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.
This was drawn by my dad shortly after Christian passed away.
Hitting the Rock Bottom is a painting by Svein Ove Hareide
My last post was in March of 2023 and I want to thank you for being here after such a long gap. On a cloudy day of the same month, my life took a sharp turn that I did not see coming. I started experiencing higher levels of anxiety like never before and I had no idea what was happening. I just thought I was really stressed. I really knew something was wrong when I had my first panic attack.
I had a general feeling of anxiousness the next day and feeling lost that would barely let up and the moments of clarity became few and far between as time went on. The panic attacks increased and so did the fear and feelings of being unsafe. I started seeing a therapist and he did not explain to me why my brain was overreacting to things that slightly bothered me before. He said it was all normal. The panic attacks increased and I became stuck in a pattern of fight or flight that lasted for almost 2 months. I became exhausted in every way and eventually, I was barely able to care for my adult disabled son.
I blamed myself for what had happened to me. I did not know that anxiety disorders stem from years of stress, childhood environments, trauma, repressed grief and so much more. I thought I was letting my family down because my husband had to take time off of work and the stress on them was not healthy.
Things continued to worsen and I eventally ended up at rock bottom. It was the most difficult, painful time of my life. It was at the bottom that I realized that God had been with me the whole time, even when I did not feel worthy of His love. Jesus was there at the bottom with His arms open wide and He saved my life.
It took some time and hard lessons for me to decide to take the medication they were highly encouraging me to try. For most of my life, I have always looked down on medication for anxiety and depression. I would think things like, why doesn’t so and so get more exercise or eat better. For some people, that’s all they need alongside a good therapist who can teach the patient how to control panic attacks and learn cognitive behavior therapy skills. On the other side of the spectrum are people like me who need medication just to function, gain back strength, and also be able to do the work to heal.
Once the medication helped to get my system out of fight or flight, I started gaining strength little by little and eventually I was able to care for my son again. I prayed throughout the day, started practicing deep breathing techniques and meditation and I continue to practice them daily. I was blessed to find an awesome therapist and prescribing Nurse Practitioner and I started making strides. I have learned that anxiety is not my enemy, but a way for my body to let me know that I need to slow down and empty out that stress bucket that was getting too full. I also started following The Anxiety Guy on You Tube. He posts videos and has two podcasts. He had several anxiety disorders for years and has since healed. He has written four books that I know of that are super helpful and his programs are affordable and have helped thousands to heal from their anxiety disorders instead of just coping. I will always have my tool box but I am learning not to let anxiety run my life. It is a long, difficult journey, but I am learning so many things that I would have never learned on a different path.
God brought several miracles into our lives during my first year of healing and continues to daily. We found an angel of a caregiver to come in and help me get Drew up in the morning and she has become a close friend. Drew received an inheritance from his great grandfather and bought a new van! It wasn’t long before we started taking short little road trips and this past July, we went to Salt Lake City! When I was at rock bottom, I would have never imagined I would be where I am today.
Like any illness or condition a person recovers from, I have good days and bad days – we all do. Each day I am learning something new. My life is so different than it was before I broke and it is so much better in many ways. I have learned to slow down, trust God for EVERYTHING, love myself and the little me that went through some tough times growing up, and forgive myself while practicing self compassion.
If you have ever seen Brené Brown on You Tube or read any of her books, you would be familiar with her famous talk on vulnerability and her talk based on a quote by Teddy Roosevelt called The Man in the Arenahttps://youtu.be/fE6fa7OpVu0?si=QlcIlLlBQcbpLUzv. By publishing this post, I will be experiencing vulnerability like never before but that’s okay. Like Brené Brown said in her speech on being in the arena with her face marred and covered in blood and sweat, there are seats reserved for those who love and care about her and even for those who criticize her. Unless those who are critical of her are willing to join her in the arena, where life has kicked her up and down, she is not interested in what they have to say.
