duchenne muscular dystrophy – The road less traveled

Cheated or Chosen?

Last week I spent a few rare moments scrolling through social media. I was looking for inspiration and ended up seeing people on the beach, at work or outside enjoying nature. Over the years, I have spent less time on social media because I walk away from my phone feeling irritation or sadness.

Last week, I watched a You Tube video by Priscilla Shirer called Let God Restore Your Circumstances https://youtu.be/HHRllMZKmlc?si=KFQ7UlET40QDqI8h. In the video, she talked about a woman who was successful in her job but was led by the Holy Spirit to leave. It was a frustrating, scary time for her and she ended up babysitting for several families. She not only watched over the children, but she shared bible stories with them, brought over casseroles for the families, and formed close bonds with the children and families. After a time, she asked God why she left a successful job to babysit. She was understandably frustrated and confused about her purpose. God answered her prayers by showing her the smiles on the children’s faces when she rang the doorbell and the importance of the moms and dads spending time away – she knew that her purpose was so much deeper than babysitting.

Illustration of a path through spring, summer, autumn, and winter landscapes

I left my job at a Title Insurance Company to take care of my boys. As they were growing older they started having difficulty having their needs met by daycare. They were needing more help getting ready in the mornings which made it increasingly difficult for me to get it all done by 8:00 a.m. Things were a little tight financially but the stress level in our home dropped dramatically.

I stayed home with the boys for over ten years. It was a blessing for us: I was able to meet the boys’ increased needs without hiring any help and I was able to be there 100 percent for all of their surgeries, doctor appointments, and trips out of town for MDA events or visiting family. My husband worked long hours so it was a huge blessing to be able to stay home and take care of the housework and the boys so he could rest. He was diagnosed in 2005 with a genetic heart condition and I wanted to take the load off of him as much as I could.

The boys always enjoyed the River’s Edge Trail

It wasn’t until a few years after my oldest son, Christian, passed away that I began to feel like a prisoner in my own home. All around me my family and friends were traveling to fun destinations and sending me photos or posting them on social media. I have always been genuinely happy for them, but I also began to question my purpose and grew tired of feeling like I was standing still while life continued to move forward for everyone else.

So many of my classmates are grandparents now. I made peace knowing that I would most likely not be a grandmother but I still feel left out when I see people my age spending time with cute wee ones.

Over the years, I have learned to appreciate the small miracles in my daily life. As a result, it doesn’t take much to amuse me. When I went on a walk with my precious friend, she was amazed at how much I noticed as we walked along the river – various birds that I could identify by sight or sound, tiny streams of water bubbling out of the rock or a beautiful wildflower in the middle of a patch of weeds. I am truly thankful for this gift from God. Have I really been cheated?

I have always found great joy taking photos in the flower garden at Gibson Park.

When I went to the funeral home to see my son the day before the service, I sat in the room alone with him and I talked to him. I realized how much of a blessing it was to be able to take care of one of God’s special children. We are all His special children but there is something miraculous in His children who smile and inspire others despite their declining health. I thanked Christian for the honor of being his mother for 21 years. I realized that I was chosen to be a mother of 2 beautiful boys.

Through my experiences in raising 2 sons with Duchenne Muscular Dystrophy and the experiences I continue to have with my youngest son, Andrew, I want to write a book about their condition that can guide other parents through this difficult journey. I want to take the mistakes I made and the things I have learned to help other families living with this disease as well as any other challenge their children may be facing.

I don’t have to travel the world to know that God has a plan and purpose for my life. All I need to do is look into my son’s eyes and hear the love in his voice when he calls me “Best Mom”. Will the book I want to write take 5 years? 10? What else has God chosen me for? As I walk with Him each day in trust, surrender, prayer, and by reading His Word, He will show me each day what I need to do to remember that I have been chosen.

A New Journey

As I looked at the deep blue sky this morning, I was filled with awe. In the foreground, starlings started to line up on the power line. As I saw them I started to feel sadness. Every year, around Christian’s birthday, starlings gather and they fly around our house in huge masses.

