loss – Page 2 – The road less traveled

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!

Angie

Angie and I met at college in Rapid City, SD. She and her roommate were just down the hall from me. At the time, I was a huge Slaughter fan – if you listened to hard rock before Nirvana changed it all you know who I am talking about. Angie also enjoyed listening to them. We became good friends and she ended up inviting me to go with her to visit her dad in Iowa. We had a great trip – lots of loud singing and Diet Coke on the road. We played pool and her dad let us smoke in the basement. We jammed the Wayne’s World soundtrack and roasted marshmallows in her backyard to the Dream a Little Dream soundtrack. We also practiced doing the Electric Slide in her dad’s driveway. I remember us finding out we both made straight A’s and her dad taking us out to dinner. We also drove to Ames to watch Wayne’s World again.

When I got married, Angie drove all the way from Florida to be in my wedding. We stayed in touch – writing letters and talking on the phone occasionally. Over the years our communications became less seldom but I still thought of her often. One February morning, her husband called me. I had never spoken to him before so I knew something wasn’t right. Regrettably, I was not able to pay the same favor back to her by driving down to Florida to be in her wedding. Scott said that he received my card but in a thick voice, he informed me that Angie had passed away from a massive heart attack the year past. He cried and told me how strong their girls were trying to be for him and the last things they said to each other. Angie lost her father not too long before she passed away from a heart condition she inherited. She was one of the best people I have ever known – a deacon for her church, loving mother and wife, faithful friend, caring daughter and sister. She was at her father’s side when he took his last breath.

I only have a handful of pictures of her and several handwritten letters. Angie is part of the reason why I write letters and mail greeting cards. I can see her handwriting and the little smiley faces she made. I can hear her voice and her laugh in the loops and curves of her cursive letters. In the age of social media, letters from a friend who I loved and cared for are priceless. I encourage you to write a letter a week to a family member or a friend. It is so much more exciting to receive snail mail from a loved one than a bill. Have a lovely Memorial weekend everyone and be safe!

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.

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.

Long Time No Post

I must admit I was a bit shocked when I saw how long it had been since my last blog post. I have read in more that one place that we have to make time to do the things that matter or we will never do them. We also must not wait until everything is perfect before we pursue our dreams. Our lives are ever-changing but our dreams remain in our hearts. I have a dream of writing a book about my sons and their daily battle with Duchenne Muscular Dystrophy. A book that I hope will inspire people to donate to the MDA and reach out to families afflicted with devastating, neuromuscular diseases.

So much has changed since my last post. After over 10 years of being a full-time caregiver for my sons, I am back at work. Not just any place of employment but the very company that I left to care for my sons. I feel tremendously blessed to be rehired. Even with blessings, it’s easy to still experience moments of fear and doubt. Questions circled in my mind such as wondering if I would remember everything. There is also the social aspect of working outside of the home that I have been missing for far too long. It has been fun seeing people who I haven’t seen in years, literally. It has been difficult not seeing my son as much but this change enables us to be a healthier and happier family.

October 27th marked the one year anniversary since Christian passed away. I honestly thought it would be beneficial for me to go to work and with this year being the first one, I didn’t know what to expect. Let’s just say I had to go home. Being with my family made the day easier to bear for all of us. This fall has been painful. As I have been watching the leaves turn and fall off of the trees and the sun shine at a different angle, I have been flashing back to our last few weeks with Christian. The good Lord has given me the comfort and strength I need to keep putting one foot in front of the other. One sign of the healing that has taken place over the last year is the little moments of joy that fill my heart at the most simple of things. A squirrel greeted me on one of my courthouse runs with a mouthful of leaves. A house finch called to me from under a car in the parking lot behind the treasurer’s office. A pigeon greeted me above the door before I went inside. The simplest of sights are the most beautiful.

I had to remind myself lately that going back to work full-time does not mean I have to stop pursuing my dreams. We can always carve out a little time every day to write, play a song on the piano or take a 30 minute walk. I would love to hear about your dreams and I will keep you posted on mine. I have a piano that I would love to start playing again but with most things, I will need to take baby steps. I read a blog post by Tsh Oxenreider (theartofsimple.net) about not setting goals too big or it sets us up to fail. It’s far easier to exceed a goal that’s simpler and realistic. Wise words!

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!

