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.

 

 

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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A Tune in my Heart

After work today, I met my husband and son for dinner at our favorite Mexican restaurant.  I think we all have one of those.  Our favorite restaurant serves authentic cuisine and  warm corn chips.  Afterward, they were off to play poker and I reluctantly headed home.  Alone isn’t a bad thing, but coming home to a quiet, empty house is a painful reminder of the loss.  Over Christian’s life, the most time he ever spent away from me was during MDA summer camp which lasted for a week.  When you care for a child with special needs, you develop a deeper connection, especially when you physically care for them 24/7.  When Christian passed away I felt like I was thrown into an alternate universe.  After 16 months I have become used to the new normal, but I still have moments when the realization that Christian isn’t with us makes my world turn on it’s side for a bit.  Over time the dizzying effect doesn’t last as long but it will never be easy, just bearable.

Almost every time I have found myself alone in the house missing my boy, I turn on the music.  Christian had so much passion for music.  He enjoyed 90’s rap like NAS, current rap like Wiz Khalifa and Kid Cudi, and classics such as the Rolling Stones and Paul McCartney.  He talked me into buying several vinyls during the last year of his life.  He encouraged me to buy the vinyl even though I had the CD because the quality would be worth it.  Christian even talked me into buying music that he knew I enjoyed but he didn’t much care for either way.  He grew to enjoy a lot of my favorite alternative bands like Interpol and Bare Hands.

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One of my prettier vinyls by Blondefire

They say that it changes a person when someone you love dies.  That is an understatement.  I felt hollowed out for the longest time and had to rediscover who I was.  I was a caregiver for both boys for over 10 years.  It took me weeks, even months, to stop setting out two sets of pills at mealtime.  Not all of the changes have been negative.  I would never have believed it if someone told me I would gain anything from losing someone who was as much a part of me as Christian was.

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I took this photo at Crystal Lake last summer.

When I see a beautiful sunset, I see so much more than what I used to see.  I see something amazing and holy.  I feel a stirring inside of me that I have never felt.  I see and feel God when I see the rays shining through the clouds, the chickadee in the pine tree, the beautiful pattern on the carpet at work from the sun shining through the window or when I see the stars in the sky.  I feel a joy inside that I can’t explain when I look at things that to another person, may seem like nothing.  It makes me feel guilty at times.  How can I have moments of joy after losing my son and watching Andrew deal with the same complications as Christian did?

When we lean on the Lord, the amazing happens.  The journey of grief is far from easy but we do not have to endure it alone.  God heals us.  God loves us.

As I listened to a song by Deathcab for Cutie, which Christian also enjoyed, I heard guitar melodies I didn’t hear before.  Music touches me at a deeper level, bringing me to tears or making me want to get up and dance (listen to Stolen Dance by Milky Chance and you’ll know what I mean).  Just knowing Christian and caring for him has given me a deep appreciation for life.  I want to reach out and help those who have lost a loved one and I pray and I cry for them.  I will not waste my pain.  Instead I will find a way to help in a way that I know Christian would be proud of.  I hope my posts offer a bit of hope and remind you that you are never alone.

 

 

Let’s Go Racing!

Tomorrow is the Daytona 500.  We are usually excited but even more so this year since we will be going to the race in Las Vegas next month.  When we received our tickets it was bittersweet because only three arrived in the mail instead of four.

In years past, we invited friends over to watch the race or made sure we had plenty of pizza and snacks to celebrate.  Over the years the boys started watching more races and picked their favorite drivers.  Drew is a Dale Earnhardt Jr. fan and Christian liked Jeff Gordon.  You can imagine our disappointment when Jeff Gordon announced his retirement, which just happened to be the year after we lost Christian.  It was bizarre seeing Jeff Gordon in the announcers booth with a suit on instead of on pit road in his fire suit.  I know Christian would have been bummed out not seeing the Dupont car on the track.

Since we lost Christian, I cannot hold the tears back as the National Anthem is performed or when Darrell Waltrip yells “Boogity, Boogity, Boogity!  Let’s go racing!”  I would like to share some photos of our trips to Las Vegas to see the race.  Christian and I just loved it when Darrell would yell at the beginning of each race so if you get the chance to tune in, even just for the “Boogity,” say it out loud for my son.  Enjoy!

