Out of the "Lymelight": Adventures of a Warrior

 

Introducing a Warrior 

I am a 46-year-old wife and mom who loves Jesus, journaling, reading books, taking photographs, and gardening.  I am passionate about language and writing poetry, and I have been blogging for over ten years.  I write for another blog called, Broken Places, which has been my labor of love.  Two years ago, I attempted to launch a writing and consulting business; however, keeping up with two teenage boys and having a small business out of our home consumes most of my time.   I help my husband nurture and grow his small franchise business, and we mentor young men and women on both personal and professional growth.  Once or twice a year, we travel across the country to learn about the trade and meet other business owners.  We love meeting new and interesting people and encouraging them in their endeavors. 

 Even though I spend a considerable amount of time interacting with people, I am truly an introvert at heart.  I am not much for small talk, and I get the most enjoyment out being focused and driven.  I would rather get down to real issues and deep topics in my conversations, and I am energized by having time to myself-- reading, reflecting, and writing.  

I thrive on challenges, and once I set my mind on something, I tend to be strong-willed and stubborn.  That is how I became a warrior- tough, determined, and full of grit.  I needed to be a warrior to survive because I have been through an extensive battle that I wouldn't have wished on my worst enemy.  It all started on Labor Day, 2009, when I was out to the lake cabin and discovered a tick bite that would forever change my life.  Two years later, I was diagnosed with chronic untreated Lyme disease.  By then the disgusting cork-screw bacterium multiplied and burrowed throughout my body, invading my nerve tissue and organs.  I was fighting for my life and sanity with no definitive answers, resources, or adequate medical care.   I discovered that Lyme disease has been grossly misunderstood by the medical community and general public, and I figured out rather quickly that I was on my own.  If I wanted to survive, I would need to dig deep into my faith and push for every possible resource I could find.  It was the most difficult, life altering, terrifying, and rewarding experience of my life.  That was the start of my warrior adventures.

Vacation to Mount Rushmore and Bear Country in 2015

The Battle

For over five years, I was house-bound and semi bedridden with Lyme disease, con-infections, and a condition known as CIRS or Chronic Inflammatory Response Syndrome.  With these conditions, getting out of the house was an ordeal.  In 2015, our family went on a trip to Mount Rushmore to celebrate my daughter's sixteenth birthday.  I spent most of the trip in bed feeling sorry for myself because I wasn't able to get out and enjoy sightseeing with my family.  Determined to spend some time with them, I pulled myself out of bed to visit a tourist attraction called Bear Country.  My legs gave out at the outdoor arena, and I was overwhelmed with weakness and vertigo.  I was feeling discouraged and defeated and asked my husband to help me to the van.  On the way out, we noticed a visitor wheelchair sitting near the entrance, and my husband suggested we borrow it.    It was embarrassing for me to take this first step; however, having a mobile device offered the possibility for me to spend more time with my family.  The experience was a foretaste of the adventures to come.

 That year, the battle was intense as the disease ravaged my body and nervous system. I was once again flattened by this life-altering illness; however, I refused to give up.  Tapping into a very personal relationship with Jesus and a willingness to try anything to overcome the disease, I spent my time in bed reading my Bible as well as researching nutrition and other healing methods.  Through a painfully slow process, I steadfastly emerged from the dark pit of Lyme.  With a wheelchair donated by a member of our church, I tentatively stepped into the possibilities.    

First Time out Shopping, Summer of 2016

Emerging from the Pit

Two years after our family vacation, I was steadily engaging in family activities; and my teenage daughter decided it was time to for me to get out in public again.  She wanted her mom back.  My daughter researched mobility options by stopping at a local Target store to inquire about their scooter systems.  One day, she announced that we were going shopping together. I was hesitant to try something new; however, she was persistent and made it happen.  It was a huge step, and we both were very excited!

"Extraordinary things only happen to extra ordinary people"  --C.S. Lewis

Raising Awareness

After that first step, outings became a regular thing for us, and we wanted to raise awareness about the struggles we faced.  In 2019, my daughter and I decided to vlog our experiences.  We produced a YouTube series called "Heart of the Dragon" to describe our encounters with chronic illness.  The series was named after an adventure in the novel, "Voyage of the Dawn Treader" by CS Lewis.  The adventure described how a boy named Eustace was forced to address his physical and character flaws by becoming a loathsome dragon, and in doing so, he was transformed into a noble warrior.  The dragon concept became a metaphor for rising out the ashes of illness to be transformed through the process of sanctification.  The videos were of low quality; however, we had a great time making them.  We used videos to document many of our outings and adventures.  In those video escapades, we highlighted my determination to take my life back, and we shared many of my firsts.

Warrior Adventures

A consultation with master stylist, CJ Nelson

I had my first professional haircut in almost ten years!   

Nickelodeon Universe at Mall of America

For my daughter's 20th birthday, I went on my first rollercoaster ride in over two decades! 

Trip to Branson for the Huge Convention, 2019

In August of 2019, we took a family vacation to Branson where I attended my first Huge Convention with my husband.  While in Branson, we created videos about our experience and produced an episode unveiling the blessings and challenges involving our trip.  It was definitely an unforgettable experience!

