Grief, Interrupted

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The year after Christian passed away was extremely painful, but thanks to the strength and comfort of God, we made it through a day at a time.  Dave’s job became extremely demanding in the following month after we lost our boy.  He went with the flow for the next several months but by summer, working 14 hour days was not enough for the company, so he had to leave.  The following September, Dave suggested I call the company that I worked at before leaving in 2005 to care for the boys’ increasing needs.  I called them, dropped off my resume, and everything fell into place.  I was terrified because I had been out of the work force for so long but I was also thrilled and very thankful for the opportunity to work for my family again.

About a week into my return to work came the first anniversary of Christian’s passing.  Dave suggested that I go to work because the distraction might be good for me.  I lasted about five minutes.  Over the first few months I experienced a lot of nervousness each morning before I left for work and I started to experience slight anxiety when I performed certain job duties.  I thought nothing of it because all jobs come with stress and anxiety.  By summer, my anxiety increased and depression started to weigh me down.  I started becoming emotional about things that normally would not make me so upset.  I began to worry about the most ridiculous things, which fed my anxiety.

I took the second anniversary of Christian’s passing off along with what would be his 22nd birthday.  I spent the greater part of that fall in a state of sadness as I remembered the days leading up to his passing.  By Christmas my emotional problems worsened and the anxiety led to panic episodes the following spring.  I took a few days off and started seeing a counselor.  This slowly started to help and I really thought I was going to start feeling like myself again.

About two months later, I started to experience tightness in my neck.  I associated it with ergonomics at work and tried carrying things differently, sitting up straighter, etc..  By fall, my neck worsened and the spasms set in.  I kept working hard and doing everything I could to keep up with the workload.  I also started acupuncture and massage therapy.  My condition worsened to such an extent that I was having trouble eating, driving, and putting my makeup on.  I did not receive a diagnosis and treatment until March of this year.  I was confident that the treatment would help and things would go back to normal again.

The first set of injections only made my condition worse and I had to take a month long medical leave.  Before I requested the medical leave I had a major panic episode and my good friend and neighbor stayed with me for a few hours.  Before she dropped me off at home she looked at me and said that “my kettle blew.”  She said that at the botton of the kettle was grief and stacked on top of that was my illness, worry for my son and husband, and the stress of my career.  She said I needed to deal with the loss of my son by joining a grief group and learning about the stages of grief.  It was at that point that I realized that I hadn’t been grieving since I returned to work.  The fear, anxiety, and massive change I went through interruped the grieving process.  I ended up leaving my job shortly after my medical leave.

It is easy to associate depression with loss – losing a child is devastating and I experienced days and moments of sadness that I thought would crush me.  Ongoing depression that does not let up, however, is a sign that a person is not grieving in a healthy way.  I had days that were harder – the pain felt more raw and I would cry, but I really thought I was moving forward and healing from the loss.  There was so much going on in my life, so much change, that the grief and pain ended up buried underneath of it all.  Unfortunately, it took an illness to open my eyes and see that I still have some grief work to do.  Perhaps this blog post is a way of moving forward.

It may seem easier at the time to run away from the pain, bury it by keeping busy, or to tell everyone we are fine, but in the long run it can have devastating effects on our emotional, physical and spiritual health.  I encourage you to reach out to friends, family, your pastor, grief counselors, or write it all down in a journal.  Don’t bury your pain.  Go through it so the pain doesn’t end up being wasted.  Perhaps making it to the other side of difficulties makes us stronger so we can in turn help others who are hurting.  Christian was my son, friend, and my teacher.  I love him too much to waste the pain of losing him.

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April from Kalispell drew this photo

 

Double Rainbow

My grandmother, Joan Juanita Peterson, was laid to rest last Saturday.  When we walked into the funeral home, one of the first things I noticed was her casket – pine green with gold pine trees along the edges.  The first thing that came to mind was, “that matches her.”

Once we were all seated and the pastor started the services, the first of 3 songs started playing that grandma had picked out months before – all classical pieces.  As I sat next to my dad with tears streaming down my face, I remembered the cassette tape she gave me when I was younger.  It was by Mantovani.  At the time, I was listening to Duran Duran and Bon Jovi but I remember enjoying and appreciating the cassette in private.  I wish I would have kept it.  The pastor shared great stories and memories of grandma and my heart ached for her three sons as well as my sister.  Sherry took care of grandma in her later years, mending fences and roofs, painting, and replacing floors.  She always bought grandma cotton candy at the fair.  She also took care of my grandma in her final days until the end.

