death – The road less traveled

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.

787ab1bee5081ccbe0d86c0f4c1e9bcc--rainbow-colors-over-the-rainbow — Pinterest

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.

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.

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.

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.

Feed the Birds

th-9 — The state bird of Montana is the Western Meadowlark

When we moved into our first home in 2001, our realtor bought us a bird feeder. I had never fed wild birds before but soon after, I found a perfect spot to hang it right outside of our dining room window. At first a few sparrows would show up, but if they saw any movement at all on the other side of the window they would dart away. I was told that they just needed to get used to us. The sparrows would take a few days to empty the feeder and I slowly became consistent in making sure the feeder was filled.

In sub zero temperatures I would sometimes feed them twice a day.

It didn’t take long for all of the birds in the vicinity to find out where the grub was located. I started to fill the feeder daily and there were times in the winter when they would empty the feeder in about an hour! Over the years our checklist of sighted birds has grown. The number of finches and doves has grown each year. An american goldfinch passes through and so do red winged blackbirds. We really enjoy the babies in the spring.

Feeding the birds is costly, especially when they gobble it up, and it can also be messy and a hassle. The benefits outweigh the work. My two sons were disabled and over the years it became more difficult to leave the house. We learned to find pleasure in the simple things – watching the birds. We have seen the finch population increase with each passing year and have also seen more doves. Chickadees frequent our feeder as well and they are the friendliest.

The summer before my oldest son, Christian, passed away, we had an abundance of birds. He loved grackles and we had an abundance of them feasting and causing mayhem in the backyard. The mourning dove population exploded with most of them perching on the power line in the alley. We also have Eurasian collared doves. Most of the time less than 10 will be here enjoying the safflower seed off of the sidewalk. In the later part of summer, I looked out back and to my astonishment, there were 20 of them back there!

We had almost daily visits from this hawk last winter.

The winter after my son passed away was the darkest, coldest winter we had ever experienced. The sparrows and finches gave us comfort when they were brave enough to visit the feeder and risk being snatched up by the hawk that lurked in my yard. Today they cannot eat the food fast enough because the babies are very demanding. It is such a joy to watch the parent finches watch over and feed their babies at my feeders. My son Andrew and I believe that Christian is sending us birds to comfort us and to let us know that he is okay. Over the last couple of days, we have had 2 doves perch on the lift right outside the dining room window and stare at us.

If you have a disabled parent or family member who is unable to leave the home frequently, a bird feeder is an excellent idea. It is an easy, joyful form of entertainment and is something we will always enjoy and find comfort in.

Skyscraper

Last August, my younger sister, Sherry, called me in a flurry of excitement. Interpol was going to be playing in Denver September 27 at the Ogden Theatre! I could hardly believe it and I also didn’t see how I could possibly pull this off. With the boys’ needs I was lucky to go to the grocery store or run errands. I had to fly. This was a sticking point with me because I am not fond of flying and it would be for only one night. I decided that I was not going. My oldest son, Christian, kept encouraging me but I wouldn’t budge, especially since I would have to take Dramamine. If you have taken it you are probably familiar with the drowsiness that accompanies the relief. I kept going back and forth until Christian told me that if it was his favorite band he would go. It breaks my heart that he never went to a concert. We live in an area of the nation that does not get much action where music is concerned. He enjoyed listening to Wiz Khalifa, Nas and his favorite musician was Kid Cudi. After he said that I booked the tickets.

I was nervous and excited as I waited to board the plane. I even had the song picked out that I would listen to as we took off – “Anywhere” off of the El Pintor album. We landed safely less than 3 hours later and my sister and brother-in-law picked me up. Before I knew it, we were in line. They had a promotion for people who owned a Samsung phone and luckily, my sister had one. We were able to go to the front of the line! It was awesome!

You see that Interpol poster behind us? My sister, the ultimate haggler, talked one of the employees into letting us have two of them! It was all meant to be!

The opening act, Rey Pila, was awesome. They are out of New Mexico and they rocked. The bass in the Ogden is so strong that it literally jars your insides. I was so pumped to see my favorite band! When Sam Fogarino, Daniel Kessler and Paul Banks took to the stage I was beside myself! They sounded exactly how I imagined – AWESOME! They played a lot of their new music along with my favorites off of their older albums. Paul Banks sounded incredible, Sam had so much energy on the drums and Daniel Kessler rocked the house on his guitar!

My sister and I had the best time at the concert and we also visited the record store next door. We had a ball. She found a vintage Pink Panther record and I found some flawless Dean Martin records among others.

The flight home was wonderful. I listened to my El Pintor album and looked out the window the whole way. The view was outstanding.

I would have never gone to the concert if it wasn’t for my son. He lost so much over his last years of life as he dealt with more pain. I knew that I needed to overcome my fear of flying and just do it. I had no idea, however, that Christian would pass away exactly a month later on October 27. Now, whenever I have memories of the concert, I will remember that I did it for him.

The night before Christian passed, he asked me about one of my albums by Paul Banks, Skyscraper. It was the last music Christian ever talked about with me and he loved so much different music. When we had to plan his funeral, I included the Madrid Song and On the Esplanade off of the Skyscraper album. Both songs are beautiful and I understand why Christian mentioned the album. I made a slideshow and used these two songs and it was absolutely beautiful.

Music is such a large part of our daily lives and it was everything to Christian. We had to stay home a lot and it helped to brighten many days. I am thankful to have come across such a wonderful band. Thank you Paul, Daniel and Sam for expressing yourselves in your music and enriching our lives.