 

The Battle of Grief and the "Way of Love" 

This warrior embarked the year of 2019 strong, feeling ready to conquer the world.  That world crashed on Thanksgiving when we were held back from visiting my folks from Kansas because of an unexpected snowstorm.  The following Monday, I received a phone call that my mom was having difficulty breathing and was hospitalized with pneumonia.  The Christmas season was bittersweet as the Lord called me to demonstrate a new "Way of Love" in the care of my mom while facing the inevitable.  A month later, I said my final goodbyes and let her go to Jesus.  It was one of the hardest things I have ever had to do; however, it was the Lord's providence for her be at peace as she was spared from an upcoming pandemic.

A Kansas Sunset ended 2019 

Pandemic Warrior

Two months later, the COVID 19 Pandemic hit, and this grieving warrior was forced into an unaccustomed arena of bitterness and confusion.  At that time, my daughter and I made the decision to discontinue our vlog and focus on keeping us all safe and the family business afloat.  In October of 2020, my husband contracted COVID 19 and was hospitalized for two weeks.  With limited knowledge and resources available, it was a terrifying time for our entire family; however, we held firm to our faith and got through it.  At that point, I lost any desire to make videos or blog about our adventures.  The COVID 19 pandemic instigated an unprecedented battle that I wasn't prepared to engage in.

Trip to the North Shore to Celebrate 20 Years of Marriage!

Diversified Adventures

In 2021, my husband and I wanted to move past the pandemic battle as we traveled up North to the places where we met and fell in love.  Together, we celebrated 20 years of marriage at the North Shore, and we were ready to make a fresh start for our lives and marriage.  Though the grief and emotions involving the turbulent times had not subsided, we made a commitment to embark new diversified adventures with our family.

It has been a very tumultuous thirteen years, and this warrior is exhausted from all the sickness, excitement, heartache, and mixed blessings.  Although I am worn out, I am not ready to give up anytime soon.  We may not have any video exploits in the future; however, there are plenty of quests ahead of us.  Only the Lord knows what those experiences will be.  Grief and hardship take a toll, yet the Lord will transform these adventures into something unexpected and glorious.  

Here is an excerpt from our 2022 family Newsletter summing it all up:

"Bereavement and human suffering are difficult to comprehend in these earthly bodies, but we were made for something greater, and the Lord uses these struggles to more clearly reveal His enormous love and power that stretches far beyond our mortality.

May we cherish moments with our loved ones and give each other enough grace to comprehend that these 'light and momentary afflictions cannot compare to the future weight of glory beyond comparison, as we look not to the things that are seen but the things that are unseen.  For the things that are seen are transient, but the things unseen are eternal.'- 2 Corinthians 4:17-18

May we keep our eyes heavenward and focus on the blessings that brought joy and unity among us.  May this be a year of rediscovery and revival as the Iridescent Hope of the Lord's promises seep into our existence." 

_______________________________

Iridescent Hope

The world around us propels at breakneck speed and delves into the shadowed realms in which we strive to grasp what drives our futile longings to achieve.

When we love, we laugh, we sigh, we weep, and we grieve—our sorrows and muted desires blend instinctively into a kaleidoscope of distant thoughts and uncertain dreams.

When we’ve reached the bottom of cisterns opening our empty souls to infinity, we encounter the Iridescent Hope that which invaded humanity in the frailty of an infant King born to save us and set captives free.  

His tiny fists clenched, those wee little hands that one day would open up to carry our burdens nailed to the path of cruelty in the bittersweet arms of Calvary.

The world around us is marred by hate, division, unforgiveness, and ugly brutality. 

We weren’t made for such despair, as our hearts were designed to seek mercy in the gentle unity of sacrificial love manifested by the Iridescent Hope of our God King!

—Darcee Zehm

“The Steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.”  Lamentations 3:22-23

______________________________

For More Information about Lyme Disease Awareness:

About Chronic Lyme:  http://dzehm.blogspot.com/2012/12/chronic-lyme-disease.html

                                  https://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering.html
                    
                               https://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering-2.html

My Story:    http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

                       https://dzehm.blogspot.com/2015/07/the-good-fight-my-lyme-relapse.html

                       https://dzehm.blogspot.com/2016/09/the-lyme-labyrinth-crushed-spirit.html             

                       https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-1-healing-through.html      

                      https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-2-lessons-ive.html

Letter to Lyme

My Son Got Lyme

Nancy's Story:  http://dzehm.blogspot.com/2014/10/the-voices-of-lyme-voice-of-hope-nancys.html

Logan's Story:  http://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html

Sally's Story:  http://dzehm.blogspot.com/2015/02/the-voices-of-lyme-voice-of-battle.html

A COVID Survival Guide

The COVID Pandemic

On March 11, 2020, the World Health Organization declared a global pandemic with the virus known as COVID-19.  Like a dystopian novel, everything changed as our society encountered widespread panic in which store shelves were wiped clean and toilet paper became a scarcity.  There was fear of a virus that no one really knew anything about and hit our vulnerable citizens with a vengeance.  There were widespread travel bans and various state and local mandates.  Hospitals, nursing homes, and assisted living centers shut out the public.  Surgeries and procedures were canceled, and people had limited access to medical care unless they were in a critical situation.  People were told to stay home as schools and churches closed and businesses were ordered to cease operations.  Everyone home schooled and attended church at home.  People did not see each other except on Zoom, and when they could get out, they peered at each other behind face masks. Everyone started talking about things like "fake news" and "plandemic", and we began to question what was real and what to believe.   Extreme partisan divides and polarization on political idealization widened the gap as people raged from their position of whether to mask, get vaccinated, or even step outside of their homes.  As the political and societal tensions elevated, many of us asked ourselves if the world had gone mad! 

