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.

Long Time No Post

I must admit I was a bit shocked when I saw how long it had been since my last blog post.  I have read in more that one place that we have to make time to do the things that matter or we will never do them.  We also must not wait until everything is perfect before we pursue our dreams.  Our lives are ever-changing but our dreams remain in our hearts.  I have a dream of writing a book about my sons and their daily battle with Duchenne Muscular Dystrophy.  A book that I hope will inspire people to donate to the MDA and reach out to families afflicted with devastating, neuromuscular diseases.

So much has changed since my last post.  After over 10 years of being a full-time caregiver for my sons, I am back at work.  Not just any place of employment but the very company that I left to care for my sons.  I feel tremendously blessed to be rehired.  Even with blessings, it’s easy to still experience moments of fear and doubt.  Questions circled in my mind such as wondering if I would remember everything.  There is also the social aspect of working outside of the home that I have been missing for far too long.  It has been fun seeing people who I haven’t seen in years, literally.  It has been difficult not seeing my son as much but this change enables us to be a healthier and happier family.

October 27th marked the one year anniversary since Christian passed away.  I honestly thought it would be beneficial for me to go to work and with this year being the first one, I didn’t know what to expect.  Let’s just say I had to go home.  Being with my family made the day easier to bear for all of us.  This fall has been painful.  As I have been watching the leaves turn and fall off of the trees and the sun shine at a different angle, I have been flashing back to our last few weeks with Christian.  The good Lord has given me the comfort and strength I need to keep putting one foot in front of the other.  One sign of the healing that has taken place over the last year is the little moments of joy that fill my heart at the most simple of things.  A squirrel greeted me on one of my courthouse runs with a mouthful of leaves.  A house finch called to me from under a car in the parking lot behind the treasurer’s office.  A pigeon greeted me above the door before I went inside.  The simplest of sights are the most beautiful.

A squirrel in Gibson Park years ago.
A squirrel in Gibson Park years ago.

I had to remind myself lately that going back to work full-time does not mean I have to stop pursuing my dreams.  We can always carve out a little time every day to write, play a song on the piano or take a 30 minute walk.  I would love to hear about your dreams and I will keep you posted on mine.  I have a piano that I would love to start playing again but with most things, I will need to take baby steps.  I read a blog post by Tsh Oxenreider (theartofsimple.net) about not setting goals too big or it sets us up to fail.  It’s far easier to exceed a goal that’s simpler and realistic.  Wise words!

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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!

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.

A Fight to the Finish

Today, a young man named Jacob passed away from complications due to Duchenne Muscular Dystrophy.  I have been connecting with his mother, Apryl, on Facebook for the last few months.  Since Christian passed away in October, I have been able to connect with other mothers who have lost a son to Duchenne Muscular Dystrophy (DMD) or are still fighting the battle like I am.  Andrew is 20 and he continues to fight every day despite seeing his friends pass away and losing his best friend, his brother.  A kind woman, who is also named April, mailed me a drawing of Christian.  Her son passed away earlier in the month and despite her pain and grief, she sent me a beautiful drawing.  I have also had the blessing of being able to help another family in Montana by connecting with yet another April on Facebook.  Christian loved helping others and I knew he was smiling from heaven when April’s family came over to pick up his electric lift, intercom system and other things that would bring a smile to little Tyler’s face.

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So many lives lost.  Ever since the boys were young we would hear about their fellow campers passing away.  Some as young as 15, some in their early 30’s.  Either way, it’s just not fair.  It made my heart heavy to hear the boys talk about their fellow campers and friends who had passed away.  Friends they laughed with and could be completely themselves with.  I see their faces but I cannot remember all of their names.  I recognize them when I look through the MDA camp photos from years past.

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Christian and Mikey at MDA camp in 2004
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Christian, Ryan Clinch, Andrew and Mikey at MDA camp in 2004

Since Christian passed away, I have felt this inner pull to do something.  I read something a few nights ago that said not to waste my pain.  I started a Montana Duchenne Muscular Dystrophy Group on Facebook and I will continue communicating with other families and encouraging everyone to support each other through such a difficult battle.  My husband thinks I need to write a book.  As frightening as that sounds, perhaps the best place to start is right here, on this blog.

All I know is we need to learn more about Duchenne Muscular Dystrophy – what it does to the young men’s bodies as it progresses, how it affects family and communities and what we can do to support each other and eradicate this monster.  There is so much research going on that it makes my head spin.  Perhaps if more of us learn about DMD and support research through the telethon, lockups, fill the boot and buying shamrocks, we can find a cure.

