Grief, Interrupted

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The year after Christian passed away was extremely painful, but thanks to the strength and comfort of God, we made it through a day at a time.  Dave’s job became extremely demanding in the following month after we lost our boy.  He went with the flow for the next several months but by summer, working 14 hour days was not enough for the company, so he had to leave.  The following September, Dave suggested I call the company that I worked at before leaving in 2005 to care for the boys’ increasing needs.  I called them, dropped off my resume, and everything fell into place.  I was terrified because I had been out of the work force for so long but I was also thrilled and very thankful for the opportunity to work for my family again.

About a week into my return to work came the first anniversary of Christian’s passing.  Dave suggested that I go to work because the distraction might be good for me.  I lasted about five minutes.  Over the first few months I experienced a lot of nervousness each morning before I left for work and I started to experience slight anxiety when I performed certain job duties.  I thought nothing of it because all jobs come with stress and anxiety.  By summer, my anxiety increased and depression started to weigh me down.  I started becoming emotional about things that normally would not make me so upset.  I began to worry about the most ridiculous things, which fed my anxiety.

I took the second anniversary of Christian’s passing off along with what would be his 22nd birthday.  I spent the greater part of that fall in a state of sadness as I remembered the days leading up to his passing.  By Christmas my emotional problems worsened and the anxiety led to panic episodes the following spring.  I took a few days off and started seeing a counselor.  This slowly started to help and I really thought I was going to start feeling like myself again.

About two months later, I started to experience tightness in my neck.  I associated it with ergonomics at work and tried carrying things differently, sitting up straighter, etc..  By fall, my neck worsened and the spasms set in.  I kept working hard and doing everything I could to keep up with the workload.  I also started acupuncture and massage therapy.  My condition worsened to such an extent that I was having trouble eating, driving, and putting my makeup on.  I did not receive a diagnosis and treatment until March of this year.  I was confident that the treatment would help and things would go back to normal again.

The first set of injections only made my condition worse and I had to take a month long medical leave.  Before I requested the medical leave I had a major panic episode and my good friend and neighbor stayed with me for a few hours.  Before she dropped me off at home she looked at me and said that “my kettle blew.”  She said that at the botton of the kettle was grief and stacked on top of that was my illness, worry for my son and husband, and the stress of my career.  She said I needed to deal with the loss of my son by joining a grief group and learning about the stages of grief.  It was at that point that I realized that I hadn’t been grieving since I returned to work.  The fear, anxiety, and massive change I went through interruped the grieving process.  I ended up leaving my job shortly after my medical leave.

It is easy to associate depression with loss – losing a child is devastating and I experienced days and moments of sadness that I thought would crush me.  Ongoing depression that does not let up, however, is a sign that a person is not grieving in a healthy way.  I had days that were harder – the pain felt more raw and I would cry, but I really thought I was moving forward and healing from the loss.  There was so much going on in my life, so much change, that the grief and pain ended up buried underneath of it all.  Unfortunately, it took an illness to open my eyes and see that I still have some grief work to do.  Perhaps this blog post is a way of moving forward.

It may seem easier at the time to run away from the pain, bury it by keeping busy, or to tell everyone we are fine, but in the long run it can have devastating effects on our emotional, physical and spiritual health.  I encourage you to reach out to friends, family, your pastor, grief counselors, or write it all down in a journal.  Don’t bury your pain.  Go through it so the pain doesn’t end up being wasted.  Perhaps making it to the other side of difficulties makes us stronger so we can in turn help others who are hurting.  Christian was my son, friend, and my teacher.  I love him too much to waste the pain of losing him.

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April from Kalispell drew this photo

 

Staying Healthy as a Caregiver

As parents, we all know the value of taking care of ourselves.  As a parent of a special needs child it is even more important.  The physical, emotional, and mental demands can easily cause burnout if we neglect ourselves.  I have learned a hard lesson with this over the last year.

For over 10 years, I was blessed with great health and strength as I cared for my two sons.  Due to the progression of Duchenne Muscular Dystrophy, their needs only increased over the years.  As their needs increased, my free time became more sparse so I had to make an effort to make the time count.  I tried getting out once a week to my favorite coffee shops or the bookstore to enjoy my favorite novel, going for walks on the River’s Edge Trail, or reading the Sunday paper with a cup of freshly brewed coffee.  I learned to cherish the small things and I still do.

I was diagnosed with Cervical Dystonia two months ago and for the first time ever, I was unable to care for my son.  It was a very painful, humbling feeling and I am thankful my husband did most of his care.  I have learned a lot going through this experience.  I learned that it is far easier and not as expensive to prevent illness than to have to heal from it.  Dystonia is genetic and it is possible that I may not have been able to prevent it, but like many illnesses it can be overcome.  I wanted to share some simple, yet powerful steps we can take daily to stay healthy and have the energy to keep up with the sometimes overwhelming demands of caregiving.

For many years, I got up well before I needed to get the boys started for the day.  Before Christian passed away, it took 3 1/2 to 4 hours to get them ready for the day.  It was far easier to accomplish this on a daily basis when I knew that I at least did my personal care and took some time for myself already.  This time can be spent doing the things we enjoy such as sitting quietly with a cup of coffee, reading the paper, in prayer, listening to music, or exercising.  Every afternoon, I would lay the boys down for 30 minutes of rest time from their wheelchairs and take that time for a cup of tea and a good book.  If I had extra time before preparing dinner I would use that time to write a letter to a loved one, send a greeting card, practice playing the piano or sit outside in the sun and watch the birds.  It is amazing how energized I would feel after taking even 20 minutes to read a book I enjoy.

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This is the last photo taken of Christian and me together.

