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!

 

Mario Kart

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The last thing Christian asked me to do with him was play Mario Kart.  At the time, neither of us knew that it was our last chance to play together.  He beat me every time but it was still fun to play.  About a week after he passed away, I bought a WiiU.  Christian used a Playstation and Game Cube but wasn’t sure if he would be able to handle the larger controller that came with the Wii.  I had an evening by myself and I fired it up.  Once I chose my character and started to play, my heart ached.  Christian talked about playing on the Wii and how much he knew I would enjoy the graphics for Mario Kart.  I felt close to him and my heart ached at the same time because I was not able to share it with him.

Due to the nature of Duchenne Muscular Dystrophy, my sons were never able to ride a bike without training wheels or join the basketball team.  Video games became something they could easily do and enjoy.  Andrew plays Destiny on his PS4 often and has gained a group of online friends.  In Montana, the winters are long and cold, making it difficult for people with disabilities to leave the house.  He is able to socialize with his friends while he plays and has become quite passionate about the game.  Christian was able to continue playing until the night before we lost him.  His hands just stopped working.  I will never forgot the look on his face when he told me he couldn’t hold the controller anymore.

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Our neighbors, Len & JoAnn, joined in and actually played.  Even they had a blast!

I think we all need to play video games every now and then.  I played Mario Kart with Andrew last night and sorely lost, but it was fun and relaxing.  It is so easy to say no, I would rather not.  We never realize how fast our children grow until it’s too late and we are not cool enough to hang out with them.  It becomes more real when your children are diagnosed with a life threatening condition.  We can all benefit from putting our seemingly endless list of obligations on the back burner to play a game with our kids.

I wanted to play video games with Christian that last day but his needs were great and we didn’t have any help.  I really hope Christian smiles down from heaven as I pick up that controller a few times a week and practice so I can kick Andrew’s tail next time!

 

 

 

Last sunset of 2015

As the sun started to lower in the sky this afternoon, I couldn’t help thinking that we were approaching the last sunset of 2015.  Thin, wave-like clouds stretched across the sky and snow was beginning to melt off of the streets.

The sun is almost completely set now, but I stopped for a few moments and watched the sky change colors and the clouds gather at the horizon.  The sun reflected a deep orange onto bare tree limbs and rooftops.  I thought about Christian, wishing he could be with us to celebrate the New Year.  It was the last sunset of 2015 and I am thankful for witnessing such a spectacular display of color.

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2015 was a year of grief, big changes and leaps of faith.  I spent a good part of the year accepting the loss of my son, best friend and hero.  I spent another good part of the year finally starting to realize that I did my best caring for my son until he went to God.  I have come a long way on this long, painful journey and I will feel the hurt for the rest of my life.  I have learned to manage with a broken heart and even feel moments of joy despite the loss.

We took a leap of faith when my husband left a very well paying job for his health.  A few months later, after over 10 years at home as a full time caregiver, I went to work.  Not just at any job, but the company I worked for until I had to leave to take care of my sons in 2005.  It blows my mind how things have come full circle.  Christian was walking when I left, both of my sons were walking.  And now I am back minus one of my boys.  Although this realization is painful, I am blessed to be working at the same place with the best group of people I could ask to work with.

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I became an aunt again and cried when I saw the first photo of little Damian.  I saw my youngest sister as a mother and felt so much love for her.

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Sonja and Damian

I am thankful for the healing God has done in my heart, the healing that has taken place in my husband after working harder than anyone I have seen for 14 years, for the blessing of returning to my former employer, becoming an aunt again and for the last sunset of 2015.  Big moments and small I am thankful for it all.  Corny but it rhymes, right?  Birds visiting my feeder, smiles from strangers, the sound of the furnace on a cold night, coffee with a friend, the small simple blessings that filled my days do not go unnoticed as 2016 approaches.

I will set goals for the new year as many of us do but for now, I will focus on the blessings in my life.  The simple yet most meaningful blessings.

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I find so much comfort in mourning doves.  I cannot take credit for this wonderful shot.

 

Happy New Year to all of you and thanks so much for reading my blog!