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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Scars Strengthen Us

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.

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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.

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365 New Beginnings

As I look out the window at the last day of 2017, I am thankful for the beauty and perfection on display.  The snow is deep and smooth and it covers everything in a graceful blanket of white.  The sky is a soft blue with whispy clouds and the birds gently eat at the feeders.

Like many, I am ready to say goodbye to this year and hello to 2018.  I have never been one for resolutions or crash diets, but I do look forward to a new beginning.  I am ready to leave the difficulties of this year behind and carry with me the lessons learned and the things God has blessed me with into 2018.  God has blessed me with His strength and mercy every single morning that I opened my eyes.  His Word has given me guidance through difficulties and challenges and has given me comfort on my most painful days.  He has given me a loving, supportive husband and a wonderful son.  I was a bride’s maid in my niece’s wedding this past summer, and my husband and I were able to take a long overdue vacation to sunny California.  God has given me His comfort when I missed my son the most – if I would wake up dreaming that Christian is still with us or if I dreamt of losing him again.  I have learned the importance of balance and rest of the mind, body and soul and how loving ourselves is the foundation to everything in our lives.  By loving ourselves, we become more open to receiving the love of God.  God pours His love into our hearts until they overflow so we can in turn love others.

What are my intentions for the new year?

To love even more…

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To thank God for each new day and for the miracles He so graciously bestows upon us…

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To invest in the gifts God has given me so I can bless others with them…

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To serve others more…

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To do more to brighten another’s day, whether it’s a smile, holding open the door, letting a vehicle go ahead of me in traffic or sending a greeting card or letter…

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To keep my thoughts centered on the good things in life while letting go of the rest…

Each day is a new beginning, a chance to enjoy God’s mercy and love while experiencing His goodness which He promises us in His Word.  I wish all of you a peaceful, blessed 2018 and that all your hopes and dreams come to life while love flourishes in your hearts and daily lives.

 

 

A Year of Blessings

 

In the book, One Thousand Gifts by Ann Voskamp, I am on gift number 548.  I started writing down God’s gifts last fall.  I have asked myself repeatedly why I haven’t reached 1000.  I admit that over the last year I have had a tendency to complain instead of offering praise to the Lord for His many gifts.

I did not fully understand the meaning of bittersweet until we lost our boy.  He suffered for the last year of his life and I felt relief (for him) mixed with profound heartache (for me) when he passed away.  Christian spent the last year of his life tilted back in his wheelchair to relieve his chronic pain.  He was able to read books on his iPhone because it was so lightweight and he played video games for limited amounts of time every day.  He lost the ability to play video games the night before he passed away.  He drove into the kitchen, held up his hands and said “Mom, my hands are not working.”  He didn’t want to be resuscitated or to live with a breathing tube and he hated hospitals.  Christian told me weeks before his passing that he wanted to die at home, in his own bed with his bird, Kiwi, in the room.

The pain we endured during the weeks and months that followed was unimaginable.  How was it possible that I experienced joy when I looked at the sky as it turned red and orange at sunset?  Why did everything look so much more beautiful after I lost my son?  It was like a layer was peeled away from my soul and everything that looked beautiful before now brought tears to my eyes.

Being thankful makes the pain more bearable – the pain of losing a loved one, of the violence in the world, the constant stream of negativity in the media – the pain of living in a broken world.  God gives us little presents each and every day and if we open our hearts and our eyes we will find them:  the chitter of a chickadee, the glint of sunlight on a soapy plate, steam rising from a hot cup of tea or an unexpected call from a loved one.

I have so much to be thankful for and I am making more of an effort to focus on blessings instead of burdens.  The Lord has given me strength to put one foot in front of the other on days when the loss feels fresh, He has blessed me with a loving husband and son, with an accessible home for Drew, a wonderful job, and a long awaited trip to California this past summer (thanks to my sister who came up from Wyoming to care for Drew).  God continues to bless us with His love, grace and healing.  He blesses me with the guidance and strength contained in His Word each and every morning.  As we thank the Lord for His goodness we become lights in a dark world and we give hope to those who are suffering.

