of his new career when a backyard bonfire accident seared his skin, nerves, muscle and tissue on 69% of his young 21 year old body. The explosion on Superbowl Sunday 2016 caught him by surprise, and the flames licked at him for seconds that felt like eternity. He fought the flames desperately, while his friends rushed to help him. Normality would take a backseat for several months, while he underwent 11 surgeries and lived at the hospital for 97 days, mostly in ICU. His parents would sit by his bedside, crying over their once vibrant son wrapped in bandages and given a grim diagnosis.

“I was trapped inside for hours and days, unable to walk or move. Because I am naturally an outdoors person, this drove me nuts. I eventually didn’t even watch TV. If someone was in the room, we would talk. But I mostly just laid there on the bed.” Staring. Waiting. Wondering. What comes next?

“I was trapped inside for hours and days, unable to walk or move… Staring. Waiting. Wondering. What comes next?”

He worked hard to fight deadly infections, obeying the nurses and praying for the skin grafts to set well as his body started to heal at snail pace. He then had to relearn how to grip a fork, breathe normally and bravely stand with a walker. He began to practice small steps. Except that with his progress came interrupting surgeries that set him back again. The daily process was grueling, but he clung pitbull-like to hope.

“I was never suicidal. I have always had a strong spirit, and when things got tough, I knew I just had to keep moving on. I had to learn to walk several times, cramming 22 years of growing into 5 months. My long term goals felt like a million miles away. So I turned my eyes to short term goals: Cut a steak, bend my fingers, walk without a walker.”

“I have always had a strong spirit, and when things got tough, I knew I just had to keep moving on.”

The support system from outside those grim hospital walls was unreal. His Bravo Squad from the police force brought in a framed group picture that compelled him daily to fight hard. That was his team. His men. His supporters. He didn’t want to let them down and was determined to push through, so he could join them again soon. Several police departments made banners, and his room was bursting at the seams with decorations, well-wishes and colorful encouragement. Friends and strangers from all over the world rallied together, KRIS STRONG, willing him to fight tough. He received a special letter from a family he had helped back when he was first starting out as a police officer and it is one of his most precious pieces of mail. When the family’s home was broken into, Kris was one of the officers to respond. The alarm had been tripped and the front door was mysteriously hanging open. Even after clearing the house of any danger, the parents and two small boys were visibly shaken. Kris stayed behind with another officer and took a few extra minutes to walk through the house again with the two boys in tow. He encouraged them to keep their parents and family safe. Kris handed out Junior Police stickers for the little boys, and they beamed as they each wore their badge of honor. Kris gave them peace of mind as well as a mission. Strong words of encouragement from families like this renewed Kris’ passion for the job and gave him continual motivation to keep working hard to get out of the hospital.

Kris pushed himself daily to walk those extra few steps during his physical therapy. When his body screamed at him to stop running it into a brick wall, he lay back down and thought, “If not today, tomorrow.” Kris was resilient. Tenacious. Refusing to give up.

I am > Fire. This is Kris’ mantra, written with strength by a complete stranger. Kris read this phrase from a letter he received while still in the hospital, and the powerful phrase describes his battle perfectly. Kris, literally surviving fire, has come out on the other side an overcomer. He can look back and say, “Wow- fire did not defeat me. I am greater than fire.”

“If not today, tomorrow… My goals and dreams haven’t changed.”

Looking toward the future doesn’t scare him. He amazingly seems unaffected by the accident, still extremely focused on his career. “My goals and dreams haven’t changed. I want to serve on the Police Force for at least 20 years and retire with honors.” He wants to help significantly with the Explorer program, something that he was a part of as a teenager. He dreams of helping other teens train to be law enforcement officers, maybe getting the program running going in other counties.

He knows that it will take a while but wants to get back on the streets, patrolling and providing security for his city. He loves being the one to answer a person’s last call of desperation. While they are in their worst moments on a fierce search for help, he can be their answer. Kris sees being a police officer as a great way to give back to the community, and he enjoys watching civilians transform from a place of desperation into something positive. As of October 31st he is back at the Police Station working again.

A couple weeks ago, Kris shot his gun at the range for the first time since the accident. He was stillssensitive from all of the nerve damage and re-growth in his hands. But the crack of the gun and the familiar blast put a huge smile on his face. He shed his humble spirit for just a moment, grinning with pride at the accuracy of his shots. “I still got it.”

Yes, Kris, you do. 

Written by Kimberly Patton, AaronStrong Contributor

June 25, 2016 - AaronMickel

It’s only fitting that the first “Grit Spotlight” would be about an ‘Aaron’.

 

Aaron Mickel was born a premature twin whose parents, due to complications, could not bring him home for four months after his birth. Fast forward 20 years, add a wife and a daughter, and its clear to see how this State Correctional Officer overcame the odds then and is continuing to do so now.

 

Aaron and his daughter share the same pediatric physician. To this day, there’s not a visit to the office where that doctor neglects to remind Aaron that he’s one of the miracles he had the opportunity to experience in his years of practicing medicine.

 

Now, Aaron has a chance to become a two-time miracle.

 

After dealing with what seemed to be an annoying cough since 2014, Aaron recently learned that there was something much more serious going on in his body. Aaron is in need of a lung transplant - two, to be exact. Double Lung Transplant patients, unfortunately, currently have a higher demand than what can be supplied. A waiting list of up to 2,000 patients are in this fight, hoping daily for their name to be called.

