courage – The road less traveled

Don’t Give Up

I have a dream of writing a book that will inspire and guide families living with the daily battle of Duchenne Muscular Dystrophy. I also have simpler dreams. I think that many of us do without realizing it. A simple dream can be to wake up each and every day filled with gratitude for another glorious day of life and going to bed each night feeling fulfilled and knowing that we loved and learned something knew.

The key to reaching our dreams and goals, despite the bumps in the road, is to never give up and to keep moving forward even when we feel afraid. I have heard it said over and over that courage is feeling fear but moving ahead anyway. Courage is overcoming our past and our imperfections and believing in ourselves no matter how many times we may fall and skin our knees.

When I think of courage and determination, I think of Rosa Parks, Maya Angelou, Steve Jobs, my mother who raised all three of us girls with little to no help, my grandmother who came to a new country and raised her children on her own, my sisters and my boys. I think of parents who put a smile on their faces and do the best they can for their families even though they feel afraid of a life threatening diagnoses.

No dream is ever too small because we are all part of a greater whole. Our contributions may be as small as bringing a smile to someone’s face, holding the door open for the person behind you or as big as inspiring millions like Martin Luther King, Jr. During his life, Christian was not able to join the football team or shovel the neighbor’s driveway (he had such a kind heart that I know he would have if he was physically capable) but he brought a smile to my face when I was most afraid. He inspired teachers and fellow students by going to class every day and completing his homework. No matter how much fear he felt he always smiled, loved and showed kindness.

I encourage you to never give up on your dreams. If enough of us do something every day that will make a positive impact on the life of another, we will truly change the world.

The Resilience of the Spider

Like a lot of people, I am afraid of spiders. A tiny spider skittered across my desk only to be crushed by my workpapers as soon as I noticed him out of the corner of my eye. Every morning when I get into my work car a beautiful, complex spider web stretches from the driver’s side mirror to the door. Using my key, I slice it right through the middle out of fear of the fella being blown into the vehicle by the wind and landing in my hair. Despite my efforts to destroy the spider web every morning, I return to find another web built in the same place.

My son knew what he would face each and every day over the last year and a half of his life – routine and pain. He knew he would have to deal with pain most of the day but he still didn’t complain or become angry. I rarely remember Christian feeling sorry for himself. He continued to read until his arm became too tired to hold up his iPhone and he made the best choices he could for his health until the end.

Imagine going through all of the effort to create something so complex and beautiful, only to have it destroyed 24 hours later. Once I really started to think about what this spider was doing, I couldn’t help but wonder what would happen in my own life if I had the same resilience and determination as this little eight legged critter. Most of the world’s greatest inventions were created out of failures – the telephone, the boardgame Monopoly and cures to diseases. What about people who have to endure several rounds of chemotherapy, knowing after each one what they have to face and that it can make them feel worse each time?

What are your dreams and goals? Are there ways you can prepare for these dreams by doing a little each day? I hope to write a book one day that will hopefully inspire people, especially those living with the daily challenges and heartbreak of Duchenne Muscular Dystrophy. Sharing my thoughts and my heart with readers on my blog is one way I am preparing for my dream. I have wanted to give up more than once – doubt, fear, a tight schedule, or when I just can’t seem to get my sentences straight. Two things keep me going – hope and love. I have hope because I know that God helps us become all we can be in life, especially when we can help other people. I also know that anything that is done with love in our hearts will ultimately succeed, no matter how many attempts it takes. Love is all that matters and is contained in all things, even the spiders.

*note – I had a little trouble with the caption above but am posting regardless. I apologize if it looks odd. We keep on keeping on right? xoxo

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.

Someone we would most like to have met

I haven’t posted in a few weeks. Christian’s passing was just before the holiday season began and it was a lot to process. I was happy to have my mother and sister here for Thanksgiving and it did help things to not be as overwhelmingly painful. We shed more tears around Christmas but did find great comfort looking at the lights on the tree. It was a different kind of Christmas all right. It did help to go the the cemetery. A friend of ours beat us to it and left a couple of gifts for Christian.

And my mother had a company in her town make a Darth Vader decoration for the grave. Christian was very passionate about Star Wars and had a lot of empathy for Darth Vader (a post on that later).

