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.

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.

 

 

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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bestgamewallpapers.com

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!

 

 

 

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!

 

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.

Laundry

Laundry.  Something that never goes away.  Just when we think we are all caught up, in the blink of an eye it’s “five feet high and rising”.  Whether it’s something we do once a week or once a day, we usually do not look forward to it.

th-11During Christian’s last year his care took more time and so did the laundry.  It was something I had the hardest time keeping up with.  I had a system worked out but as caregiving demands grew, time to do laundry became scarce.  When I folded the boys’ clothes, I always had 6 pairs of pants, 6 shirts, etc.  The number of any item of the boys that I folded was always an even set number.  When Christian passed away last October, one of the hardest things for me to do, along with setting the table and setting out pills, was laundry.  The reasons, of course, were completely different.  For one thing, it was easier and took less time because there was less clothes.  What was once even and in sets of 6 became odd and in sets of 3.  This made me feel guilty.  For another, I missed folding his clothes:  His Jeff Gordon t-shirt which he wore every race day, his Call of Duty shirt which I always liked the feel of and I thought looked great on him and all of his Star Wars shirts.  Christian’s Star Wars shirts defined what he was most passionate about, which defined him.

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We set Christian’s Jeff Gordon t-shirt out for the Daytona 500
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Most of his t-shirts were Star Wars themed

Today when I folded the darks, I had 3 shirts and 3 pairs of pants.  I began to feel sad but felt a little better when I looked up at Christian’s Samus (from Super Metroid) poster that I hung up above the folding table.  I realized that I was thankful that I still had Drew’s and Dave’s clothes to launder and as long as I am washing them and folding them, it means they are still in my life.  Maybe laundry wouldn’t be such a chore if we viewed it as an act of love.

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My favorite shirt which I will keep forever