“You can’t make any situation go one way or another unless you do something about it.”    -Aaron Mickel

 

Many people in this situation might have a desire to sit back and to just hope for the best. Not Aaron. Facing this new challenge Aaron stated, “You can’t make any situation go one way or another unless you do something about it.”  Doing something about it started with an attitude and a mindset. Aaron’s overwhelming positivity and zest for life are evident, even over the most basic phone conversations. Aaron claims, “For whatever reason, I’ve always had an innately positive perspective as long as I can remember.” This admirable quality of positive perspective has been heavily tested since his diagnosis in early 2015.

 

Eventually, 2016 comes and brings with it, as is tradition, a sense of a fresh start, a clean slate, to re-do and find certain areas of one’s life to improve upon. For Mickel and his family, this fresh start of a new year wasn’t even 48 hours into existence when they received a phone call that would be the definition of a clean slate.

 

A donor had been found.

 

Aaron would have his Double Lung Transplant surgery the following morning. A frenzied panic of emotions overwhelmed the Mickels as they hurriedly packed for the hospital, made phone calls with tears in their eyes, happily announcing to friends and family that they were making the trek to Jacksonville with the plan of returning a few days later with a new man with a new set of lungs.

I find it hard to believe that there has been a more joyous moment than receiving that phone call.

 

Following that joy, that happiness, Aaron’s innately positive perspective was then given, by far, it’s greatest test to date. Aaron and his wife Stephanie weren’t but 30 minutes outside of Jacksonville when the phone rang again. False alarm. There was a blemish in the donor’s lungs that would make the transplant for Aaron ineffective. And just like that, the slate is wiped clean again.

 

One might be bitter, even angry, and rightfully so. Aaron’s response...

 

“I told them I was thankful to have even been given a call. I was thankful for the processes that are followed to ensure the safety and longevity of a transplantation.”

 

Aaron’s pattern of positive perspective, habitually looking for the silver lining in every single situation, every single day, are unmatched.

 

What shouldn’t and can’t be lost in this story, is the power of strength, support, and love shown by Aaron’s wife, Stephanie. Stephanie has been writing an online blog since day one to allow family, friends, and hopeful strangers to follow Aaron’s journey to a healthy life. The words written on the blog are so much more than words on a page. One can’t help but feel the joy, pain, and humility when reading her narration of this journey that they have been on together.

 

Much like the Bultema’s, the Mickels have chosen to be very public about Aaron’s journey to renewed health. This choice alone is bold. To invite the world into such a personal aspect of their life, exposing themselves at their ultimate state of vulnerability.  As it turns out, there is power in such a vulnerable state. People have flocked in support of Aaron’s cause. Events including a motorcycle run, local radio station’s holiday drive, a ceremony through his place of employment, along with a crowd funding campaign have emerged all in support of Aaron’s journey to a healthy life.

 

The Mickels have a very basic goal through sharing Aaron’s story - to inspire others to embrace all areas of life.

 

“If we are able to enrich our own lives through a positive perspective, then our hope is that will spread to others to do the same. The things that can be done in this world with hope and faith are endless.”

 

By human nature, it is easy to withdraw and hide the world from the difficulties we may encounter. To not face an obstacle head-on might seem easier, safer.  And that may be true.  But the Mickels are proof that, while probably more difficult, confronting an issue, “doing something about it,” and, most significantly, being open and vulnerable about your challenge can be far more impactful.

Written by Brian Dempsey, AaronStrong Contributor

The GRIT Spotlight!

We are accepting nominations for The Grit Spotlight!

 

 

 

 

 

 

 

 

 

 

 

Do you know someone who epitomizes strength and successfully perseveres through adversity? 

We like to honor people who never give up, who fight to succeed, and are determined not to let adversity get in there way. 

 

If you know someone like this, please nominate them for our Grit Spotlight.

 

Grit Spotlight Nomination

September 18, 2019 - The Comeback Kid - One Year Later

GRIT Spotlight: Bailey Trinder

 

Only one year ago, Bailey Trinder was starting his junior year at Foundation Academy, active on the football team and eager for a great season.  But a tragic car accident on September 6th, 2018 left him with a 3% chance of survival. After 46 long days at Orlando Health, he miraculously went home to his family in a wheelchair, paralyzed from the waist down.

He returned to school the following January and turned a corner mentally and physically. Even though he had ongoing occupational therapy, he was ready to tackle the real world and get back on track with his schooling and activities. His teachers and friends were an immense support system, as well as his family and local church. They all made acclimating back into normal life smooth for Bailey.

But he had some adjusting to do. After the accident, Bailey’s thoughts shifted from normal teenage worries like how he would perform in the next football game, to, How can I help my teammates now, from the sidelines?

Even arriving at places required him to think, Where is the easiest access point for my wheelchair that won’t be too much stress on my arms and shoulders?

Bailey’s parents, Brian and Betsy are astounded by his attitude and maturity when handling situations following the accident.

“You think you know your kids, but then to watch him go through everything he’s gone through… There are days he just blows me away.” Brian, Bailey’s dad says. They are proud as he takes each new challenge in stride.

Bailey never gives up and when negative thoughts creep in, he remembers his supportive community. He thinks, “All these people are pouring into me and encouraging me just so I can feel bad. I don’t want that. They want to see me do great things.” So he gets out of the negative mindset by focusing on their kindness and great hopes for him.

But negative thoughts are never too far away.

The first Friday night football game Bailey watched from the sideline was heart-crushing difficult. Those were his teammates, his friends, out on the field doing what he loved most. Competing, sweating, and bonding together play after play. They were staring the competition in the face, choosing grit and determination over fear.

Bailey struggled to stay positive as he looked on, sitting in his wheelchair. He could have left, refusing to put himself through the torture. 

