The Write Invitation

On Tuesday, I listed six benefits of writing  and how writing is therapeutic. Now I’m inviting you to share your story on Uniting Caregivers. I hope you’ll give it some serious thought.

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The questions listed do not have to be answered. They are only suggestions to get you started. If you have questions or concerns please email


Writing is Therapeutic

It’s good to look to the past and gain appreciation for what we have in the present. This also gives perspective for the future. If the pioneers or forefathers didn’t write about their experiences, we wouldn’t have records of it. How could we have learned from them if they didn’t share their thoughts and events through their writing?

WritingAs a teenager I faithfully kept a journal and found it helped me understand my roller-coaster feelings of the love/hate relationships between young boys and girls. A few years ago I read it and didn’t want anyone else to know those inner feelings, so I decided to destroy it. Even though that journal no longer exists, I believe it helped me navigate through some rough teenage years.

After the car accident I felt the need to write again. My head was spinning with all kinds of worries about Mark, our children and how I would juggle all the responsibilities. My attention span was very short. I couldn’t watch T.V. or concentrate on a book—so I wrote. I would maybe write a few sentences about my worries, but mostly I recorded Mark’s progress such as how many breaths he took on his own that day and what his temperature was. I wrote about things most people don’t think about let alone write or read about, but it helped me focus on the positive. I still have that notebook and like to look back on it to remind myself how far Mark has come.

The past nine months I’ve benefited from writing about “Our Story”. Putting words to our experience brings meaning to it and helps me understand the purpose in the events. It’s amazing the clarity that comes from writing. Through writing I am able to sort out and work through the emotions by searching for the right words to describe it. The act of writing has provided me with a greater depth of self-knowledge and has helped me become a resilient person. Some seek the comfort of a therapist’s office, I find it in writing.

Writing is so much more than a method of communication. I’ve listed six benefits of writing:

  1. Writing is a powerful teacher that can guide us toward a happier, more contented and positive purpose-driven life.
  2. Writing promotes self-awareness and personal growth.
  3. Writing enhances knowledge, which guides us towards realizing our truth and values.
  4. Writing is a support system which creates confidence in our own unique style. With thought and purpose to what we’re writing, it can be done without apology.
  5. Writing can educate, inspire, influence and help others.
  6. Writing is like a sieve, separating worries and insecurities. It compels us to do the daunting task of confronting them, which facilitates in understanding them. Ultimately the words help us leave our fears behind.

typingYou don’t need to be a professional writer to achieve the benefits. Writing is an exceptional tool for self-exploration and inner growth which is available to everyone. It can facilitate understanding and change in our lives. From the art of writing, we learn and grow and it is a powerful method to share our love, happiness, gratitude and fulfillment.

Do you write? How has it helped you? If you don’t, you really ought to try it. Whether you write it for yourself or want to share it with others, it will be therapeutic. I dare you to try it.

Hopeful Novices

Feeling submissive to the doctors and nurses around me, I cooperated with everything they asked of me. I was aware my collarbone was broken, not because I felt the pain, but because my right arm hung unnaturally and wouldn’t move. So I cradled it with my left arm to support it. I was helped out of our totally wreaked car to an ambulance which rushed me to Mackay Dee Hospital. I was wheeled into an emergency room where broken glass from the windshield and windows was removed from my face, ears and body. When my shirt was cut open, I saw my black and blue chest and felt the labor of each breath.  Anxiously, I asked every person attending to me if they had received word about my husband yet.  I was hastily taken away in the ambulance before Mark was even pulled from the wreckage.  The murmurings of his death by the crowd of people who came to our aid terrified me. More than anything, I needed reassurance that my belief that he would live was correct.

While lying on the hard, cold x-ray table, Dr. Heiden, the on-call neurologist, interrupted the technician. He informed me that Mark had arrived at the hospital, unconscious and needing immediate surgery to place a shunt to relieve the pressure on the brain. “He’s alive,” I said with a deep sigh of relief.

Dr. Heiden replied, “Yes, but I’m not sure he’ll even make it through surgery.”

I heard the words, but didn’t focus on them. I was rejoicing in the fact that at that moment he was alive. My world had just turned upside down and the best I could do was take one moment at a time.

“Can you sign with your left hand?” Dr. Heiden asked.

“No.” I replied.

“Well then an ‘X’ on the signature line will give consent to do the surgery.”

It was a foreign feeling to have Mark’s life depending on me, but I made my “X” with my left hand and the doctor rushed out the door.

