A Necessary Truth


There are mornings when I am doing my regular Bible study when I come across something so profound that I will always remember it.  I read a quote by Bronnie Ware from her book The Top Five Regrets of the Dying:  “I wish I’d had the courage to live a life true to myself, not the life others expected of me.”

Ware worked as a palliative caregiver.  Palliative care involves the care and support of a patient faced with a life threatening or terminal illess.  It also involves improving the quality of life for the patient as well as the patient’s family and friends.  I had no idea such a word even existed until after my son passed away.  I knew what hospice was but in my son’s final year of life we had no support and no one to even tell us what support was available to us.  It was a fearful, traumatic time in our life and has led me on a mission.  I have started to write a book about my experiences with raising two sons with Duchenne Muscular Dystrophy and losing my oldest son, Christian, to the disease.  No one should have to deal with end of life issues on their own.  So many physicians are in the dark about Duchenne Muscular Dystrophy and it is not uncommon for them to feel discomfort about discussing end of life issues.

A physician came to the house to examine Christian about a year before he passed away.  He had nothing to say to me and later I received a copy of his notes from the visit – notes that did not even make sense.  The closest thing ever said to us during Christian’s life that even came close to the reality of his prognosis was “you need to talk to the nurse about signing a living will.”

Christian’s passing came swiftly and without much warning.  We were alone and had no idea he would be leaving us that dark Monday morning.  Looking back over 2 years later, it hurts, but I know that harboring bitterness and resentment towards the medical community will not bring him back or ease my pain.  I can only use this experience as a driving force to inform others that they do not have to face the eventual passing of a loved one alone and without the truth.

After reading Bronnie Ware’s blog post I realized that I am not waiting until it is too late to reach for my dreams and set goals consistent with my values.  It is never too late to use my pain to ease the pain of others. That, ultimately, is my goal: to prevent others from having to go through the avoidable hardships that I’ve suffered.

 

The Small Things

When I was a youngster, Thanksgiving meant Ritz crackers and cheese, mince meat and pumpkin pie made from scratch by my grandma, cranberry sauce, yams, turkey, rolls, olives and movie marathons.  I always looked forward to my grandpa stopping by to drop off the pies and chatting with my mom over a cup of coffee.  We never had any large family get togethers but it always included mom, dad, myself and my two younger sisters.

Over the years, as my nieces and nephews have grown and my sisters have moved away, we have had a few big gatherings.  We would have a houseful – people sleeping in the spare bedroom, on the couch, air mattress and the floor.  These were Christian’s favorite Thanksgivings.

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The boys’ favorite Thanksgivings were spent with their cousins.
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Not even a month after he lost his older brother, Drew found comfort in spending time with his cousins during Thanksgiving.

For the last 2 years, the three of us have had a quiet meal while the fourth chair remains empty.  We will visit the cemetery tomorrow morning and do our best to enjoy another Thanksgiving without our boy.  Christian always loved and appreciated his Thanksgiving meal.  He also remained thankful for the smallest of things until his last breath.

Every time I see something beautiful, I wonder if Christian is showing me what he always appreciated while he was on this earth.

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I am thankful each and every day that I was able to take care of Christian for 21 years.  I am thankful for the conversations we had while I cared for him, the things he did to make me smile and for the strength I had to care for my boys with little to no help.  I am thankful for everything Christian taught me and for the things I continue to learn as I care for Andrew.  When you care for someone who cannot leave the house because of their failing health, you learn just what we should truly be thankful for – a dove on the sidewalk, the warmth of a blanket fresh out of the dryer, a short visit from a dear friend, music, hugs, a birdsong, the smell of fresh coffee, a clean house or hearing the sound of the warm air flowing through the vents on a chilly winter night.  The more I become thankful for, the more reasons I find to praise God.  Praising God for the small miracles opens our hearts to the bigger gifts.  Our lives become filled with peace and unexplainable joy as we carry Thankgiving into our everyday lives.

The Resilience of the Spider

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Like a lot of people, I am afraid of spiders.  A tiny spider skittered across my desk only to be crushed by my workpapers as soon as I noticed him out of the corner of my eye.  Every morning when I get into my work car a beautiful, complex spider web stretches from the driver’s side mirror to the door.  Using my key, I slice it right through the middle out of fear of the fella being blown into the vehicle by the wind and landing in my hair.  Despite my efforts to destroy the spider web every morning, I return to find another web built in the same place.