When I was in the darkness, unsure of my future and what was happening to me, I knew that once I healed I wanted to help others. I want to give my testimony to offer hope and to let others know that they too can heal and God can bring us out of the deepest, darkest places because He loves us unconditionally and cares for us deeply. September is National Suicide Awareness Month and it is so important for everyone to know that they matter, they are loved, and there is help. Like 911 connects us to emergency services, 988 connects you to counselors and people who can help you if you are in a crisis or contemplating suicide. There is help – people love you and care about you. I love you and am so thankful for your time. God bless you and there will be more posts to come. I am not on a timetable but I will continue to work on future posts as I continue this healing journey.
If you or someone you know is struggling with suicidal thoughts or are experiencing a mental health crisis, you can dial the 24/7 National Suicide Prevention hotline at 988 or go to SuicidePreventionLifeline.org.
Three years ago I was diagnosed with a chronic health condition called Torticollis, also known as Cervical Dystonia. It took about nine months to even receive that diagnosis. I tried Botox injections hoping they would give me relief, but they ended up making me worse. I left my job, and many parts of my life were left in pieces. The simplest of tasks, such as using a computer, eating, and applying makeup, along with the more difficult task of caring for my son, became increasingly difficult to do. By the following Fall, I was sick and had no answers.
It took me longer to find an answer because all I could see was my life in pieces.
As I was reading Diagnosis Dystonia, by Tom Seaman, I came across a chapter where he talked about the Spasmodic Torticollis Recovery Clinic in New Mexico. This program helped him to recover, as well as many others who stayed faithful to the program all the way through. I was very excited after visiting the website and decided to do the remote distance program.
Finally, I saw rays of hope on the horizon.
As of today, I have been working hard at the program for two and a half years and I can finally see land in the distance! This has been the most difficult battle I have ever faced, and yet I have grown closer to Jesus Christ and learned things I would have never learned without going through this. I have learned many lessons about patience, faith, perseverance, trusting God, and the importance of knowing God’s love. I have also experienced being at one of the lowest points in my life and in the darkest nights of the soul. This battle of battles will become my testimony.
Knowing that God loves us is one of the most important parts of healing.
Sometimes the home stretch is the most difficult and I am working harder than ever on my program to reclaim my life. Just writing in this blog is a huge step towards the finish line! I am so very thankful for all of you for sticking around even though I have not posted for years. My writing is a bit rusty, but I am keeping at it and I know it will be even better in the end.
I look forward to sharing what I have learned and what it means to trust God with everything. I also had to overcome the worst fear I have ever faced. The Lord has given me strength to do the program every day and take care of my adult disabled son. This has not left me with a lot of free time, but in order to achieve victory we have to pay a price for a while. Once I am on the other side of this storm, I will be stronger, healthier and wiser. I will be better able to serve others and be who God created me to be. Like Joyce Meyer said, “Let your test become your testimony.”
We go through difficulties and trials to come out at the other side ready to share our story and give hope to others.
This past week I listened to some great Christian music. The song that has been in my head is What Faith Can Do by Kutlass. This song started playing on my Pandora feed just when I needed to hear it. I was feeling some pain and loneliness as I thought about Christian and I was doubting my strength to do all God had given me to do that day.
We all come to places in our lives when we fall on our faces, face health issues or financial uncertainty, or we lose loved ones and face unspeakable heartache. This song is about rising from the ashes to find beauty, never giving up, and not being afraid to take that first step to make a new beginning. God is always by our side and He hears our prayers, even the silent prayer from the heart.
Our valleys may seem deep and unending but the sun will eventually shine. God gives us strength to keep going and because of this we are much stronger than we know. He helps us get through difficulties to get to the side of victory.
Faith gave me courage to get out of bed every morning of the first year after our son passed away. I barely had the strength to pray, but I still did even if it was a simple “God, help me!” Faith gave me the strength to continue caring for my family even though I thought the weight of grief would crush me. Faith helps us see the silver lining during a health challenge and gives us never ending hope. Faith can move the mountains in our lives if we trust God completely.
I hope you enjoy the video. I enjoy almost all of their music and this song will always have a special place in my heart.
I read a story about four seeds in a book by Rev J. Martin called God’s Grace Is On The Way: Let go, embrace love. To sum it up, four seeds were taken up by the wind and dropped into a clearing in the jungle. Their dream was to grow to be beautiful trees, towering over the jungle. Three monkeys also lived in the clearing that liked to amuse themselves by throwing bananas at any plant that tried to grow. This made it very difficult for the seeds to take root. The seeds agreed that it would be better to wait for the group of monkeys to move on before they attempted to grow.
