caregiving – 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.

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.

Beautiful Hands

My grandmother of 92 years is in hospice care. I drove over to see her last week and was taken aback by how frail she looked. As I sat next to her and talked to her, I kept looking at her hands. I thought of everything her hands accomplished during her life – raising three boys; taking care of a home; breeding and raising beagles; growing, picking, and canning massive amounts of vegetables every year; shooting and processing deer every year; raising and caring for rabbits; boarding dogs; creating art and building things; and living a full life. Her hands became still on her blanket as she slept, and I watched her hands raising up and down to match her breathing as I thought of everything they accomplished during her life.

July 19, 1980 — Some of my fondest memories are being in grandma’s backyard or in her garden.

Grandma only said what needed to be said and she said it with truth and boldness. I honestly cannot remember her ever making small talk. The funniest thing I remember hearing her say to date was about a woman sitting in the waiting room with her as she waited for the eye doctor: “She talked and talked for 30 minutes and didn’t say a thing.” Grandma listened and I know this because she always had a remedy or an idea for just about anything. When Dave had to go into the hospital for a stomach ulcer, her advice was to have him eat some lamb. When I wrote to her about our finches and the eggs that were being laid, she gave me tips on caring for a female that was having a hard time passing the eggs. I told grandma once how much I enjoyed hearing chickadees and she told me that she always knew when a deer was around because the chickadees would start chirping. I am thankful for every moment I have had with her and I will always try to follow her example in many areas of my life.

Equally amazing is my sister and our good friend, both of whom are caring for my grandma. The sacrifices they are making, the dedication, and the love they are pouring out for her truly humbles me beyond words.

We are not here on this earth just to exist, waiting for Friday every week and dreading Mondays. We are here to love, create, serve, worship, lift others up, and bless one another. One of the greatest gifts God gives us is the opportunity to care for others – whether it is hands on caregiving, offering a smile to a stranger or encouragement to a co-worker, donating our time or resources to people in need or simply being who God created us to be with no fear holding us back – only holy boldness and beautiful hands.

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.