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:

Victory Over Loss: Taking My Life Back

As a teenager, I had very fond memories of attending an amusement park in Kansas City called Worlds of Fun.  The first time I rode a roller coaster, I walked up to the huge contraption, terrified of what the outcome would be.  On a ride called the Orient Express, I discovered a new kind of freedom mingled with a combination of excitement and sheer terror.  Heading over that first bend and then eventually flipping upside down evoked an incredible adrenaline rush that my young mind savored.  In that screaming joyful moment, I was free!  I loved it!  Afterwards, I would stand up, knees knocking, feeling a little off balance and unsteady, my heart still racing with the memory of the thrill of victory.  The ground seemed to keep moving temporarily as I gained my bearings, yet I craved the freedom of the coaster.

 Lyme disease and chronic vertigo became my roller coaster 25-30 years later.  I experienced excruciating moments of terror as my life felt like it was diving over the bend and flipping upside down.  It was like an adrenaline rush without the freedom or joy--more like being locked up and trapped in a nightmare that stealthily ebbed away at my existence and left me off balance.  I attempted to gain my bearings, yet was unable to do so for years at a time.  With having a vestibular disorder that induced chronic vertigo, sea legs, and impaired balance,  my body literally felt like I had just walked off that roller coaster.  The ground would feel like it was vibrating, moving, and tilting.  That has been my life off and on for the past 10 years since my fist tick bite.

Although I have never been able to get my body back to where it was before my tick bite, I have made steady gains in the last two years since I have been in remission from the disease.  My husband, Mel, and my daughter, Annika, have both encouraged me to be courageous in getting out and taking my life back by gaining new experiences.  Things like taking a walk, going to church, shopping, and attending a concert or athletic event have been exciting victories for all of us.  Missing out on mother/daughter activities has been a source of grief for my daughter and I, as it felt like we were both robbed of her childhood and teenage years.  We decided to make up for lost time by making new memories together.  Annika and I used the idea of taking our lives back, restoring our loses, and having new adventures to create a vlog and share some of our experiences on video.

With Annika turning 20 earlier this month, we decided to celebrate her 20th birthday by going to the Mall of America and doing some fun activities together.   Last week, we packed up my wheelchair, grabbed food, supplements, and medical devices needed to make the trip a success, and we headed out to the mall to meet our cousins.  Our lives are extremely hectic right now, so I ended up staying up 48 hours to catch up on some work at home and prepare for the outing.  I was exhausted that day; however, I knew how much it meant to Annika, so I said a little prayer and we were off on our adventure.

At the mall, we decided it would be fun for Annika and her cousins to take me on an amusement park ride at Nickelodeon Universe and video the experience.  Annika made some calls the day before and it was recommended to try the Pepsi Roller Coaster ride.  Thinking it would be more of a "kiddie"  roller coaster ride, I reluctantly agreed.  I was unsure how the ride would affect my vestibular disorder but I figured it would be pretty simple.  Although it was nothing like the Orient Express, the Pepsi had many dips and dives associated with a roller coaster ride and that old exciting feeling of terror and thrill swept upon me.  Because of my dizziness, I had to keep my eyes closed most of the ride.  I did scream a couple or times and, to my daughter's amusement, I shouted a few bible verses.  I closed my eyes and momentarily found myself that teenager again, thrillingly free.  That momentary feeling evoked a turmoil of memories for me, and when I attempted to describe the feeling for the camera, a flood of emotions hit me.  I was shaken afterwards, yet I felt as though I overcame a huge hurdle in my life and was ready to conquer the world!

A while later, I took Annika and her cousins out to eat at the Rainforest Cafe.  It felt good to be able to pay for their meal.  At the cafe, Annika and I shared her birthday meal.  Because of my digestive disorder, I have only eaten out 3 times prior to that in the last 8 years, the last time was about 2 years ago.  Steak was the only thing on the menu I thought I could handle, but it was delicious.  Going to the mall, shopping, and eating out was such a blessing!  That day, I had an adrenaline rush of joy for those steps we took to take my life back!  After our trip to the mall, I attended a concert at a bandshell along the St Croix River, where my daughter performed on her tenor saxophone.  It was a full exhausting joyful day in which I spent 2 days resting in bed to recover from it but it was so worth it!

Annika and I making silly faces as we reminisced about our crazy day at the mall!

_______________________________

JOYFUL TREASURES:  Redemptive Power

"I will restore to you the years the locusts have eaten..."  --Joel 2:25a

When a chronic illness robs a person of their livelihood, loss is a difficult thing to endure; however, Christ's redemptive power is greater than our loss.  One day, we will receive a crown of victory.  The future awaiting us is more incredible than we could ever imagine!  Meanwhile, we can be more than conquerors here on earth as we trust God's promises and believe He will bestow on us an abundance of blessings in our mortal lifetime.