Weeks passed and one seed thought she should at least attempt it. When she tried to grow, the monkeys pelted her with bananas. She tried and tried, even after the other seeds asked her to stop trying. She didn’t give up but kept trying harder and harder as the monkeys continued to attack the plant.
Then, one day, the monkeys hit her with bananas but none made her stoop over. The little tree had taken so many blows that she was now full of hard knots and scars. Her slim trunk had gotten thicker and more resistant and could now withstand the impact of a banana. The monkeys were unable to uproot her. She grew until she became the most majestic tree in the jungle.
When we are dealt a bad hand in life or end up facing all sorts of difficulties, it is easy to give up on our dreams and goals. It could be bad news from the doctor, the loss of a loved one or financial difficulty that puts us in the middle of one of life’s storms. The storms can be so bad that it is difficult to see the other side of the lake and we wonder how we will ever make it across to the other side.
After recently being diagnosed with a chronic illness, I wasn’t sure if I could pursue my dreams any longer. I thought about the loss of my son, Christian, his brother, Andrew, who continues to fight his muscular dystrophy and my husband who lives with a heart condition. After being pelted with several bunches of bananas I set my dreams aside.
When we make it to the other side of life’s storms we become more resilient and strong. God can use us in amazing ways when we let Him give us the strength to keep putting one foot in front of the other when life gets hard. We can then be an inspiration to others who are dealing with their own difficulties.
We are all given gifts from God to make the world a better place. Some of us sing, play instruments, serve, sew, write or draw. Some of us are given the gift of inspiration. It is amazing what a kind word or a little encouragement can do for the spirit of another. No matter what difficulties come our way, we must never give up on the gifts that God graces us with. He knows how important our gifts are so He will give us the strength we need to make it through life’s storms.
I have a dream of writing a book that will inspire and guide families living with the daily battle of Duchenne Muscular Dystrophy. I also have simpler dreams. I think that many of us do without realizing it. A simple dream can be to wake up each and every day filled with gratitude for another glorious day of life and going to bed each night feeling fulfilled and knowing that we loved and learned something knew.
The key to reaching our dreams and goals, despite the bumps in the road, is to never give up and to keep moving forward even when we feel afraid. I have heard it said over and over that courage is feeling fear but moving ahead anyway. Courage is overcoming our past and our imperfections and believing in ourselves no matter how many times we may fall and skin our knees.
When I think of courage and determination, I think of Rosa Parks, Maya Angelou, Steve Jobs, my mother who raised all three of us girls with little to no help, my grandmother who came to a new country and raised her children on her own, my sisters and my boys. I think of parents who put a smile on their faces and do the best they can for their families even though they feel afraid of a life threatening diagnoses.
No dream is ever too small because we are all part of a greater whole. Our contributions may be as small as bringing a smile to someone’s face, holding the door open for the person behind you or as big as inspiring millions like Martin Luther King, Jr. During his life, Christian was not able to join the football team or shovel the neighbor’s driveway (he had such a kind heart that I know he would have if he was physically capable) but he brought a smile to my face when I was most afraid. He inspired teachers and fellow students by going to class every day and completing his homework. No matter how much fear he felt he always smiled, loved and showed kindness.
I encourage you to never give up on your dreams. If enough of us do something every day that will make a positive impact on the life of another, we will truly change the world.
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
I went for a walk this morning on the River’s Edge Trail, which runs along the bank of the Missouri River. The leaves were glowing a brilliant yellow and several birds flew ahead of me along the way – a magpie, a robin and a chickadee. The way the sun hit the trees on top of the hill and how it caused the foilage at the side of the trail to glow took my breath away. I am almost overwhelmed at times with the beauty of God’s creation. Since losing my son in 2014, I see things with different eyes. I went on a walk with a friend who also lost a son, and we agreed that it’s almost like layers have been peeled away and everything we see is blindingly beautiful compared to how we saw it before.