But he stayed. He would never abandon his team. With each negative thought, he focused on what he could do instead. He narrowed his eyes, scrutinizing each play and looking for missed blocks. He flagged down his teammate and listened to his perspective, analyzing the situation before encouraging him to push harder on the next play.

And each Friday night game under the lights gets a little easier.

He has always loved sports and competition from when he was four years old playing tee-ball or competing against his brother in anything. Soon he fell in love with baseball and enjoyed playing catcher. His dad says he has always been a “fierce competitor” as Bailey was always motivated by others better than him to practice and play hard to improve his game.

The competitive drive runs thick through his blood and he can’t get away from it. Even now, he participates in sled hockey, wheelchair basketball and is looking into track and field events like shot put, discus or javelin.

His favorite so far has been sled hockey; similar to regular hockey but the players sit on sleds with blades on the bottom. They propel themselves forward by digging spiked hockey sticks into the ice.

“To me, it’s better than being in the chair like for wheelchair basketball or track and field. It’s good to get out of the chair and into something else.” Bailey says.

With his vicious competitive nature, the other team would be smart to stay out of Bailey’s way as he perfects his slap shot.  

The wheelchair he uses every single day obviously wasn’t his plan, but Bailey has come to peace with his new life since the accident. His faith has strengthened, and he realizes God has a purpose for him.

“It wasn’t my plan to begin with. He didn’t change His plans because of my accident; He made a plan with my accident in it.” Bailey says.

He originally questioned God when he first woke up in the hospital and couldn’t move. He struggled through setbacks in therapy, thinking, How did this happen? Why now? Why me?

It could have been worse, and he takes comfort in the fact that he is here today for a purpose.

These days Bailey goes wherever he wants and focuses on the things he can do instead of what he can’t. He takes great pride in something even as small as opening up the door for himself and has the confident attitude of, “I have done this before, I know how to do it, and I can do it on my own.”

Occupational therapy ends at the end of this month and he will be undertaking something new: Driving.  He has a push-rock hand control system installed that will allow him to brake and accelerate by hand.

Bailey also has been reaching out to help others through public speaking. He humbly shares his powerful story to a crowd. In a speech to 400 people at Orlando Health he said, “Just because life changes doesn’t mean I can’t change lives.” He focuses on making an impact and even though public speaking can make anyone nervous, he pushes through the fear, knowing it could help just one person.

No matter what lies in Bailey’s future, whether it is Stetson University, University of Florida, or a Business Management degree, his confidence, and positive attitude will pull him through, no matter what. 

Written by Kimberly Patton, Marketing Journalist for AaronStrong

www.kimberly-patton.blogspot.com

May 24, 2019 - Shining in the Dark

GRIT Spotlight: Katie Stedelin

On the night before the first day of Katie Stedelin’s Senior Year in the fall of 2018, her mom told her, “I have something to give you.”

Judging by the look in her mom’s eyes, Katie was nervous when she took the letter from her. Right away she noticed her dad’s handwriting.  

“He told me to give this to you on the first day of your senior year.” Katie’s mom said. He had passed away on March 21st, 2017 but wrote this letter in rehab and gave it to Katie’s mom to save.

Part of the letter read;

“I have put you through some difficult times and for that, I am very sorry.

I want you to know that I love you very much and I am very proud of you.”

 

The letter wrecked Katie because it was from someone who made a lot of mistakes but loved her desperately. Clutching the words from her dad gave her strength to embrace the truth and move on.

When Katie was in 3rd grade, her dad left for the first time. She didn’t know it at the time but later learned of his gambling, alcohol and drug addictions alongside struggles with mental illness. Katie’s dad Ron took money and left her and Katie’s mom Debbie alone, coming back unannounced whenever he wanted. Whenever he showed up, Katie never knew how to react because sometimes it was over a month since she had seen him last. Through the years, he underwent rehab four separate times.

Before he left, Katie had a wonderful relationship with her dad. They had the same personality with so much in common and they were best friends. Katie says he was a teacher, a “mountain of a man”, completely huge, and so funny. His loud, belly laugh used to embarrass her when they went to the movies but inside she was cracking up right along with him. She shared so much of his personality and so they were stuck like glue, best friends.

Unfortunately, after a bout with cancer and a car accident, he became addicted to pain-killers and then later, heroin. Heroin is one of the most addictive substances in existence, and an addiction to this drug is hard to overcome without help.*

Growing up, Katie fought with her emotions about her absent father, as she missed his giant personality and wanted him to show up to her birthday parties. She stuffed most of the anger down into a deep, deep place, rarely opening up to anybody about the truth of her dad. In middle school, she had emotional outbursts but was too young to make the connection that these were because of her dad’s revolving door-like presence in her life.

For a long time, Katie’s mindset was to confront him with pleas;

“Dad, just stay. Why can’t you just stay?”

She didn’t understand. His choice to abuse drugs was not something Katie could wrap her mind around, she just missed her dad.

One day when Katie and her mom visited him in the rehab facility, he talked excitedly about coming home.

Katie’s mom gently spoke to her husband Ron. “Honey, you have to stay here and take care of yourself. You have to get better.”

He became angry, threatening Debbie and saying he would steal Katie away from her. Debbie quickly told her daughter to leave the room to protect her from her angry father. But first, Katie stared at him with a sudden realization.

As she got up slowly, she looked at him, searching his face for anything familiar.

“Dad…?”

She didn’t know who he was. She looked in his eyes and he was not there.

The childhood father she remembered was gone. 

The childhood father she remembered was gone. 

When high school came around, she rarely saw her dad. Just before her freshman year on July 4th, he suffered a psychotic break. He was Baker Acted* three times because he was in danger to himself and others because of his mental illness of PTSD, bi-polar, depression and anxiety. They detained him into custody and put in a mental hospital.

