Grief – Page 2 – The road less traveled

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.

kids-in-jovas-room — The boys’ favorite Thanksgivings were spent with their cousins.

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.

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.

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.

Christian at the petting zoo at the Lewistown Fair.

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.

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.

A man my husband went to high school with sent us kona coffee from Hawaii.

I continue to read these cards for comfort.

My sister and her family sent us a care package that gave us so much comfort.

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

My dad drew this photo of Christian

April from Kalispell drew this photo

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.

Light at the end of the Tunnel

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.

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.

20120618-193820 — 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.

15602033624_4c610f8944_b — 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.

botafumeiro-santiago-de-compostela1a — 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.

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?

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.

10991632_10200368380288399_8235321352078788452_o — 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.

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

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.

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.

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.

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.

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.

Fairmont Hot Springs 2003_0187 — 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.

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.