Rest in peace Jacob, Natoma, Mikey, John, Keith, Christian and all of the young men who have fought the battle to the finish.

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Christian and Mikey were pals at camp

Lessons from loss

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I would like to start today’s post by sharing a bible verse with you.  “Lord, help me to realize how brief my time on earth will be.  Help me to know that I am here for but a moment more.  We are like grass that is green in the morning but mowed down and withered before the evening shadows fall.  Teach us to number our days and recognize how few they are; help us to spend them as we should.” (Psalms 39:4; 90:5, 12 TLB)

When we lose someone we love, we are never the same.  Not too long after losing Christian, I would look out the window every morning and watch the sky change colors as the sun came up.  I still do.  At sunset, although my heart aches as daylight fades, I do the same thing.  I stand in my kitchen in the last light of the day and close my eyes, appreciating the warmth.  I am going to share with you something that Christian said to me the night before he passed away.  It felt like a knife going into my heart hearing it, but his words have changed me.  He said “Mom, I wish my pain would stop long enough so I could really look at and appreciate things.”  He said this as I was covering up his finch, Kiwi, for the night.  I think he wanted to look at him just a little bit longer.

During the years before Christian passed away, due to burnout mostly, I went through many days like a robot.  I would notice things but not REALLY notice.  I would see with my eyes but not with my heart.  Now, it’s like seeing everything through a new set of eyes.  I see the blueness of the sky and the red tints in the clouds and my heart stirs.  I hear a line in a song or a certain tune and I feel an inner stirring in my soul that I forgot was even there.

I read somewhere that we can take beauty for ashes.  We can take the soil, which is fertile with grief and watered with tears, and plant seeds which will slowly begin to grow into a beautiful flower.  This flower represents the beginning of spending life in a way that honors our loved one.  This may mean different things to different people such as appreciating the preciousness of each day, each moment or serving others.  This can also mean finding out who we are again and taking steps to rediscover our talents.  This may mean taking up a musical instrument we may have given up on years ago, picking up a drawing pencil again or going back to the gym.  For myself, I have drawn a couple of pictures and started working with my photos.  I have also cherished my reading time even more.  Christian and I shared a passion for books and I will keep on reading for him.

All I know is that life is too precious, too brief, to spend it being grouchy every Monday or to let our loved one go out the door without telling them we love them.  I look back on my life and see far too many moments that were taken for granted and I intend on living my life to its fullest, for Christian and for everyone I love.

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A Walk in the Park

Yesterday I decided to go on a walk for the first time in almost 2 years.  I used to walk often before my sons started needing more help with their care.  I read in several places that exercise is helpful when we are grieving.  I ignored the urge to go walk a few times since Christian passed away but I wasn’t able to ignore it this time.  I completed the book series we read together, the Mortal Instruments and Infernal Devices by Cassandra Clare (blog post on that coming later), so I no longer had an excuse.  I settled on Gibson Park.  At first I didn’t want to because that is the last place I went with Christian during his last week with us.

IMG_0999I couldn’t figure out why Christian kept asking me to stay by his side, but it all makes sense now.  As weak as his arms were he was still able to feed one of the geese.

IMG_0991At first, I looked around the park and everything looked exactly how I felt, hollow and sad.  The Chinook winds have been blowing for a few days so most of the snow has melted, revealing the trampled, soggy grass underneath.  My heart began to lift when I noticed some mallard ducks right along the walking path.  The geese were gathered around people who were feeding them.  As I rounded the second bend on my lap around the park I heard chickadees – “chick a dee dee dee dee”.  If you have ever heard them then you know exactly how cheery they sound and how uplifting it is to hear their call.  I started snapping shots on my iPhone.  Someone did a wonderful job carving this turtle out of a tree trunk.  I also noticed the lamps

IMG_0349that had been put up since I had last walked at Gibson Park.  I started to see beauty among the ashes of the winter storms we experienced over the last couple of months.

IMG_0353 A little ways further and a friendly squirrel ran up to me and started scampering around me in circles.  He looked at me like he was expecting a peanut.  I looked around and noticed the little fellas were running and playing all over the park.

IMG_0362As my walk came to a close and my car came into view, I started feeling lighter.  I knew that to do the things that bring me joy and peace are the things that honor Christian.  I plan on continuing my walks and I hope to encounter more critters that I can take photos of and share with you all!

Someone we would most like to have met

I haven’t posted in a few weeks.  Christian’s passing was just before the holiday season began and it was a lot to process.  I was happy to have my mother and sister here for Thanksgiving and it did help things to not be as overwhelmingly painful.  We shed more tears around Christmas but did find great comfort looking at the lights on the tree.  It was a different kind of Christmas all right.  It did help to go the the cemetery.  A friend of ours beat us to it and left a couple of gifts for Christian.