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The Beauty of the Lord

On the evening before Christian passed away he told me that all he wanted was to be able to look at things without being in pain.  He wanted to watch his finch, Kiwi, hop around or relax in his cage.  He wanted to gaze at birds at the feeder, beautiful sunsets, and stars in the night sky.  Little did I know these were some of the last words he would say to me.

Tomorrow marks three years since Christian left this world to be with the Lord.  Many think that with time it gets easier, but in some ways that is not so.  It adds on another year since I have heard his voice and seen his sweet face.  The ache in my heart feels stronger at moments and I remember things I would rather forget.

A few days ago I came across Psalm 27:4  “One thing have I asked of the Lord, that will I seek, inquire for, and require:  that I may dwell in the house of the Lord all the days of my life, to behold and gaze upon the beauty of the Lord and to meditate, consider, and inquire in His temple.”  Even though I have read and meditated on this verse before, it moved me to tears.  I remembered what Christian said and I wondered if he knew he was going to die.

This scripture, among others, moved me to make more of an effort to gaze at the beauty of God’s creation and capture it in photographs.  I find beauty in seeing the dark outline of tree branches against an autumn sunset, a patch of light on the tract books at work, a house finch resting on the shepherd’s hook, flowers on my table, squirrels playing around a tree at the park and Canadian geese lying down in the grass.  In honor of my son I encourage you to take a photo of something beautiful and post it on social media.  Noticing God’s abundant blessings and sharing them encourages others to focus on the goodness of God and also spreads more joy.

Goodbye Summer

Fall is by far my favorite season.  It brings golden leaves, bluer skies, and cool breezes.  After a summer dominated by smoke and fire, it was a great relief to see two days of rain and cooler temperatures.  I looked out the window and noticed something different along with seeing a blue sky – the trees were swaying.  It took me a while to realize that we barely had any wind since the heat and drought set in late June.  The wind usually blows so much that we practically fall over when it doesn’t, so welcome back wind!  I will try not to complain when you blow my hair all over the place!

With summer coming to a close and fall approaching fast, I wanted to share the highlights of my summer in photos.  I went for a visit to Lewistown in June and enjoyed taking Mom to dinner at the local Mexican restaurant.  I enjoyed several walks with my family, before the smoke rolled in, on the River’s Edge Trail.  My husband and I celebrated our 25th anniversary by taking a trip to San Jose and San Francisco.  We crossed the Golden Gate Bridge on foot and it was exhilarating.  Finally, in August I was thrilled to see Drew in a tuxedo for the first time for my niece’s wedding.

I admit that the smokey skies made their way into my spirit.  I forgot that the smallest of gifts are the most important:  a mourning dove perched outside of the dining room window, the chatter of chickadees on my way back to the office, golden spots of sun on the floor, ceramic pigs strategically placed around my house by my neighbor for me to find, time with my husband on the couch watching Suits, and a smile from a coworker.

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I came across the quote in the picture above during one of my morning meditation sessions.  When we live in our heads, our lives can pass by unnoticed.  We miss the bird placed on a branch in the perfect place for us to look up and see him.  We miss the cloud in the sky shaped like a heart or the uplifting lyrics of a song.  It’s better to let our fearful thoughts pass by like clouds in the sky than to end up underneath them for months, even years.  Remember the cartoons when a character had a raining cloud over his head wherever he went?  That is exactly what it is like to live in our heads.  This is something I am guilty of and I have realized that life is far too precious to go by unnoticed for even a moment.

Next month will be three years since Christian passed away.  The turning leaves take me back to the months before his passing and it can be very painful – like it just happened.  As the day approaches I want to see the world as I would want Christian to see it – a miracle in process, given to us by a God who loves us.