COVID Hits Home

Seven months after the pandemic started, COVID hit home for our family when my husband was tested positive.  Because he tends to be a very stubborn hard-working man, my husband was determined to not let a positive diagnosis hold him back; however, the virus flattened him in the wake of his compromised respiratory condition. The downward spiral of symptoms was rather alarming as we spent our 19th anniversary with my making arrangements for him to be transferred out of a rural hospital.  I used my experience as a social worker to advocate for my husband and request that medical professionals from the VA authorize the transfer to a facility that would be able to offer the skilled care necessary to combat this illness.  It was an extremely stressful and upsetting time, yet God worked through the entire ordeal.  Thankfully, he did receive approval for the transfer to a COVID unit that had a medical team with the knowledge and compassion to offer the necessary treatments and care.  The hospital did not allow visitors on the COVID unit, so our family had nightly Facetime meetings with him in which the kids read scripture and recited prayers.  The hospital staff cautioned my husband about overexerting his limited lung capacity, therefore, the kids and I did most of the talking during our nightly Facetime gatherings.  Thankfully, once he made it through the worst of the ordeal, his recovery came back quickly.  

Our extended family came together as my husband and two of his sisters were hospitalized with COVID over the fall and winter.  His middle sister requiring sedation as her infectious control physician felt it would be best for her to be in a medically induced coma for her lungs to heal. Hardships have a way of leveling the playing field and humbling us.  Facetime and family Zoom conferences were precious treasures for our family as we came to the realization how little control we have over our own destinies.  Times like these put things into perspective by bringing awareness to how small we really are and how we reduce God with our finite understanding.   These hardships are the groundwork for survival in a COVID world.

SURVIVING A COVID WORLD

No matter what philosophy, political platform, or perspective we carry, no one can deny that the COVID pandemic of 2020 has been an unforgettable world event.  Many of us have questioned if we were facing Armageddon as news reports become more troubling and surreal.  Truthfully, throughout history various cultures have encountered famine, sickness, persecution, death, and unimaginable horrific circumstances at one time or the other.  I think as American's we forget that the world does not revolve around us, and there is a bigger picture than what we can see.  I am not minimizing the hardships and trauma that many have faced during this pandemic.  The events of the past year have opened our eyes to circumstances beyond our comfortable self-absorbed existence.    It has been a very troubling year; however, until we make a conscious effort to shut off our television sets and social media for reprieve, we will be easily swept up in a tidal wave of gloom and despair.  The first step of survival is stepping back and evaluating both the world events and our attitudes from an outsider's perspective to identify wisdom and reality.  Survival starts in our minds and the attitudes of our hearts!

RENEWAL OF CHOICE

Last September, I posted an article on the "Culture of Change in a COVID World."  I wrote these words to describe my commitment to renew my mind and heart daily by refusing to allow societal negativity to affect my spirit.  This is what I wrote:

"As we approach the last four months of a crummy year, I have been taking a pause to re-evaluate multiple aspects of my life and implement some significant changes.  I have taken a critical look at the overall purpose and mission of our family as well as my personal achievements.  I am striving to reduce and/or eliminate ANYTHING that is unproductive or irrelevant to this mission which includes what I am focusing on, thinking about, viewing, reading, listening to, eating, putting in my body, and saying.  I am committed to taking at least an hour a day to reprocess my focus and replace that was previously negative and not beneficial with what is helpful, useful, healthy, and most of all honors God.  I am committed to doing a better job at taking care of myself so that I can best serve my husband and family.  I am committed to giving myself some grace to recognize I am a human residing in an ugly fallen world and forgive myself as well as others.  Although I choose to take moments to track news and events, I am committed to shutting it down regularly and keeping it in its place so that it does not create fear, anxiety, dissension, or hopelessness for me and/or my relationships.  Finally, I am committed to laugh more, smile more, and NOT allow these things to steal my joy.  I hope and pray we can all take these ugly times to turn to God Who can recreate it into something beautiful."

In the wake of a renewal in my perspective, I have come to the realization we cannot stop COVID or the global response to this pandemic.  We cannot change the legislative response to the pandemic or the views of our fellow Americans.   We cannot change our circumstances; however, we can turn to the One Who Never Changes and BE THE CHANGE by His transforming power.  I am uncertain what tomorrow will bring, but today I embrace each day with determination, grit, and joy because He is enough.

_______________________________

JOYFUL TREASURES:  Count it All Joy

"Count it all joy when you face trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing."  --James 1:2

Life's winter season always come to an end with the unfolding of Spring.  Our suffering may be for a moment; however, the "Blessed Controller of All Things" will somehow meet us in our place of hardship to carry us through the valley.  Someday, we will receive our reward for these hardships.  Victory comes not in what we have done to overcome our sorrows; but what our Creator has done for us. 

_______________________________

Our 2021 Family Newsletter

Dear Friends and Family,

 Given our current world events, it seemed fitting to write a letter of encouragement. Thanksgiving last year, we received the call that any child dreads (no matter the age), and our holidays were consumed in calls and visits to the hospital as well as planning a funeral on New Year’s Eve.   Providence often leads to perfect timing, and we thank the Lord for being spared the heartache of having to endure the circumstances ending 2019 as they would be today in the wake of our 2020 pandemic.