He was open to various kinds of therapy to get better and during one hypnosis therapy session; the therapist pulled memories from his childhood. Unfortunately, he experienced child abuse from everyone he trusted growing up. As he wrote in his letter to Katie, “I was the subject of some unsavory life experiences.” Knowing these facts would help Katie learn to be compassionate toward her dad even amongst his harmful decisions.

In November of 2016, he graduated from the rehab facility and things were looking good because he was about to start a fishing business. He didn’t want to be in the same town where his drug dealer was so they were looking at houses on the coast.

But Katie was still struggling with anger so she avoided talking to him. Debbie wanted things to be better, and they attended rehab programs as a family. During these programs, they watched videos that explained how drugs affect the brain and what happens neurologically. Katie realized her dad was dealing with addiction and disease, and he didn’t hurt her on purpose. It took some time, but she started to feel more compassion toward him.

Understanding the science behind drug addiction unlocked a whole new world for Katie and finally granted her peace enough to carefully move forward in their relationship. 

Ron’s original plan faded when in January Ron’s fishing boat sunk in an accident and he lost the chance to start his new business. Each of his dozens of job interviewsended in rejection, putting him in a funk. Katie was in the middle of her sophomore year and he brought her to school and picked her up every day. Those small moments strengthened their relationship and their interactions became increasingly more positive.

On Valentine’s Day, he wrote her a sweet letter saying how proud he was and how much he loved her. He had finally got a job and would’ve started at SeaWorld on April 1st, but he never made it there.He told his family he was going fishing and never came back.

Ron Stedelin passed away in a hotel room of an overdose on March 21st 2017 at 57 years old. His tolerance level had gone down so far that when he used the drugs, his body couldn’t handle it.

Katie and her mom were left to pick up the pieces. Regarding what has gotten her through, Katie now says, “If I didn’t believe in God and didn’t have my faith, I would be dead.” Her faith would be what pulled her out of the deep pit of pain, grief, and self-hatred.

It wasn’t long before she had more disheartening news. Three months later her older brother Ron John was gunned down in a drug deal.

Though Ron John and Katie were several years apart, they were close and Katie confided in him often. She didn’t know he was involved in drugs until after he passed away.  By December, she still hadn’t grieved from both of their deaths. Her old habit of stuffing her emotions was her defense mechanism to avoid the pain. But   every night she had nightmares of the haunting scenes surrounding their deaths; the dark hotel room where her dad died, the alley where brother’s bloody body lay on the ground. Her brain had painted a picture and the horrific images didn’t leave.

 

Katie showed immense perseverance as she worked with a therapist for grief and PTSD. He asked the hard questions and helped her process the emotions she had stuffed for so long.

 

She wasn’t just dealing with loss; she was wrestling with how her dad’s addictions related to her self-worth.

It took hard work to force herself to properly grieve by embracing the heavy emotions she had buried.

In the summer she interned at her church and the powerful love in that community gave her strength to keep going. It took time, but slowly she stopped blaming herself for everything that happened and received healing love from God. Bit by bit, things started to get better. Her life that had been torn apart by drug abuse and death began to gain hope.

Katie has come a long way since the angry, confused child she once was. While her father was still with her, she was able to get help to understand his struggles. After his passing, she has worked through her grief and is now committed to self-care, a healthier body and mind, and making wise choices to continue to walk in the right direction.

She is determined to heal from the wounds of a painful childhood and move forward into the future with hope, knowing that she is in control of her choices.

More recently she has gotten healthier physically and has lost 28 pounds so far while working with a trainer. Katie is happy with her progress and eager to get stronger physically and emotionally.

She graduated from Lake Minneola High School this year and her plans are to study worship music at Highlands College in Alabama to become a worship pastor, and then obtain her Bachelor’s Degree in Psychology to become a therapist.

Her bright attitude and encouraging spirit uplift those around her, and she makes her mom proud every single day. She is an amazing example of someone who doesn’t allow negativity to keep her down, but instead she powers through, sharing her light with everyone she meets.

 

Written by Kim Patton

Marketing Journalist for AaronStrong Foundation

* https://www.thewatershed.com/get-help-for-your-addiction/florida-baker-act/

* https://www.addictioncenter.com/drugs/heroin/

 October 8, 2018 - Never Give Up!

GRIT Spotlight: Chris Lowe

As Hudson Lowe turned 20 years old in July of 2017, he was rumored to be the next Elon Musk. Hudson was an environmentalist, founder of Ocoee Green Initiative, and the speech winner of Florida Association of Student Councils (FASC) in 2015.

He was the kid that posted stickers near the light switches, encouraging everyone to turn out the lights when not in use. He created his own solar panels and was passionate about renewable energy. In 2016 Hudson traveled the world for a global leadership symposium as his career in environmentalism seemed to take off. 

Besides his global achievements, he was also a funny, handsome young man who loved playing the guitar, drums and flying through a Rubik’s cube in seconds. He was, as his mom states, “an all-American kid, larger than life and set to change the world.”

But less than two weeks later, he took his own life, leaving friends and family shocked and devastated. As his family grieved and began to work through the pieces of his life he had left behind, they found a notebook that expressed his biggest dreams. They read Hudson's words, “I want to start a non-profit and call it Our Green Future.”

The non-profit exists today, and the mission statement is “To promote a sustainable world and a greener future, for each and every person. With a focus on sustainable solutions, climate action, and education of today's youth, Our Green Future, Inc. is working towards a world of compassion and consciousness.”

Chris Lowe, Hudson’s mother, and her family began to move forward with Hudson’s dreams, knowing that they could accomplish what he wanted if they put forth the grit and determination that Hudson displayed every day.