Thousands of birds flock above colorful autumn trees and a park path — Thousands of birds swirl above vivid autumn trees under a dramatic cloudy sky.

I marvel at our ability as humans to feel so much at the same time. This is a blessing and something that I also wish I could turn off like a switch. Why do we have to experience the difficult emotions – grief, loneliness, anguish, fear, anxiety and so on? For years, I avoided feeling sadness and grief as I watched my sons’ health and independence deteriorate. Fear or some other unpleasant feeling would creep in and I would push it aside by keeping busy or looking at my phone.

There is a reason why God gave us the ability to feel. In order to be truly alive, we need to feel. Our emotions are a compass to guide us to what needs attention in our lives. I ignored this internal compass for decades until it began affecting my health – tense muscles, spasms, digestive problems, weakened immunity to name a few. Chronic stress accumulates in our bodies, spirts, and minds creating disruption to our well being.

As I was approaching rock bottom in 2023, my sister reminded me that our bodies are a temple of the Holy Spirit. “Do you not know that your bodies are temples of the Holy Spirit, Who is in you, whom you have received from God? You are not your own;you were bought at a price. Therefore honor God with your bodies.” (1 Corinthians 6:19-20) We honor God with our bodies by loving others and by loving ourselves enough to honor our emotions. We honor God by serving others out of our overflowing cup. God does not desire for us to be burned out and unfulfilled.

We were bought at a price – the blood of Jesus Christ. God loves us that much!!! Jesus wants us to live a full, abundant life. (John 10:10) By carrying around trauma, grief, and stuck emotions, I have been walking around in life with a backpack full of boulders. My body could only go on that way for so long.

This past spring, I enrolled in the Thriven Functional Medicine Program. I knew I needed help and guidance on the road to wellness. I always considered myself ahead of the curve with my health. I ate as clean as possible for over a decade and learned as much as I could about nutrition while ignoring my fading spirit and the emotions that were accumulating inside of me. I found out that my muscle mass is far lower than normal women my age, my immune system is weakened from chronic stress, and I have adrenal fatigue from…drumroll…chronic stress.

In order to begin on the road to wellness, I had to begin changing habits that have been a part of me for decades. For years, I did the same thing hoping that things would change. I have learned to admit that things in our lives do not change if we remain the same – functioning on too little sleep, people pleasing at the expense of my getting any rest, not getting regular exercise or sunlight, and being isolated. It was when I started making changes that I stopped falling asleep at the table during meals and I started losing weight.

Although Thriven is a seven month program, it’s only the beginning of a journey of healing in my mind, body, soul and spirit. At the root of illness for many of us are things like negative childhood experiences, trauma, loss, and abuse. By not facing these difficult situations, they fester in us like an infected wound. I have been learning what it means to look at my reflection in the mirror and respect the woman looking back, what self-care is and how we cannot give from an empty cup, that what we say and think about ourselves matters, and how important having non-negotiables in life is.

This month will be 12 years since Christian went to be with Jesus. The grieving I went through was only the tip of the iceberg. So much is buried beneath the surface of my made-up face and smile. Over the course of the next year or more, I will be facing the emotions I have buried for far too long and the back pack will slowly become lighter as the rocks will be taken out bit by bit.

This past weekend, Pastor Nate talked about their being “No Useless Tools” in the church family. He talked about the gifts and talents that God gives us and how we are to use them to serve and help others. Just because we are not gifted to play a guitar or sing doesn’t mean we have less meaning. I know a couple of the gifts that God has gifted me with and I look forward to blessing others with them. In order to do so I need to heal and know the truth – that we are worthy and loved more than we can think or imagine!

I am excited to share my journey with you. I posted regularly in this blog until about a year or so after Christian passed away. As I write this post today, I feel happy knowing that I am investing in one of the gifts God has given me. I look forward to what He has to show me. I will be stepping outside of my comfort zone but Jesus will be by my side every step of the way.

As the Leaves Fall

Dried up leaves litter the ground

Yellow, orange, and brown.

Sadness engulfs my heart.

The tree above stands strong and tall.

The leaves left on the branches resemble a stained glass window,

As the sun kisses them from above.

