May 2018 – The road less traveled

Could Have Been Me

Today’s song of the day is Could Have Been Me by The Struts. When I listened to the lyrics, I wanted to jump up and shout the lyrics along with the song.

Don’t wanna live as an untold story
Rather go out in a blaze of glory
I can’t hear you, I don’t fear you
I’ll live now cause the bad die last
Dodging bullets with your broken past
I can’t hear you, I don’t fear you now

Wrapped in your regret
What a waste of blood and sweat
Oh oh oh

I wanna taste love and pain
Wanna feel pride and shame
I don’t wanna take my time
Don’t wanna waste one line
I wanna live better days
Never look back and say
Could have been me
It could have been me
Yeah

Don’t wanna live as an unsung melody
I’d rather listen to the silence telling me
I can’t hear you, I won’t fear you
Don’t wanna wake up on Monday morning
The thought of work’s getting my skin crawling
I can’t fear you, I don’t hear you now

We all have songs that speak to our hearts. This particular song has since the first time I heard it. I think that three of the worst phrases along with “I can’t” are phrases that include the words coulda, woulda and shoulda. I use these words far more than I ought to and I want to say them less. If I live to be an old woman, I want to look back and know that I lived the best days I could in service and love. I hope to be able to look back and know that I changed the world in some way, even by encouraging and uplifting others.

We all have a song in our hearts and many of us are afraid to live out the melodies that God places in us. Fear can only keep us from living with purpose and without regret if we allow it to. Our pasts cannot keep us from having an excellent finish. When we refuse to allow fear and mistakes of our past to keep us from pursuing our dreams and showing up each and every day as our best selves, then we will not have to say “It could have been me.”

Beautiful Hands

My grandmother of 92 years is in hospice care. I drove over to see her last week and was taken aback by how frail she looked. As I sat next to her and talked to her, I kept looking at her hands. I thought of everything her hands accomplished during her life – raising three boys; taking care of a home; breeding and raising beagles; growing, picking, and canning massive amounts of vegetables every year; shooting and processing deer every year; raising and caring for rabbits; boarding dogs; creating art and building things; and living a full life. Her hands became still on her blanket as she slept, and I watched her hands raising up and down to match her breathing as I thought of everything they accomplished during her life.

July 19, 1980 — Some of my fondest memories are being in grandma’s backyard or in her garden.

Grandma only said what needed to be said and she said it with truth and boldness. I honestly cannot remember her ever making small talk. The funniest thing I remember hearing her say to date was about a woman sitting in the waiting room with her as she waited for the eye doctor: “She talked and talked for 30 minutes and didn’t say a thing.” Grandma listened and I know this because she always had a remedy or an idea for just about anything. When Dave had to go into the hospital for a stomach ulcer, her advice was to have him eat some lamb. When I wrote to her about our finches and the eggs that were being laid, she gave me tips on caring for a female that was having a hard time passing the eggs. I told grandma once how much I enjoyed hearing chickadees and she told me that she always knew when a deer was around because the chickadees would start chirping. I am thankful for every moment I have had with her and I will always try to follow her example in many areas of my life.

Equally amazing is my sister and our good friend, both of whom are caring for my grandma. The sacrifices they are making, the dedication, and the love they are pouring out for her truly humbles me beyond words.

We are not here on this earth just to exist, waiting for Friday every week and dreading Mondays. We are here to love, create, serve, worship, lift others up, and bless one another. One of the greatest gifts God gives us is the opportunity to care for others – whether it is hands on caregiving, offering a smile to a stranger or encouragement to a co-worker, donating our time or resources to people in need or simply being who God created us to be with no fear holding us back – only holy boldness and beautiful hands.

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.

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.