Light at the end of the Tunnel

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I went for a walk this morning on the River’s Edge Trail, which runs along the bank of the Missouri River.  The leaves were glowing a brilliant yellow and several birds flew ahead of me along the way – a magpie, a robin and a chickadee.  The way the sun hit the trees on top of the hill and how it caused the foilage at the side of the trail to glow took my breath away.  I am almost overwhelmed at times with the beauty of God’s creation.  Since losing my son in 2014, I see things with different eyes.  I went on a walk with a friend who also lost a son, and we agreed that it’s almost like layers have been peeled away and everything we see is blindingly beautiful compared to how we saw it before.

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There have been many days over the last year, however, when I have been engulfed in darkness.  I have experienced the dark night of the soul and experienced pain so intense that I just couldn’t stand being me.  During the first year after losing Christian, I did what one of my grief books recommended, which was to lean into the grief.  This meant that I cried the tears I needed to cry and felt what I needed to feel.  I leaned on God constantly, read His word more than once a day for a while, and prayed often.  He has done a great healing in me that I will never forget.

The darkness set in during the second year.  Taking care of my youngest son, Andrew, although difficult to do while processing the tragedy of losing Christian, gave me purpose and something to focus on.  I still felt important and needed.  When I returned to work after over 10 years, everything I had ever believed about myself was dramatically changed. All of a sudden my husband was taking care of Drew, cooking meals and cleaning the house – things I have done since we married in 1992.  Suddenly I had no idea who I was.

Rather than turning to God in prayer and to His Word and reaching out to supportive friends, I turned inward and started defining myself by how the world viewed me and by what I did each day.  I felt unimportant and lost.  I stopped blogging because of the fear of what people would think if they knew I was in so much pain.  I didn’t want to be a downer by writing about the darkness and sadness.

The truth is that without darkness, we are unable to learn what needs to be brought into the light and healed.  The pain and difficulty we endure becomes life experience, and although we would rather aviod it, we can use it to help others.  Sharing my broken heart can actually help someone else who is going through their own personal tragedy.

As much as I want to be done grieving, I am not.  As Marianne Williamson states in Tears to Triumph, “it (grief) is a process – not an event- best served when we surrender to it fully.  Grief allows us to process incrementally what might be too shocking to the system to have to process all at once.”  Tears are nothing to be ashamed of, especially when they are for someone we cherished and loved so much who is not longer with us.  They wash away layers from the heart and help us to see everything with new eyes.  As I continue to cross this vast sea of grief, I will share the lessons learned and the things that God wants to show me in hopes that I can help others know that no matter how deep the sadness, there is a light at the end of the tunnel.

My Camino

A few months ago, my husband asked me to watch a movie with him called The Way starring Martin Sheen and directed by his son, Emilio Estevez.  In the wake of the loss of his son, Thomas Avery decides to walk the Camino de Santiago, a 776 km pilgrimage across Spain also known as The Way of St. James.  The images in the movie were stunning and breathtaking.  After having lost my oldest son in 2014, I really connected to the movie.  Each person takes a stone with them that symbolizes their burdens.  Along their pilgrimage they are able to lay the stones in an area to symbolize leaving their burdens behind.

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The burdens people release have much to do with their reasons for walking the Camino.  It may be the loss of a loved one, the loss of a job or overcoming a physical challenge.
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The images online and in the movie are numerous.  I encourage you to follow a Camino page on Instagram or search online.  I experience peace from many of the images.

The journey ends for most at the Praza Obradoiro Cathedral.  The images of the Cathedral brought tears to our eyes.

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One of the most memorable parts of the movie was seeing the massive incense burners swaying to and fro across the Cathedral. 

The journey takes at least a month and many walk all the way to the ocean.  Some start further into France before reaching Spain.  There are numerous documentaries and one we enjoyed is called Walking the Camino.  This movie affirmed my decision to add this pilgrimage to my bucket list.