The year 2020 has been an unprecedented time of unfolding a global health crisis, political division, and chaos, to top off a weighty year of grief for some of our friends and family who either received the news that their cancer is back or experienced the unexpected departures of children, spouses, parents, grandparents, relatives, and friends.  Unsettling circumstances such as unemployment, financial hardship, sickness, loneliness, isolation, and quarantines have touched just about every household.  Hardships have a way of leveling the playing field and humbling us, which was certainly true for our family as Mel spent 2 weeks hospitalized with COVID last October.  With Mel being in isolation, nightly Facetime meetings and family zoom conferences became precious treasures that brought us all together, and we came to the realization of how little control we have over our own destinies.  Times like these put things in perspective by bringing awareness to how small we really are and how we reduce God with our narrow lens. It also has given us more appreciation for what we previously took for granted.

 No matter how bleak things may appear, we must remember that we also have reasons to be encouraged, thankful, and have hope.  Here are a few thoughts to ponder as we end a year many would likely soon forget.  God is still in control, and He often does His greatest work through perilous situations.  Answers to prayer frequently unfold in unexpected ways, and “Thy will be done” is by far the most difficult to come to terms with, but when we succumb to His will we are right where we need to be.  We must remember that everyone is facing some sort of battle and give each other grace.  It takes insurmountable courage to let go, forgive, and to love in hard ways.  If we live each day as if Jesus is coming back tomorrow, we can by the grace of God purge trivial and unnecessary aspects of our lives to live and love more freely.  When we love hard and love big, those small steps can make a difference..   Terms like “the new normal”, “pivoting”, and “we are all in this together” may seem overdone, but we have the opportunity to find new and creative ways to demonstrate our care for each other and be a blessing. We are looking for opportunities to bless others in 2021, and we pray that you will be encouraged and find hope in the New Year. 

A Winter Solstice Lullaby

 Oh Bethlehem… out of you will come One who will be Ruler…  whose origins are of old… from ancient times (Micah 5:2)

For the dusky night watches in the winter sky, they prevail for the world to search a mighty Hero

His summons was a whisper of an entrance— like Elijah escaping the scream of the gale to find His Maker in the faintest of breaths—a King quietly awakens the womb lowly, unassuming

The hands that put the stars in place and laid the foundations of the earth clasped in the arms of a mere whisp of a girl who nestles gently with her King son, singing Him a sweet winter solstice lullaby

No one dreamed their conquering Ruler would unveil as “the word became flesh”, the manger Child, fragile  holy Redeemer— a paradox for grace and peace 

Heralded by angels, shepherds, and sages of old… though completely missed by rulers and kings… the King of Kings came, to be smitten and crushed, and He died to redeem

Oh winter solstice, your stars and planets tell the story of our conquering King, and our weary hearts bow down in yearning anticipation for His return like a thief to heal our harms and unite our dreams. 

“Behold He is coming in the clouds…”  (Revelation 1:7)

 

 For more information about surviving a COVID Pandemic, you can read my blog written last September:  COVID Culture of Change

Grief and the Holiday Blues

It is "the most wonderful time of the year."  Christmas caroling, holiday parties, secret Santa and white elephant exchanges, cookie exchanges, baking extravaganzas, Christmas concerts, and family gatherings are some of the many events people look forward to when approaching the holidays.  Christmas music, vibrant lights, and delicious scents exude an ambiance of joy and goodwill.  We should all relish in the season of giving and holiday cheer, right?   I have a confession to make.  Christmas is less than a week away and I haven't ordered any Christmas cards, and we do not have any presents under our tree.  I haven't baked anything and none of our kids had any concerts or holiday events at school this year.  The pile of Hallmark Christmas movies and Christmas CD's that I usually indulge remain unopened.  This is not a typical situation in our home.  I may sound like a complete "scrooge", but truthfully, I want to enjoy Christmas, and given where I have been, it shouldn't be hard to find delight in the season of hope.  I have so much to be thankful for and countless blessings, yet my soul feels weighed with a tremendous amount of heaviness.

The Christmas season is a joyful, generous, loving, tumultuous, aggravating, and lonely time that evokes a variety of memories and emotions that tends to bring out the best and the worst in people.  It may seem like everyone else has it all together and are making it happen, but the holiday blues is actually a very real and normal situation for many of us.  I usually find Christmas to be one of the "best times of the year", and I don't understand exactly what made this year different for me.   I have recently experienced so many breakthroughs that should cause me to celebrate these victories; however, it seems like as I make strides in my own life, I take notice of circumstances and disappointments that are dragging down the people I love.   I hurt for them, plain and simple.

