Remembering God’s Grace

Fall had always been my favorite season.  The beauty of the changing leaves and the flight of the starlings amazed me.  Since losing my son however, the arrival of Fall has brought with it a sense of dread.  Now, seeing the flowers wilt and the branches become bare make my heart ache.  This Thursday will be 2 years since we lost Christian.  As the yellow and orange leaves scattered my front lawn, I remembered going outside to take his photo on his last birthday.

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When they came to pick up the signs we rented for Christian’s birthday, I felt an ache in my heart and I didn’t know why.  The fact that we would lose him 15 days later was the furthest thing from my mind.

As the 27th approaches, I want to remember God’s grace.  I want to remember the kind things people did and said after Christian passed away.  Sure, the pain will be there but God’s grace can be in my heart too.  We literally had a roomful of flowers and a stack of sympathy cards – some from people I had never met such as a woman in Lewistown who gave us $100.  I remember my friends, Tracy and Amanda, coming over to the house and offering to help with the food after the services.  A woman from Kalispell who lost her son to the same disease just weeks prior drew me a picture of Christian.  My dad drew a picture and my mother helped as much as she could.  Another woman who lost her son to Duchenne MD flew in from Columbia Falls to attend the services.  Sara from Infinity Lofts set up a dove release for us at the graveside and let my son Andrew hold and release the first dove.  My good friend Michelle drove up from Lewistown and brought me something vegan to eat.  Our friends Mike and Monica brought us our groceries for a couple of months until I was ready to go to the store myself.  We received care packages from friends in Wyoming and Hawaii as well as family in Montana.

 

 

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We went back up to the cemetery a few days later to release more doves.  Drew was able to hold and release Sirius again.

The pain was unimaginable but God’s grace kept us from completely breaking.  Remembering the love and kindness of others makes the pain a little more bearable and gives me comfort even today.

Fight for a Cure

Today is World Duchenne Muscular Dystrophy Day.  This is the first year I have heard of a day being devoted to DMD and perhaps it has to do with the Jerry Lewis Telethon no longer being aired.

Most people do not know what Duchenne Muscular Dystrophy is.  Many people have mistaken it for Multiple Sclerosis, which is also a neuromuscular disease but is not the same.  DMD is a genetic disease when muscules are missing a protein called dystrophin.  Without this protein, muscles cannot fully develop and they eventually start to deteriorate.  Unlike other types of MD, Duchennes attacks muscules all over the body, not just the legs.  The arms become weak, along with shoulder, abdominal and back muscles.  Being the monster that this disease is, it also goes for vital organs, such as the heart and weakens muscules that help us to breathe, such as the diaphragm.  Many boys succomb to the disease from pneumonia or heart failure.  As back muscles weaken, scoliosis sets in, making surgery necessary.  Without spinal fusion, which is very risky and involves a titanium rod being put into the back so it can be kept straight, the spine continues to compress which makes it difficult to breathe and puts stress on the heart.  Many of the boys have to use ventillators to aide in breathing earlier on without the spinal fusion.

Muscles that we take for granted to aide us in our balance so we can sit up straight deteriorate making it impossible to sit on a chair without support.  Without the ability to stand, many families use special lift systems to help transfer their kids from bed to chair and even to use the bathroom.

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Making friends at camp

 

Duchenne MD takes on its full form in males.  My mother has a more aggressive mutation of DMD and she has lost a lot of muscle in her legs and arms.  She has fallen and injured herself and we are looking at making modifications to her home in the future to insure her health and safety.  I have symptoms but they are not as severe as my mothers and I hope I can keep them at bay by being proactive with a plant based diet and plenty of walking.  We recently found out that my youngest sister has the disease and it was passed on to my 10 month old nephew.

Me, my sister Sonja who is also a carrier and Damian who has been recently diagnosed with DMD

 

Duchenne MD, along with many other neuromuscular diseases, takes a tremendous emotional and financial toll on families.  The spinal fusion surgery is a six figure procedure and a power wheelchair can cost well over $15,000.00.  This doesn’t account for lost wages because unless a good caregiver is available, one parent has to stay home to care for their son.  There are also regular visits to the cardiologist and pulmonoligist along with physical therapy.