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It may be years until I am physically able to complete this journey let alone getting the time off of work, but I decided to start my journey now.  I am not able to actually fly to the beginning of the Camino at St. Jean Pied De Port, but I can walk daily to overcome the physical discomforts of muscular dystrophy, lessen the depression and anxiety of daily life and loss, and strengthen my mind and body for something great which I hope to achieve.  Here are pictures of my Camino:

I walk to the courthouse at least twice a day and always encounter beauty, whether it’s a sparrow in the grass or patterns on the sidewalk.  The flower garden in Gibson Park is full of color.  The River’s Edge Trail by Rainbow Dam is so peaceful and is also my favorite place to walk.

 

My sister and I walked the M trail behind the University of Missoula (go Griz!) and she inspired and encouraged me to keep walking and improving.  Thanks Sis!  I will always be thankful that my husband introduced me to the Camino de Santiago and we both hope to make the journey together one day.  Check out the movie on Netflix and see if you can walk away without being inspired.  Much hugs and love to you all!

The rose or the thorns?

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We celebrated Drew’s 21st birthday at the Allegra in the Wynn.  Chris Myers was eating dinner there and he wished Drew a happy birthday!

Yesterday, Drew had his 6 month checkup with the heart and lung doctors.  Drew has Duchenne Muscular Dystrophy, a life-threatening form of MD that attacks muscles all over the body, including vital muscles like the heart and muscles that help us breathe.  When we took Drew to see the doctors about 7 months ago, his numbers went down, so naturally we were nervous and afraid.  To our surprise, the doctor came in the room, smiled, and asked me what I am giving Drew because his heart strength went up significantly.  It was a blessing and a relief.

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When the boys were young, they participated in Eaglemount, therapeutic recreation for disabled kids & adults.  Christian wasn’t afraid of the horses.

Not too long after receiving the good news, I kept wanting to ask about Christian.  Why did he have to suffer so much?  Why was his heart so much weaker?  WHAT DID I DO WRONG?  WEREN’T YOU PAYING ATTENTION?   Most of the time, as I have been reluctant to accept, we will never fully understand or even know exactly what happened until we see our loved ones again in heaven.  I believe we will experience so much peace and joy in God’s presence that it will not matter.  Even when things go well and life gives me roses, I still want to hold onto the thorns.  What will happen if I stop being so sad?  Will I forget his voice, his smile or his strong spirit?

Part of healing is being thankful for each day and living each day as I know Christian would want me to live.  I have had my pity parties and it’s normal when we are grieving, but after a while they actually do more harm than good.  Complaining and being negative keep us from being all God created us to be and all Christian would want me to be.  There were so many things Christian was not able to do and he accepted it most of the time.  So many things that are mundane or even grievous to the rest of us were all Christian ever wanted.  He wanted to work, run track and do the same classwork as the rest of the students.  He wrote letters until he could not tolerate sitting up at his computer anymore.  He tried reading the bible from front to back until his pain started and he had to spend most of the day tilted back in his chair.  He did everything he could until his last breath that chilly October morning, which feels like it was yesterday and like it was ages ago at the same time.

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I will focus on the roses in life and not hold onto the thorns.  I will honor my son’s life by thanking God for the new day when my alarm goes off.  I will be thankful that I can work and that I have my health.  I will be thankful for clouds as well as sunshine, Mondays as well as Fridays, unpleasant people and sweet people, sour and sweet.  I will live.

 

 

Light Pierces the Darkness

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It has been several weeks since my last post and since then, we have gone on vacation and survived the spring forward time change.  The robins are back and the trees are blooming.  I have put off writing again and again because admittedly, I have been depressed.  Not just the “I’m having a bad day” kind of depression, but the kind that makes your bones ache or   feels like a heavy weight is on your chest and you have to talk yourself into getting out of  bed a lot more than usual.  This is not easy for me to admit.  I had the hardest time trying to pinpoint the cause or event that triggered this cloud that has been hanging over my head – is it grief, lack of exercise or fun, my diet?  Although all of these things can contribute to depression, the antidote that makes a world of difference in finding the light again is contained in one word:  GRATITUDE.