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Christian wore this shirt almost every Sunday.  We set it out for the Daytona race last year.
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I became a Brad Keslowski fan after this moment.  He pushed the table aside for the picture and was very kind and patient.
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Kurt Busch was the first driver the boys ever met.  I am thankful he took a few moments for this photo.
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Dave and Drew all smiles as we wait for the green flag.
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Christian said meeting Michael Waltrip was the highlight of his last trip to Vegas!  The smiles say it all.

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!

 

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!

 

Hit me Like a Bomb

As I was preparing lunch this afternoon, Hit me Like a Bomb by Third Day came on.  Lyrics video From the first time I heard this song, which wasn’t too long after Christian passed away, the lyrics became personal.

You hit me like a bomb
And everything I’m used to
Is suddenly gone
Sorry to accuse you
Do you know what you’ve done
When you hit me like a bomb

Hear the sound of the sirens ringing
See the world of a life that’s changing
Well you hit me like a bomb
I was scared and I started running
Can’t say I never saw it coming
When you hit me like a bomb

(La la la la la la la la…)

You hit me like a bomb
Everything’s changing
It didn’t take long
For you to start rearranging
Everything that I’ve known
When you hit me like a bomb

(lyricsmode.com)

I knew Christian wasn’t doing well.  His overall health was declining rapidly over the last 6 months of his life, whether I wanted to see it or not.  We knew we had to take him to the doctor and probably the hospital, but we didn’t think we were going to lose him that night almost 10 months ago.  When I went into his room to wake him up for the day, I was hit by the biggest bomb ever.  Our life as we knew it – forever changed.

I lost my son, my best friend, my hero and my life as I knew it.  Everything changed, including how I looked at life.  Life is still changing, rearranging.  Everything I ever knew up to that point no longer mattered.

As time has moved on, we have been healing in our own ways but we will never be the same.  Christian made us appreciate the small things, even something as simple as seeing a bird outside of the window or a spot of sunlight on the wall.  Because of him, no matter how much the darkness enfolds me, I will NEVER give up.  I have moments when I feel angry and I question God about Christian’s pain and suffering.  I remind myself of God’s love, provision, mercy and grace so the anger isn’t able to fester and make me bitter.  I would rather heal and live the life Christian so much wanted to live but wasn’t able to.

This song by Third Day has a rock sound to it and plenty of energy.  Let me know what you think!

Blog mania

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Hello blog world.  I hope everyone is having a good weekend!  The weather cooled off some in Montana but things are creeping back up into the 90’s again.  I filled the bird feeders this morning along with the bird bath and it wasn’t long before I witnessed some sparrows taking a dip.

I wanted to share with you a new format I want to try on my blog.  I have wanted to write regularly but sometimes it can be hard to come up with a topic.  It seems like the ideas pop into my head when I have nothing to jot them down on – like when I go to the store and forget what I came for.  I thought it would be fun to focus on a particular topic on certain days such as Throwback Thursdays or Photography Fridays – just something to dust the cobwebs off of the dark, unused corners of my mind and start being creative again.  Later this week I want to share with you how my blog is hopefully going to fit in with a larger goal I have in mind – something people have been encouraging me to do but I have been terrified of.  It involves writing a book.  That’s all I will say for now.

We are going through quite a bit of change in our household with my husband changing jobs and it’s far too easy to fall into the trap of fear and negativity.  I admit that my thinking and my words have not been too positive lately.  I miss Christian terribly and going through a major life change almost makes my heart ache more.  One thing that helps me through difficult times is to remember all of the good things God has done for us over the years.  He has provided us with all of the medical supplies for the boys, the right doctors and resources to ensure that my sons would have the best quality of life we could offer them.  The verse I want to share is from John 10:10 (NLT), one of my favorites.  Jesus said “The thief’s purpose is to steal and kill and destroy.  My purpose is to give them a rich and satisfying life.”  God’s goodness and abundance is limitless and so is His love for us.  He knows we are not perfect but yet He provides.  Jesus said himself that He wants us to live a full, satisfying life and He will provide all that we need and more.

I hope you will enjoy my new platform.  Some days are busier with doctor appointments and caregiving for my son but I will do my best to say a few words or make sure to the next day.  Thank you for reading my blog and have a wonderful week!