My son knew what he would face each and every day over the last year and a half of his life – routine and pain.  He knew he would have to deal with pain most of the day but he still didn’t complain or become angry.  I rarely remember Christian feeling sorry for himself.  He continued to read until his arm became too tired to hold up his iPhone and he made the best choices he could for his health until the end.  

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Imagine going through all of the effort to create something so complex and beautiful, only to have it destroyed 24 hours later.  Once I really started to think about what this spider was doing, I couldn’t help but wonder what would happen in my own life if I had the same resilience and determination as this little eight legged critter.  Most of the world’s greatest inventions were created out of failures – the telephone, the boardgame Monopoly and cures to diseases.  What about people who have to endure several rounds of chemotherapy, knowing after each one what they have to face and that it can make them feel worse each time?

What are your dreams and goals?  Are there ways you can prepare for these dreams by doing a little each day?  I hope to write a book one day that will hopefully inspire people, especially those living with the daily challenges and heartbreak of Duchenne Muscular Dystrophy.  Sharing my thoughts and my heart with readers on my blog is one way I am preparing for my dream.  I have wanted to give up more than once – doubt, fear, a tight schedule, or when I just can’t seem to get my sentences straight.   Two things keep me going – hope and love.  I have hope because I know that God helps us become all we can be in life, especially when we can help other people.  I also know that anything that is done with love in our hearts will ultimately succeed, no matter how many attempts it takes.  Love is all that matters and is contained in all things, even the spiders.

*note – I had a little trouble with the caption above but am posting regardless.  I apologize if it looks odd.  We keep on keeping on right?  xoxo

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.

God’s grace for the Race

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Yesterday, I completed my first Island Challenge.  The event took place in Lewistown at the Half Moon Ranch and it featured different events – a half-marathon, overnight bike ride and 8K/11K hikes.  I signed up for the 11K hike.  I am a natural introvert so engaging on such an adventure solo stirred up feelings of fear and doubt.  I had thoughts of backing out more than once.

I woke up early and made the hour-long drive so I could have plenty of time to check in.  I was not disappointed by the beauty of the ranch.  There were cows greeting passing cars on the dirt road leading to the ranch and the rising sun brought everything to life.  I arrived at the pavilion to the smell of bacon and pancakes.  I checked in, pinned on my number along with the memorial pin of my son.  The ranch is surrounded by mountains and wildlife so I enjoyed the views while I waited for the hike to begin.

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When it was time to gather around the starting line I made sure to listen to the directions, especially pertaining to the split between the two hikes.  The horn went off and I began my  journey.  We started on a hill and I slowly ended up in the back.  I told myself that all I want to do is finish, even if I am last.  I was looking forward to the solitude of being in the back.

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We went uphill for over a mile and my heart was racing.  My legs started to burn in places they usually don’t and the terrain became very rugged.  I had to watch where I was stepping so I wouldn’t fall or roll my ankle.  As we started to spread out more, I could hear the wind blowing through the tops of the pines.  Everything around me was beautiful and so full of life and color, even the rocks and foliage along the side of the road.  I made it to the first water station and was happy they had kleenex and fresh fruit.  The oatmeal I ate for breakfast wore off before I even started the hike.  We had a brief respite from walking uphill but another hill waited after the rest station.  I attacked it with vigor and pumped my arms to give me a boost.  Tendons I didn’t know existed were sore and I  began to feel the weakness caused by the muscular dystrophy.  I wasn’t about to let it stop me.

