Lift Up your Eyes

“The Lord said to Abram after Lot had left him, Lift up now your eyes and look from the place where you are.” -Genesis 13:14

Lot and Abram had to separate because the land was not big enough to sustain all of their herds, helpers and goods.  Abram gave Lot the first choice on whether to choose the better land in the Jordan Valley or the less desirable land of Canaan.  Lot chose the Jordan Valley.

This story has great meaning in my life today.  It is far too easy to become discouraged because my sons were born with a life threatening disease without a cure.  God doesn’t want us to focus on everything we have lost.  He wants us to lift up our eyes and trust that He will lead us into a bright future filled with possibilities and joy.  It is impossible to notice His blessings and miracles when our eyes are focused on the ground or when our hearts and minds are stuck in the past.  God wants us to lift up our eyes and focus on everything we have, not on what we do not have.  When we keep our eyes fixed on Him, we will see that He has plans to bless us.

Only when we lift up our eyes can we see the blueness of the sky, the way the white clouds effortlessly float past the window, the bird on the branch, or the flower on the windowsill. When we thank the Lord for a new day the minute we open our eyes each morning, we invite His blessings into our daily lives.

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Looking up can bring us out of a state of depression and discouragement, and even help us to feel confident.  Today, I encourage you to believe that no matter how difficult your circumstances may be, God wants to bless you and prosper you.

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!

God’s Love

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It is one of the most humbling yet empowering experiences ever to truly open our hearts and receive God’s love for us.  Sending His Son to us on Christmas day so long ago is ultimate proof of God’s love.

Why do our hearts break?  Because we have loved.  We love so much that our hearts feel that they could burst.  After Christian passed away, I felt my heart break.  Anyone who has lost a loved one or who has been separated from someone they love knows this pain.

When we accept God’s love for us, our hearts fill and when they break, perhaps this is how our love can flow out of our hearts to others.  We love others and ourselves with the love God gives to us so abundantly.  How would we live our lives if we truly accepted God’s love?  How much more would we be willing to serve others?  How much more would we invest in our God given talents and eventually use them to bless others?

God loves us for who we are.  God loves us despite our mistakes and failures.

The greatest gift we can receive this Christmas and every single day of our lives is God’s love.  The greatest gift we can give back is our hearts.

 

1000 Miracles

Two years ago today, we laid our son to rest.  We witnessed the love and support of many – our loving family, friends we hadn’t seen in years, and friends who traveled over mountain passes to say goodbye to our boy.  A bouquet of flowers sits on my kitchen table – an array of orange roses along with white, orange and purple flowers I cannot name.  When I awoke and walked into the dining room, the scent of the flowers made a picture of Christian’s room filled with flowers after the funeral flash into my mind.  I felt the hollowness and the ache of my boy being away from this earth.

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I took on a challenge of sorts and decided to begin this last Thursday – the day our boy passed away.  I am writing down at least 10 things a day that I am thankful for along with reading and reflecting on a devotional by Ann Voskamp called One Thousand Gifts.  After 3 days, I have learned more than I have in months, maybe even years.

I learned why my mind darkened and my heart closed to God’s grace.

My husband and I went through some old photographs – pictures of my sons when they could walk and stand.  Swimming, vacations to Disneyworld and Las Vegas, horseback riding and spending time doing so many fun, simple things in Lewistown with my parents, sisters, brother-in-law and cousins.  Those were the days when my heart was full of light.  I felt, witnessed and lived God’s grace.

As the boys lost the ability to walk, brush their teeth or even feed themselves, my heart slowing darkened.  When I needed God’s grace the most I closed myself off from it.  I didn’t realize at the time why it became harder for me to notice the miracles I always noticed before Christian’s health really started to decline.

