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.
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.
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.