Drew preparing for a breathing test

 

We lost our oldest son, Christian, in 2014 to this disease.  His heart became too weak and he had a great deal of trouble breathing.  My other son, Andrew, continues to deal with the ongoing weakness and complications related to DMD.  He has days when he is in a great deal of pain and most boys cannot take large amounts of painkillers because of the side effects.

Christian had to spend a great deal of his last year tilted to control his pain.

 

The Jerry Lewis MDA telethon has raised millions to aide in research so we can find a cure to this disease, along with other neuromuscular diseases.  It was heartbreaking to hear about the end of the telethon.  We now have to think outside of the box for ways to raise more awareness and to continue to fight for a cure.  There are several different methods being studied with some actually showing improvement for some of our boys.  It still has a way to go but we must not lose hope.  I, along with many other mothers and fathers that have to live with this disease every single day, do not want this day to be lost among the other fun, national holidays – National Hug Your Cat Day or National Pizza Day.  Please donate to your local MDA events, such as Fill the Boot and the MDA lockups to support statewide summer camps and MDA Clinics.  The clinics are very important, especially for people who live in such a spread out state like Montana.

We have had to watch the boys lose friends from MDA camp and in turn fear for their own future.  I have created a Facebook group so us moms can support each other during difficult times and give each other ideas as the disease progresses.  With enough awareness and scientific research we can beat this disease and give our boys hope.

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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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.

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!

 

 

 

Feed the Birds

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The state bird of Montana is the Western Meadowlark

When we moved into our first home in 2001, our realtor bought us a bird feeder.  I had never fed wild birds before but soon after, I found a perfect spot to hang it right outside of our dining room window.  At first a few sparrows would show up, but if they saw any movement at all on the other side of the window they would dart away.  I was told that they just needed to get used to us.  The sparrows would take a few days to empty the feeder and I slowly became consistent in making sure the feeder was filled.

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In sub zero temperatures I would sometimes feed them twice a day.

It didn’t take long for all of the birds in the vicinity to find out where the grub was located.  I started to fill the feeder daily and there were times in the winter when they would empty the feeder in about an hour!  Over the years our checklist of sighted birds has grown.  The number of finches and doves has grown each year.  An american goldfinch passes through and so do red winged blackbirds.  We really enjoy the babies in the spring.

Feeding the birds is costly, especially when they gobble it up, and it can also be messy and a hassle.  The benefits outweigh the work.  My two sons were disabled and over the years it became more difficult to leave the house.  We learned to find pleasure in the simple things – watching the birds.  We have seen the finch population increase with each passing year and have also seen more doves.  Chickadees frequent our feeder as well and they are the friendliest.

The summer before my oldest son, Christian, passed away, we had an abundance of birds.  He loved grackles and we had an abundance of them feasting and causing mayhem in the backyard.  The mourning dove population exploded with most of them perching on the power line in the alley.  We also have Eurasian collared doves.  Most of the time less than 10 will be here enjoying the safflower seed off of the sidewalk.  In the later part of summer, I looked out back and to my astonishment, there were 20 of them back there!

We had almost daily visits from this hawk last winter.
We had almost daily visits from this hawk last winter.

The winter after my son passed away was the darkest, coldest winter we had ever experienced.  The sparrows and finches gave us comfort when they were brave enough to visit the feeder and risk being snatched up by the hawk that lurked in my yard.  Today they cannot eat the food fast enough because the babies are very demanding.  It is such a joy to watch the parent finches watch over and feed their babies at my feeders.  My son Andrew and I believe that Christian is sending us birds to comfort us and to let us know that he is okay.  Over the last couple of days, we have had 2 doves perch on the lift right outside the dining room window and stare at us.

A male house finch at liftoff.
A male house finch at liftoff.

If you have a disabled parent or family member who is unable to leave the home frequently, a bird feeder is an excellent idea.  It is an easy, joyful form of entertainment and is something we will always enjoy and find comfort in.

What went right?