Thanks to the comfort and strength of the Lord and the love and generosity of family and friends, we made it through our first holiday without our oldest son.

Around New Years, I picked up the paper and saw a headline called Montana heroes lost in 2014. The article link is http://www.greatfallstribune.com/story/news/local/2014/12/30/montana-heroes-lost/21076535/ . I decided to read through the article and thought in my mind that Christian was our hero in so many ways. I was in disbelief when I saw Christian listed in the article! I was touched, I cried, posted it on social media and let my family know.

My husband did the best job ever in writing the obituary. Christian cared for others, he loved others, he was kind, courageous and intelligent. He also had a great sense of humor and had the best laugh. His smile. I could write about his smile alone. It’s impossible not to smile when you see the light radiating from his face.

There are so many people that changed the lives of those they were close to just by being themselves. Christian was one of them. He wasn’t able to fly a plane or publish a novel but he did many smaller things that meant just as much. He made us laugh, he received an art award in 2010, he helped out his grandparents with groceries and he always bought us the best gifts. He made an impact on so many people with his love, grace and humor. If there was any way he could help, he would do so to the fullest of his physical ability. Christian inspired everyone he came into contact with, even if it was just once a few years ago. I miss him and hurt in a way I cannot put into words, but I feel tremendously grateful to have had him in my life. He left me many of his traits and as I heal, I will honor him by continuing his love, kindness, humor, courage and grace.

My son

It has been well over a year since my last post. So much has changed, especially of late. On October 27, in the early hours of the morning, my oldest son, Christian, went to heaven. My heart broke into a million pieces that day.

These past weeks have been a blur. I have felt more pain and emotion than I ever thought possible, sometimes in the span of 5 minutes. I have also felt parts of my soul stir that I didn’t even know existed. For the first few days, I couldn’t even think straight enough to pray or read scripture. Thankfully I have been able to focus more and I have made sure to keep God’s Word close by. I have relied on God more heavily than I have ever before and prayed more than ever.

They say that when we lose someone we love, we are never the same. We have to adjust to a new normal. I can honestly say I am not the same. I am broken, tired, confused, angry and lost. On the other hand, I have felt love grow in my heart – love for Christian, God, my husband and my younger son, Andrew. You see, Christian was more than a son. He was my best friend (wow, I just cried for the first time in public). He was also my rock, my inspiration. He left me everything that was good about him – good and perfect. He left me his courage, love, more love, his beautiful smile, his humor and his love of music. I can hardly listen to a song without thinking of him.

The past year has been difficult but I am thankful for all of it – the constant caregiving, sore legs and feet from standing all day, the fear, aggravation. It all made me a better person and taught me to enjoy the little, often overlooked things in life – a sparrow on the feeder, the full moon, a funny shaped cloud in the sky or sunlight on the wall. Christian made me realize that I do not need material possessions to be happy and satisfied. In Christian’s last year of his life, he only spent less than $100 on himself. He enjoyed buying gifts for others and watching their expressions when they opened them. Christian was in a lot of pain the last year and a half of his life and wasn’t able to go out of the house much. As a result, he read books on his iPhone, played video games (Metroid and racing games were his favorites), listened to some good music and watched movies. Tom Cruise was his favorite actor and he watched Live, Die, Repeat the weekend before he passed. His love of NASCAR inspired me to love it too. I so wanted his favorite driver, Jeff Gordon, to win the Chase but instead I bawled as he duked it out with my driver, Brad Keslowski. What a mess.

I know that eventually, I will cross the stormy sea of grief and I will surely lean into the storm so I can keep moving ahead. God will be with me every step of the way. As I heal, I will be inspired by Christian. He will always be with me until I see him again. He is inspiring me to keep listening to music, especially vinyl, start drawing and painting and play the piano again. He inspires me to continue taking care of myself and my husband and son. He inspires me to help others and bless others, just as he did every single day of his life. Not a person came away from Christian without being moved my his love, grace and smile. I will love him for all time. I will be posting on my blog more and I hope I will inspire you and move you. I love you and thank you for reading and I hope a part of Christian will also be with you.