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.

 

The Resilience of the Spider

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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.  

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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

God’s grace for the Race

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Yesterday, I completed my first Island Challenge.  The event took place in Lewistown at the Half Moon Ranch and it featured different events – a half-marathon, overnight bike ride and 8K/11K hikes.  I signed up for the 11K hike.  I am a natural introvert so engaging on such an adventure solo stirred up feelings of fear and doubt.  I had thoughts of backing out more than once.

I woke up early and made the hour-long drive so I could have plenty of time to check in.  I was not disappointed by the beauty of the ranch.  There were cows greeting passing cars on the dirt road leading to the ranch and the rising sun brought everything to life.  I arrived at the pavilion to the smell of bacon and pancakes.  I checked in, pinned on my number along with the memorial pin of my son.  The ranch is surrounded by mountains and wildlife so I enjoyed the views while I waited for the hike to begin.

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When it was time to gather around the starting line I made sure to listen to the directions, especially pertaining to the split between the two hikes.  The horn went off and I began my  journey.  We started on a hill and I slowly ended up in the back.  I told myself that all I want to do is finish, even if I am last.  I was looking forward to the solitude of being in the back.

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We went uphill for over a mile and my heart was racing.  My legs started to burn in places they usually don’t and the terrain became very rugged.  I had to watch where I was stepping so I wouldn’t fall or roll my ankle.  As we started to spread out more, I could hear the wind blowing through the tops of the pines.  Everything around me was beautiful and so full of life and color, even the rocks and foliage along the side of the road.  I made it to the first water station and was happy they had kleenex and fresh fruit.  The oatmeal I ate for breakfast wore off before I even started the hike.  We had a brief respite from walking uphill but another hill waited after the rest station.  I attacked it with vigor and pumped my arms to give me a boost.  Tendons I didn’t know existed were sore and I  began to feel the weakness caused by the muscular dystrophy.  I wasn’t about to let it stop me.

 

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I thought of Christian and how he and his brother were never able to hike because their bodies became too weak once they were old enough.  I thought of my mother and the pain she has endured from her legs giving out.  I also thought of a co-worker who is battling cancer.  I felt that second wind come along and I kept it up.  I walked alone for a good part of the hike except for the marathon runners that passed occasionally.  I came up on the 6K sign and realized I was over half way through.  The second water station came a short time later and they said I had one mile left.  I thought the nice man didn’t know what he was talking about.  How could I only have one mile left?  I pressed on further and approached a downhill slope that made me hesitate.  I pictured myself trying to run down it and tumbling down for eternity like Chris Farley in one of his movies.  I eased my way down and felt my quads burn like fire.  When I was closer to the bottom, I let gravity help me and ran a short way.  I slowed, went through a gate and I could hear cheering.  I thought that was odd because I still had a way to go.  The pavilion came into view and I knew something was off.  I felt like I had accomplished something great, but 11k in a little under 2 hours?  I crossed the finish line with a smile and a feeling of completion.  It didn’t dawn on me that I went the wrong way until I noticed hikers with the 11K blue race bibs on cross the line that were in front of me earlier.

I have to admit that I felt disappointed because I signed up for the longer hike.  I beat myself up a bit for making a mistake and missing that turn.  I was very tired and sore after completing the shorter hike so I thought that maybe it was for the best.  Next year I can try the longer hike.

I opened my devotional this afternoon and read about the grace of God.  Grace is the evidence of his love for us which is freely given.  It comes to us as talents, through other people or in ways totally unexpected and most needed whether we realize it or not.  God wants for us what is best and sometimes it seems unfair.  Although my hike ended up being 3K shorter than planned, perhaps He knew that I started off too big.  My legs ached like they haven’t in years and I really cannot imagine how they would feel had I completed the longer hike.

I cannot change the fact that my legs are not as strong as I would like but God has given me the ability to keep walking and hiking, just not marathon distances.  He has blessed me with a loving husband and a son who despite his prognosis, continues to do everything he can with what he has.  He also blessed me with a son who kept fighting until his last breath.

Christian was with me on my hike walking beside me and he knows I gave it my all.  For everything he lost and everything Andrew continues to fight for I will not give up, even if it means taking a path I didn’t expect to take.

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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!

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.