That was the beginning of my intense caregiving journey twenty-three years ago last April. I had no warning or time to prepare for this new way of life. I couldn’t comprehend what my responsibilities would be, but thankfully, I was a hopeful novice willing to learn what was needed to create a brighter future for my family.

Pioneer trek

Pioneer Trek Reenactment

In Utah we have Pioneer Day on July 24th. It’s the day the pioneers entered the Salt Lake Valley. This past week I’ve been thinking of similarities between my caregiving trek and my pioneer ancestors who walked approximately 1,248 miles from Nauvoo, Illinois. Others sailed across the Atlantic Ocean to Boston or New York City, making their journey on foot or in wagons more than 2,370 miles. They endured harsh weather, death of loved ones and starvation as their food and water supply diminished.  Nothing had prepared the majority of these travelers for the exhaustion and illnesses they would suffer. They were beginners, in a new territory, learning a new way of life. They were hopeful novices, who envisioned themselves building new homes and making a happier future without persecution.

Gratefully, I haven’t seen wolf-pawed graves of the dead or the putrefying carcasses of mules and oxen on my journey. However, worry and heartache has come from the pain and suffering I’ve seen in hospitals and rehab centers. Only faith for improvement keeps one enduring  through such difficult times.

Splintered wrecks of discarded carts or wagons have been absent on my journey, but  I have worried about individuals whose family and friends have abandoned them in their illness. It saddens me and makes me wonder what happened to drive their loved ones away. Was it the ailment itself, or the attitude of the afflicted person, either way, it’s troublesome.

Pioneer Trek Reinactment

Pioneer Trek Reenactment

The pioneers traveled in groups or companies. They rallied around each other helping one another in their journey. They needed and depended on each other for survival. There are many stories written of selfless helpful acts that saved another’s life. They mourned  and rejoiced together. Likewise, I appreciate the help and support I get in my journey from friends, family, church and support groups. In return,  I strive to give back the same to those around me.

The handcart plan was for seventeen miles a day for sixty days, but none of the ten companies could reach that goal. Despair and frustration must have come from the slow journey of seven to fifteen miles on a good day, making the trip tedious and wearisome. Today  we can make the drive from Nauvoo to Salt Lake City comfortably in an air-conditioned or heated car in nineteen and a half hours. However, I know the disappointment that comes from unachieved goals and have felt the discouragement from slow progress along with the worry that comes from an uncertain destination.

Pioneer Trek Reenactment

Pioneer Trek Reenactment

The pioneers didn’t know how or when their journey would end. Similarly, I don’t know how or when mine will either, but like my ancestors  I will carry on with faith and hope in a brighter future.


Navigating the Fine Line

Finding BalanceAs a child it was fun to test limits and practice balancing skills. Somewhere along the path of growing up (possibly after many falls) I lost that desire.

I never mastered skateboarding or rollerblading, however I did try both with my children. I didn’t practice enough and didn’t have the balance needed. I was afraid of falling and the possible cuts, bruises, breaks and pain that might come with it. I didn’t receive enough encouragement from others to keep me interested in practicing so I gave up. I regret that I didn’t have the skills and I wish my desire to succeed in these activities had overpowered my fears because I’m sure I missed out on some good times with my kids. It’s a fine line to know when we’re being wise or over cautious.

I’ve been thinking about Evey’s Story, part 2. Cally said, “There’s a fine line of balancing expectations with optimism and being realistic without being pessimistic.” I’ll bet every caregiver can relate to this statement. In my experience, often when I’m optimistic, others believe I’m not being realistic so they go over all the negative possibilities again and again. I choose to be optimistic because otherwise I become overwhelmed by the chances of a negative outcome and loose hope for improvement.

I’m sensitive to the words reality or realistic because I believe they are only applicable to a person’s experience. It raises the hair on my arms when I hear statements like, “You’re not being realistic.” or “You’re not facing reality.” It makes me want to shout back, “Whose reality, yours? I prefer to make my own!”

The definition of reality is “the state of things as they actually exist.” So the fine line comes in recognizing the state of things as they are, but not letting that control or overcome our hope for improvement. When I tried to skateboard or rollerblade, the reality was I didn’t have the balance skill, so I gave up. If I had been optimistic that with practice I could learn and gain the balance skill, my reality would have changed.

A great tip from Cally, “If there’s one lesson I have learned as a caregiver it is to expect the unexpected.” It’s true-to-life that when you expect something to go a certain way you’re often surprised by the unexpected. Sometimes it’s a good surprise and other times it’s not. Researching conditions and options helps prepare us for what might happen and gives us alternatives when needed. Again, the fine line is to keep faith in the best scenario while being prepared for the worst.