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Years ago, I started a gratitude journal.  I kept it on my nightstand and made myself write down 5 things I was thankful for from that day.  Despite the prognosis of my sons’ disease, I was able to find the joy in life almost every day.  As the surgeries increased and the care took longer and became harder, and as I had to watch my oldest son endure pain and loss that was completely unfair, I stopped writing in it.  A few months after we lost Christian, I bought a new gratitude journal.  I may write down something big like “I am thankful for receiving an unexpected refund in the mail today” or something small like “I am thankful for the chickadees singing outside of my window.”  Anything big or small that we can find to be grateful for can lift us up.  We literally have to lift up our heads and look around so we can notice the beauty of God’s creation, which in turn lifts up our hearts.  A heart of gratitude sets the stage for God’s blessings and His favor.  It also opens windows and doors for goodness to flow into our lives and invites joy into our hearts.

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A Tune in my Heart

After work today, I met my husband and son for dinner at our favorite Mexican restaurant.  I think we all have one of those.  Our favorite restaurant serves authentic cuisine and  warm corn chips.  Afterward, they were off to play poker and I reluctantly headed home.  Alone isn’t a bad thing, but coming home to a quiet, empty house is a painful reminder of the loss.  Over Christian’s life, the most time he ever spent away from me was during MDA summer camp which lasted for a week.  When you care for a child with special needs, you develop a deeper connection, especially when you physically care for them 24/7.  When Christian passed away I felt like I was thrown into an alternate universe.  After 16 months I have become used to the new normal, but I still have moments when the realization that Christian isn’t with us makes my world turn on it’s side for a bit.  Over time the dizzying effect doesn’t last as long but it will never be easy, just bearable.

Almost every time I have found myself alone in the house missing my boy, I turn on the music.  Christian had so much passion for music.  He enjoyed 90’s rap like NAS, current rap like Wiz Khalifa and Kid Cudi, and classics such as the Rolling Stones and Paul McCartney.  He talked me into buying several vinyls during the last year of his life.  He encouraged me to buy the vinyl even though I had the CD because the quality would be worth it.  Christian even talked me into buying music that he knew I enjoyed but he didn’t much care for either way.  He grew to enjoy a lot of my favorite alternative bands like Interpol and Bare Hands.

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One of my prettier vinyls by Blondefire

They say that it changes a person when someone you love dies.  That is an understatement.  I felt hollowed out for the longest time and had to rediscover who I was.  I was a caregiver for both boys for over 10 years.  It took me weeks, even months, to stop setting out two sets of pills at mealtime.  Not all of the changes have been negative.  I would never have believed it if someone told me I would gain anything from losing someone who was as much a part of me as Christian was.

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I took this photo at Crystal Lake last summer.

When I see a beautiful sunset, I see so much more than what I used to see.  I see something amazing and holy.  I feel a stirring inside of me that I have never felt.  I see and feel God when I see the rays shining through the clouds, the chickadee in the pine tree, the beautiful pattern on the carpet at work from the sun shining through the window or when I see the stars in the sky.  I feel a joy inside that I can’t explain when I look at things that to another person, may seem like nothing.  It makes me feel guilty at times.  How can I have moments of joy after losing my son and watching Andrew deal with the same complications as Christian did?

When we lean on the Lord, the amazing happens.  The journey of grief is far from easy but we do not have to endure it alone.  God heals us.  God loves us.

As I listened to a song by Deathcab for Cutie, which Christian also enjoyed, I heard guitar melodies I didn’t hear before.  Music touches me at a deeper level, bringing me to tears or making me want to get up and dance (listen to Stolen Dance by Milky Chance and you’ll know what I mean).  Just knowing Christian and caring for him has given me a deep appreciation for life.  I want to reach out and help those who have lost a loved one and I pray and I cry for them.  I will not waste my pain.  Instead I will find a way to help in a way that I know Christian would be proud of.  I hope my posts offer a bit of hope and remind you that you are never alone.

 

 

The Silver Lining

Too many people miss the silver living because they’re expecting gold.  -Maurice Setter

When I got married, my husband and I had it all planned out – we would have careers, at least three kids, and we would be the best parents we could be (supportive, encouraging, and active in our children’s lives).  The career part worked out eventually.  We were young,  moved a lot, and anyone who has been in the military knows how difficult it can be to adjust to civilian life.  We had two sons and always did everything we could to keep the boys active, healthy and happy.

