The road less traveled

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.

Let’s Go Racing!

Tomorrow is the Daytona 500. We are usually excited but even more so this year since we will be going to the race in Las Vegas next month. When we received our tickets it was bittersweet because only three arrived in the mail instead of four.

In years past, we invited friends over to watch the race or made sure we had plenty of pizza and snacks to celebrate. Over the years the boys started watching more races and picked their favorite drivers. Drew is a Dale Earnhardt Jr. fan and Christian liked Jeff Gordon. You can imagine our disappointment when Jeff Gordon announced his retirement, which just happened to be the year after we lost Christian. It was bizarre seeing Jeff Gordon in the announcers booth with a suit on instead of on pit road in his fire suit. I know Christian would have been bummed out not seeing the Dupont car on the track.

Since we lost Christian, I cannot hold the tears back as the National Anthem is performed or when Darrell Waltrip yells “Boogity, Boogity, Boogity! Let’s go racing!” I would like to share some photos of our trips to Las Vegas to see the race. Christian and I just loved it when Darrell would yell at the beginning of each race so if you get the chance to tune in, even just for the “Boogity,” say it out loud for my son. Enjoy!

Christian wore this shirt almost every Sunday. We set it out for the Daytona race last year.

055 — I became a Brad Keslowski fan after this moment. He pushed the table aside for the picture and was very kind and patient.

Kurt Busch was the first driver the boys ever met. I am thankful he took a few moments for this photo.

074 — Dave and Drew all smiles as we wait for the green flag.

Christian said meeting Michael Waltrip was the highlight of his last trip to Vegas! The smiles say it all.

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.

Jump!

A few days ago, my husband had me watch a video clip of a motivational speech by Steve Harvey of the Family Feud. Steve Harvey video He starts by saying that every successful person has one thing in common. They have all jumped. They took a leap of faith. They realized what their God given gifts were and they jumped in head first.

I truly believe that when each of us enters this world, God blesses us with certain gifts and talents. Some of us may have one, others may have 5 or 10. Once we identify our gifts, we need to jump. Steve Harvey said that the only way we can soar is to jump and pull the cord. Once we do, we have to be determined to keep going through the doubt, rejection and pain. Eventually we will come out on the winning side.

Think about the inventors of the past and how far they had to jump to create the light bulb, the automobile, plastic, or Apple Computers. One of the best biographies I have ever read is on Steve Jobs. Where would we be right now if Bill Gates and Steve Jobs didn’t jump? I wouldn’t be able to share my heart with you on my MacBook or even find a way to deliver it. In reality, most of us are not as brilliant as Thomas Edison, Albert Einstein or Stephen Hawking, but we can make a bigger impact than we think. It wasn’t smooth sailing even for the geniuses of our time. They jumped, overcame and soared.

We are all more capable of making a positive impact than we realize. My son, Christian, wanted to make a difference. He wrote a good part of a spy novel but stopped when his disease started to accelerate. He wasn’t able to join the football team or play basketball but he did play his clarinet until he didn’t have the strength to sit up and cope with the pain. He spent the last 18 months of his life tilted back in his chair but he still hardly ever complained. His courage and grace impacted everyone he came into contact with.

What about the rest of us? What are we capable of? I have come to realize that I have a knack for photography and writing. My sister overcame great obstacles to earn her G.E.D., becoming a volunteer fire fighter and EMT and is now in the best shape of her life. How many lives would have been lost if she never jumped? I encourage you to watch this video and to believe that God fulfills all of his promises. He wants us to soar. At some point, we have to ask ourselves if we are living or simply existing.

535890_2199036831741_1580093076_n — Despite the physical limitations of Duchenne Muscular Dystrophy, the boys earned their GED’s in 2012.

I can hardly think of a time when God did not get me through difficult times. After we lost Christian, I felt like I was falling, skinning my knees and having my heart ripped out every single day. It’s still not easy, I still have moments when the reality of his death practically knocks me down, but God has helped me up from day one. Steve says that our parachute does not open right away. It most certainly did not for me until recently and it didn’t for my sister either. I am pretty sure that most olympic athletes skinned their knees many times.

I encourage you to jump. Stay with it until you soar. Believe in yourself because God does and I believe in you too. Do it. Jump!

Mario Kart

The last thing Christian asked me to do with him was play Mario Kart. At the time, neither of us knew that it was our last chance to play together. He beat me every time but it was still fun to play. About a week after he passed away, I bought a WiiU. Christian used a Playstation and Game Cube but wasn’t sure if he would be able to handle the larger controller that came with the Wii. I had an evening by myself and I fired it up. Once I chose my character and started to play, my heart ached. Christian talked about playing on the Wii and how much he knew I would enjoy the graphics for Mario Kart. I felt close to him and my heart ached at the same time because I was not able to share it with him.

Due to the nature of Duchenne Muscular Dystrophy, my sons were never able to ride a bike without training wheels or join the basketball team. Video games became something they could easily do and enjoy. Andrew plays Destiny on his PS4 often and has gained a group of online friends. In Montana, the winters are long and cold, making it difficult for people with disabilities to leave the house. He is able to socialize with his friends while he plays and has become quite passionate about the game. Christian was able to continue playing until the night before we lost him. His hands just stopped working. I will never forgot the look on his face when he told me he couldn’t hold the controller anymore.

Our neighbors, Len & JoAnn, joined in and actually played. Even they had a blast!

I think we all need to play video games every now and then. I played Mario Kart with Andrew last night and sorely lost, but it was fun and relaxing. It is so easy to say no, I would rather not. We never realize how fast our children grow until it’s too late and we are not cool enough to hang out with them. It becomes more real when your children are diagnosed with a life threatening condition. We can all benefit from putting our seemingly endless list of obligations on the back burner to play a game with our kids.