I will keep getting back up!

Drew patiently awaits his name being called to go back to see the lung doctor.

These critters have looked down on us every six months for as long as I can remember.

This wall hanging with the names of other patients is always a comfort to look at.

Drew is getting ready for his spirometry test with a plug over his nose.

Drew had his 6 month check up this morning with his heart and lung doctors. We had to get an early start on things and jet across town by 8:30. The sun was shining and we were in good spirits. We expected to hear good news based on Drew’s energy level and overall well being.

Drew had his heart echo first. The boys have been seeing Dr. Ruggerie since they were small, shortly after their diagnosis of Duchenne Muscular Dystrophy. He treated Christian up until he passed last October. Unfortunately, after less than a year after losing Christian, we found out today that Drew’s heart and lung function numbers have decreased. We know how this disease progresses and have had this told to us in the past about Christian, but it still doesn’t prepare us or make it any easier. The heart is a muscle and muscles in our chest help us to breathe. Duchenne’s affects all of the muscles in the body. It doesn’t pick and choose, doesn’t affect only the face, legs or hands. At times, I think this disease is a monster.

Oh, sure, I could curl up in a ball and give up. Yell. Get mad. I would rather get back up, dust myself off, and keep fighting for Christian, who I know would want me to keep fighting, for Drew, my husband, my mother and for all of the boys and families dealing with this devastating disease.

The more I see this disease affecting my son and my mother, and especially after losing Christian last October, the more I want to do something to help, educate people and keep fighting for a cure. Okay. Here it is. I want to write a book. This scares the crap out of me but I know it needs to be done, especially after I found out the telethon has been discontinued. I don’t have a writing degree or any kind of education that pertains to writing a book but I have lived it. I have seen my boys learn to walk but eventually lose that ability. I have seen them fall, I have heard the awful things other kids have said to them. I have seen them go through the surgeries, humiliation, raw fear, pain and suffering. I don’t know how to begin but writing in this blog and sharing my heart with all of you is the first step. Thank you so much for reading my blog and walking with me on this journey. This book needs to be written.

A Fight to the Finish

Today, a young man named Jacob passed away from complications due to Duchenne Muscular Dystrophy. I have been connecting with his mother, Apryl, on Facebook for the last few months. Since Christian passed away in October, I have been able to connect with other mothers who have lost a son to Duchenne Muscular Dystrophy (DMD) or are still fighting the battle like I am. Andrew is 20 and he continues to fight every day despite seeing his friends pass away and losing his best friend, his brother. A kind woman, who is also named April, mailed me a drawing of Christian. Her son passed away earlier in the month and despite her pain and grief, she sent me a beautiful drawing. I have also had the blessing of being able to help another family in Montana by connecting with yet another April on Facebook. Christian loved helping others and I knew he was smiling from heaven when April’s family came over to pick up his electric lift, intercom system and other things that would bring a smile to little Tyler’s face.

So many lives lost. Ever since the boys were young we would hear about their fellow campers passing away. Some as young as 15, some in their early 30’s. Either way, it’s just not fair. It made my heart heavy to hear the boys talk about their fellow campers and friends who had passed away. Friends they laughed with and could be completely themselves with. I see their faces but I cannot remember all of their names. I recognize them when I look through the MDA camp photos from years past.

Summer Camp 2004_0769 — Christian and Mikey at MDA camp in 2004

Summer Camp 2004_0764 — Christian, Ryan Clinch, Andrew and Mikey at MDA camp in 2004

Since Christian passed away, I have felt this inner pull to do something. I read something a few nights ago that said not to waste my pain. I started a Montana Duchenne Muscular Dystrophy Group on Facebook and I will continue communicating with other families and encouraging everyone to support each other through such a difficult battle. My husband thinks I need to write a book. As frightening as that sounds, perhaps the best place to start is right here, on this blog.

All I know is we need to learn more about Duchenne Muscular Dystrophy – what it does to the young men’s bodies as it progresses, how it affects family and communities and what we can do to support each other and eradicate this monster. There is so much research going on that it makes my head spin. Perhaps if more of us learn about DMD and support research through the telethon, lockups, fill the boot and buying shamrocks, we can find a cure.

Rest in peace Jacob, Natoma, Mikey, John, Keith, Christian and all of the young men who have fought the battle to the finish.