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We took a trip to Fairmont Hot Springs in 2003

When the boys were diagnosed in 2001 with Duchenne Muscular Dystrophy, our dreams started to shatter.  Our boys never learned to ride a bicycle with two wheels, they were never able to learn how to drive, or able to participate in team sports.  I worked at a title company for a few years before I had to leave to care for the boys due to the progression of their disease.  I watched them lose the ability to walk, stand, raise their arms above their heads and I had to feed my oldest son during the last two years of his life.  We had to constantly adjust to our new “normal” as the boys needed more and more help with the things most of us take for granted.

Towards the end of Christian’s life, I had more and more difficulty finding the silver lining.  It was easier when the boys were younger – so easy to say it would never happen to us.  “A cure will arrive in time.”  “The disease will stop.”  “If I take the best care of the boys that I can, even at the cost of my own health, I can make this monster go away.”

I became miserable because I was focused on the gold that we never found.  I can look back now and see that Christian looked for that silver lining up until the last night of his life.  He asked me that night if we could take a day trip to Lewistown.  He still had hope.

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Christian’s smile will always be a gift to all of us

After losing Christian and continuing to watch Andrew deal with some of the same issues and complications Christian dealt with, you would think that the silver lining would be gone for good.  How can I see anything good come out of losing my son?  What kind of person would that make me?  There isn’t a single cell in my body that could possibly be glad my son passed away.

As hard as it is for me to admit, there is still a silver lining.  There will never be gold, but I’m okay with that.  What is the silver lining?  It is contained in the little things – the things that Christian taught me to appreciate.  Things like music, a bird on the feeder, sunshine on my face, a chance to make someone smile or laugh, the quiet moments during the day, a cup of hot coffee, being able to spend time with an old friend, or watching a good movie with my family.  I can be thankful that Christian is no longer suffering and that he didn’t have to pass away at the hospital, that he will never have to worry about another doctor appointment again, or see fear in my face as I watched him fade, that he is with the Lord, that he is at peace, and that he will only know love.

It is far too easy to focus on what we don’t have instead of what is under our very noses.  The all or nothing approach to life only leads to disappointment.  What if we were to do our very best with what we have?  Why not focus on what a person did right today instead of on what they did wrong last week?  If we expect our lives to be perfect, we will miss the miracles – the miracles that surround us each and every day.

Song of the week

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As I was on my way to Starbucks for a mocha latte and some book time, Waves by Blondefire played.  I heard this song when it first came out and I enjoyed the chorus and the upbeat melody.  Sirius XM Alt Nation started playing it frequently so I started hearing the lyrics:

 You hear them when you try to fall asleep

They crash to the shore, they come from the deep

As sure as the sun will rise, the sun will set

You taste the salt the closer you get

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Picking you up

Pushing you down

They’re always around

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Just like dream

Silver and green

We live in between

They can carry you all the way to me
They can pull you out to the deep blue sea

Oh waves, there are waves

Empires will crumble to the sand
All that you love can slip through your hand

But you must face the ocean once again

Follow the tides, wherever you’ve been

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The meaning to this song for me has changed over the years.  At first I thought it explained life with it’s ups and down, good days and bad.  Go with the flow.  Once my oldest son passed away, the meaning became more personal.  We rode many waves, huge tidals or everyday waves in dealing with his Muscular Dystrophy.  So much felt like a dream and still does at times.  I have days when I feel close to him and days when I feel the tidal wave that took him away from me. 

Blondefire has positive, clean lyrics with mostly upbeat songs.  It’s hard to feel grumpy when I listen to them.  I hope you enjoy the music video.  Please feel free to comment if you feel a special connection to this awesome tune.

The Big Sky

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This photo was taken from Hansen reservoir by Lewistown, MT

I woke up to something I hadn’t seen in what seems like weeks – a sunrise!  For the last while, a good portion of Montana has been covered with a blanket of hazardous air from forest fires.  The sky was a funny grey color and it smelled like a campfire outside.  When the sun shined into the house it was an alien, orange shade.  Thankfully cooler weather blew in last night and the air is no longer at a hazardous level.  I have found myself pausing throughout the day to watch the white pillows in the sky float by, wondering which one my Christian is on.