_______________________________

Here is the video Annika and I put together about our day at the Mall of America:

Victory at Home: a Message to Parents of Chronically Ill Children

This week, mom and journalist, Apoorva Mandavilli, published an article in the New York Times, titled, "My Son Got Lyme Disease. He's Totally Fine:  Horror stories about lingering Lyme disease proliferate, but the illness is easily treated."  In the article, Mandavilli described the experience of getting her son, Akash, diagnosed with Lyme disease and the successful outcome of his receiving a four-week course of doxycycline,  Mandavilli quoted Dr. Eugne Shapiro, professor of pediatrics and epidemiology at Yale, "when it turns out to be Lyme disease, we go to the parents and say, 'Great news, it's Lyme disease, that is the best thing it could be.' 'It's baloney that you can't cure Lyme disease, it's eminently curable.' "

To Mrs. Mandavilli, I would like to say thank the Lord that your son, Akash, recovered so quickly.  I am sincerely glad that he is doing fine without any ill effects.  That aside, I find this article concerning and very misleading as it perpetuates the idea that people who contract Lyme disease, especially those who have had it years without a proper diagnosis, are delusional.  I have researched chronic Lyme for 8 years and have spoken to hundreds of patients as well as parents and family members of patients who have battled Lyme at various levels using a myriad of protocols including long-term antibiotics for up to a year or more, herbal therapies, various detox protocols, energy therapies, and diet modifications.  Some have been successful though often have taken at least a year to address the disease.  Some consider themselves to be in remission yet experience lingering symptoms and conditions activated by a weakened immune system.  Others are still fighting hard in the battle of a disease that does not care what your income, social status, or walk of life is. No two people who have experienced Lyme disease are exactly the same in how the disease manifests, how the patient experiences symptoms, or how the patient responds to medications, therapies, or treatments.

 I happen to live in a region that is a hot spot for Lyme disease.  In my family alone, my mother-in-law, sister-in-law, and five nephews have all been infected at some point over the past 18 years. A couple were so severely sick, they were hospitalized.   Most of them recovered fairly quickly, though some still have joint pain and a weakened immune system many years later.  I myself had a serious battle over a 7 year period (though the first 2 years, I didn't realize what was causing my debilitating symptoms), and  I still have mobility impairments and digestive problems from damage caused by the disease.  My two oldest children are also experiencing lingering effects from Lyme disease.  I try not to overreact when people share their own concerns with tick bites and possible infections, and I certainly do not want to scare people with my own "horror stories"-- in fact, in social situations and at doctor appointments, I tend to hold back to protect myself and my children from any negative association or stigma that might incur with having chronic Lyme.  There are many factors involved with this complicated and mystifying illness including genetic factors and exposure to multiple co-infections that have different effects on the body.   I find it disheartening that people would lump everyone in a box stating that either you are "fine" because you completely recovered after a month of antibiotics or a "chronic nut case" if you are still struggling after the standard CDC treatment for Lyme.

 When you say your son is "fine" and that Lyme disease is "an easily treated infection with no long-term consequences for children, or even the vast majority of adults", tell that to my husband and children who were my caregivers for more than five years.  Tell that to my once active and cheerful 14-year-old son who was in so much pain after his 3rd baseball game in a row this week, that his dad had to carry him from our vehicle to the house because his body ached all over and it hurt to bear weight on his legs.  Tell that to my 19-year-old daughter who often wakes up in the morning with heart palpitations and gets winded after climbing a flight of stairs because her immune system is still in a weakened state.  Tell that to Misty, whose very social, talented, and popular daughter was suddenly housebound with pain and distress, and she was forced to put her music career on hold.  Tell that to teenage sisters, Paige and Samantha, who daily fight for their lives, battling seizures and severe episodes to herxing from Lyme.  Tell that to all the parents out there with limited support systems who are fighting to be a voice for their children and navigating the world of Lyme on their own to find a treatment or protocol that brings healing to their once thriving children.

My message to the parents of chronically ill children, is that it is "OK" to "not be OK."  Don't let ignorant  comments of practitioners and other people who are fortunate enough to avoid the devastating effects of chronic Lyme bring you down.  My heart aches for your burdened hearts and all the times you have had to face the inaccurate judgement of those uninformed.  Don't worry about what other people think and put your focus on your child's well-being. Continue being an advocate for your son or daughter and trust that God's plans for your child goes beyond their condition.  Remember that you are not alone. There are many of us parents out there ready to rally behind each other.  I will do whatever I can to speak up for your child and be a voice of awareness and hope on his or her behalf.  Together, we will conquer the myths and the judgmental forces.  Together, we will raise awareness and share our stories.  Together, we will not stop until we find answers and give our children the best we can.  Together, we will fight and achieve victory!