The graveside services were beautiful – warm weather, blue skies with soft clouds drifting by, and cows quietly grazing in the distance.  I commented that it was a beautiful place to be laid to rest.  The funeral director agreed, saying he also enjoyed going up to the cemetery for moments of peace at the end of the day.

At the end of the services I gently patted grandma’s casket and told her I loved her.  There is a beautiful crab tree in bloom right over grandma and grandpa’s grave and it was full of pink flowers.  I plucked one of the blooms and set it on her casket before I walked away to join my husband and son.

Everyone was hungry at the luncheon and I was humbled by the church and everything they did to help my family.  They provided a huge table of food and a kind woman plated up my mother’s food so she could keep both of her hands on her walker.  My two-year old nephew, who has also been diagnosed with Duchenne Muscular Dystrophy, ran around the church basement in his little suit with a mischievous grin on his face.  Despite the sadness in my dad’s heart, this little fella did not fail to make Dad smile.

That evening a storm rolled in.  When the rain started to fall a double rainbow formed. It stretched from the edge of the Judith Mountains to the front of the house.  Over the edge of the mountains, lightning started to strike.  The Judith’s took on an otherworldy, orange color and they lightly glowed in the setting sun.  The closing of the day we said goodbye to grandma could not have been more beautiful.

The next day, my son said “Mom, the lightning was there along with the rainbows because great grandma was sassy.”  Well said son, I thought.  I cannot think of a better closing to the great novel of my grandma’s full life.  You have inspired me to live more, love more and fear less; to be bold and be myself; and to refuse to take a backseat in life.  Rest in peace grandma – you were a warrior and an artist who painted the most vivid picture of life.

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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.

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.

 

The Small Things

When I was a youngster, Thanksgiving meant Ritz crackers and cheese, mince meat and pumpkin pie made from scratch by my grandma, cranberry sauce, yams, turkey, rolls, olives and movie marathons.  I always looked forward to my grandpa stopping by to drop off the pies and chatting with my mom over a cup of coffee.  We never had any large family get togethers but it always included mom, dad, myself and my two younger sisters.

Over the years, as my nieces and nephews have grown and my sisters have moved away, we have had a few big gatherings.  We would have a houseful – people sleeping in the spare bedroom, on the couch, air mattress and the floor.  These were Christian’s favorite Thanksgivings.

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The boys’ favorite Thanksgivings were spent with their cousins.
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Not even a month after he lost his older brother, Drew found comfort in spending time with his cousins during Thanksgiving.

For the last 2 years, the three of us have had a quiet meal while the fourth chair remains empty.  We will visit the cemetery tomorrow morning and do our best to enjoy another Thanksgiving without our boy.  Christian always loved and appreciated his Thanksgiving meal.  He also remained thankful for the smallest of things until his last breath.

Every time I see something beautiful, I wonder if Christian is showing me what he always appreciated while he was on this earth.

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I am thankful each and every day that I was able to take care of Christian for 21 years.  I am thankful for the conversations we had while I cared for him, the things he did to make me smile and for the strength I had to care for my boys with little to no help.  I am thankful for everything Christian taught me and for the things I continue to learn as I care for Andrew.  When you care for someone who cannot leave the house because of their failing health, you learn just what we should truly be thankful for – a dove on the sidewalk, the warmth of a blanket fresh out of the dryer, a short visit from a dear friend, music, hugs, a birdsong, the smell of fresh coffee, a clean house or hearing the sound of the warm air flowing through the vents on a chilly winter night.  The more I become thankful for, the more reasons I find to praise God.  Praising God for the small miracles opens our hearts to the bigger gifts.  Our lives become filled with peace and unexplainable joy as we carry Thankgiving into our everyday lives.

1000 Miracles

Two years ago today, we laid our son to rest.  We witnessed the love and support of many – our loving family, friends we hadn’t seen in years, and friends who traveled over mountain passes to say goodbye to our boy.  A bouquet of flowers sits on my kitchen table – an array of orange roses along with white, orange and purple flowers I cannot name.  When I awoke and walked into the dining room, the scent of the flowers made a picture of Christian’s room filled with flowers after the funeral flash into my mind.  I felt the hollowness and the ache of my boy being away from this earth.