Cally also stated, “As I watch other caregivers who are further along in their journey, I always admire the grace they exude when navigating their own specific journey.” This statement emphasizes my goal with Uniting Caregivers. We give strength to one another through our words and deeds. Who would be better to help us on this trek than another caregiver?

In closing Cally said, “We are slowly learning, as caregivers, how to manage expectations and how to continue to be Evey’s biggest cheerleaders for her triumphs. We hope as time goes on we will continue to learn how to keep disappointment at bay and to always keep the expectations optimistic. Thankfully, we have met so many people along our journey with Evey who have shown us how to be as graceful as humanly possible in this adventure which is always unpredictable.”

I completely relate to this statement. I’ve been a caregiver for many years on all sorts of levels and I’m still learning. As caregivers we need to be cheerleaders for our loved ones—but we also need cheerleaders to help us overcome our disappointments and to help us keep our expectations optimistic. I’m grateful for many people whose love, support, and guidance gives me balance and direction. I appreciate their help which raises me up when I get down and their encouragement which keeps me going.  In reality, this journey is impossible to navigate alone.

Thank you Cally, for reminding me that the key to life is balance.

Evey’s Story Update

Nate and Cally Johnson were my first guest authors on October 27, 2013.  Over the past nine months, their daughter, Evey, has made some remarkable improvements, along with some setbacks. I invited them to give us an update, which they so graciously accepted. The first two paragraphs are from their first article, Evey’s Story.

Written by, Cally Johnson

On May 31, 2012 our lives dramatically changed for the better. Our daughter Evey, our fourth child, was born that day with an extremely rare genetic disorder called 17q21.31 micro-deletion syndrome. It is also known as Koolen-de Vries Syndrome.

There are only 200 reported cases throughout the world of this syndrome. Essentially, Evey is missing hundreds of genes throughout her 17th chromosome, which, in turn, affects every cell in her body, and how she develops both physically and mentally.

If there’s one lesson I have learned as a caregiver it is to expect the unexpected. There’s a fine line of balancing expectations with optimism and being realistic without being pessimistic. As I watch other caregivers who are further along in their journey, I always admire the grace they exude when navigating their own specific journey.

Evey has had setbacks and major triumphs over these last twelve months. One of Evey’s major challenges is severe scoliosis.  Because of this, she has two titanium rods placed on both sides of her spine. It required extensive surgery to put them in, and she needs them surgically adjusted and expanded every 6 months as she grows until she stops growing at the age of fourteen. At that time they fuse her spine and by then she will have had more than thirty spine surgeries, not including several other surgeries she will need along the way.  Most people see this as such a daunting undertaking for a caregiver, but I’ve learned to appreciate the consistency and schedule. If only all of Evey’s life could be so well scheduled, without unexpected surprises.

Because of Evey’s scoliosis, the doctors and therapists were not sure if she would ever crawl or walk.  They’d never seen such a young patient with her complications walk or eat on their own.  I’m happy to report that over the last 3 months, Evey has learned to eat by mouth, and is no longer dependent on her feeding tube.  A few weeks after learning to eat, Evey started to bear weight and can now get herself into a standing position and she can take steps in her walker.  She has completely shocked her team of doctors and therapists.  She also completely shocked us, her parents, since we just hoped Evey would stay the happy little girl she is regardless of whether she could ever eat or walk on her own.  We were so excited that she had a spurt of development and is turning into quite the independent two-year-old.

Between these new developments, we have also had some surprising setbacks.  We learned she is losing her hearing from some growths in her ears from repeated infections.  Evey had to have ear surgeries in between spine surgeries, but we are no longer surprised by the unexpected and we had so much positive going on, we didn’t really have time to dwell on this new-found, disappointing discovery. Thankfully, with hearing aids, she’ll be able to obtain some hearing and we are now immersing the whole family in Sign Language to help Evey throughout her life.

It has been such a growing period over these last few months adjusting to Evey’s triumphs and challenges.  We are slowly learning, as caregivers, how to manage expectations and how to continue to be Evey’s biggest cheerleaders for her triumphs.  We hope as time goes on we will continue to learn how to keep disappointment at bay and to always keep the expectations optimistic.  Thankfully, we have met so many people along our journey with Evey who have shown us how to be as graceful as humanly possible in this adventure which is always unpredictable.

Thank you, Cally, for sharing your story. You are a wonderful mom and caregiver to a very special daughter!