A memory comes to light, a dove

Held in my son’s lap

As we say goodbye to my sweet boy.

I watch the dove fly back home,

Going home like it says on the top

Of the casket decorated in blue

With seagulls flying away.

Oh how I wanted to stay

But, alas, leaving knowing there will be a day

When I hold you in my arms again.

Holding Two Things at Once

A few months ago, my therapist talked to me about holding two emotions at the same time. I have used this bit of wisdom many times and really began to apply it as the season changed.

My son, Christian, was born on October 12, 1993. He went to be with the Lord on October 27, 2014. As the leaves began to turn and show their brilliance in the sunlight against the backdrop of a deeper, blue sky, I felt two emotions at once. I felt joy as I witnessed God’s amazing creation and the miracle of changing seasons while feeling an ache in my heart. Memories flashed across the canvas of my mind – our last outing with Christian at Gibson Park with the golden leaves and cooler temperatures. I see his hand dangling over the side of his chair, holding a piece of bread for a goose to nibble on. I remember him not wanting me to leave his side and not understanding why he all of a sudden didn’t want me out of his sight.

On his birthday, I vividly remember the purple, yellow and orange leaves scattered all over the front lawn as I took photos of him by his birthday sign. I remember so much of what he said and did during his last few days on this planet.

In my other hand, I hold the remembrance that Christian is with Jesus. He is whole, his body no longer contracted and muscles no longer wasting away. He can breathe fully, he can run with his friends who also passed away from Duchenne Muscular Dystrophy, and he is experiencing God in a way none of us will be able to until we go home.

How can my heart ache and be so full of joy at the same time? By knowing that God never leaves us and He cares about our grief, difficulties, anxieties and pain. I feel the grief down to my bones but yet I have hope. “Why are you in despair, O my soul? Why have you become restless and disquieted within me? Hope in God and wait expectantly for Him, for I shall yet praise Him.” (Psalm 42:11)

With God’s strength, we can hold two things at once – sorrow and joy, despair and peace, anger and relief, anxiety and hope. We need to give ourselves some grace to feel, slow down and look around at the miracles in our daily lives, miracles that are present even when our heart aches.

I Hope there are Art Classes in Heaven

Today my oldest son, Christian, would have turned 31. He passed away almost 2 weeks after his 21st birthday. We are going to the cemetery to clean the headstone and set some gifts out for him. I am also going to take a pottery class, which starts tonight, in his memory.

Even though he had physical limitations, Christian enjoyed making homemade greeting cards, drawing, and working with all sorts of media in art class. When he was in high school, his art teacher nominated him for an award in honor of a Zach Culliton who also overcame his disability to create a beautiful painting of a fish. Christian’s name remains listed to this day.

Christian took a lot of time and effort in making the picture which earned him the award. It was a very exciting evening and so many of our friends and family showed up to celebrate. I even met Zach’s mother and she was very kind. Zach passed away not too long before I met her. I hope to see her again.

Christian was always focused on his abilities instead of his limitations. He made numerous Star Wars lego models, enjoyed doing puzzles, and put his best effort into everything he did. On one particular project when he was in high school, he had to draw a creature made from three different real animals or insects. He then did a ceramic rendering of it. I have it sitting on the table today to remind me of his beautiful art and to give me strength to step outside of my comfort zone for 6 weeks on Saturdays for a couple of hours. I really hope I enjoy it and that pottery will be one of my gifts.

Like many of the hand made greeting cards Christian made for me over the years, I want to make some beautiful pottery for him. I want to picture him smiling down from Heaven. My heart is heavy and I would rather have Christian here to bake his favorite chocolate cake and order him pizza for dinner. I imagine he is doing something far better than anything this earth could ever provide. Happy Birthday my dear son. I know you are having the best time building unlimited lego models and making beautiful pottery because in Heaven, you are not sick. I love you and miss you with all of my heart and soul.

img_0385-1 — This was drawn by my dad shortly after Christian passed away.

