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.

P1000241
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.

IMG_1813
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.

IMG_2224

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.

Inspirational-Quotes-Of-the-Day-No-Storm-Can-Last-Forever-Your-Life

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.

600788_600226389996858_885965816_n