But as she carries on her son’s mission, she is bombarded with kids and parents who reach out to her for help and advice regarding their personal struggles. So, Chris embraces the vulnerable position of opening up to friends and strangers about the circumstances surrounding Hudson’s death.

Hudson began taking Adderal during college when studying for finals. It was readily available to him and helped him focus during stressful weeks. But he soon started struggling to sleep at night and wrestled with constant headaches. So after a trip to the doctor’s office, he was given several prescriptions to combat all of the side effects. Mood swings came, sending him into a pit of depression, something that he had never struggled with before then.

The physical and mental battle raged on for nearly two years. At the time of his passing, Hudson was taking six different prescriptions. And the side of the bottle of his anti-depressant read,

“May cause suicidal thoughts.”

Hudson struggled to get a handle on his feelings, but he continued to trust his doctors. The last thing that Chris Lowe heard out of the mouth of her son was, “Mom, I know my own body, the doctor knows what he’s doing, I have got it under control. Once I figure this all out, I am going to travel the world and speak to kids about how to get through this.”

Through his pain, he was determined to ultimately use it to help others.

Chris feels strongly that the medications took away Hudson’s human instinct to fight for his life. Hudson may have thought that the pills should have been helping his hopeless thoughts when unfortunately they could have been the reason he had them in the first place.

 

Because Hudson was always the type of person to focus on the solution, not the problem, Chris is passionate about informing students and parents about the dangers of medication.

“Treat the situation before you need the med,” Chris explains.

“We all struggle with negative thoughts, whether we are 16 or 50 years old. Medication makes the highs feel really high, and the lows feel really low. We have to learn to deal head-on with what makes us anxious or depressed before we turn to self-medicating.”

She gives her listeners suggestions that can help.

1.    Think about everything you are putting in your body: Junk food, caffeine, drugs, chemicals and additives, prescription pills. Eating healthy goes a long way to helping your body to function well.

2.    Essential Oils and proper breathing methods: When you are not thinking about your past or your future but are focusing on the moment, anxiety subsides. Listening to yourself breathe in and out slowly calms down a rapid heartbeat and can prevent panic attacks.

3.    Enjoying nature: Simply walking the dog or going for a hike does wonders for a body because it is getting some fresh air.

4.    Volunteering: Helping others gets your mind of yourself and helps you have a broader view of humanity.

5.    Turning devices off: Ask yourself, do I ever completely disconnect? Turning your phone off at night and using a separate alarm clock may be just the right dose of peace and quiet that your body needs. It may be tempting to numb pain with social media, but the comparison game that comes with it can be dangerous.

 

6.    Yoga: Stretching, exercising or following a simple meditation video for a few minutes each day can bring peace to your busy mind.

When Chris travels to schools to address hundreds of students, she locks eyes with her young audience and says,

“I’m standing here, so your mother never has to be where I am. "They, in turn, listen to her tell Hudson’s story and offer inspiration as she pleads with them that they matter, they have a purpose and as Hudson used to say, “Never give up!”

To donate, visit the website: www.ourgreenfuture.org

Current Project, “Tanks a lot.” Chris Lowe is collecting tank tops to be turned into reusable bags. She needs 45,000 to represent every person in the US who passed away from suicide in 2017.

If you have any used tank tops, or t-shirts cut to a tank that you’d like to send, you can mail to:

P.O. BOX 440

Ocoee, FL 34761

 

Written by Kimberly Patton, Marketing Journalist for AaronStrong

www.kimberly-patton.blogspot.com

July 20, 2018 - What Evan CAN Do

Evan Dargis just finished his fifth-grade year at Real Life Christian Academy as well as his second complete baseball season playing as a pitcher and a first baseman. Given his medical history, these facts are nothing short of miraculous.

 

At his very first practice of the season last fall, he shows up with his bat bag over his right shoulder and his worn glove tucked under his left arm. He walks and talks with his friends, eager to start a competitive practice under the beautiful Florida sun. Some of the kids that don’t know him stare at his left Radial clubhand; how his arm is short, his wrist located where his elbow should be, and his fingers number three instead of five.

 

As the coach orders the team to hit the grass for 20 pushups, he mentions an exception as he looks down at Evan.

 

“Evan, you can do something else.”

 

The coach assumes that push-ups aren’t possible for this kid. But like anything else, Evan has figured out a way to work right alongside his teammates. He drops to the ground and digs his right arm into the dirt, lifting his body up and down with his strong right arm.

The teammates stop their pushups and drill their eyes in Evan’s direction. Coach doesn’t miss the chance to use Evan’s determination to challenge the rest of the boys. “Alright guys, when you finish your pushups, try Evan’s version!” They struggle, realizing that their “next level” is Evan’s “normal.”

When Evan Dargis was born on November 20th, 2006 to Rebecca and Brett Dargis, the ultrasounds that had prepped them for his birth could not have been more wrong. Their fourth and final baby boy was not as healthy as the gray screen had long promised.

 

They held their son as he was attached to monitors, and listened to the doctor carefully report all the defects little Evan had. The list was painfully long.

 

His heart suffered immediately with double outlet right ventricle (DORV), transposition of the greater arteries, pulmonary stenosis, atrial and ventricular septal defects. All this meant that instead of Evan’s body pumping blood in a figure eight, everything was flipped.

 

In addition to the heart troubles and left radial clubhand, his neck kinked in a severe case of torticollis, he only had a single kidney and at first, no spleen. 

 

With no spleen, Rebecca kept Evan in a bubble so that he wouldn’t catch a dangerous infection that he wouldn’t be able to fight off. She prayed for a spleen for Evan, dreaming of the best chance at a normal life for her last born. At two years old after his body grew a functioning spleen, he was able to be taken off penicillin.