I noticed some trees around town were already turning yellow.  It is the end of August but it still seems too soon.  One of my favorite sounds on days like today is the rustling of leaves as the wind blows and the sound of Eurasian doves cooing in the evening light.

This is the last photo taken of Christian and me together.
This is the last photo taken of Christian and me together.

Fall is my favorite season and already I am looking forward to the changing leaves and cooler winds.  This will be a difficult season to pass through because October 27th will be the one year anniversary of Christian’s passing.  October 12 would have been his 22nd birthday.  The good Lord has helped us through the most difficult first year and I know the pain will never fully go away.  I will miss Christian and long to see him for the rest of my time on this earth.

On the evening before Christian passed away, he said that he wished his pain would stop so he could just sit still, look at things and really enjoy them.  Now, in heaven, he can see things far more beautiful.  When I hear the leaves blowing down the sidewalk this fall and see the beautiful, autumn hued, blue sky, I will enjoy it all the more because of Christian’s grace.

Hit me Like a Bomb

As I was preparing lunch this afternoon, Hit me Like a Bomb by Third Day came on.  Lyrics video From the first time I heard this song, which wasn’t too long after Christian passed away, the lyrics became personal.

You hit me like a bomb
And everything I’m used to
Is suddenly gone
Sorry to accuse you
Do you know what you’ve done
When you hit me like a bomb

Hear the sound of the sirens ringing
See the world of a life that’s changing
Well you hit me like a bomb
I was scared and I started running
Can’t say I never saw it coming
When you hit me like a bomb

(La la la la la la la la…)

You hit me like a bomb
Everything’s changing
It didn’t take long
For you to start rearranging
Everything that I’ve known
When you hit me like a bomb

(lyricsmode.com)

I knew Christian wasn’t doing well.  His overall health was declining rapidly over the last 6 months of his life, whether I wanted to see it or not.  We knew we had to take him to the doctor and probably the hospital, but we didn’t think we were going to lose him that night almost 10 months ago.  When I went into his room to wake him up for the day, I was hit by the biggest bomb ever.  Our life as we knew it – forever changed.

I lost my son, my best friend, my hero and my life as I knew it.  Everything changed, including how I looked at life.  Life is still changing, rearranging.  Everything I ever knew up to that point no longer mattered.

As time has moved on, we have been healing in our own ways but we will never be the same.  Christian made us appreciate the small things, even something as simple as seeing a bird outside of the window or a spot of sunlight on the wall.  Because of him, no matter how much the darkness enfolds me, I will NEVER give up.  I have moments when I feel angry and I question God about Christian’s pain and suffering.  I remind myself of God’s love, provision, mercy and grace so the anger isn’t able to fester and make me bitter.  I would rather heal and live the life Christian so much wanted to live but wasn’t able to.

This song by Third Day has a rock sound to it and plenty of energy.  Let me know what you think!

A Journey to Share

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I have asked myself several times over the last couple of months why I have not been posting to my blog.  The excuses have been varied:  I don’t have time.  I don’t want to bring anybody down.  No one wants to hear about my grief.  There is nothing exciting going on in my life.

I read in one of my grief books that we should not waste our pain.  Our pain, the difficulties we face and how we overcome them inspire others and give them hope.

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Christian always wanted to help but wasn’t able to.  He said he would help with the dishes, mow the lawn, and do the things that most kids throw a fit over having to do if he was physically capable.  He was helpful even at a young age and in many photos I have taken of him, he has his arm around his younger brother, Andrew.  Christian wasn’t able to join the football team or do chores around the house, but he was able to love and inspire.  He taught people that just because he was in a wheelchair didn’t mean that he couldn’t go to school and work just as hard, sometimes harder, than the rest of the kids.  Everyone who met Christian became inspired by his kindness, eagerness to help and learn, and his spirit.  Somehow, either by posting in my blog, drawing or painting (Christian was passionate about art), helping other parents overcome the daily challenges of living with Duchenne MD or one day writing a book about our experiences with DMD, I will use my pain for something good.