Tag: duchenne muscular dystrophy

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

Take the deep end

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Remember when you first learned how to swim?  Most of us walked into the shallow end and gradually made our way into deeper waters.  This works just fine when we are learning how to swim but I have found in life that taking the deeper end is better.  One of my favorite bands, Two Door Cinema Club, has a song called Beacon.  A line from that song resonated with me and it has stuck ever since I first heard it:

Take the deep end, swim till you can’t stand

cuz it will make a difference in the end.

After finding out that my two sons have Duchenne Muscular Dystrophy, I made a decision to help them grow up as normal as possible.  I kept them in school until 10th and 11th grade and they went to regular class.  Unfortunately, I had to withdraw them from school for health reasons and help them earn their G.E.D.s.  They participated in field trips, had friends over to play, went swimming and even rode horses.  They did homework, played clarinets in band and were like any other teenager despite their physical limitations.  It may have been easier to throw my hands into the air and put them into special education, but I knew that would not be the best in the long run.

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I still run into situations almost everyday when I have to remind myself to take the deep end.  There are many evenings when I do not feel like cooking but I know that giving them convenient junk will only accelerate their disease.  I was not the “cool” mom who let her kids drink soda and eat tons of sugar.  I knew early on that it would only make their futures worse.  Yesterday morning, I did not want to clean my house.  I did it anyway because doing just one thing can make the world a better place – whether it’s something big like helping a disabled child through school or something small like picking an object off of the floor for someone.  I was floored when my youngest son, Andrew, told me that he would drop a pencil onto the floor only for another kid to just look at it and walk away.  We need to teach each other to help and to care.  We need to take the deep end because it will make a difference in the end.

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