_______________________________

JOYFUL TREASURES:  Prayers and Pets

"Be joyful in hope, patient in affliction, faithful in prayer."  --Romans 12:12

There is nothing more disheartening than seeing your own child suffer.  The other night, my husband was carrying our teenage son from the vehicle to bed, and he was in obvious pain and distress.  I felt very helpless in that moment, so I dropped on my knees and began to pray earnestly for wisdom and comfort for my son.  Then, after I put together his pain protocol, I quietly tiptoed downstairs to find our dog comforting him.  My heart ached yet swelled with gratefulness in seeing my son at peace with his furry companion.  When we don't know where to turn as parents, let us come to our knees and petition on behalf of our precious children and let God intervene on their behalf.  Comfort may come in unexpected places.   

_______________________________

Here is my commentary on this article and more about my son's experience with chronic illness.

**This article is based solely on personal experience and discussions/interviews with other Lyme patients.  It is not intended to be professional or expert advice. 

For more information about children with Lyme disease, you can view the following links:

https://www.lymedisease.org/mandavilli-response/?fbclid=IwAR1fWkmP4DXckjSNmYgbOAwzYW5SFRMe_H2jFs1tbe9Ckl1ZiYwpz2PCNPI


https://thislymelife.blogspot.com/2019/06/my-son-got-lyme-disease-hes-absolutely.html?fbclid=IwAR2Fkq-vXEUd79SQhs0E1kJnxI76J8PdkZ8FdY1oxj2YcTo1TiP-3G1R0dM


https://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html?fbclid=IwAR2py9kZQUvbh2tNhfoU2CV94BNoz4xmccggRLp_vubv2eNChFtcED4Wk6c

https://www.youtube.com/watch?v=HOttbjEylhA&feature=youtu.be&fbclid=IwAR1qP8o0ryO3r6DImecqu1xUwRPKTcZUngV6um44JL8pUbqP50YvU3hsYoo

https://www.facebook.com/donate/342485636461153/

Heart of the Dragon: A Mother and Daughter's Victory with Chronic Illness

Everyone has a story to share and a God-given purpose. We must motivate each other to take courage and speak up! I worked for approximately 17 years in the health care industry as a Nursing Assistant, Social Worker, Group Home Manager, Public Speaker for the Alzheimer's Association, and Program Coordinator/Activities Director until my health began to decline after being exposed to Lyme disease in 2009. Eight years ago, I decided to turn my pain into a purpose and started a writing ministry with my original blog, Broken Places. My mission is to educate the public about invisible illnesses, offer hope in suffering, promote a healthy lifestyle, and inspire others to find joy in all circumstances.

My daughter, Annika, was also exposed to Lyme disease several years ago and was recently diagnosed this past year during a particularly difficult flare up while attending her first year of college. Annika also has a diagnosis of Autism Spectrum Disorder (ASD), something we did not share publicly until she made the decision to share her own testimony. She is thriving with using her unique characteristics of ASD as a strength to enhance her skills as a musician, composer, and instrument collector with an aspiration to repair band instruments as a career.

My blogs have reached out to more than 70,000 people worldwide with a message of heartache and hope. My goal is to raise awareness so that people are more sensitive to chronic conditions and to offer both inspiration and hope through my testimony and the testimony of others. Annika and I decided to take my mission and purpose a step further in hopes of touching even more lives with our video ministry, which we decided to name, Heart of the Dragon.

We came up with the title from an excerpt of the novel, Voyage of the Dawn Treader, which later was made into a motion picture. In both the novel and the movie, one of the characters, Eucstice Scrubb, antagonizes his cousins with his annoying and "bratty" behavior. While on an adventure in the magical land of Narnia, Eustice makes a foolish decision that leads him into being turned into an ugly dragon. The transformation into a dragon was just what Eustice needed to wake up as he finally saw himself or who he really was. In the process of outwardly becoming an ugly dragon, he was inwardly transformed for the better.  Eustice Scrubb had a heart change.  

We all have "dragons" in our lives--those ugly and painful aspects that grieve us.  Our "dragons" can be diseases/conditions, financial hardships, relationship struggles, addictions, undesirable habits, and other unpleasant experiences.  Out of our ugliness, hardships, and individual struggles, God shows His power by using the seemingly weak, insignificant, and unattractive to do His work.  The process of going through difficult situations to build character is often referred to as sanctification.  God sanctifies us to build our character and prepare us for something greater.  This involves a transformation of the heart and what inspired the name of our new vlog, Heart of the Dragon.  Just as Eustice becomes a victorious warrior out of his "dragonish" experience, we become victorious with our "dragonish: hardships.  With God's help we can face each day as a victor!  