Yesterday, I read these verses:

“For that which is known about God is evident to them and made plain to their inner consciousness…For ever since the creation of the world His invisible nature and attributes, that is, His eternal power and divinity, have been made intelligible and clearly discernible in and through the things that have been made.  So men are without excuse…they did not honor and glorify Him as God or give Him thanks…and their senseless minds were darkened.” -Romans 1:19-21

My heart began to hollow out when I stopped expressing my thankfulness to God for His gifts big and small.  He gave us so much to praise Him for and continues to each and every day.  When we notice and confess the goodness He so readily gives to us, our eyes open to His divinity which surrounds us all of the time.  I know now why I began to see an extra layer to life after Christian passed away.  I began to notice things that made my heart want to burst – colors in the sky I hadn’t noticed before, sunlight on a sparrow’s face as he enjoyed seeds from my feeder, the sounds of the wind blowing autumn leaves still attached to a cottonwood.

I went on a walk yesterday and noticed things I had not noticed weeks ago.  I am sure I looked funny because I stared in amazement at the Missouri River and the way the moving lines in the water reminded me of an orchestra, the golden leaves gently fluttering on the trees, and dogs with happy faces running in the dog park.

The more thankful I become, the more I see, feel and live God’s grace.

Remembering God’s Grace

Fall had always been my favorite season.  The beauty of the changing leaves and the flight of the starlings amazed me.  Since losing my son however, the arrival of Fall has brought with it a sense of dread.  Now, seeing the flowers wilt and the branches become bare make my heart ache.  This Thursday will be 2 years since we lost Christian.  As the yellow and orange leaves scattered my front lawn, I remembered going outside to take his photo on his last birthday.

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When they came to pick up the signs we rented for Christian’s birthday, I felt an ache in my heart and I didn’t know why.  The fact that we would lose him 15 days later was the furthest thing from my mind.

As the 27th approaches, I want to remember God’s grace.  I want to remember the kind things people did and said after Christian passed away.  Sure, the pain will be there but God’s grace can be in my heart too.  We literally had a roomful of flowers and a stack of sympathy cards – some from people I had never met such as a woman in Lewistown who gave us $100.  I remember my friends, Tracy and Amanda, coming over to the house and offering to help with the food after the services.  A woman from Kalispell who lost her son to the same disease just weeks prior drew me a picture of Christian.  My dad drew a picture and my mother helped as much as she could.  Another woman who lost her son to Duchenne MD flew in from Columbia Falls to attend the services.  Sara from Infinity Lofts set up a dove release for us at the graveside and let my son Andrew hold and release the first dove.  My good friend Michelle drove up from Lewistown and brought me something vegan to eat.  Our friends Mike and Monica brought us our groceries for a couple of months until I was ready to go to the store myself.  We received care packages from friends in Wyoming and Hawaii as well as family in Montana.

 

 

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We went back up to the cemetery a few days later to release more doves.  Drew was able to hold and release Sirius again.

The pain was unimaginable but God’s grace kept us from completely breaking.  Remembering the love and kindness of others makes the pain a little more bearable and gives me comfort even today.

Fight for a Cure

Today is World Duchenne Muscular Dystrophy Day.  This is the first year I have heard of a day being devoted to DMD and perhaps it has to do with the Jerry Lewis Telethon no longer being aired.

Most people do not know what Duchenne Muscular Dystrophy is.  Many people have mistaken it for Multiple Sclerosis, which is also a neuromuscular disease but is not the same.  DMD is a genetic disease when muscules are missing a protein called dystrophin.  Without this protein, muscles cannot fully develop and they eventually start to deteriorate.  Unlike other types of MD, Duchennes attacks muscules all over the body, not just the legs.  The arms become weak, along with shoulder, abdominal and back muscles.  Being the monster that this disease is, it also goes for vital organs, such as the heart and weakens muscules that help us to breathe, such as the diaphragm.  Many boys succomb to the disease from pneumonia or heart failure.  As back muscles weaken, scoliosis sets in, making surgery necessary.  Without spinal fusion, which is very risky and involves a titanium rod being put into the back so it can be kept straight, the spine continues to compress which makes it difficult to breathe and puts stress on the heart.  Many of the boys have to use ventillators to aide in breathing earlier on without the spinal fusion.