At church Sunday, our pastor preached a beautiful sermon on why we should be experiencing Christmas hope and making a "joyful noise" when we come before the Lord in song; however, when the Savior songs filled the sanctuary, I opened my mouth to sing the familiar carols and my lips fell silent.   Instead, I closed my eyes and found myself a little girl again at my Grandma's house, the sights, sounds, and tastes of Christmas very real and almost too much to bear.  My heart ached, and I just rested in the sacredly reminiscent moment.   Not wanting to drag out my holiday doldrums like dirty laundry to air out, I pasted on my best smile after church and gritted my teeth through greetings and pleasantries.  As the sanctuary began to empty out of cheerful carolers, a woman approached me and said to me, "I have a message for you from the Lord." With an emotional and compassionate voice, the woman shared with me that the Lord has taken notice of the long hard battle I have been experiencing, and He simply wanted me to know that I needed to trust in Him as He carries me through this extremely long season of suffering.  That was the moment that the dams broke and the tears flowed, humble tears and sacred tears knowing that God took notice and loved me enough to give a special message of hope through this devoted child of His.  Her kind words were just what I needed to hear, that my Savior wanted me to know that I am precious and loved and that it is OK to grieve.  He takes me just as I am.

It is easy to expect that we should have a certain attitude or perspective about Christmas, and if we don't meet those social norms and cultural expectations, we should feel guilty or ashamed of ourselves.  Maybe we put too much emphasis on the expectations of how the holidays should be and overlook the true meaning behind our Savior's birth.  I like to think that the Lord is taking my sorrow and grief and turning it into a sacred moment of hope by bringing me to a place of needing to totally depend on Him.  Perhaps, I am exactly where I need to be, and it is enough!

_______________________________

JOYFUL TREASURES:  Be Kind

"Be kind because everyone you meet is fighting a harder battle"  --Plato

Don't forget that each one of us is facing a battle of some sort and so many are grieving, especially during the holidays.  When we change our outlook on humanity and see each other as image bearers of God amidst very real and hard struggles, it levels the playing field so that we can demonstrate more kindness and compassion for each other.  

_______________________________

For more information about making it through the holidays:

https://puresimplewholeliving.blogspot.com/2018/11/surviving-holidays.html
https://www.youtube.com/watch?v=r-Kq-RFCekI&t=2s

Victory at School : Parenting a Child with a Disability or Illness

Being a parent is an incredible blessing that is not for the faint of heart.  Our children are our greatest gifts, designed with unique personality traits and gifts.  They also come with individual challenges and struggles.   When parenting a child with a disability or chronic illness, we often face our own grief and heartache in watching our children struggle and suffer.   It is a difficult place to be; however, we are our children's primary support system and greatest advocates as parents.  It is our responsibility to love them unconditionally, come alongside them, and help them to achieve victory over challenges in different aspects of their lives.  When I describe victory, I'm not talking about "fixing" them or changing who they are.  I'm not talking about changing circumstances beyond our control as parents of children with special needs.  Victory means helping them to be their best and feel their best despite the challenges, pain, and suffering they are enduring with their disability or illness.  That may mean giving up some of our ideals and expectations as well as overcoming any denial or grief that may be holding us back in providing the support they need.  In whatever capacity we are called, we can be victorious.

Daycare centers, schools, and education systems are often some of the most significant areas of influence and challenge for our children--areas we must stand firm in advocating for our children and covering them in prayer.  My husband and I have been navigating developmental and disability education services for over eighteen years, and we have now experienced the full spectrum of these services from the Birth to Three program to college disability services.  Although we have been open with our friends and family about our children, until recently we haven't been publicly open about specific disabilities out of respect for their privacy.  We also did not want our child to be labeled or judged; however, our 20-year-old daughter recently decided to come out publicly regarding her struggles and strengths with being on the autism spectrum.  We couldn't be prouder of her for taking the risk to share her testimony with others.  Additionally, our daughter and her brother have also been battling chronic illnesses from Lyme disease and co-infections, as well as with trauma from head and neck injuries.  It is excruciating to watch a child suffer with these conditions, and I would much rather take on their pain and suffering for myself than have to see them hurt.

We have been blessed to be a part of a small-town school district that is very caring and willing to work with us and our children.  I can't say that all of our experiences have been positive as early on, we encountered both a classroom teacher and a special education faculty member that were not only uneducated about our daughter's developmental delays, but insisted that we needed to "fix" her so she wouldn't be a "burden" in the classroom.  This was partially due to a misunderstanding, misdiagnosis, and misuse of the school's Individual Education Plan (IEP).  Fortunately, the special education faculty member decided to move on to a different school district the following year and was replaced with someone more aware about our child's disability.  Mrs. Malecek immediately picked up on where the miscommunication was and spoke up for our daughter's individual needs.  She was willing to advocate for our child, help teachers understand the situation, and guide us as parents as to how we could be the best for our child as well.   Mrs. Malecek stayed in touch with our daughter throughout her education, frequently encouraged her to share her unique gifts/talents, and expressed her delight when our daughter graduated with honors and received several scholarships for college.  We still hold a special relationship with her after all these years.

We have also experienced working with faculty in regards to the struggles with chronic illnesses, which required us to schedule meetings with teachers and disability service coordinators at different school settings to discuss how we can best serve a child's needs when battling chronic pain, fatigue, and neurological challenges from Lyme disease, injuries, etc.  This past year, our middle school principal and assistant principal have exceeded our expectations in going way above and beyond the call of duty to encourage and support our son.   When our son was at his lowest point, I shared one of my blog articles in order to help school faculty understand the underlying suffering and pain that a child with Lyme disease might be experiencing.  It was very eye opening.  Facing disabilities and chronic illnesses can become a tough situation for parents and school staff alike; however, when we work together, we can rise above the circumstances.