 

During this tumultuous time when Evan had three open heart surgeries before age two, Brett and Rebecca were constantly gritting their teeth through difficult conversations with specialists. Each of the 11 doctors gave them a grim outlook as they looked over Evan’s chart screaming of his heart problems. Whether they were discussing respiratory or kidney function, his radial clubhand or something else, their response was always the same. “This is the LEAST of his worries. The biggest hurdle is his weak heart…”

It seemed impossible.

Amidst the constant barrage of terrible reports, they did experience an angel in the form of cardiologist Dr. Agustin Ramos of Florida Hospital for Children in Orlando. He was the only doctor from the very beginning that sincerely encouraged them in the right direction and gave them hope.

 

The Dargis family kept Evan away from the heat and did the best they could to keep him growing and gaining weight. They often carried his frail body on outings because his heart was working so hard just to keep him alive, and any other physical activity exhausted him.

 

Rebecca and Brett coped by focusing on the here and now because that was all they had. When asked what got them through, they said, “The power of prayer.’’ It sustained them through their deepest, darkest moments. The hope that flooded in changed their hearts and the prayers of friends and family cushioned them as they faltered throughout the journey.

 

The next step was Evan’s fourth extensive surgery where the doctors installed an adult-sized Contegra conduit in his heart. He spent the summer after third grade recovering at home. After the first night home from the hospital, Rebecca asked Evan how he had slept. Evan looked at her strangely, as if remembering a distant dream.

The next step was Evan’s fourth extensive surgery where the doctors installed an adult-sized Contegra conduit in his heart. He spent the summer after third grade recovering at home. After the first night home from the hospital, Rebecca asked Evan how he had slept. Evan looked at her strangely, as if remembering a distant dream.

 

“Mom, I didn’t sleep much. My heart was beating so loud in my chest. It was a weird sound that I have never heard before.”

 

His eyes glazed in exhaustion and confusion, but Rebecca knew that his heart murmur had gone away and his heart was pumping the blood correctly for the first time. Instead of the “whooshing” sound, his heart actually beat with a healthy thump.

 

Her eyes misted as she hugged her precious little boy, knowing that the surgery was successful.

After his six month check-up with Dr. Ramos, Evan had a green light to participate in competitive sports. He eagerly signed up for Tai-Kwon-do and then baseball. Dr. Ramos said, “Evan’s body will tell him if he is doing too much.” So, armed with extra padding for his one precious kidney and upper chest, he trots out to the baseball field.

 

He finds a way to play baseball despite his physical challenges. He uniquely tucks his glove under his left arm and then grabs it quickly to catch the ball. Although he sweats more than anyone else, drinks more water, and gets tired easier, Evan works hard and does what every other kid does.

 

Evan uses his little arm as a cup-holder, but also as a powerful teaching tool. He wants to encourage those who are struggling to focus on what they CAN do, not what they can’t do. He says, “Just because something is wrong with you doesn’t mean you can’t do something. I’ve got a lot of problems, but I can still do things.”

 

As an upcoming 6th grader, he doesn’t let his challenges stop him from living with a competitive drive and a compassionate heart toward others.

 

Written by Kimberly Patton

www.kimberly-patton.blogspot.com

March 20, 2017 - Malia Crushes Cancer

Megan and Glen Jusczyk were both raised in comfortable American homes, sheltered and warm. They worked hard, both playing Division One soccer and earning scholarships. In their marriage, Megan and Glen worked together in their community in Central Florida, focusing on soccer programs for kids. Success wasn’t handed to them but they had opportunities to go out and achieve their dreams. In a matter of time they would come to see that not everybody is so lucky. 

In April of 2011, a worst-case scenario crossed their paths, invading their comfortable family with a torpedo of pain and emotional torture. Their little girl Malia started complaining about her stomach at a mere two and a half years old. As Mama Megan rubbed her belly every night, she looked into her child’s face and knew something was wrong. A trip to the doctor didn’t prove fruitful until an ultrasound was ordered. Megan and Glen stared at the enemy on the screen: A softball-sized tumor warping through Malia’s insides like an unwanted guest, squeezing the life out of this unsuspecting little girl. Malia was swept up from her home and ushered into the world of doctors, needles and tubes. Megan and Glen were waiting anxiously in the hospital when they saw a line of lab coats walking towards them as if in a scene from a movie. The oncologists delivered the bad news: Stage four neuroblastoma.

Neuroblastoma is an extremely rare childhood cancer, affecting 10 children in every million, usually before the age of 5. The five-year survival rate for high-risk cases (Stage Four) of neuroblastoma is less than 40 percent. 40 percent of neuroblastoma patients are younger than 1 year when diagnosed, 35 percent are aged 1-2 years, and 25 percent are older than 2 years when diagnosed.*

Megan and Glen wasted no time and snapped right into GO mode. They researched their options, weighing location and treatment opportunities.  Boston Children’s Hospital had been rated #1 in the world for treating neuroblastoma that year. Since they were both originally from Massachusetts, it was a no-brainer to pack and move there immediately. Megan got a job transfer and worked for the insurance while Glen monitored Malia through her treatment. Neuroblastoma treatment costs at least $40,000 out of pocket, even with good insurance.  Megan and Glen’s eyes would be opened to other families going through treatment who didn’t have good insurance or worse; were single parents and couldn’t work.

