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.

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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.

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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.

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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.

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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!

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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.

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.

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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.

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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.

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