I wanted to play video games with Christian that last day but his needs were great and we didn’t have any help. I really hope Christian smiles down from heaven as I pick up that controller a few times a week and practice so I can kick Andrew’s tail next time!

Last sunset of 2015

As the sun started to lower in the sky this afternoon, I couldn’t help thinking that we were approaching the last sunset of 2015. Thin, wave-like clouds stretched across the sky and snow was beginning to melt off of the streets.

The sun is almost completely set now, but I stopped for a few moments and watched the sky change colors and the clouds gather at the horizon. The sun reflected a deep orange onto bare tree limbs and rooftops. I thought about Christian, wishing he could be with us to celebrate the New Year. It was the last sunset of 2015 and I am thankful for witnessing such a spectacular display of color.

2015 was a year of grief, big changes and leaps of faith. I spent a good part of the year accepting the loss of my son, best friend and hero. I spent another good part of the year finally starting to realize that I did my best caring for my son until he went to God. I have come a long way on this long, painful journey and I will feel the hurt for the rest of my life. I have learned to manage with a broken heart and even feel moments of joy despite the loss.

We took a leap of faith when my husband left a very well paying job for his health. A few months later, after over 10 years at home as a full time caregiver, I went to work. Not just at any job, but the company I worked for until I had to leave to take care of my sons in 2005. It blows my mind how things have come full circle. Christian was walking when I left, both of my sons were walking. And now I am back minus one of my boys. Although this realization is painful, I am blessed to be working at the same place with the best group of people I could ask to work with.

I became an aunt again and cried when I saw the first photo of little Damian. I saw my youngest sister as a mother and felt so much love for her.

I am thankful for the healing God has done in my heart, the healing that has taken place in my husband after working harder than anyone I have seen for 14 years, for the blessing of returning to my former employer, becoming an aunt again and for the last sunset of 2015. Big moments and small I am thankful for it all. Corny but it rhymes, right? Birds visiting my feeder, smiles from strangers, the sound of the furnace on a cold night, coffee with a friend, the small simple blessings that filled my days do not go unnoticed as 2016 approaches.

I will set goals for the new year as many of us do but for now, I will focus on the blessings in my life. The simple yet most meaningful blessings.

th-15 — I find so much comfort in mourning doves. I cannot take credit for this wonderful shot.

Happy New Year to all of you and thanks so much for reading my blog!

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!

Yahtzee!

This afternoon we sat down to play Yahtzee. Not an electronic form on the computer but the real, noisy, dice flying across the table version of Yahtzee. Ever since the boys were young, we enjoyed playing all sorts of boardgames.

When I was a youngster, the most technologically advanced item we owned was a television – the giant boxy kind with wood accents that sat on the floor. No remotes. Get up and turn the dial to turn up the volume. We also owned Connect Four and Monopoly. My favorite was Connect Four. It was easiest to understand, more so than Monopoly. Since we weren’t quite old enough to understand the concept of owning property and making improvements, we would fight over who got the cute little dog game piece and make our own rules. I still remember the excitement when Yahtzee first came out. It was the first game I remember playing with my sister and my mother. We went camping and enjoyed playing it on rainy days when we were stuck in the camper.

As the boys grew older, we started playing Life and different versions of Uno. Our favorite was Uno Attack. The game concept is the same as regular Uno but there are cards that instruct you to press a button. Once you press it, a random amount of cards comes flying out at you. The boys would laugh as the cards flew in their faces! I also taught them how to play Monopoly and we picked up a game in Spokane called Killer Bunnies. Killer Bunnies is the most awesome game ever played in our house. I may as well do a separate blog post because it’s so awesome.

Christians Birthday_1518 — Christian holding up his Quagmire card as we played Family Guy Uno

As Christian’s pain increased and his arms became too weak, he became unable to play most games. It hurts to remember how much he had lost, even something so simple and basic as playing a game of cards. Board games are a way to connect with loved ones in a way that is far too rare in today’s world. It is too easy to pick up our phones and play a little Candy Crush than to walk over to the closet and pull a game or two down. Throw on some good music, grab some drinks and snacks and make some memories with your favorite board games. What are your favorites, old or new?

Book Adventures

Since it’s a cool, rainy Saturday, I thought it would be fitting to post about books. I am at the end of I am Number Four by Pittacus Lore. Even though I left my teenage years behind over 20 years ago, I still enjoy reading teen fiction. Many fun, adventurous series have been released since Harry Potter. I remember many different series I read when I was in school and I thought it would be fun to write about them.

One of the first series I remember reading is Little House on the Prairie by Laura Ingalls Wilder. A friend recommended them to me and I quickly became hooked. So hooked that my mother became upset with me for staying in my room so much in my pajamas.

Another series I started reading a short time later was Sweet Valley High by Francine Pascal. Remember that series? The twin blonde sisters? I read quite a few of them as I longed for high school, hoping I could be half as beautiful as the Wakefield sisters. I pictured myself with trendy clothes, thick, wavy hair and beautiful boyfriends.

The funnest series I read was the Choose Your Own Adventure series (various authors). We did not have interactive games that are common today, so these books were a breakthrough in my preteen years. It was great fun to make choices during the story, like being in the character’s shoes, and turning to a certain page from there to see the outcome. Many times my decision would lead me to another page to make another choice, ultimately leading me to a happy ending. Other times I would meet my sudden fate.

It amazes me when I compare these books I grew up with to the teen fiction series I shared with my sons. I will be revisiting the latter in future posts. I just love books! What series did you read when you were growing up? Thanks for reading my blog and I would love to hear from you!