How do we achieve victory in the school setting?  It takes a collaborative effort between the student, teachers, faculty, and the parents.  It is important to have open and regular communication.  It is imperative to speak up for your child but at the same time do whatever you can to view the situation from the school faculty's perspective.  Open and honest communication is a must.

WHAT CAN PARENTS DO?

• Speak up for your child as you are their best advocate
• Take a careful look at the child's Individual Education Plan or IEP to be sure it is accurate, especially look for what diagnosis or disability code is on the IEP (be cautious if your child is put under a "behavior" classification if there isn't clear parameters about his/her diagnosis which could skew the perception of the child's disability)
• Recognize that teachers and school faculty are human--they might be dealing with large classrooms, budget issues, and other things out of their control that could cause frustration at times--everyone has good and bad days
• Try to keep communication as positive as possible, work with the school on coming up with feasible solutions for helping your child succeed
• If a situation arises, always get both sides of the story--things aren't always what the appear at first and miscommunication happens
• Encourage your child to be as independent as possible in the classroom setting, set positive goals with them
• Don't minimize your child's frustrations and worries as this only makes them feel like you don't believe them
• Recognize that bullying is common for children with disabilities, especially those on the spectrum who struggle with social issues--your child needs to have a safe place at home to feel loved and supported
• If your child is dealing with a chronic illness but doesn't qualify for an IEP, you can still work with the school faculty on other options and disability accommodations such as a 504 disability plan
• Look into other specialized services outside of the classroom such as additional physical, occupational, or speech therapy as well as therapies for sensory processing disorders, and/or social skills, vision therapy, tutoring for specific learning disabilities, etc.  (these therapies and services can be especially beneficial early on-- the goal is to help the child to thrive or feel their best, not "fix" or "cure" them)
• As your child reaches their teens, give them more control over their education as you shift to a mentor/coaching role--encourage them to speak up for themselves in the classroom and ease into a more independent role as they finish high school (this will help them to be more prepared for college)
• When your child is looking at a college or university, help them investigate what type of disability accommodations are available and who to contact to discuss individual needs (in a college or trade school setting, the student is in full control of how they utilize their disability services)

WHAT CAN TEACHERS AND SCHOOL FACULTY DO?

• Look at the child's strengths and focus on what they can, NOT what they can't do
• Rise to the challenge of modifying your educational environment to accommodate their individual needs instead of seeing their disability as a hindrance to the classroom
• Learn what subject child is passionate about or what clicks for them and build on that (for my daughter, it was the music program)
• Find a teacher that connects with the student at some level (my daughter had a special connection with her band and choir teachers, and she observed a fellow student who was somewhat impulsive thrive when he had a personal connection with both the shop teacher and janitor which made all the difference!)
• Be aware of your conversations in the classroom as other students may be listening, especially if you are discussing a particular student with a disability
• Be aware that students do notice when a child has accommodations and they will perceive them in a different light (bullying is common in the classroom, gym, playground, and cafeteria--especially those who struggle with social skills)
• Be patient with the child who may be struggling with low self-esteem and frustrations with their disability
• Recognize that parents might be dealing with their own emotions of grief, denial, and misconceptions about their child's situation
• Find ways to help the child feel more in control of their education and their privacy (involve them in organizing their desk/locker, allow them to opt out of doing a group project with other IEP students if they wish to do something independent, etc.)
• Team up with the child and their parents to come up with positive solutions, allow them to have feedback on the IEP and other disability accommodations

WHAT CAN THE DISABLED AND/OR CHRONICALLY ILL CHILD DO?

• Be honest and real about what you are going through at school and in the classroom, don't hold back or hide your frustrations and worries but find a trustworthy adult such as a parent, teacher, counselor, or youth pastor to talk it through
• Speak up for yourself -- aside from your parents, you are your best advocate
• Recognize that your teachers and your parents are both human--they will have good and bad days as well as misunderstandings about your situation
• Strive to be as independent as possible in the classroom; however, recognize your limitations and ask for help when you need it
• Connect with other students in similar situations--maybe you can help someone who is struggling by honestly sharing your experience
• Take time to educate yourself about your specific disability or illness as knowledge is power!
• Figure out what makes you click, what are you interested in-- as you get older, you can take classes and/or join organizations that revolve around that interest (my daughter claims that band saved her when she was going through some very troubling times, and she took every music class possible and engaged with her band/music teachers to discuss music composition, instrument repair, and other activities revolving around her interests)
• It may be difficult to rise above the challenges, especially when it comes to bullying at school; but it will get better, especially after high school (it may not seem like it now but trust me it will!)

_______________________________

JOYFUL TREASURES:  Love your Child Unconditionally!

" There needs to be a lot more emphasis on what a child can do instead of what he cannot do."  --Temple Grandin

My daughter wasn't interested in typical teenage girl pursuits like dating, parties, and prom; however, I wouldn't trade her brilliant quirky talented personality for anything!  Sometimes we need to let go of our expectations and just love our children.   When we allow them to shine at what they are good at, anything is possible!