 

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I thought of Christian and how he and his brother were never able to hike because their bodies became too weak once they were old enough.  I thought of my mother and the pain she has endured from her legs giving out.  I also thought of a co-worker who is battling cancer.  I felt that second wind come along and I kept it up.  I walked alone for a good part of the hike except for the marathon runners that passed occasionally.  I came up on the 6K sign and realized I was over half way through.  The second water station came a short time later and they said I had one mile left.  I thought the nice man didn’t know what he was talking about.  How could I only have one mile left?  I pressed on further and approached a downhill slope that made me hesitate.  I pictured myself trying to run down it and tumbling down for eternity like Chris Farley in one of his movies.  I eased my way down and felt my quads burn like fire.  When I was closer to the bottom, I let gravity help me and ran a short way.  I slowed, went through a gate and I could hear cheering.  I thought that was odd because I still had a way to go.  The pavilion came into view and I knew something was off.  I felt like I had accomplished something great, but 11k in a little under 2 hours?  I crossed the finish line with a smile and a feeling of completion.  It didn’t dawn on me that I went the wrong way until I noticed hikers with the 11K blue race bibs on cross the line that were in front of me earlier.

I have to admit that I felt disappointed because I signed up for the longer hike.  I beat myself up a bit for making a mistake and missing that turn.  I was very tired and sore after completing the shorter hike so I thought that maybe it was for the best.  Next year I can try the longer hike.

I opened my devotional this afternoon and read about the grace of God.  Grace is the evidence of his love for us which is freely given.  It comes to us as talents, through other people or in ways totally unexpected and most needed whether we realize it or not.  God wants for us what is best and sometimes it seems unfair.  Although my hike ended up being 3K shorter than planned, perhaps He knew that I started off too big.  My legs ached like they haven’t in years and I really cannot imagine how they would feel had I completed the longer hike.

I cannot change the fact that my legs are not as strong as I would like but God has given me the ability to keep walking and hiking, just not marathon distances.  He has blessed me with a loving husband and a son who despite his prognosis, continues to do everything he can with what he has.  He also blessed me with a son who kept fighting until his last breath.

Christian was with me on my hike walking beside me and he knows I gave it my all.  For everything he lost and everything Andrew continues to fight for I will not give up, even if it means taking a path I didn’t expect to take.

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The rose or the thorns?

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We celebrated Drew’s 21st birthday at the Allegra in the Wynn.  Chris Myers was eating dinner there and he wished Drew a happy birthday!

Yesterday, Drew had his 6 month checkup with the heart and lung doctors.  Drew has Duchenne Muscular Dystrophy, a life-threatening form of MD that attacks muscles all over the body, including vital muscles like the heart and muscles that help us breathe.  When we took Drew to see the doctors about 7 months ago, his numbers went down, so naturally we were nervous and afraid.  To our surprise, the doctor came in the room, smiled, and asked me what I am giving Drew because his heart strength went up significantly.  It was a blessing and a relief.

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When the boys were young, they participated in Eaglemount, therapeutic recreation for disabled kids & adults.  Christian wasn’t afraid of the horses.

Not too long after receiving the good news, I kept wanting to ask about Christian.  Why did he have to suffer so much?  Why was his heart so much weaker?  WHAT DID I DO WRONG?  WEREN’T YOU PAYING ATTENTION?   Most of the time, as I have been reluctant to accept, we will never fully understand or even know exactly what happened until we see our loved ones again in heaven.  I believe we will experience so much peace and joy in God’s presence that it will not matter.  Even when things go well and life gives me roses, I still want to hold onto the thorns.  What will happen if I stop being so sad?  Will I forget his voice, his smile or his strong spirit?

Part of healing is being thankful for each day and living each day as I know Christian would want me to live.  I have had my pity parties and it’s normal when we are grieving, but after a while they actually do more harm than good.  Complaining and being negative keep us from being all God created us to be and all Christian would want me to be.  There were so many things Christian was not able to do and he accepted it most of the time.  So many things that are mundane or even grievous to the rest of us were all Christian ever wanted.  He wanted to work, run track and do the same classwork as the rest of the students.  He wrote letters until he could not tolerate sitting up at his computer anymore.  He tried reading the bible from front to back until his pain started and he had to spend most of the day tilted back in his chair.  He did everything he could until his last breath that chilly October morning, which feels like it was yesterday and like it was ages ago at the same time.

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I will focus on the roses in life and not hold onto the thorns.  I will honor my son’s life by thanking God for the new day when my alarm goes off.  I will be thankful that I can work and that I have my health.  I will be thankful for clouds as well as sunshine, Mondays as well as Fridays, unpleasant people and sweet people, sour and sweet.  I will live.

 

 

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.