The rose or the thorns?

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We celebrated Drew’s 21st birthday at the Allegra in the Wynn.  Chris Myers was eating dinner there and he wished Drew a happy birthday!

Yesterday, Drew had his 6 month checkup with the heart and lung doctors.  Drew has Duchenne Muscular Dystrophy, a life-threatening form of MD that attacks muscles all over the body, including vital muscles like the heart and muscles that help us breathe.  When we took Drew to see the doctors about 7 months ago, his numbers went down, so naturally we were nervous and afraid.  To our surprise, the doctor came in the room, smiled, and asked me what I am giving Drew because his heart strength went up significantly.  It was a blessing and a relief.

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When the boys were young, they participated in Eaglemount, therapeutic recreation for disabled kids & adults.  Christian wasn’t afraid of the horses.

Not too long after receiving the good news, I kept wanting to ask about Christian.  Why did he have to suffer so much?  Why was his heart so much weaker?  WHAT DID I DO WRONG?  WEREN’T YOU PAYING ATTENTION?   Most of the time, as I have been reluctant to accept, we will never fully understand or even know exactly what happened until we see our loved ones again in heaven.  I believe we will experience so much peace and joy in God’s presence that it will not matter.  Even when things go well and life gives me roses, I still want to hold onto the thorns.  What will happen if I stop being so sad?  Will I forget his voice, his smile or his strong spirit?

Part of healing is being thankful for each day and living each day as I know Christian would want me to live.  I have had my pity parties and it’s normal when we are grieving, but after a while they actually do more harm than good.  Complaining and being negative keep us from being all God created us to be and all Christian would want me to be.  There were so many things Christian was not able to do and he accepted it most of the time.  So many things that are mundane or even grievous to the rest of us were all Christian ever wanted.  He wanted to work, run track and do the same classwork as the rest of the students.  He wrote letters until he could not tolerate sitting up at his computer anymore.  He tried reading the bible from front to back until his pain started and he had to spend most of the day tilted back in his chair.  He did everything he could until his last breath that chilly October morning, which feels like it was yesterday and like it was ages ago at the same time.

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I will focus on the roses in life and not hold onto the thorns.  I will honor my son’s life by thanking God for the new day when my alarm goes off.  I will be thankful that I can work and that I have my health.  I will be thankful for clouds as well as sunshine, Mondays as well as Fridays, unpleasant people and sweet people, sour and sweet.  I will live.

 

 

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!

 

Just keep swimming!

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I am having one of those days when my body does not want to cooperate with my mind.  Sometimes, despite my best efforts in my diet, I still experience inflammation.  Unfortunately, this does not mean that I can stop moving.  On days like today, I need to motivate myself and Dory from Finding Nemo is always there for me.  Remember when Dory and Marlin were descending into that deep pit in the ocean?  She started to sing “just keep swimming, just keep swimming”.  I used to keep a little plastic toy of Dory close by so I could be reminded to just keep swimming!  I also often have to remind myself that it is all right if I am slow because at least I am moving forward.

Maybe more of us need to be like Dory.  She was curious, joyful and full of life.  I find myself to be like Marlin, fearful of trying new things, a little uptight and sometimes needing someone like her to hold my hand as I swim down into the unknown.

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If I need a good laugh, I can listen to her try to communicate with whales.

thI think that many of us can identify with at least one character in a Pixar movie or any movie and sometimes that can motivate us to keep on trudging towards victory no matter how we may feel!  Is there a cartoon/Pixar/movie character that you can identify with?

A lesson in poetry

The road less traveled

The road less traveled

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveller, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference

…Robert Frost

I was never very good at interpreting poetry in school but “The road less traveled” is one that I have been able to relate to a good portion of my life.  One that many of us have.  We face choices every single day and most of the time, not having the slightest idea what the outcome will be.  We try to see into the future as far as we can, thinking of every single way a situation can turn out.  We rely on our gut instinct, or pray about it, hoping it will all turn out okay.

I am often in this situation each day in dealing with the boys’ MD.  Whether the decision is big, such as whether a surgery will be worth the risk; or small, such as what to give the boys for dinner, we stand at the edge of the wood like Robert Frost did.  We have made good decisions, such as keeping the boys on a wholesome, mostly vegetarian diet to reduce inflammation; and we have made bad decisions, such as staying in a hotel room with unaccessible features that ended up causing prolonged back pain for Christian.  With every choice we all do our best and that is all that matters.  I firmly believe, and have experienced, that God helps us out of difficult situations that were the result of a bad choice because He knows that our choices are made out of love.  I also firmly believe that every choice we have made, good and bad, has brought the boys to where they are today – happy, healthy and full of vigor for life!

The path we are on is also the less traveled one.  We have made many choices that we knew would require more work but did it anyway because we wanted to do what was best for the boys.  I read a saying that basically said that when we make the hard decisions today, it will make for a better tomorrow.  This has been true in our case.  We opted for the boys to have spinal fusion to correct their scoliosis and as a result, they sit up better in their chairs and their lungs can fully expand.

Drew before his spinal fusion surgery at Shriners
Drew before his spinal fusion surgery at Shriners
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After spinal fusion

We will continue to face big and small decisions and an unknown future.  This can create a lot of fear and a good amount of uncertainty, but if we do the best we can with what we have today, it will all turn out just fine.  All I have to do is see one of the boys’ beautiful smiles to know this.

Ma Haney

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Years ago, my husband’s grandmother from Tennessee, Dona Haney, told me that I needed to write a book to tell of our everyday experience and struggles with muscular dystrophy.  I thought it sounded like a brilliant idea but something that I would need to hold off on for a while.  Well, maybe this could be the beginning!

Dona and Dave’s grandfather, Gene Haney, have driven all the way up here from Tennessee several times to visit.  They are in their 80’s and enjoy traveling.  Dave has always called them Ma and Pa.  Ma, despite her congestive heart failure and diabetes, has continued doing what she enjoys such as going to the Smokey Mountains, attending family reunions and weddings, traveling all the way to Montana and California and spending a lot of time with family.

Even though it was tiring and they had to stay in a hotel while they were here, Ma and Pa made it over for the boys GED graduation this past spring!  It was a wonderful time.

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Our neighbors, Len and JoAnn, came over to celebrate with us as they usually do for special events.  I was playing the Gene Autrey radio station on Pandora (since Len likes a little “C & W” as he calls it) and him and Pa were seeing who could guess what song was on.  It was great!

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Although Len and Pa had only spoken once before on a previous visit, they really hit it off!  People from their generation are more easy going I guess!

I wanted to share this with you because it was Ma who inspired me years ago to tell our story.  She is an inspiration to me in so many ways, Pa too.  They worked hard through life to earn everything they own, they are always willing to help others and they are a blessing.  Before they left this past spring, Pa’s advice to me was to not take life so seriously because it goes by too fast!  God bless and enjoy the rest of your Sunday all!

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