God’s grace for the Race

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Yesterday, I completed my first Island Challenge.  The event took place in Lewistown at the Half Moon Ranch and it featured different events – a half-marathon, overnight bike ride and 8K/11K hikes.  I signed up for the 11K hike.  I am a natural introvert so engaging on such an adventure solo stirred up feelings of fear and doubt.  I had thoughts of backing out more than once.

I woke up early and made the hour-long drive so I could have plenty of time to check in.  I was not disappointed by the beauty of the ranch.  There were cows greeting passing cars on the dirt road leading to the ranch and the rising sun brought everything to life.  I arrived at the pavilion to the smell of bacon and pancakes.  I checked in, pinned on my number along with the memorial pin of my son.  The ranch is surrounded by mountains and wildlife so I enjoyed the views while I waited for the hike to begin.

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When it was time to gather around the starting line I made sure to listen to the directions, especially pertaining to the split between the two hikes.  The horn went off and I began my  journey.  We started on a hill and I slowly ended up in the back.  I told myself that all I want to do is finish, even if I am last.  I was looking forward to the solitude of being in the back.

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We went uphill for over a mile and my heart was racing.  My legs started to burn in places they usually don’t and the terrain became very rugged.  I had to watch where I was stepping so I wouldn’t fall or roll my ankle.  As we started to spread out more, I could hear the wind blowing through the tops of the pines.  Everything around me was beautiful and so full of life and color, even the rocks and foliage along the side of the road.  I made it to the first water station and was happy they had kleenex and fresh fruit.  The oatmeal I ate for breakfast wore off before I even started the hike.  We had a brief respite from walking uphill but another hill waited after the rest station.  I attacked it with vigor and pumped my arms to give me a boost.  Tendons I didn’t know existed were sore and I  began to feel the weakness caused by the muscular dystrophy.  I wasn’t about to let it stop me.

 

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I thought of Christian and how he and his brother were never able to hike because their bodies became too weak once they were old enough.  I thought of my mother and the pain she has endured from her legs giving out.  I also thought of a co-worker who is battling cancer.  I felt that second wind come along and I kept it up.  I walked alone for a good part of the hike except for the marathon runners that passed occasionally.  I came up on the 6K sign and realized I was over half way through.  The second water station came a short time later and they said I had one mile left.  I thought the nice man didn’t know what he was talking about.  How could I only have one mile left?  I pressed on further and approached a downhill slope that made me hesitate.  I pictured myself trying to run down it and tumbling down for eternity like Chris Farley in one of his movies.  I eased my way down and felt my quads burn like fire.  When I was closer to the bottom, I let gravity help me and ran a short way.  I slowed, went through a gate and I could hear cheering.  I thought that was odd because I still had a way to go.  The pavilion came into view and I knew something was off.  I felt like I had accomplished something great, but 11k in a little under 2 hours?  I crossed the finish line with a smile and a feeling of completion.  It didn’t dawn on me that I went the wrong way until I noticed hikers with the 11K blue race bibs on cross the line that were in front of me earlier.

I have to admit that I felt disappointed because I signed up for the longer hike.  I beat myself up a bit for making a mistake and missing that turn.  I was very tired and sore after completing the shorter hike so I thought that maybe it was for the best.  Next year I can try the longer hike.

I opened my devotional this afternoon and read about the grace of God.  Grace is the evidence of his love for us which is freely given.  It comes to us as talents, through other people or in ways totally unexpected and most needed whether we realize it or not.  God wants for us what is best and sometimes it seems unfair.  Although my hike ended up being 3K shorter than planned, perhaps He knew that I started off too big.  My legs ached like they haven’t in years and I really cannot imagine how they would feel had I completed the longer hike.

I cannot change the fact that my legs are not as strong as I would like but God has given me the ability to keep walking and hiking, just not marathon distances.  He has blessed me with a loving husband and a son who despite his prognosis, continues to do everything he can with what he has.  He also blessed me with a son who kept fighting until his last breath.

Christian was with me on my hike walking beside me and he knows I gave it my all.  For everything he lost and everything Andrew continues to fight for I will not give up, even if it means taking a path I didn’t expect to take.

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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.

 

 

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!

 

I will keep getting back up!

Drew patiently awaits his name being called to go back to see the lung doctor.
These critters have looked down on us every six months for as long as I can remember.
This wall hanging with the names of other patients is always a comfort to look at.
Drew is getting ready for his spirometry test with a plug over his nose.

Drew had his 6 month check up this morning with his heart and lung doctors.  We had to get an early start on things and jet across town by 8:30.   The sun was shining and we were in good spirits.  We expected to hear good news based on Drew’s energy level and overall well being.

Drew had his heart echo first.  The boys have been seeing Dr. Ruggerie since they were small, shortly after their diagnosis of Duchenne Muscular Dystrophy.  He treated Christian up until he passed last October.  Unfortunately, after less than a year after losing Christian, we found out today that Drew’s heart and lung function numbers have decreased.  We know how this disease progresses and have had this told to us in the past about Christian, but it still doesn’t prepare us or make it any easier.  The heart is a muscle and muscles in our chest help us to breathe.  Duchenne’s affects all of the muscles in the body.  It doesn’t pick and choose, doesn’t affect only the face, legs or hands.  At times, I think this disease is a monster.

Oh, sure, I could curl up in a ball and give up.  Yell.  Get mad.  I would rather get back up, dust myself off, and keep fighting for Christian, who I know would want me to keep fighting, for Drew, my husband, my mother and for all of the boys and families dealing with this devastating disease.

The more I see this disease affecting my son and my mother, and especially after losing Christian last October, the more I want to do something to help, educate people and keep fighting for a cure.  Okay.  Here it is.  I want to write a book.  This scares the crap out of me but I know it needs to be done, especially after I found out the telethon has been discontinued.  I don’t have a writing degree or any kind of education that pertains to writing a book but I have lived it.  I have seen my boys learn to walk but eventually lose that ability.  I have seen them fall,  I have heard the awful things other kids have said to them.  I have seen them go through the surgeries, humiliation, raw fear, pain and suffering.  I don’t know how to begin but writing in this blog and sharing my heart with all of you is the first step.  Thank you so much for reading my blog and walking with me on this journey.  This book needs to be written.

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!