A Necessary Truth


There are mornings when I am doing my regular Bible study when I come across something so profound that I will always remember it.  I read a quote by Bronnie Ware from her book The Top Five Regrets of the Dying:  “I wish I’d had the courage to live a life true to myself, not the life others expected of me.”

Ware worked as a palliative caregiver.  Palliative care involves the care and support of a patient faced with a life threatening or terminal illess.  It also involves improving the quality of life for the patient as well as the patient’s family and friends.  I had no idea such a word even existed until after my son passed away.  I knew what hospice was but in my son’s final year of life we had no support and no one to even tell us what support was available to us.  It was a fearful, traumatic time in our life and has led me on a mission.  I have started to write a book about my experiences with raising two sons with Duchenne Muscular Dystrophy and losing my oldest son, Christian, to the disease.  No one should have to deal with end of life issues on their own.  So many physicians are in the dark about Duchenne Muscular Dystrophy and it is not uncommon for them to feel discomfort about discussing end of life issues.

A physician came to the house to examine Christian about a year before he passed away.  He had nothing to say to me and later I received a copy of his notes from the visit – notes that did not even make sense.  The closest thing ever said to us during Christian’s life that even came close to the reality of his prognosis was “you need to talk to the nurse about signing a living will.”

Christian’s passing came swiftly and without much warning.  We were alone and had no idea he would be leaving us that dark Monday morning.  Looking back over 2 years later, it hurts, but I know that harboring bitterness and resentment towards the medical community will not bring him back or ease my pain.  I can only use this experience as a driving force to inform others that they do not have to face the eventual passing of a loved one alone and without the truth.

After reading Bronnie Ware’s blog post I realized that I am not waiting until it is too late to reach for my dreams and set goals consistent with my values.  It is never too late to use my pain to ease the pain of others. That, ultimately, is my goal: to prevent others from having to go through the avoidable hardships that I’ve suffered.

 

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

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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steve jobs quotes
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!

 

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.

A squirrel in Gibson Park years ago.
A squirrel in Gibson Park years ago.

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!

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Never stop reaching for the sky!

Never stop reaching for the sky!

I’m baaack! I must admit, I was pretty shocked when I noticed how long it had been since I lasted posted. I convinced myself that I did not have time and did not need to write in my blog. It is amazing how if we tell ourselves something enough times, we will really start to believe it. A phrase I have seen many times states that “we become what we think about”. Our attitude really does make our world. It can make or break our day.

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I have recently joined the gym after wanting to go back for several years. It was humbling after my first workout. I ended up very sore and tired. With anything new, it’s easy to fall prey to fearful thoughts. I payed for an entire year up front and I have asked myself several times if that was a mistake. I have been in the same routine for so long that it has become a rut. I spent so many days at a time at home caregiving, cleaning etc. that when I actually did get out, I was a little shocked.

The truth is, I need the exercise, we all do. It keeps us strong and less prone to injury and combats depression and anxiety. I know it will improve my life so long as I keep on keeping on! As I continue on this journey, doors will open, opportunities will present themselves and the walls I have built up will begin to fall.

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