Muscles that we take for granted to aide us in our balance so we can sit up straight deteriorate making it impossible to sit on a chair without support.  Without the ability to stand, many families use special lift systems to help transfer their kids from bed to chair and even to use the bathroom.

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Making friends at camp

 

Duchenne MD takes on its full form in males.  My mother has a more aggressive mutation of DMD and she has lost a lot of muscle in her legs and arms.  She has fallen and injured herself and we are looking at making modifications to her home in the future to insure her health and safety.  I have symptoms but they are not as severe as my mothers and I hope I can keep them at bay by being proactive with a plant based diet and plenty of walking.  We recently found out that my youngest sister has the disease and it was passed on to my 10 month old nephew.

Me, my sister Sonja who is also a carrier and Damian who has been recently diagnosed with DMD

 

Duchenne MD, along with many other neuromuscular diseases, takes a tremendous emotional and financial toll on families.  The spinal fusion surgery is a six figure procedure and a power wheelchair can cost well over $15,000.00.  This doesn’t account for lost wages because unless a good caregiver is available, one parent has to stay home to care for their son.  There are also regular visits to the cardiologist and pulmonoligist along with physical therapy.

Drew preparing for a breathing test

 

We lost our oldest son, Christian, in 2014 to this disease.  His heart became too weak and he had a great deal of trouble breathing.  My other son, Andrew, continues to deal with the ongoing weakness and complications related to DMD.  He has days when he is in a great deal of pain and most boys cannot take large amounts of painkillers because of the side effects.

Christian had to spend a great deal of his last year tilted to control his pain.

 

The Jerry Lewis MDA telethon has raised millions to aide in research so we can find a cure to this disease, along with other neuromuscular diseases.  It was heartbreaking to hear about the end of the telethon.  We now have to think outside of the box for ways to raise more awareness and to continue to fight for a cure.  There are several different methods being studied with some actually showing improvement for some of our boys.  It still has a way to go but we must not lose hope.  I, along with many other mothers and fathers that have to live with this disease every single day, do not want this day to be lost among the other fun, national holidays – National Hug Your Cat Day or National Pizza Day.  Please donate to your local MDA events, such as Fill the Boot and the MDA lockups to support statewide summer camps and MDA Clinics.  The clinics are very important, especially for people who live in such a spread out state like Montana.

We have had to watch the boys lose friends from MDA camp and in turn fear for their own future.  I have created a Facebook group so us moms can support each other during difficult times and give each other ideas as the disease progresses.  With enough awareness and scientific research we can beat this disease and give our boys hope.

Light Pierces the Darkness

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It has been several weeks since my last post and since then, we have gone on vacation and survived the spring forward time change.  The robins are back and the trees are blooming.  I have put off writing again and again because admittedly, I have been depressed.  Not just the “I’m having a bad day” kind of depression, but the kind that makes your bones ache or   feels like a heavy weight is on your chest and you have to talk yourself into getting out of  bed a lot more than usual.  This is not easy for me to admit.  I had the hardest time trying to pinpoint the cause or event that triggered this cloud that has been hanging over my head – is it grief, lack of exercise or fun, my diet?  Although all of these things can contribute to depression, the antidote that makes a world of difference in finding the light again is contained in one word:  GRATITUDE.

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Years ago, I started a gratitude journal.  I kept it on my nightstand and made myself write down 5 things I was thankful for from that day.  Despite the prognosis of my sons’ disease, I was able to find the joy in life almost every day.  As the surgeries increased and the care took longer and became harder, and as I had to watch my oldest son endure pain and loss that was completely unfair, I stopped writing in it.  A few months after we lost Christian, I bought a new gratitude journal.  I may write down something big like “I am thankful for receiving an unexpected refund in the mail today” or something small like “I am thankful for the chickadees singing outside of my window.”  Anything big or small that we can find to be grateful for can lift us up.  We literally have to lift up our heads and look around so we can notice the beauty of God’s creation, which in turn lifts up our hearts.  A heart of gratitude sets the stage for God’s blessings and His favor.  It also opens windows and doors for goodness to flow into our lives and invites joy into our hearts.

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