Could Have Been Me

Today’s song of the day is Could Have Been Me by The Struts.  When I listened to the lyrics, I wanted to jump up and shout the lyrics along with the song.

Don’t wanna live as an untold story
Rather go out in a blaze of glory
I can’t hear you, I don’t fear you
I’ll live now cause the bad die last
Dodging bullets with your broken past
I can’t hear you, I don’t fear you now

Wrapped in your regret
What a waste of blood and sweat
Oh oh oh

I wanna taste love and pain
Wanna feel pride and shame
I don’t wanna take my time
Don’t wanna waste one line
I wanna live better days
Never look back and say
Could have been me
It could have been me
Yeah

Don’t wanna live as an unsung melody
I’d rather listen to the silence telling me
I can’t hear you, I won’t fear you
Don’t wanna wake up on Monday morning
The thought of work’s getting my skin crawling
I can’t fear you, I don’t hear you now

We all have songs that speak to our hearts.  This particular song has since the first time I heard it.  I think that three of the worst phrases along with “I can’t” are phrases that include the words coulda, woulda and shoulda.  I use these words far more than I ought to and I want to say them less.  If I live to be an old woman, I want to look back and know that I lived the best days I could in service and love.  I hope to be able to look back and know that I changed the world in some way, even by encouraging and uplifting others.

We all have a song in our hearts and many of us are afraid to live out the melodies that God places in us.  Fear can only keep us from living with purpose and without regret if we allow it to.  Our pasts cannot keep us from having an excellent finish.  When we refuse to allow fear and mistakes of our past to keep us from pursuing our dreams and showing up each and every day as our best selves, then we will not have to say “It could have been me.”

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Staying Healthy as a Caregiver

As parents, we all know the value of taking care of ourselves.  As a parent of a special needs child it is even more important.  The physical, emotional, and mental demands can easily cause burnout if we neglect ourselves.  I have learned a hard lesson with this over the last year.

For over 10 years, I was blessed with great health and strength as I cared for my two sons.  Due to the progression of Duchenne Muscular Dystrophy, their needs only increased over the years.  As their needs increased, my free time became more sparse so I had to make an effort to make the time count.  I tried getting out once a week to my favorite coffee shops or the bookstore to enjoy my favorite novel, going for walks on the River’s Edge Trail, or reading the Sunday paper with a cup of freshly brewed coffee.  I learned to cherish the small things and I still do.

I was diagnosed with Cervical Dystonia two months ago and for the first time ever, I was unable to care for my son.  It was a very painful, humbling feeling and I am thankful my husband did most of his care.  I have learned a lot going through this experience.  I learned that it is far easier and not as expensive to prevent illness than to have to heal from it.  Dystonia is genetic and it is possible that I may not have been able to prevent it, but like many illnesses it can be overcome.  I wanted to share some simple, yet powerful steps we can take daily to stay healthy and have the energy to keep up with the sometimes overwhelming demands of caregiving.

For many years, I got up well before I needed to get the boys started for the day.  Before Christian passed away, it took 3 1/2 to 4 hours to get them ready for the day.  It was far easier to accomplish this on a daily basis when I knew that I at least did my personal care and took some time for myself already.  This time can be spent doing the things we enjoy such as sitting quietly with a cup of coffee, reading the paper, in prayer, listening to music, or exercising.  Every afternoon, I would lay the boys down for 30 minutes of rest time from their wheelchairs and take that time for a cup of tea and a good book.  If I had extra time before preparing dinner I would use that time to write a letter to a loved one, send a greeting card, practice playing the piano or sit outside in the sun and watch the birds.  It is amazing how energized I would feel after taking even 20 minutes to read a book I enjoy.

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

After losing Christian, I lost my way.  All of a sudden I had all of this time I never had before, and for a long time I felt guilty for trying to do something for myself.  I have since realized that it is an honor to Christian’s memory to pursue my dreams because he never gave up on his.  Christian read books up until the last 2 weeks of his life.  He tilted back in his wheelchair, turned his head sideways on his headrest, and read on his iPhone.  We all have gifts given to us from God and if we do not invest in them, we are throwing them away.  The world ends up not being as wonderful as it could be with our gifts.

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Christian won an award in high school for his excellent work overcoming his disability to create art.

Pursuing our dreams and goals also encourages our children to never give up despite their physical limitations and it also instills some normalcy into their daily lives.  We have more energy to enjoy life and we become strong inside so we can better face the uncertainty associated with complications from the diagnosis.