The whirlwind of chemo began, coupled with a stem cell transplant, blood transfusions and immunotherapy. Malia lay quiet on the bed, receiving every tube and uncomfortable surgery with an understanding that this was the way it had to be. She didn’t throw things. She didn’t scream and say “No”, even though no one would blame her if she did. Her once timid demeanor transformed into a brave fight for her life. Malia toughened up, feeling the seriousness of the situation and finding a will within her to crush this disease.Megan and Glen clung to relentless optimism. They had no other option, and they refused to let their mind wander to the worst possible outcome. Other kids in the same units left this world and Megan and Glen grieved with those families. Funerals were becoming painfully common. Megan watched her daughter suffer, feeling as if her arms were tied behind her back, unable to help in any way. No one could take Malia’s place, and as a parent, that fact alone tortured her. But they clung to hope with every fiber of their being.

Malia was in treatment until after her 4th birthday, and in July of 2012 was declared “NED” (No Evidence of Disease). They followed up the treatment with a trial for two more years, and she is now a beautiful 8-year-old leading a normal life with her family in Massachusetts. She pitches on a softball team with ferocity, and even bravely jumps off the high-dive at the pool with a big smile on her face.

In 2012, Glen redirected his existing non-profit organization to focus on their brand new vision. After their ordeal, the Jusczyk’s immediate desire was to stretch their arms wide to love on other families.

 

"It was not an option for us to do nothing.”

 

The non-profit is called For Kids’ Sake Foundation and its mission is to raise money for neuroblastoma research and help provide for families suffering through experiences with neuroblastoma. Megan admits that running the non-profit foundation is difficult, and each event may not go as planned.

But she says, “I am never going to quit and it is not going to fail.”

 

Megan and Glen’s tenacity shouts loud, and it has paid off immensely. Next month they will be writing a check for $100,000 to go towards neuroblastoma research. Even on the hard days, this family has persevered through.

We all should be grateful for what we have. Our families. Our opportunities. Our health. But Megan and Glen didn’t want to just be grateful. They wanted to make a difference. They carry on their backs the weight of many. Their efforts are the salve and balm to the wounded ones.

For more information and to donate; visit http://maliacrushescancer.com

-Written by Kimberly Patton, AaronStrong Contributor

 November 24, 2016  - I am > FIRE

The sun rays filter through the car window, and Kris Kruse and his partners are on patrol in beautiful Lake County, Florida. It is July of 2015 and Kris has just started touring on duty as a police officer. He has always looked forward to a career in law enforcement, and now it is official. He wears the badge. His radio crackles with calls. He is living out his training on a daily basis, his future spread before him like open waters ready to be explored.

But he barely made it through 8 months of his new career when a backyard bonfire accident seared his skin, nerves, muscle and tissue on 69% of his young 21 year old body. The explosion on Superbowl Sunday 2016 caught him by surprise, and the flames licked at him for seconds that felt like eternity. He fought the flames desperately, while his friends rushed to help him. Normality would take a backseat for several months, while he underwent 11 surgeries and lived at the hospital for 97 days, mostly in ICU. His parents would sit by his bedside, crying over their once vibrant son wrapped in bandages and given a grim diagnosis.

“I was trapped inside for hours and days, unable to walk or move. Because I am naturally an outdoors person, this drove me nuts. I eventually didn’t even watch TV. If someone was in the room, we would talk. But I mostly just laid there on the bed.” Staring. Waiting. Wondering. What comes next?

“I was trapped inside for hours and days, unable to walk or move… Staring. Waiting. Wondering. What comes next?”

He worked hard to fight deadly infections, obeying the nurses and praying for the skin grafts to set well as his body started to heal at snail pace. He then had to relearn how to grip a fork, breathe normally and bravely stand with a walker. He began to practice small steps. Except that with his progress came interrupting surgeries that set him back again. The daily process was grueling, but he clung pitbull-like to hope.

“I was never suicidal. I have always had a strong spirit, and when things got tough, I knew I just had to keep moving on. I had to learn to walk several times, cramming 22 years of growing into 5 months. My long term goals felt like a million miles away. So I turned my eyes to short term goals: Cut a steak, bend my fingers, walk without a walker.”

“I have always had a strong spirit, and when things got tough, I knew I just had to keep moving on.”

The support system from outside those grim hospital walls was unreal. His Bravo Squad from the police force brought in a framed group picture that compelled him daily to fight hard. That was his team. His men. His supporters. He didn’t want to let them down and was determined to push through, so he could join them again soon. Several police departments made banners, and his room was bursting at the seams with decorations, well-wishes and colorful encouragement. Friends and strangers from all over the world rallied together, KRIS STRONG, willing him to fight tough. He received a special letter from a family he had helped back when he was first starting out as a police officer and it is one of his most precious pieces of mail. When the family’s home was broken into, Kris was one of the officers to respond. The alarm had been tripped and the front door was mysteriously hanging open. Even after clearing the house of any danger, the parents and two small boys were visibly shaken. Kris stayed behind with another officer and took a few extra minutes to walk through the house again with the two boys in tow. He encouraged them to keep their parents and family safe. Kris handed out Junior Police stickers for the little boys, and they beamed as they each wore their badge of honor. Kris gave them peace of mind as well as a mission. Strong words of encouragement from families like this renewed Kris’ passion for the job and gave him continual motivation to keep working hard to get out of the hospital.

Kris pushed himself daily to walk those extra few steps during his physical therapy. When his body screamed at him to stop running it into a brick wall, he lay back down and thought, “If not today, tomorrow.” Kris was resilient. Tenacious. Refusing to give up.

I am > Fire. This is Kris’ mantra, written with strength by a complete stranger. Kris read this phrase from a letter he received while still in the hospital, and the powerful phrase describes his battle perfectly. Kris, literally surviving fire, has come out on the other side an overcomer. He can look back and say, “Wow- fire did not defeat me. I am greater than fire.”

