support – The road less traveled

The Truth

I haven’t posted in quite some time for a few reasons. A big one is…I wasn’t ready to share my testimony – the darkness I endured in the spring of 2023 that almost ended my life. Another reason is not prioritizing myself – letting my needs and gifts sit on the back burner of my daily life for decades.

A few days ago, I shared my story on Facebook. Here it is…

In one of my weakest, most vulnerable moments, I am ready to share what I have been going through over the last few years. I have a load of work ahead of me and Drew is waiting for me to get him going. The truth is, I am not okay. I have come a long way by the grace of God but in 2023, I almost lost everything.

I did everything I could to keep my family healthy for years, pouring my energy into keeping my sons’ disease from progressing and my husband’s heart from becoming weaker. I thought I had control of it all until Christian passed away. Even after he passed, I still pushed and pushed – going back to work, becoming a people pleaser and pushing down the emotions and trauma I have experienced over the last decades.

One morning in March of 2023, I broke. My nervous system couldn’t take it anymore. I took a downward spiral and I was in fight or flight for almost 2 months. This eventually led to a failed suicide attempt. This is where I bare my soul. The paramedics rushed me to the hospital and God saved me.

I hit rock bottom and it was solid because God was there. He has raised me up and opened doors that I never imagined would open. He has brought loving, supportive friends into my life, I have been learning things I would have never learned if my life hadn’t fallen apart and I am truly blessed.

I have been in therapy, working through the trauma that has been in my body for years, leading to chronic illness. We have been uncovering old wounds and pain that I haven’t felt since after Christian passed. This pain has been showing up and at times, bringing me to my knees.

This is going to be my testimony. I have compassion for those who have lost all hope and think suicide is the only answer. I have compassion for those who suffer from mental illness. I have compassion for anyone who is suffering. Please know that you can call or text 988. Call a friend or your therapist. Call 911 if you have to.

A woman was on the 9th Street bridge yesterday and a police officer was trying to help her to step back. I felt so much heartache when Dave told me he witnessed this as he was driving in his mail truck.

You are NEVER alone. God loves you and always has and always will.

I wanted to share my most painful, vulnerable story in the hopes that it will help someone. You don’t have to do it alone. Join a church, call a friend, get some counseling, pray, call 988. You are loved my friends.

Okay, I admit that after I posted this I experienced what my therapist calls a vulnerability hangover – that time period after being vulnerable and before receiving a response. That gap of time when you wonder how others will receive what you have shared.

Today, I am at peace with sharing my story. I truly hope it helps at least one person – someone who is without hope and wanting to give up.

I am ready to continue my journey with you. I truly miss writing and being creative. God blesses every one of us with talents and gifts that we can bless others with. My writing is one of them.

I am truly thankful for your time and I truly hope I can add some joy and hope to your days. Much love to you my dear friends!!!

The Light in the Darkness

*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.

Photo by SevenStorm JUHASZIMRUS on Pexels.com

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 Arena https://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.

You are never alone! My next post, when I am ready, will be the most difficult, real post I have written.

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.

A Fight to the Finish

Today, a young man named Jacob passed away from complications due to Duchenne Muscular Dystrophy. I have been connecting with his mother, Apryl, on Facebook for the last few months. Since Christian passed away in October, I have been able to connect with other mothers who have lost a son to Duchenne Muscular Dystrophy (DMD) or are still fighting the battle like I am. Andrew is 20 and he continues to fight every day despite seeing his friends pass away and losing his best friend, his brother. A kind woman, who is also named April, mailed me a drawing of Christian. Her son passed away earlier in the month and despite her pain and grief, she sent me a beautiful drawing. I have also had the blessing of being able to help another family in Montana by connecting with yet another April on Facebook. Christian loved helping others and I knew he was smiling from heaven when April’s family came over to pick up his electric lift, intercom system and other things that would bring a smile to little Tyler’s face.

