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.

kids-in-jovas-room
The boys’ favorite Thanksgivings were spent with their cousins.
img_1044
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.

img_1605

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.

1000 Miracles

Two years ago today, we laid our son to rest.  We witnessed the love and support of many – our loving family, friends we hadn’t seen in years, and friends who traveled over mountain passes to say goodbye to our boy.  A bouquet of flowers sits on my kitchen table – an array of orange roses along with white, orange and purple flowers I cannot name.  When I awoke and walked into the dining room, the scent of the flowers made a picture of Christian’s room filled with flowers after the funeral flash into my mind.  I felt the hollowness and the ache of my boy being away from this earth.

theonething

I took on a challenge of sorts and decided to begin this last Thursday – the day our boy passed away.  I am writing down at least 10 things a day that I am thankful for along with reading and reflecting on a devotional by Ann Voskamp called One Thousand Gifts.  After 3 days, I have learned more than I have in months, maybe even years.

I learned why my mind darkened and my heart closed to God’s grace.

My husband and I went through some old photographs – pictures of my sons when they could walk and stand.  Swimming, vacations to Disneyworld and Las Vegas, horseback riding and spending time doing so many fun, simple things in Lewistown with my parents, sisters, brother-in-law and cousins.  Those were the days when my heart was full of light.  I felt, witnessed and lived God’s grace.

As the boys lost the ability to walk, brush their teeth or even feed themselves, my heart slowing darkened.  When I needed God’s grace the most I closed myself off from it.  I didn’t realize at the time why it became harder for me to notice the miracles I always noticed before Christian’s health really started to decline.

Yesterday, I read these verses:

“For that which is known about God is evident to them and made plain to their inner consciousness…For ever since the creation of the world His invisible nature and attributes, that is, His eternal power and divinity, have been made intelligible and clearly discernible in and through the things that have been made.  So men are without excuse…they did not honor and glorify Him as God or give Him thanks…and their senseless minds were darkened.” -Romans 1:19-21

My heart began to hollow out when I stopped expressing my thankfulness to God for His gifts big and small.  He gave us so much to praise Him for and continues to each and every day.  When we notice and confess the goodness He so readily gives to us, our eyes open to His divinity which surrounds us all of the time.  I know now why I began to see an extra layer to life after Christian passed away.  I began to notice things that made my heart want to burst – colors in the sky I hadn’t noticed before, sunlight on a sparrow’s face as he enjoyed seeds from my feeder, the sounds of the wind blowing autumn leaves still attached to a cottonwood.

I went on a walk yesterday and noticed things I had not noticed weeks ago.  I am sure I looked funny because I stared in amazement at the Missouri River and the way the moving lines in the water reminded me of an orchestra, the golden leaves gently fluttering on the trees, and dogs with happy faces running in the dog park.

The more thankful I become, the more I see, feel and live God’s grace.

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.

1598669_4759157473157_2777026773840137019_o

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.

 

 

img_0268
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.

The Resilience of the Spider

img_1819

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.  

img_0999

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

Light at the end of the Tunnel

img_1775

I went for a walk this morning on the River’s Edge Trail, which runs along the bank of the Missouri River.  The leaves were glowing a brilliant yellow and several birds flew ahead of me along the way – a magpie, a robin and a chickadee.  The way the sun hit the trees on top of the hill and how it caused the foilage at the side of the trail to glow took my breath away.  I am almost overwhelmed at times with the beauty of God’s creation.  Since losing my son in 2014, I see things with different eyes.  I went on a walk with a friend who also lost a son, and we agreed that it’s almost like layers have been peeled away and everything we see is blindingly beautiful compared to how we saw it before.

img_1769

There have been many days over the last year, however, when I have been engulfed in darkness.  I have experienced the dark night of the soul and experienced pain so intense that I just couldn’t stand being me.  During the first year after losing Christian, I did what one of my grief books recommended, which was to lean into the grief.  This meant that I cried the tears I needed to cry and felt what I needed to feel.  I leaned on God constantly, read His word more than once a day for a while, and prayed often.  He has done a great healing in me that I will never forget.

The darkness set in during the second year.  Taking care of my youngest son, Andrew, although difficult to do while processing the tragedy of losing Christian, gave me purpose and something to focus on.  I still felt important and needed.  When I returned to work after over 10 years, everything I had ever believed about myself was dramatically changed. All of a sudden my husband was taking care of Drew, cooking meals and cleaning the house – things I have done since we married in 1992.  Suddenly I had no idea who I was.

Rather than turning to God in prayer and to His Word and reaching out to supportive friends, I turned inward and started defining myself by how the world viewed me and by what I did each day.  I felt unimportant and lost.  I stopped blogging because of the fear of what people would think if they knew I was in so much pain.  I didn’t want to be a downer by writing about the darkness and sadness.

The truth is that without darkness, we are unable to learn what needs to be brought into the light and healed.  The pain and difficulty we endure becomes life experience, and although we would rather aviod it, we can use it to help others.  Sharing my broken heart can actually help someone else who is going through their own personal tragedy.

As much as I want to be done grieving, I am not.  As Marianne Williamson states in Tears to Triumph, “it (grief) is a process – not an event- best served when we surrender to it fully.  Grief allows us to process incrementally what might be too shocking to the system to have to process all at once.”  Tears are nothing to be ashamed of, especially when they are for someone we cherished and loved so much who is not longer with us.  They wash away layers from the heart and help us to see everything with new eyes.  As I continue to cross this vast sea of grief, I will share the lessons learned and the things that God wants to show me in hopes that I can help others know that no matter how deep the sadness, there is a light at the end of the tunnel.

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.

God’s grace for the Race

IMG_1735

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.

IMG_1719

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.

IMG_1723

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.

 

IMG_1731IMG_1732IMG_1733IMG_1734

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.

IMG_1718