 

My Lenten Journey

As a child, I remember the purple banners hanging up in the church in the weeks before Easter and people giving up bad habits for Lent.  I would watch Jesus of Nazareth every year without fully comprehending what was unfolding on the screen.  I squirmed as Jesus was whipped and nailed to the cross.  As I became older, I had a difficult time with the violence and stopped watching movies based on His crucifixion.  Today, my devotionals have led me to the crucifixion in God’s Word and what it means in my life.  Admittedly, I become emotional when I read of His grief leading up to His arrest, the flogging and how the soldiers cast lots over His garments.  It took the loss of my oldest son to fully comprehend the impact of the crucifixion and resurrection of our Lord on our lives today.

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Jesus died so we could live.  He took the guilt and sin of the world upon His shoulders because He loved us deeply and so we can enjoy eternal life with Him after we die.  Until recently, I didn’t fully know the power and significance of His resurrection because I have been stuck on the crucifixion – not only His but my own.  I have focused on the negative, on my mistakes and my past.  I have resisted healing from my loss out of fear of forgetting Christian – the sound of his voice, his strength, kindness and how he made me laugh.

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Christian at the Lewistown Fair

I began my Lenten journey with a booklet with a dragonfly on the front.  It stated Be Ye Transformed on the front.  I have learned that Lent isn’t just a waiting period from Ash Wednesday to Easter.  It is a period of metamorphosis – of letting go of negativity and false beliefs so we can receive the Truth and fully come to know the love of God.

“Just as Christ was raised from the dead by the glory of the Father, so we too might walk in newness of life.” (Romans 6:4)

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When we went to the cemetery to visit our boy today, it was sunny and we could hear western meadowlarks in the distance.  A chickadee, which happened to be one of Christian’s favorite birds, landed in the tree next to us and sang a bit.  As the sun warmed my face, I thought of Christian in heaven, with his favorite animals by his side, sitting in a mountain meadow surrounded by mountains surpassing any of ours in beauty and size.  I didn’t shed any tears until a woman drove up to visit a grave across from ours.  The age of the young man buried there isn’t far off from Christians.  I cried as I watched her approach the headstone and kneel in front of it.  “I know” I thought as we drove away, leaving her some privacy.

One of my favorite scriptures is John 10:10, when Jesus said “I came that they may have life, and have it to the full.”  What does it mean to have a full life?  It means greeting each day with gratitude and ending our “I AM” with powerful, positive words.  It means fully accepting and enjoying ourselves, opening our hearts to God’s abundance and never giving up.

Lift Up your Eyes

“The Lord said to Abram after Lot had left him, Lift up now your eyes and look from the place where you are.” -Genesis 13:14

Lot and Abram had to separate because the land was not big enough to sustain all of their herds, helpers and goods.  Abram gave Lot the first choice on whether to choose the better land in the Jordan Valley or the less desirable land of Canaan.  Lot chose the Jordan Valley.

This story has great meaning in my life today.  It is far too easy to become discouraged because my sons were born with a life threatening disease without a cure.  God doesn’t want us to focus on everything we have lost.  He wants us to lift up our eyes and trust that He will lead us into a bright future filled with possibilities and joy.  It is impossible to notice His blessings and miracles when our eyes are focused on the ground or when our hearts and minds are stuck in the past.  God wants us to lift up our eyes and focus on everything we have, not on what we do not have.  When we keep our eyes fixed on Him, we will see that He has plans to bless us.

Only when we lift up our eyes can we see the blueness of the sky, the way the white clouds effortlessly float past the window, the bird on the branch, or the flower on the windowsill. When we thank the Lord for a new day the minute we open our eyes each morning, we invite His blessings into our daily lives.

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Looking up can bring us out of a state of depression and discouragement, and even help us to feel confident.  Today, I encourage you to believe that no matter how difficult your circumstances may be, God wants to bless you and prosper you.

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.

 

Don’t Give Up

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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.