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.

Summer Camp at Seeley Lake
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.

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.

 

 

Burned toast

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I am one of those people who cannot drive or walk while doing something else.  Like a dummy, I was walking down my basement stairs and looking at a calendar.  Next thing I knew, my feet slipped and I fell down a couple stairs and landed on the bottom.  I hurt a little so I took some ibuprofen and went to bed.  Everything was fine until a couple days later.  Searing pain up and down my left leg, swelling and twitching all over my leg.  This was almost a couple weeks ago and I am still in pain. Most of it is from the MD but just as equally to blame is my lack of self care.

This has been a real eye opener for me.  Honestly, it scared me into wondering how long I can continue taking care of the boys.  I want to last, I really do, and I most certainly will not at this pace.  It’s only a matter of time.

What to do.  What to do.  I am pretty sure the house will not be condemned if it is not spotless and we will always have clothes to wear if I get behind in the wash.

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Fear is what keeps me from letting things go and taking care of myself first – making sure I take time each day to work towards my goals and dreams.  We must have faith that so long as we do our very best, God will handle the rest.  Truth is, I am of no use to God or my loved ones if I am toast.

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In order to love others, we must be filled with God’s love.  In order to properly care for those we love, we must first take care of ourselves.  I must do it for God, myself, my loved ones and the world.  How much more beautiful would our world be if we would stop running ourselves ragged, pumped by our anxieties and fears?  Very beautiful indeed!

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Just keep swimming!

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I am having one of those days when my body does not want to cooperate with my mind.  Sometimes, despite my best efforts in my diet, I still experience inflammation.  Unfortunately, this does not mean that I can stop moving.  On days like today, I need to motivate myself and Dory from Finding Nemo is always there for me.  Remember when Dory and Marlin were descending into that deep pit in the ocean?  She started to sing “just keep swimming, just keep swimming”.  I used to keep a little plastic toy of Dory close by so I could be reminded to just keep swimming!  I also often have to remind myself that it is all right if I am slow because at least I am moving forward.

Maybe more of us need to be like Dory.  She was curious, joyful and full of life.  I find myself to be like Marlin, fearful of trying new things, a little uptight and sometimes needing someone like her to hold my hand as I swim down into the unknown.

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If I need a good laugh, I can listen to her try to communicate with whales.

thI think that many of us can identify with at least one character in a Pixar movie or any movie and sometimes that can motivate us to keep on trudging towards victory no matter how we may feel!  Is there a cartoon/Pixar/movie character that you can identify with?

A lesson in poetry

The road less traveled

The road less traveled

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveller, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference

…Robert Frost

I was never very good at interpreting poetry in school but “The road less traveled” is one that I have been able to relate to a good portion of my life.  One that many of us have.  We face choices every single day and most of the time, not having the slightest idea what the outcome will be.  We try to see into the future as far as we can, thinking of every single way a situation can turn out.  We rely on our gut instinct, or pray about it, hoping it will all turn out okay.

I am often in this situation each day in dealing with the boys’ MD.  Whether the decision is big, such as whether a surgery will be worth the risk; or small, such as what to give the boys for dinner, we stand at the edge of the wood like Robert Frost did.  We have made good decisions, such as keeping the boys on a wholesome, mostly vegetarian diet to reduce inflammation; and we have made bad decisions, such as staying in a hotel room with unaccessible features that ended up causing prolonged back pain for Christian.  With every choice we all do our best and that is all that matters.  I firmly believe, and have experienced, that God helps us out of difficult situations that were the result of a bad choice because He knows that our choices are made out of love.  I also firmly believe that every choice we have made, good and bad, has brought the boys to where they are today – happy, healthy and full of vigor for life!

The path we are on is also the less traveled one.  We have made many choices that we knew would require more work but did it anyway because we wanted to do what was best for the boys.  I read a saying that basically said that when we make the hard decisions today, it will make for a better tomorrow.  This has been true in our case.  We opted for the boys to have spinal fusion to correct their scoliosis and as a result, they sit up better in their chairs and their lungs can fully expand.

Drew before his spinal fusion surgery at Shriners
Drew before his spinal fusion surgery at Shriners
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After spinal fusion

We will continue to face big and small decisions and an unknown future.  This can create a lot of fear and a good amount of uncertainty, but if we do the best we can with what we have today, it will all turn out just fine.  All I have to do is see one of the boys’ beautiful smiles to know this.