After losing Christian, I lost my way.  All of a sudden I had all of this time I never had before, and for a long time I felt guilty for trying to do something for myself.  I have since realized that it is an honor to Christian’s memory to pursue my dreams because he never gave up on his.  Christian read books up until the last 2 weeks of his life.  He tilted back in his wheelchair, turned his head sideways on his headrest, and read on his iPhone.  We all have gifts given to us from God and if we do not invest in them, we are throwing them away.  The world ends up not being as wonderful as it could be with our gifts.

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Christian won an award in high school for his excellent work overcoming his disability to create art.

Pursuing our dreams and goals also encourages our children to never give up despite their physical limitations and it also instills some normalcy into their daily lives.  We have more energy to enjoy life and we become strong inside so we can better face the uncertainty associated with complications from the diagnosis.

Please share some ideas you may have about taking care of yourself and enjoying life to the fullest as we care for our loved ones.

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Scars Strengthen Us

I read a story about four seeds in a book by Rev J. Martin called God’s Grace Is On The Way:  Let go, embrace love.  To sum it up, four seeds were taken up by the wind and dropped into a clearing in the jungle.  Their dream was to grow to be beautiful trees, towering over the jungle.  Three monkeys also lived in the clearing that liked to amuse themselves by throwing bananas at any plant that tried to grow.  This made it very difficult for the seeds to take root.  The seeds agreed that it would be better to wait for the group of monkeys to move on before they attempted to grow.

Weeks passed and one seed thought she should at least attempt it.  When she tried to grow, the monkeys pelted her with bananas.  She tried and tried, even after the other seeds asked her to stop trying.  She didn’t give up but kept trying harder and harder as the monkeys continued to attack the plant.

Then, one day, the monkeys hit her with bananas but none made her stoop over.  The little tree had taken so many blows that she was now full of hard knots and scars.  Her slim trunk had gotten thicker and more resistant and could now withstand the impact of a banana.  The monkeys were unable to uproot her.  She grew until she became the most majestic tree in the jungle.

When we are dealt a bad hand in life or end up facing all sorts of difficulties, it is easy to give up on our dreams and goals.  It could be bad news from the doctor, the loss of a loved one or financial difficulty that puts us in the middle of one of life’s storms.  The storms can be so bad that it is difficult to see the other side of the lake and we wonder how we will ever make it across to the other side.

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After recently being diagnosed with a chronic illness, I wasn’t sure if I could pursue my dreams any longer.  I thought about the loss of my son, Christian, his brother, Andrew,  who continues to fight his muscular dystrophy and my husband who lives with a heart condition.  After being pelted with several bunches of bananas I set my dreams aside.

When we make it to the other side of life’s storms we become more resilient and strong.  God can use us in amazing ways when we let Him give us the strength to keep putting one foot in front of the other when life gets hard.  We can then be an inspiration to others who are dealing with their own difficulties.

We are all given gifts from God to make the world a better place.  Some of us sing, play instruments, serve, sew, write or draw.  Some of us are given the gift of inspiration.  It is amazing what a kind word or a little encouragement can do for the spirit of another.  No matter what difficulties come our way, we must never give up on the gifts that God graces us with.  He knows how important our gifts are so He will give us the strength we need to make it through life’s storms.

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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.

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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Never stop reaching for the sky!

Never stop reaching for the sky!

I’m baaack! I must admit, I was pretty shocked when I noticed how long it had been since I lasted posted. I convinced myself that I did not have time and did not need to write in my blog. It is amazing how if we tell ourselves something enough times, we will really start to believe it. A phrase I have seen many times states that “we become what we think about”. Our attitude really does make our world. It can make or break our day.

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I have recently joined the gym after wanting to go back for several years. It was humbling after my first workout. I ended up very sore and tired. With anything new, it’s easy to fall prey to fearful thoughts. I payed for an entire year up front and I have asked myself several times if that was a mistake. I have been in the same routine for so long that it has become a rut. I spent so many days at a time at home caregiving, cleaning etc. that when I actually did get out, I was a little shocked.

The truth is, I need the exercise, we all do. It keeps us strong and less prone to injury and combats depression and anxiety. I know it will improve my life so long as I keep on keeping on! As I continue on this journey, doors will open, opportunities will present themselves and the walls I have built up will begin to fall.

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Coffee talk

Fireplace at Faster Basset
Fireplace at Faster Basset

Today was my day to get out of the house for a couple of hours.  Our van is in the shop until next week to have the back doors modified, so I took the chance while I had it.  The boys have grown so much that we are having the back doors enlarged and the opening made bigger so they can drive into the van without bending over.  We are so excited to have this done!  For the longest time, when we have gone places, we have had to limit the amount of stops or have the boys stay in the van for some of them so their backs wouldn’t become so sore from bending over.  What a blessing it will be to not have to worry about that anymore!

Anyway, back to the getting away bit.  When I am able to get out by myself, my favorite place to hang out is Faster Basset.  They are a locally owned coffee shop that started out as a food cart.  They are known for their crepes.  I have yet to try one.  They use direct trade coffee from Missoula and it is oh so good!   I drink my coffee black so I cannot drink Starbucks very often – talk about strong and making your mouth draw inward from dryness.  Remember when the coyote on the Road Runner show ate alum and his mouth drew in?  Yep.  Starbucks.

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Back to Faster Basset.  Locally owned coffee shops are the best.  The sounds, scent of freshly ground coffee, the warmth of the fire.  This particular shop has the Public House on the other side.  They serve beer and there is a huge window where you can see the giant drums that they make the beer in.  I haven’t ventured over on that side too much but it seems like people enjoy it.  On the tables are flower arrangements from a locally owned flower shop called Voila.  Beautiful.  With my book and coffee, I am in my own little heaven.

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Do you have a favorite coffee shop where you enjoy talking with friends or reading a good novel?