Staying Healthy as a Caregiver

As parents, we all know the value of taking care of ourselves. As a parent of a special needs child it is even more important. The physical, emotional, and mental demands can easily cause burnout if we neglect ourselves. I have learned a hard lesson with this over the last year.

For over 10 years, I was blessed with great health and strength as I cared for my two sons. Due to the progression of Duchenne Muscular Dystrophy, their needs only increased over the years. As their needs increased, my free time became more sparse so I had to make an effort to make the time count. I tried getting out once a week to my favorite coffee shops or the bookstore to enjoy my favorite novel, going for walks on the River’s Edge Trail, or reading the Sunday paper with a cup of freshly brewed coffee. I learned to cherish the small things and I still do.

I was diagnosed with Cervical Dystonia two months ago and for the first time ever, I was unable to care for my son. It was a very painful, humbling feeling and I am thankful my husband did most of his care. I have learned a lot going through this experience. I learned that it is far easier and not as expensive to prevent illness than to have to heal from it. Dystonia is genetic and it is possible that I may not have been able to prevent it, but like many illnesses it can be overcome. I wanted to share some simple, yet powerful steps we can take daily to stay healthy and have the energy to keep up with the sometimes overwhelming demands of caregiving.

For many years, I got up well before I needed to get the boys started for the day. Before Christian passed away, it took 3 1/2 to 4 hours to get them ready for the day. It was far easier to accomplish this on a daily basis when I knew that I at least did my personal care and took some time for myself already. This time can be spent doing the things we enjoy such as sitting quietly with a cup of coffee, reading the paper, in prayer, listening to music, or exercising. Every afternoon, I would lay the boys down for 30 minutes of rest time from their wheelchairs and take that time for a cup of tea and a good book. If I had extra time before preparing dinner I would use that time to write a letter to a loved one, send a greeting card, practice playing the piano or sit outside in the sun and watch the birds. It is amazing how energized I would feel after taking even 20 minutes to read a book I enjoy.

P1000241 — This is the last photo taken of Christian and me together.

After losing Christian, I lost my way. All of a sudden I had all of this time I never had before, and for a long time I felt guilty for trying to do something for myself. I have since realized that it is an honor to Christian’s memory to pursue my dreams because he never gave up on his. Christian read books up until the last 2 weeks of his life. He tilted back in his wheelchair, turned his head sideways on his headrest, and read on his iPhone. We all have gifts given to us from God and if we do not invest in them, we are throwing them away. The world ends up not being as wonderful as it could be with our gifts.

Christian won an award in high school for his excellent work overcoming his disability to create art.

Pursuing our dreams and goals also encourages our children to never give up despite their physical limitations and it also instills some normalcy into their daily lives. We have more energy to enjoy life and we become strong inside so we can better face the uncertainty associated with complications from the diagnosis.

Please share some ideas you may have about taking care of yourself and enjoying life to the fullest as we care for our loved ones.

A Necessary Truth

There are mornings when I am doing my regular Bible study when I come across something so profound that I will always remember it. I read a quote by Bronnie Ware from her book The Top Five Regrets of the Dying: “I wish I’d had the courage to live a life true to myself, not the life others expected of me.”

Ware worked as a palliative caregiver. Palliative care involves the care and support of a patient faced with a life threatening or terminal illess. It also involves improving the quality of life for the patient as well as the patient’s family and friends. I had no idea such a word even existed until after my son passed away. I knew what hospice was but in my son’s final year of life we had no support and no one to even tell us what support was available to us. It was a fearful, traumatic time in our life and has led me on a mission. I have started to write a book about my experiences with raising two sons with Duchenne Muscular Dystrophy and losing my oldest son, Christian, to the disease. No one should have to deal with end of life issues on their own. So many physicians are in the dark about Duchenne Muscular Dystrophy and it is not uncommon for them to feel discomfort about discussing end of life issues.

A physician came to the house to examine Christian about a year before he passed away. He had nothing to say to me and later I received a copy of his notes from the visit – notes that did not even make sense. The closest thing ever said to us during Christian’s life that even came close to the reality of his prognosis was “you need to talk to the nurse about signing a living will.”