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I took on a challenge of sorts and decided to begin this last Thursday – the day our boy passed away.  I am writing down at least 10 things a day that I am thankful for along with reading and reflecting on a devotional by Ann Voskamp called One Thousand Gifts.  After 3 days, I have learned more than I have in months, maybe even years.

I learned why my mind darkened and my heart closed to God’s grace.

My husband and I went through some old photographs – pictures of my sons when they could walk and stand.  Swimming, vacations to Disneyworld and Las Vegas, horseback riding and spending time doing so many fun, simple things in Lewistown with my parents, sisters, brother-in-law and cousins.  Those were the days when my heart was full of light.  I felt, witnessed and lived God’s grace.

As the boys lost the ability to walk, brush their teeth or even feed themselves, my heart slowing darkened.  When I needed God’s grace the most I closed myself off from it.  I didn’t realize at the time why it became harder for me to notice the miracles I always noticed before Christian’s health really started to decline.

Yesterday, I read these verses:

“For that which is known about God is evident to them and made plain to their inner consciousness…For ever since the creation of the world His invisible nature and attributes, that is, His eternal power and divinity, have been made intelligible and clearly discernible in and through the things that have been made.  So men are without excuse…they did not honor and glorify Him as God or give Him thanks…and their senseless minds were darkened.” -Romans 1:19-21

My heart began to hollow out when I stopped expressing my thankfulness to God for His gifts big and small.  He gave us so much to praise Him for and continues to each and every day.  When we notice and confess the goodness He so readily gives to us, our eyes open to His divinity which surrounds us all of the time.  I know now why I began to see an extra layer to life after Christian passed away.  I began to notice things that made my heart want to burst – colors in the sky I hadn’t noticed before, sunlight on a sparrow’s face as he enjoyed seeds from my feeder, the sounds of the wind blowing autumn leaves still attached to a cottonwood.

I went on a walk yesterday and noticed things I had not noticed weeks ago.  I am sure I looked funny because I stared in amazement at the Missouri River and the way the moving lines in the water reminded me of an orchestra, the golden leaves gently fluttering on the trees, and dogs with happy faces running in the dog park.

The more thankful I become, the more I see, feel and live God’s grace.

Remembering God’s Grace

Fall had always been my favorite season.  The beauty of the changing leaves and the flight of the starlings amazed me.  Since losing my son however, the arrival of Fall has brought with it a sense of dread.  Now, seeing the flowers wilt and the branches become bare make my heart ache.  This Thursday will be 2 years since we lost Christian.  As the yellow and orange leaves scattered my front lawn, I remembered going outside to take his photo on his last birthday.

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When they came to pick up the signs we rented for Christian’s birthday, I felt an ache in my heart and I didn’t know why.  The fact that we would lose him 15 days later was the furthest thing from my mind.

As the 27th approaches, I want to remember God’s grace.  I want to remember the kind things people did and said after Christian passed away.  Sure, the pain will be there but God’s grace can be in my heart too.  We literally had a roomful of flowers and a stack of sympathy cards – some from people I had never met such as a woman in Lewistown who gave us $100.  I remember my friends, Tracy and Amanda, coming over to the house and offering to help with the food after the services.  A woman from Kalispell who lost her son to the same disease just weeks prior drew me a picture of Christian.  My dad drew a picture and my mother helped as much as she could.  Another woman who lost her son to Duchenne MD flew in from Columbia Falls to attend the services.  Sara from Infinity Lofts set up a dove release for us at the graveside and let my son Andrew hold and release the first dove.  My good friend Michelle drove up from Lewistown and brought me something vegan to eat.  Our friends Mike and Monica brought us our groceries for a couple of months until I was ready to go to the store myself.  We received care packages from friends in Wyoming and Hawaii as well as family in Montana.

 

 

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We went back up to the cemetery a few days later to release more doves.  Drew was able to hold and release Sirius again.

The pain was unimaginable but God’s grace kept us from completely breaking.  Remembering the love and kindness of others makes the pain a little more bearable and gives me comfort even today.