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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