Christian’s passing came swiftly and without much warning. We were alone and had no idea he would be leaving us that dark Monday morning. Looking back over 2 years later, it hurts, but I know that harboring bitterness and resentment towards the medical community will not bring him back or ease my pain. I can only use this experience as a driving force to inform others that they do not have to face the eventual passing of a loved one alone and without the truth.

After reading Bronnie Ware’s blog post I realized that I am not waiting until it is too late to reach for my dreams and set goals consistent with my values. It is never too late to use my pain to ease the pain of others. That, ultimately, is my goal: to prevent others from having to go through the avoidable hardships that I’ve suffered.

The Small Things

When I was a youngster, Thanksgiving meant Ritz crackers and cheese, mince meat and pumpkin pie made from scratch by my grandma, cranberry sauce, yams, turkey, rolls, olives and movie marathons. I always looked forward to my grandpa stopping by to drop off the pies and chatting with my mom over a cup of coffee. We never had any large family get togethers but it always included mom, dad, myself and my two younger sisters.

Over the years, as my nieces and nephews have grown and my sisters have moved away, we have had a few big gatherings. We would have a houseful – people sleeping in the spare bedroom, on the couch, air mattress and the floor. These were Christian’s favorite Thanksgivings.

kids-in-jovas-room — The boys’ favorite Thanksgivings were spent with their cousins.

Not even a month after he lost his older brother, Drew found comfort in spending time with his cousins during Thanksgiving.

For the last 2 years, the three of us have had a quiet meal while the fourth chair remains empty. We will visit the cemetery tomorrow morning and do our best to enjoy another Thanksgiving without our boy. Christian always loved and appreciated his Thanksgiving meal. He also remained thankful for the smallest of things until his last breath.

Every time I see something beautiful, I wonder if Christian is showing me what he always appreciated while he was on this earth.

I am thankful each and every day that I was able to take care of Christian for 21 years. I am thankful for the conversations we had while I cared for him, the things he did to make me smile and for the strength I had to care for my boys with little to no help. I am thankful for everything Christian taught me and for the things I continue to learn as I care for Andrew. When you care for someone who cannot leave the house because of their failing health, you learn just what we should truly be thankful for – a dove on the sidewalk, the warmth of a blanket fresh out of the dryer, a short visit from a dear friend, music, hugs, a birdsong, the smell of fresh coffee, a clean house or hearing the sound of the warm air flowing through the vents on a chilly winter night. The more I become thankful for, the more reasons I find to praise God. Praising God for the small miracles opens our hearts to the bigger gifts. Our lives become filled with peace and unexplainable joy as we carry Thankgiving into our everyday lives.

The Resilience of the Spider

Like a lot of people, I am afraid of spiders. A tiny spider skittered across my desk only to be crushed by my workpapers as soon as I noticed him out of the corner of my eye. Every morning when I get into my work car a beautiful, complex spider web stretches from the driver’s side mirror to the door. Using my key, I slice it right through the middle out of fear of the fella being blown into the vehicle by the wind and landing in my hair. Despite my efforts to destroy the spider web every morning, I return to find another web built in the same place.

My son knew what he would face each and every day over the last year and a half of his life – routine and pain. He knew he would have to deal with pain most of the day but he still didn’t complain or become angry. I rarely remember Christian feeling sorry for himself. He continued to read until his arm became too tired to hold up his iPhone and he made the best choices he could for his health until the end.

Imagine going through all of the effort to create something so complex and beautiful, only to have it destroyed 24 hours later. Once I really started to think about what this spider was doing, I couldn’t help but wonder what would happen in my own life if I had the same resilience and determination as this little eight legged critter. Most of the world’s greatest inventions were created out of failures – the telephone, the boardgame Monopoly and cures to diseases. What about people who have to endure several rounds of chemotherapy, knowing after each one what they have to face and that it can make them feel worse each time?