_______________________________

JOYFUL TREASURES:  What Makes us Extraordinary!

"Hardships often prepare ordinary people for an extraordinary destiny."  --CS Lewis

The title Heart of the Dragon is based by a quote in CS Lewis's novel, Voyage of the Dawn Treader.  These are words of encouragement for a boy who was grieved over being turned into an ugly dragon:  "Extraordinary things only happen to extraordinary people.  Maybe it's a sign that you've got an extraordinary destiny--something greater than you could've imagined."  May we all face our challenges head on as victors and embrace our extraordinary destinies!

_______________________________

  

Here is our 1st video of our new series with original music composed by Annika for the intro!  

How do I View My Disability or Illness: as a Victim or Victor?

Heroes sometimes manifest themselves in unassuming ways.  For me, my greatest hero and cheerleader has been my daughter, Annika.  Annika has had her share of battles that started at birth.  She has faced physical and developmental challenges; however, she has always been a warrior.  Being an introvert with a brilliant mind and a gift for music, she has been misunderstood by others in her school, church, and family; however, she has fought through these misconceptions and has developed a strength and attitude that demonstrates her grit and determination.  When someone tells her she can't, it makes her all the more determined to prove that she can!

Along with dealing with her own challenges, Annika has assisted her father in being a caregiver for my needs for almost 10 years.  When I started having breakthroughs in my health which made it possible for me to get out of the house more frequently, Annika encouraged me to participate in fun activities with her such as shopping and going to movies.  She often says with enthusiasm, "It's not everyday that I get to go shopping with my mother!"  

When we go to places like Walmart, Target, or Costco, she will often grab an electric wheelchair for me to use so that I can independently shop at the store.  Unfortunately, she frequently encounters judgmental glares from other shoppers who assume that she, a seemingly healthy and capable young lady, is using an electric wheelchair for her personal benefit.  About a month ago, we went to a movie and shopping at Walmart.  While grabbing an electric wheelchair for me, a young man in a black hoodie came up to her with an angry expression and called her a "mother f------."  Annika just ignored him and brought me the wheelchair.  I was ready to go find him and give him some polite education about disabilities, but Annika just laughed and said, "What a knucklehead!"  We both ended up laughing it off and didn't let it spoil our time together.

Our culture often fosters a "victim" mentality.  Whether you have an invisible disability like my daughter experiences or a more noticeable impairment such as I have, it is easy to focus on the injustice of others who do not understand your situation and feel sorry for yourself.  Although we are not perfect, both Annika and I are determined to rise above victimization and be victors instead.  A while back, Annika was at church and saw one of the ministry leaders walking out of the sanctuary.  Her first reaction was to feel nervous and insecure that this individual might be judging her for her black highlights and piercings.  She told me later that she sensed God telling her, "Annika, is that person God?"  

In order to achieve victory in our lives, we must reshape how we see our identity.  As long as we attempt to view ourselves through the lens of other flawed humans, we will  fall short and fall into the victim mentality; but, if we begin to see ourselves through the eyes of our image-bearer, we will find our security in His sacrificial love.  We are all beautiful in the eye of our Lord and that is all that matters.    I am excited to introduce a new series of articles on ways that we can achieve victory in different aspects of our lives.  It starts with our identity in Christ!

_______________________________

JOYFUL TREASURES:  Beloved by God!

1 John 3:1a "See what kind of love the Father has given us, that we should be called children of God!"

No matter what our circumstances are and how we feel about ourselves, we are precious in our Lord's sight.  We may be tempted to compare ourselves to others, but if we look heavenward and remember that "those of the spirit think of the things of the spirit," we can be "more than conquerors!"

_______________________________

For more information about Chronic Conditions and Invisible Disabilities, you can read some of my other blog posts:

https://puresimplewholeliving.blogspot.com/2018/10/im-not-ashamed-daughters-perspective.html

https://puresimplewholeliving.blogspot.com/2018/09/glimpse-into-chronic-illness-life-on.html

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-letter-to.html

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-my-trip.html

https://puresimplewholeliving.blogspot.com/2018/02/simply-living-when-life-is-anything-but.html

https://puresimplewholeliving.blogspot.com/2018/03/glimpses-into-chronic-illness-why-cant.html

https://puresimplewholeliving.blogspot.com/2018/04/glimpses-into-chronic-illness-but-you.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

https://dzehm.blogspot.com/2015/10/care-in-our-culture-part-1-invisible.html

https://dzehm.blogspot.com/2016/02/care-in-our-culture-part-two-invisible.html

http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html