There have been many days over the last year, however, when I have been engulfed in darkness. I have experienced the dark night of the soul and experienced pain so intense that I just couldn’t stand being me. During the first year after losing Christian, I did what one of my grief books recommended, which was to lean into the grief. This meant that I cried the tears I needed to cry and felt what I needed to feel. I leaned on God constantly, read His word more than once a day for a while, and prayed often. He has done a great healing in me that I will never forget.
The darkness set in during the second year. Taking care of my youngest son, Andrew, although difficult to do while processing the tragedy of losing Christian, gave me purpose and something to focus on. I still felt important and needed. When I returned to work after over 10 years, everything I had ever believed about myself was dramatically changed. All of a sudden my husband was taking care of Drew, cooking meals and cleaning the house – things I have done since we married in 1992. Suddenly I had no idea who I was.
Rather than turning to God in prayer and to His Word and reaching out to supportive friends, I turned inward and started defining myself by how the world viewed me and by what I did each day. I felt unimportant and lost. I stopped blogging because of the fear of what people would think if they knew I was in so much pain. I didn’t want to be a downer by writing about the darkness and sadness.
The truth is that without darkness, we are unable to learn what needs to be brought into the light and healed. The pain and difficulty we endure becomes life experience, and although we would rather aviod it, we can use it to help others. Sharing my broken heart can actually help someone else who is going through their own personal tragedy.
As much as I want to be done grieving, I am not. As Marianne Williamson states in Tears to Triumph, “it (grief) is a process – not an event- best served when we surrender to it fully. Grief allows us to process incrementally what might be too shocking to the system to have to process all at once.”Tears are nothing to be ashamed of, especially when they are for someone we cherished and loved so much who is not longer with us. They wash away layers from the heart and help us to see everything with new eyes. As I continue to cross this vast sea of grief, I will share the lessons learned and the things that God wants to show me in hopes that I can help others know that no matter how deep the sadness, there is a light at the end of the tunnel.
A few months ago, my husband asked me to watch a movie with him called The Way starring Martin Sheen and directed by his son, Emilio Estevez. In the wake of the loss of his son, Thomas Avery decides to walk the Camino de Santiago, a 776 km pilgrimage across Spain also known as The Way of St. James. The images in the movie were stunning and breathtaking. After having lost my oldest son in 2014, I really connected to the movie. Each person takes a stone with them that symbolizes their burdens. Along their pilgrimage they are able to lay the stones in an area to symbolize leaving their burdens behind.
The burdens people release have much to do with their reasons for walking the Camino. It may be the loss of a loved one, the loss of a job or overcoming a physical challenge.
The images online and in the movie are numerous. I encourage you to follow a Camino page on Instagram or search online. I experience peace from many of the images.
The journey ends for most at the Praza Obradoiro Cathedral. The images of the Cathedral brought tears to our eyes.
One of the most memorable parts of the movie was seeing the massive incense burners swaying to and fro across the Cathedral.
The journey takes at least a month and many walk all the way to the ocean. Some start further into France before reaching Spain. There are numerous documentaries and one we enjoyed is called Walking the Camino. This movie affirmed my decision to add this pilgrimage to my bucket list.
It may be years until I am physically able to complete this journey let alone getting the time off of work, but I decided to start my journey now. I am not able to actually fly to the beginning of the Camino at St. Jean Pied De Port, but I can walk daily to overcome the physical discomforts of muscular dystrophy, lessen the depression and anxiety of daily life and loss, and strengthen my mind and body for something great which I hope to achieve. Here are pictures of my Camino:
I walk to the courthouse at least twice a day and always encounter beauty, whether it’s a sparrow in the grass or patterns on the sidewalk. The flower garden in Gibson Park is full of color. The River’s Edge Trail by Rainbow Dam is so peaceful and is also my favorite place to walk.
My sister and I walked the M trail behind the University of Missoula (go Griz!) and she inspired and encouraged me to keep walking and improving. Thanks Sis! I will always be thankful that my husband introduced me to the Camino de Santiago and we both hope to make the journey together one day. Check out the movie on Netflix and see if you can walk away without being inspired. Much hugs and love to you all!
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