What are your dreams and goals? Are there ways you can prepare for these dreams by doing a little each day? I hope to write a book one day that will hopefully inspire people, especially those living with the daily challenges and heartbreak of Duchenne Muscular Dystrophy. Sharing my thoughts and my heart with readers on my blog is one way I am preparing for my dream. I have wanted to give up more than once – doubt, fear, a tight schedule, or when I just can’t seem to get my sentences straight. Two things keep me going – hope and love. I have hope because I know that God helps us become all we can be in life, especially when we can help other people. I also know that anything that is done with love in our hearts will ultimately succeed, no matter how many attempts it takes. Love is all that matters and is contained in all things, even the spiders.

*note – I had a little trouble with the caption above but am posting regardless. I apologize if it looks odd. We keep on keeping on right? xoxo

Fight for a Cure

Today is World Duchenne Muscular Dystrophy Day. This is the first year I have heard of a day being devoted to DMD and perhaps it has to do with the Jerry Lewis Telethon no longer being aired.

Most people do not know what Duchenne Muscular Dystrophy is. Many people have mistaken it for Multiple Sclerosis, which is also a neuromuscular disease but is not the same. DMD is a genetic disease when muscules are missing a protein called dystrophin. Without this protein, muscles cannot fully develop and they eventually start to deteriorate. Unlike other types of MD, Duchennes attacks muscules all over the body, not just the legs. The arms become weak, along with shoulder, abdominal and back muscles. Being the monster that this disease is, it also goes for vital organs, such as the heart and weakens muscules that help us to breathe, such as the diaphragm. Many boys succomb to the disease from pneumonia or heart failure. As back muscles weaken, scoliosis sets in, making surgery necessary. Without spinal fusion, which is very risky and involves a titanium rod being put into the back so it can be kept straight, the spine continues to compress which makes it difficult to breathe and puts stress on the heart. Many of the boys have to use ventillators to aide in breathing earlier on without the spinal fusion.

Muscles that we take for granted to aide us in our balance so we can sit up straight deteriorate making it impossible to sit on a chair without support. Without the ability to stand, many families use special lift systems to help transfer their kids from bed to chair and even to use the bathroom.

Duchenne MD takes on its full form in males. My mother has a more aggressive mutation of DMD and she has lost a lot of muscle in her legs and arms. She has fallen and injured herself and we are looking at making modifications to her home in the future to insure her health and safety. I have symptoms but they are not as severe as my mothers and I hope I can keep them at bay by being proactive with a plant based diet and plenty of walking. We recently found out that my youngest sister has the disease and it was passed on to my 10 month old nephew.

Me, my sister Sonja who is also a carrier and Damian who has been recently diagnosed with DMD

Duchenne MD, along with many other neuromuscular diseases, takes a tremendous emotional and financial toll on families. The spinal fusion surgery is a six figure procedure and a power wheelchair can cost well over $15,000.00. This doesn’t account for lost wages because unless a good caregiver is available, one parent has to stay home to care for their son. There are also regular visits to the cardiologist and pulmonoligist along with physical therapy.

We lost our oldest son, Christian, in 2014 to this disease. His heart became too weak and he had a great deal of trouble breathing. My other son, Andrew, continues to deal with the ongoing weakness and complications related to DMD. He has days when he is in a great deal of pain and most boys cannot take large amounts of painkillers because of the side effects.

Christian had to spend a great deal of his last year tilted to control his pain.

The Jerry Lewis MDA telethon has raised millions to aide in research so we can find a cure to this disease, along with other neuromuscular diseases. It was heartbreaking to hear about the end of the telethon. We now have to think outside of the box for ways to raise more awareness and to continue to fight for a cure. There are several different methods being studied with some actually showing improvement for some of our boys. It still has a way to go but we must not lose hope. I, along with many other mothers and fathers that have to live with this disease every single day, do not want this day to be lost among the other fun, national holidays – National Hug Your Cat Day or National Pizza Day. Please donate to your local MDA events, such as Fill the Boot and the MDA lockups to support statewide summer camps and MDA Clinics. The clinics are very important, especially for people who live in such a spread out state like Montana.

We have had to watch the boys lose friends from MDA camp and in turn fear for their own future. I have created a Facebook group so us moms can support each other during difficult times and give each other ideas as the disease progresses. With enough awareness and scientific research we can beat this disease and give our boys hope.