Don’t Give Up

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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.

 

New Roads Ahead

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As 2016 came to a close, I made a choice to let go of the past and keep my sights on what lies ahead.  I decided to do my best to only look back if I needed to smile or laugh.  I always love the prospect of a new beginning, a fresh start to the new year.  I have never been one to make New Year’s resolutions; however, I believe in the power of intention and adopting new and empowering beliefs.

When we make a resolution for the new year or a new intention, what if we were to begin by believing that we are enough just as we are, that we are loved more than we could ever imagine or that we are worthy of the best things in life?

Rather than focus on the pain and difficulty of 2016, I want to take the lessons learned as well as the joyful memories.  I have learned the importance of gratitude, acceptance and compassion.  With each passing day without my son, I realize more and more how precious life is – a gift to be cherished and enjoyed.

The other morning, I came across the prayer of St. Francis of Assisi.  I decided that the words of this prayer would mirror my New Year’s resolution.

francis-of-assisi_lr-2-900This prayer is an antidote to depression because it helps us to look outside of ourselves and in doing so, we may realize that our problems are not as monumental as they seem.  It also reminds us that by serving and loving others, we become God’s hands and feet.

Thank you for reading my blog in 2016.  I hope to post more frequently and most of all I hope to bring a ray of sunshine to someone’s day.  I hope you had a wonderful New Years and wish you a prosperous 2017!

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.

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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.
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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.

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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.

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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 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.

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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.

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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.

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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.

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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.

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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!

 

A Journey to Share

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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.

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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.

My son

DSCN0086It 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.