IMG_0306And my mother had a company in her town make a Darth Vader decoration for the grave.  Christian was very passionate about Star Wars and had a lot of empathy for Darth Vader (a post on that later).

IMG_0489Thanks to the comfort and strength of the Lord and the love and generosity of family and friends, we made it through our first holiday without our oldest son.

Around New Years, I picked up the paper and saw a headline called Montana heroes lost in 2014.  The article link is http://www.greatfallstribune.com/story/news/local/2014/12/30/montana-heroes-lost/21076535/ .  I decided to read through the article and thought in my mind that Christian was our hero in so many ways.  I was in disbelief when I saw Christian listed in the article!  I was touched, I cried,  posted it on social media and let my family know.

My husband did the best job ever in writing the obituary.  Christian cared for others, he loved others, he was kind, courageous and intelligent.  He also had a great sense of humor and had the best laugh.  His smile.  I could write about his smile alone.  It’s impossible not to smile when you see the light radiating from his face.

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There are so many people that changed the lives of those they were close to just by being themselves.  Christian was one of them.  He wasn’t able to fly a plane or publish a novel but he did many smaller things that meant just as much.  He made us laugh, he received an art award in 2010, he helped out his grandparents with groceries and he always bought us the best gifts.  He made an impact on so many people with his love, grace and humor.  If there was any way he could help, he would do so to the fullest of his physical ability.  Christian inspired everyone he came into contact with, even if it was just once a few years ago.  I miss him and hurt in a way I cannot put into words, but I feel tremendously grateful to have had him in my life.  He left me many of his traits and as I heal, I will honor him by continuing his love, kindness, humor, courage and grace.

My son

DSCN0086It has been well over a year since my last post.  So much has changed, especially of late.  On October 27, in the early hours of the morning, my oldest son, Christian, went to heaven.  My heart broke into a million pieces that day.

These past weeks have been a blur.  I have felt more pain and emotion than I ever thought possible, sometimes in the span of 5 minutes. I have also felt parts of my soul stir that I didn’t even know existed.  For the first few days, I couldn’t even think straight enough to pray or read scripture.  Thankfully I have been able to focus more and I have made sure to keep God’s Word close by.  I have relied on God more heavily than I have ever before and prayed more than ever.

They say that when we lose someone we love, we are never the same.  We have to adjust to a new normal.  I can honestly say I am not the same. I am broken, tired, confused, angry and lost.  On the other hand, I have felt love grow in my heart – love for Christian, God, my husband and my younger son, Andrew.  You see, Christian was more than a son.  He was my best friend (wow, I just cried for the first time in public).  He was also my rock, my inspiration.  He left me everything that was good about him – good and perfect.  He left me his courage, love, more love, his beautiful smile, his humor and his love of music.  I can hardly listen to a song without thinking of him.

The past year has been difficult but I am thankful for all of it – the constant caregiving, sore legs and feet from standing all day, the fear, aggravation.  It all made me a better person and taught me to enjoy the little, often overlooked things in life – a sparrow on the feeder, the full moon, a funny shaped cloud in the sky or sunlight on the wall.  Christian made me realize that I do not need material possessions to be happy and satisfied.  In Christian’s last year of his life, he only spent less than $100 on himself.  He enjoyed buying gifts for others and watching their expressions when they opened them.  Christian was in a lot of pain the last year and a half of his life and wasn’t able to go out of the house much.  As a result, he read books on his iPhone, played video games (Metroid and racing games were his favorites), listened to some good music and watched movies.  Tom Cruise was his favorite actor and he watched Live, Die, Repeat the weekend before he passed.  His love of NASCAR inspired me to love it too.  I so wanted his favorite driver, Jeff Gordon, to win the Chase but instead I bawled as he duked it out with my driver, Brad Keslowski.  What a mess.

I know that eventually, I will cross the stormy sea of grief and I will surely lean into the storm so I can keep moving ahead.  God will be with me every step of the way.  As I heal, I will be inspired by Christian.  He will always be with me until I see him again.  He is inspiring me to keep listening to music, especially vinyl, start drawing and painting and play the piano again.  He inspires me to continue taking care of myself and my husband and son.  He inspires me to help others and bless others, just as he did every single day of his life.  Not a person came away from Christian without being moved my his love, grace and smile.  I will love him for all time.  I will be posting on my blog more and I hope I will inspire you and move you.  I love you and thank you for reading and I hope a part of Christian will also be with you.