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Do you ever have one of those days when everything is wrong?  You spill your coffee on your favorite shirt, burn your toast and just about back into a car on the way out of the driveway.  I had one of those days.  I had all sorts of ideas and ambitions flying though my mind like fireworks, but anytime I tried to act on them I froze.  I want my grief to subside.  Now.  But what would the purpose be if it did?  As painful and uncomfortable as grief can be, it is changing me for the better.  I know God has good plans in store for me and He will help me to continue the love, kindness and courage that Christian emulated during his 21 years on this earth.  I do have to heal first and as they say, time is the great healer.

Instead of focusing on everything that went wrong, which including feeling and acting like Oscar the Grouch, starting a blog post earlier today that just didn’t flow at all. not being able to stay awake for even 3 pages of a novel, I will close this day focusing on what went right.

The sun came up…

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Many birds came to my feeders even though I didn’t go outside to fill them…

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I was able to prepare a delicious, healthy meal for my family…

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My son, despite his pain today, smiled…

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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.

Skyscraper

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Last August, my younger sister, Sherry, called me in a flurry of excitement.  Interpol was going to be playing in Denver September 27 at the Ogden Theatre!  I could hardly believe it and I also didn’t see how I could possibly pull this off.  With the boys’ needs I was lucky to go to the grocery store or run errands.  I had to fly.  This was a sticking point with me because I am not fond of flying and it would be for only one night.  I decided that I was not going.  My oldest son, Christian, kept encouraging me but I wouldn’t budge, especially since I would have to take Dramamine.  If you have taken it you are probably familiar with the drowsiness that accompanies the relief.  I kept going back and forth until Christian told me that if it was his favorite band he would go.  It breaks my heart that he never went to a concert.  We live in an area of the nation that does not get much action where music is concerned.  He enjoyed listening to Wiz Khalifa, Nas and his favorite musician was Kid Cudi.  After he said that I booked the tickets.

I was nervous and excited as I waited to board the plane.  I even had the song picked out that I would listen to as we took off – “Anywhere” off of the El Pintor album.  We landed safely less than 3 hours later and my sister and brother-in-law picked me up.  Before I knew it, we were in line.  They had a promotion for people who owned a Samsung phone and luckily, my sister had one.  We were able to go to the front of the line!  It was awesome!

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You see that Interpol poster behind us?  My sister, the ultimate haggler, talked one of the employees into letting us have two of them!  It was all meant to be!

The opening act, Rey Pila, was awesome.  They are out of New Mexico and they rocked.  The bass in the Ogden is so strong that it literally jars your insides.  I was so pumped to see my favorite band!  When Sam Fogarino, Daniel Kessler and Paul Banks took to the stage I was beside myself!  They sounded exactly how I imagined – AWESOME!  They played a lot of their new music along with my favorites off of their older albums.  Paul Banks sounded incredible, Sam had so much energy on the drums and Daniel Kessler rocked the house on his guitar!

IMG_0129My sister and I had the best time at the concert and we also visited the record store next door.  We had a ball. She found a vintage Pink Panther record and I found some flawless Dean Martin records among others.

IMG_0217The flight home was wonderful.  I listened to my El Pintor album and looked out the window the whole way.  The view was outstanding.

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I would have never gone to the concert if it wasn’t for my son.  He lost so much over his last years of life as he dealt with more pain.  I knew that I needed to overcome my fear of flying and just do it.  I had no idea, however, that Christian would pass away exactly a month later on October 27.  Now, whenever I have memories of the concert, I will remember that I did it for him.

The night before Christian passed, he asked me about one of my albums by Paul Banks, Skyscraper.  It was the last music Christian ever talked about with me and he loved so much different music.  When we had to plan his funeral, I included the Madrid Song and On the Esplanade off of the Skyscraper album.  Both songs are beautiful and I understand why Christian mentioned the album.  I made a slideshow and used these two songs and it was absolutely beautiful.

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Music is such a large part of our daily lives and it was everything to Christian.  We had to stay home a lot and it helped to brighten many days.  I am thankful to have come across such a wonderful band.  Thank you Paul, Daniel and Sam for expressing yourselves in your music and enriching our lives.