grief – Page 3 – The road less traveled

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!

Song of the week

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

You hear them when you try to fall asleep

They crash to the shore, they come from the deep

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

You taste the salt the closer you get

Waves
Picking you up

Pushing you down

They’re always around

Waves
Just like dream

Silver and green

We live in between

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

Oh waves, there are waves

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

But you must face the ocean once again

Follow the tides, wherever you’ve been

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

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

The Big Sky

This photo was taken from Hansen reservoir by Lewistown, MT

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

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

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

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

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

Hit me Like a Bomb

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

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

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

(La la la la la la la la…)

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

(lyricsmode.com)

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

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

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

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

A Journey to Share

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

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

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