Please share some ideas you may have about taking care of yourself and enjoying life to the fullest as we care for our loved ones.

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Scars Strengthen Us

I read a story about four seeds in a book by Rev J. Martin called God’s Grace Is On The Way:  Let go, embrace love.  To sum it up, four seeds were taken up by the wind and dropped into a clearing in the jungle.  Their dream was to grow to be beautiful trees, towering over the jungle.  Three monkeys also lived in the clearing that liked to amuse themselves by throwing bananas at any plant that tried to grow.  This made it very difficult for the seeds to take root.  The seeds agreed that it would be better to wait for the group of monkeys to move on before they attempted to grow.

Weeks passed and one seed thought she should at least attempt it.  When she tried to grow, the monkeys pelted her with bananas.  She tried and tried, even after the other seeds asked her to stop trying.  She didn’t give up but kept trying harder and harder as the monkeys continued to attack the plant.

Then, one day, the monkeys hit her with bananas but none made her stoop over.  The little tree had taken so many blows that she was now full of hard knots and scars.  Her slim trunk had gotten thicker and more resistant and could now withstand the impact of a banana.  The monkeys were unable to uproot her.  She grew until she became the most majestic tree in the jungle.

When we are dealt a bad hand in life or end up facing all sorts of difficulties, it is easy to give up on our dreams and goals.  It could be bad news from the doctor, the loss of a loved one or financial difficulty that puts us in the middle of one of life’s storms.  The storms can be so bad that it is difficult to see the other side of the lake and we wonder how we will ever make it across to the other side.

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After recently being diagnosed with a chronic illness, I wasn’t sure if I could pursue my dreams any longer.  I thought about the loss of my son, Christian, his brother, Andrew,  who continues to fight his muscular dystrophy and my husband who lives with a heart condition.  After being pelted with several bunches of bananas I set my dreams aside.

When we make it to the other side of life’s storms we become more resilient and strong.  God can use us in amazing ways when we let Him give us the strength to keep putting one foot in front of the other when life gets hard.  We can then be an inspiration to others who are dealing with their own difficulties.

We are all given gifts from God to make the world a better place.  Some of us sing, play instruments, serve, sew, write or draw.  Some of us are given the gift of inspiration.  It is amazing what a kind word or a little encouragement can do for the spirit of another.  No matter what difficulties come our way, we must never give up on the gifts that God graces us with.  He knows how important our gifts are so He will give us the strength we need to make it through life’s storms.

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365 New Beginnings

As I look out the window at the last day of 2017, I am thankful for the beauty and perfection on display.  The snow is deep and smooth and it covers everything in a graceful blanket of white.  The sky is a soft blue with whispy clouds and the birds gently eat at the feeders.

Like many, I am ready to say goodbye to this year and hello to 2018.  I have never been one for resolutions or crash diets, but I do look forward to a new beginning.  I am ready to leave the difficulties of this year behind and carry with me the lessons learned and the things God has blessed me with into 2018.  God has blessed me with His strength and mercy every single morning that I opened my eyes.  His Word has given me guidance through difficulties and challenges and has given me comfort on my most painful days.  He has given me a loving, supportive husband and a wonderful son.  I was a bride’s maid in my niece’s wedding this past summer, and my husband and I were able to take a long overdue vacation to sunny California.  God has given me His comfort when I missed my son the most – if I would wake up dreaming that Christian is still with us or if I dreamt of losing him again.  I have learned the importance of balance and rest of the mind, body and soul and how loving ourselves is the foundation to everything in our lives.  By loving ourselves, we become more open to receiving the love of God.  God pours His love into our hearts until they overflow so we can in turn love others.

What are my intentions for the new year?

To love even more…

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To thank God for each new day and for the miracles He so graciously bestows upon us…

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To invest in the gifts God has given me so I can bless others with them…

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To serve others more…

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To do more to brighten another’s day, whether it’s a smile, holding open the door, letting a vehicle go ahead of me in traffic or sending a greeting card or letter…

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To keep my thoughts centered on the good things in life while letting go of the rest…

Each day is a new beginning, a chance to enjoy God’s mercy and love while experiencing His goodness which He promises us in His Word.  I wish all of you a peaceful, blessed 2018 and that all your hopes and dreams come to life while love flourishes in your hearts and daily lives.

 

 

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