_______________________________

For more information about the autism spectrum and parenting a child with a disability or illness:

http://dzehm.blogspot.com/2013/04/april-is-autism-awareness-month-and.html

https://puresimplewholeliving.blogspot.com/2019/08/victory-on-spectrum-perspective-on.html

https://puresimplewholeliving.blogspot.com/2019/06/victory-at-home-message-to-parents-of.html

https://www.youtube.com/watch?v=xsLw5-pnn-4

https://www.youtube.com/watch?v=iC5ZZXU_K7E&list=UUd_4i499gWV_zjSWUEqw6-A&index=8

https://www.youtube.com/watch?v=eRashDpehFA&list=UUd_4i499gWV_zjSWUEqw6-A&index=14

https://www.youtube.com/watch?v=lNMxAiK8c_I&list=UUd_4i499gWV_zjSWUEqw6-A&index=15

Victory Over Optical Illusions: a Perspective on Autism

My daughter and I recently started to put together a series of videos about our family's daily experiences with chronic illness and disabilities.   We both have a desire to use our challenges as a testimony so that we can rise above our circumstances and help others have insight.  Our mission is to inspire those who have their own struggles to get out of their comfort zone and share their stories.  I have been blogging about living with chronic Lyme disease for more than seven years and have made this a platform for my ministry to encourage others and to pursue joy in all circumstances.  In doing the vlogging series, Heart of the Dragon, we have taken these experiences at another level with candid videos about our daily pursuits. In these pursuits, we decided to come forward publicly and share her testimony.

I can testify that the emotional process of parenting a an autistic child has been like walking through a foreign country, unsure of how to navigate our surroundings--so we wing it.  Since my daughter's experience doesn't fit the autism stereotype, we went through stages of denial and misunderstanding about her situation.  We did provide early intervention for her through local services and early childhood programs; however, because there was no concrete diagnosis until she was in high school, we did not have many resources or information on how to help her.  We just took it a day at a time and worked through it as we went.  We made plenty of mistakes along the way but encouraged her to be independent and work as hard as she could given her situation.  Later on, I realized how inadequate her support system was; however, there were a couple of teachers who understood her and made a positive impact on her life.  As an adult, she has become an amazing advocate for autistic children and adults, and I am extremely proud of the difference she has made.

I sometimes wish that I would have had the knowledge and resources that I am aware of now when she was a child so that we could have been more understanding and supportive of her needs; however, we are very thankful and blessed to have such a kind and dedicated daughter.  She has always been socially reserved and not many have had the honor to know the quirky, funny, brilliant, and delightful young lady that we know.  I have always had a secret desire to share the person I know with the world so that those who have misunderstood her could see her for who she really is.

This summer, we began our mission to take victory over our lives and had an incredible time in the process.  Most recently, we did a series of videos about a family vacation to Branson, MO.  My favorite video was about her perspective on optical illusions at the Ripley's Believe it or Not Museum.  I was fascinated to find out that she could go through a very disorientating exhibit without any problem while everyone else had significant struggles, some not being able to get through it at all. The reason why it was easy for my daughter was because her autistic brain enabled her to see details that others would not notice, and she was able to figure out how the optical illusion worked.   It was amazing for me to observe her perspective on the the exhibit. Others were also fascinated by the video we made about the exhibit because of its enlightening perspective.  When I told my daughter about the response to the video, she laughed and told me that she doesn't want be seen as a "super hero" or an "awesome autistic."  She just wants people to see her for who she really is and accept her as a person.  My daughter knows I see her as a hero.  My kids are all my heroes because they are fighters and they inspire me.  I am excited to share more about autism through my writing ministry and put together a few video clips about it as well.  We hope to bring a new light to  our unique situation and let others who are autistic know that they can thrive no matter what challenges they face!

_______________________________

JOYFUL TREASURES:  Be Real and Share Your Story!

" I don't want my thoughts to die with me, I want to have done something.  I'm not interested in power or piles of money.  I want to leave something behind.  I want to make a positive contribution- know that my life has meaning."  --Temple Grandin

We all have a story to share.  Don't be afraid to speak up and be a testimony.  You never know who might need to hear your story.  You can change the world one word or idea at a time!

_______________________________

Here is the video we put together about my daughter's perspectives on optical illusions during our recent trip to Branson.  Please note that she has since corrected me on how to describe autism as she doesn't use the phrase "autism spectrum" and finds the term "high functioning autistic" to be degrading.  I also have quoted autism advocate and author, Temple Grandin, in this video and in my blog.  My daughter has made it clear that she does not agree with some of the things Grandin has said about autism and she is not a fan of her work.  Since first posting this blog and video, I have learned that there are many common misconceptions about autism, and I do the best I can to show respect to the autistic community by noting these misconceptions and respecting their preferences.  I have shared Grandin's work in this case because of her enlightening perspective on optical illusions from an autistic point of view:

https://www.youtube.com/watch?v=xsLw5-pnn-4

For more information about Temple Grandin and her movie about optical illusions:

https://www.youtube.com/watch?v=zWuem1ViVDE

https://www.youtube.com/watch?v=UGbFUajfNe8

https://www.youtube.com/watch?v=UKhg68QJlo0

Victory Over Suffering: A Pursuit of Joy

This week, we are on a family vacation in Branson, MO.  I honestly cannot recall the last time I was able to fully enjoy something as big as a vacation!  Our family took a trip to Mt. Rushmore three years ago, and although I was able to go see the national monument and visit a few tourist attractions, I had to spend a considerable amount of time on the trip resting or in bed.  I have been looking forward to this vacation for almost a year and excitedly planned all the fun tourist attractions and events we would participate in.  My husband was thrilled about my enthusiasm.  He has sincerely wanted to meet my expectations and make it a memorable trip for me.  Some of the tourist attractions I wanted to see were somewhat out of the way, so we decided to leave a day early to make it work.  Monday night, we were off on our family adventure.  Unfortunately, we barely made it across the border into Minnesota when we had the first mishap with a blown tire on a very busy interstate bridge over the St. Croix River.  The tire blowout was the first of a handful of setbacks that  made for a long tense two-day drive which forced us to canceled my plans for Tuesday.