So many lives lost. Ever since the boys were young we would hear about their fellow campers passing away. Some as young as 15, some in their early 30’s. Either way, it’s just not fair. It made my heart heavy to hear the boys talk about their fellow campers and friends who had passed away. Friends they laughed with and could be completely themselves with. I see their faces but I cannot remember all of their names. I recognize them when I look through the MDA camp photos from years past.

Summer Camp 2004_0769 — Christian and Mikey at MDA camp in 2004

Summer Camp 2004_0764 — Christian, Ryan Clinch, Andrew and Mikey at MDA camp in 2004

Since Christian passed away, I have felt this inner pull to do something. I read something a few nights ago that said not to waste my pain. I started a Montana Duchenne Muscular Dystrophy Group on Facebook and I will continue communicating with other families and encouraging everyone to support each other through such a difficult battle. My husband thinks I need to write a book. As frightening as that sounds, perhaps the best place to start is right here, on this blog.

All I know is we need to learn more about Duchenne Muscular Dystrophy – what it does to the young men’s bodies as it progresses, how it affects family and communities and what we can do to support each other and eradicate this monster. There is so much research going on that it makes my head spin. Perhaps if more of us learn about DMD and support research through the telethon, lockups, fill the boot and buying shamrocks, we can find a cure.

Rest in peace Jacob, Natoma, Mikey, John, Keith, Christian and all of the young men who have fought the battle to the finish.

Battleborn

Ever since the tragedy in Connecticut, I have felt lost, betrayed, sad, anxious and in other ways that I have trouble finding words to describe. I am sure many of us feel this way. I have been unsure of what to post until a few minutes ago when Battleborn by The Killers came on while I was finishing up the dishes. I stopped mid track to really listen to the lyrics:

You lost faith in the human spirit

You walk around like a ghost

Your star-spangled heart

Took a train for the coast

This is exactly how I have felt at times. Anyone else? How about:

When you shine you’re a hilltop mansion

So how’d you lose the light?

Was it blown by the wind,

In the still of the night?

I have felt like my light has been blown out and I caught myself cursing the darkness last evening when I went on a rant about guns. All it did was make me more upset. Cursing the darkness is futile, wasteful thinking and speaking. The song goes on to say “We’re up against the wall” and this is good:

When they knock you down

You’re gonna get back on your feet

In the community where this tragedy took place, in the state of Connecticut, and in our country, we will be there for each other and we will get back on our feet! And finally:

When they break your heart

When they cause your soul to mourn

Remember what I said

Boy you was battle born

This tragedy broke our hearts and we grieve for the little ones, teachers and principle and their families and the entire community. We need to remember that we are battle born. We will never stop loving one another, caring and reaching out. We are strong and will never back down against the evil and injustice in this world!

Check out this song on Grooveshark or Spotify and listen along and see if it doesn’t make you want to get up and shine your light instead of cursing the darkness!

Just keep swimming!

I am having one of those days when my body does not want to cooperate with my mind. Sometimes, despite my best efforts in my diet, I still experience inflammation. Unfortunately, this does not mean that I can stop moving. On days like today, I need to motivate myself and Dory from Finding Nemo is always there for me. Remember when Dory and Marlin were descending into that deep pit in the ocean? She started to sing “just keep swimming, just keep swimming”. I used to keep a little plastic toy of Dory close by so I could be reminded to just keep swimming! I also often have to remind myself that it is all right if I am slow because at least I am moving forward.

Maybe more of us need to be like Dory. She was curious, joyful and full of life. I find myself to be like Marlin, fearful of trying new things, a little uptight and sometimes needing someone like her to hold my hand as I swim down into the unknown.

If I need a good laugh, I can listen to her try to communicate with whales.

I think that many of us can identify with at least one character in a Pixar movie or any movie and sometimes that can motivate us to keep on trudging towards victory no matter how we may feel! Is there a cartoon/Pixar/movie character that you can identify with?