“If not today, tomorrow… My goals and dreams haven’t changed.”

Looking toward the future doesn’t scare him. He amazingly seems unaffected by the accident, still extremely focused on his career. “My goals and dreams haven’t changed. I want to serve on the Police Force for at least 20 years and retire with honors.” He wants to help significantly with the Explorer program, something that he was a part of as a teenager. He dreams of helping other teens train to be law enforcement officers, maybe getting the program running going in other counties.

He knows that it will take a while but wants to get back on the streets, patrolling and providing security for his city. He loves being the one to answer a person’s last call of desperation. While they are in their worst moments on a fierce search for help, he can be their answer. Kris sees being a police officer as a great way to give back to the community, and he enjoys watching civilians transform from a place of desperation into something positive. As of October 31st he is back at the Police Station working again.

A couple weeks ago, Kris shot his gun at the range for the first time since the accident. He was stillssensitive from all of the nerve damage and re-growth in his hands. But the crack of the gun and the familiar blast put a huge smile on his face. He shed his humble spirit for just a moment, grinning with pride at the accuracy of his shots. “I still got it.”

Yes, Kris, you do. 

Written by Kimberly Patton, AaronStrong Contributor

June 25, 2016 - AaronMickel

It’s only fitting that the first “Grit Spotlight” would be about an ‘Aaron’.

 

Aaron Mickel was born a premature twin whose parents, due to complications, could not bring him home for four months after his birth. Fast forward 20 years, add a wife and a daughter, and its clear to see how this State Correctional Officer overcame the odds then and is continuing to do so now.

 

Aaron and his daughter share the same pediatric physician. To this day, there’s not a visit to the office where that doctor neglects to remind Aaron that he’s one of the miracles he had the opportunity to experience in his years of practicing medicine.

 

Now, Aaron has a chance to become a two-time miracle.

 

After dealing with what seemed to be an annoying cough since 2014, Aaron recently learned that there was something much more serious going on in his body. Aaron is in need of a lung transplant - two, to be exact. Double Lung Transplant patients, unfortunately, currently have a higher demand than what can be supplied. A waiting list of up to 2,000 patients are in this fight, hoping daily for their name to be called.

“You can’t make any situation go one way or another unless you do something about it.”    -Aaron Mickel

 

Many people in this situation might have a desire to sit back and to just hope for the best. Not Aaron. Facing this new challenge Aaron stated, “You can’t make any situation go one way or another unless you do something about it.”  Doing something about it started with an attitude and a mindset. Aaron’s overwhelming positivity and zest for life are evident, even over the most basic phone conversations. Aaron claims, “For whatever reason, I’ve always had an innately positive perspective as long as I can remember.” This admirable quality of positive perspective has been heavily tested since his diagnosis in early 2015.

 

Eventually, 2016 comes and brings with it, as is tradition, a sense of a fresh start, a clean slate, to re-do and find certain areas of one’s life to improve upon. For Mickel and his family, this fresh start of a new year wasn’t even 48 hours into existence when they received a phone call that would be the definition of a clean slate.

 

A donor had been found.

 

Aaron would have his Double Lung Transplant surgery the following morning. A frenzied panic of emotions overwhelmed the Mickels as they hurriedly packed for the hospital, made phone calls with tears in their eyes, happily announcing to friends and family that they were making the trek to Jacksonville with the plan of returning a few days later with a new man with a new set of lungs.

I find it hard to believe that there has been a more joyous moment than receiving that phone call.

 

Following that joy, that happiness, Aaron’s innately positive perspective was then given, by far, it’s greatest test to date. Aaron and his wife Stephanie weren’t but 30 minutes outside of Jacksonville when the phone rang again. False alarm. There was a blemish in the donor’s lungs that would make the transplant for Aaron ineffective. And just like that, the slate is wiped clean again.

 

One might be bitter, even angry, and rightfully so. Aaron’s response...

 

“I told them I was thankful to have even been given a call. I was thankful for the processes that are followed to ensure the safety and longevity of a transplantation.”

 

Aaron’s pattern of positive perspective, habitually looking for the silver lining in every single situation, every single day, are unmatched.

 

What shouldn’t and can’t be lost in this story, is the power of strength, support, and love shown by Aaron’s wife, Stephanie. Stephanie has been writing an online blog since day one to allow family, friends, and hopeful strangers to follow Aaron’s journey to a healthy life. The words written on the blog are so much more than words on a page. One can’t help but feel the joy, pain, and humility when reading her narration of this journey that they have been on together.

 

Much like the Bultema’s, the Mickels have chosen to be very public about Aaron’s journey to renewed health. This choice alone is bold. To invite the world into such a personal aspect of their life, exposing themselves at their ultimate state of vulnerability.  As it turns out, there is power in such a vulnerable state. People have flocked in support of Aaron’s cause. Events including a motorcycle run, local radio station’s holiday drive, a ceremony through his place of employment, along with a crowd funding campaign have emerged all in support of Aaron’s journey to a healthy life.

 

The Mickels have a very basic goal through sharing Aaron’s story - to inspire others to embrace all areas of life.

 

“If we are able to enrich our own lives through a positive perspective, then our hope is that will spread to others to do the same. The things that can be done in this world with hope and faith are endless.”

 

By human nature, it is easy to withdraw and hide the world from the difficulties we may encounter. To not face an obstacle head-on might seem easier, safer.  And that may be true.  But the Mickels are proof that, while probably more difficult, confronting an issue, “doing something about it,” and, most significantly, being open and vulnerable about your challenge can be far more impactful.

Written by Brian Dempsey, AaronStrong Contributor