Over the past several years, I began to realize how much I took for granted prior to my battle with chronic Lyme disease.  Consequently, I also discovered the simple pleasure of letting go of expectations and enjoying life as it is.  Until recently, my expectations have been minimal.  As I began to make breakthroughs in my health, I decided to make this a "victory" summer.  I have done more activities in the past month than I probably have in 10 years.  My daughter and I have been making weekly videos to document these victories.  They may not be the best quality filming; however, our videos are candid, real, and have enriched both our relationship and our enthusiasm for our mission to inspire others.  Annika's younger brothers have relentlessly teased us about making them, but we are having so much fun! This trip was to be our greatest victory in our summer project, and I think we probably made our expectations a little too high in the process of planning it.

It is funny how we can allow our expectations lead to disappointment when things do not turn out the way we pictured them.  When I think about all the times I had to completely miss out on events, the disappointment I experienced yesterday over a delay in plans now seems silly to me.  I should just be glad that I can make the trip with a few accommodations and let it be at that.  I am certain that in looking back at our vacation; we will focus on the wonderful memories we made and probably will chuckle about some of  our setbacks.

My husband and I at Silver Dollar City

Several years ago, I made it my mission to pursue joy in all things, which has not been an easy task given my circumstances.  This pursuit was the inspiration for this blog and for my social media name, "Joyful Mama."  I can honestly say that I frequently fail at this pursuit; however, I continue to stay with it.  The truth is that I was tired of feeling sorry for myself and tired of expecting others to feel sorry for me.  When your life is suddenly put on hold by something like an illness or condition, you become easily absorbed in your own suffering.  I equate it to a similar experience as going through a pregnancy in which every waking moment can easily be consumed with thoughts about the baby you are expecting, and you find yourself talking about it with everyone.  When you are constantly in pain, sick, having vertigo, heart palpitations, tremors, etc, it is nearly impossible to ignore or not think about it all the time.  The difference between a pregnancy and a chronic illness is that thoughts revolving around pregnancy do tend to be more joyful and the people around you are more likely to want to engage in discussions about a baby coming into the world.  I had to come to terms with the fact that people may not be comfortable discussing my illness or symptoms, and I had to be OK with that.  At some point, I made a decision let go of my expectations for myself and the people in my life.  In this process, I unearthed confidence and joy in at a new level which cannot be explained in worldly terms.

How do you find joy when you are suffering and in pain?  How do you find joy when you are worrying about your health, your family, or your finances?  How do you find joy when the circumstances of your life is the opposite of joyful?  Joy is an intentional pursuit which can only be fulfilled in a daily personal relationship with God.  I make joy intentional by choosing to focus on what is good in my life and putting together multiple lists of what I am thankful for.  My methods may seem too simple; however, these simple pursuits have supernaturally enriched my life in a way I cannot begin to describe.

To those who are in the middle of a very difficult battle with illness, anxiety, or depression; I am not intending to minimize your suffering or be trite to your pain.  I have been there.  I know from personal experience that there is no fathomable way to "suck it up" or make yourself not feel the way you do.  It is more of a matter of clinging to God and holding on to those promises when nothing else makes sense.  When you feel like you are losing everything, God can seem like all that is left.   God's promises may seem so far away that you could never dream of finding the light out of the darkness of your circumstances.  It takes a tremendous amount of trust to keep going when it seems like you have lost hope.    It may not seem like there is a light, but I assure you there is and hope may come in an unexpected way.  My hope was grounded in reflecting on Christ's unimaginable suffering for my sake.  At my lowest point, I felt a kinship to the story of Jesus in the Garden of Gethsemane.  He was in  so much anguish that He literally sweat drops of blood.  This story brought more comfort to me than anything the world could offer.  If anyone understands our suffering, it is Jesus. 

Now that I am on the other side of falling into the pit of despair, I frequently feel a tremendous amount of joy knowing that I can achieve victory and take back when the enemy of illness has robbed.  In experiencing this joy, I have come to realize how deceptive our feelings are.  Just as I don't always feel in love with my spouse, children, God, etc., I don't always feel happy.  Sometimes I feel sad, anxious, or overwhelmed; however, I am committed to live my life serving my spouse, children, and God.   I am committed to make the best of what God has given me, including the hardships.

_______________________________

JOYFUL TREASURES:  Count it All Joy

"Count it all joy when you face trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing."  --James 1:2

Roses are a beautiful reminder that though life gives us thorns, beauty remains in the steadfastness of our trials.  Our suffering may be for a season; however, the "Blessed Controller of All Things" will somehow meet us in our place of hardship to carry us through the valley.  Someday, we will receive our reward for these hardships.  Victory comes not in what we have done to overcome our sorrows; but what our Creator has done for us. 

_______________________________

To learn more about my daily pursuit of joy in how I manage both my exercise and devotional time, you can watch my recent video about joy: