More than a Bedtime Story

“Auntie Lorie?” Said my 5-year-old niece in a somewhat melancholy voice.

“Yes, ma’am.” I responded.  As usual, I had adopted, as a means of role modeling, a respectful and acknowledging response, given my nieces’ age and level of understanding. I had recently observed that Miss Lenzie was growing into the stage of childhood that my mother called “becoming a big girl.”

Lenzie’s understanding of the world around her was changing. She carried a certain growing sense of discernment about things that had been a mystery only months earlier. She knew that a troll did not live in granny’s basement; she knew the difference between make-believe and real life; and, she also knew that she could make her younger brother suffer horribly just by ignoring him.

Of late, I found that her questioning could generally be classified into small, medium, and big inquiries.  A small inquiry required mostly a simple nod or grunt on my part as it usually dealt with food and apparel; a medium question, which addressed comings and goings, needed a more thoughtful and careful response; and, finally, big questions, dealing with life and death issues, had to be handled in a responsible and mature manner.

“Why do you always do that with your hand when you pick things up?” She asked.

The quizzical look in her eyes told me that she needed a prompt and pointed explanation.  She had been very quick to notice the difference between how she used her arms and hands and how I used mine. Her question came as we worked together. I was supervising the clean up of her room before reading her favorite bedtime story aloud. As I bent over to pick up toys and papers from the floor, she noticed that I did things differently than she. And, it wasn’t accidental, as she had observed the same condition earlier that afternoon—a lifeless arm. How was that to be understood?

“Well, sweetheart, Auntie Lorie’s arm is broken.” I explained calmly, “It doesn’t work like it should. And, one arm has to help the other.” I looked to see if the answer of the broken arm satisfied her inquiry. Her question clearly fell, after all, in the big question category. And, this was the first time she asked openly about the lack of strength she plainly saw in her auntie’s right arm. I wondered if I needed to go any deeper into the physiological damage of dystrophy, the doctor visits, the painful tests, the prescribed medications, and the…

“Oh.” She replied. Her tone suggested that she thought it perfectly normal that one arm should help the other.

Adjusting to the full effects of muscular dystrophy as a long-term illness remains an ongoing challenge for me. And, the mental image of Miss Lenzie that night has played itself back several times over the past few weeks. Many medical researchers suggest that just as those of us who suffer a long-term illness require some adjustment, so do those around us. Oddly, I had not given any thought to how a five-year-old would need to make sense of her auntie’s long-term illness. I had been more concerned with how my own daily needs would be satisfied; I also wondered a great deal about my future. Interestingly, Dr. Phil ( suggests that in the face of long-term illness, we should among other things:

  • Learn to manage the illness
  • Communicate how the illness affects feelings
  • Accept and confront changing personal feelings
  • Realize that the illness can redefine relationships
  • Set realistic personal guidelines
  • Don’t force children to deal with adult issues

And, as the image of that evening relives itself once again in my memory, I have to ask: “Would I say or do anything different?”

Yes, I think so. Knowing what I know now, I would want to stop, put my arm around Miss Lenzie, and tell her: “But it doesn’t keep me from loving you!”  Although I’m learning day by day to manage the physical effects of muscular dystrophy, I realize that I have much more to discover about change and my relationship with others especially those that love and care about me. What I learned that night from my 5-year old niece was the simplicity and straightforwardness she used to communicate her concern. She was willing to ask—why, without shame or guilt. Most importantly, she was prepared to confront the truth of her own feelings. I think I have a lot to learn about long-term illness. Is it possible to have a 5-year-old role model?

Living today,




Filed under Art and Artistry

3 responses to “More than a Bedtime Story

  1. Patty Drown

    Your post made me ask myself a question- as your thoughts often do.

    “She was willing to ask “why? without shame or guilt.”

    When is that we lose that ability?
    When do stop asking the questions that were once so natural to us?
    When did it become better not to know?
    Is it somewhere between “big girl” and whatever comes after that?

    Auntie Lorie’s arm or the man pushing his universe through the streets in a shopping cart. …. these are things that should make us all ask a simple ‘why’.
    Are we too polite to ask the question, or are we too afraid to know the answer?
    Does life then become a grown up game of ‘make believe’?

  2. your seester

    Ms. Lenzie has taught Granny a thing or two, also…and it is usually an innocent insight into how we see ourselves and the world around us…I hope to never stop learning from her wide-open eye view of the world…enjoyed the story, seester, you do good work!

  3. PatEcake

    Really enjoyed how the interaction between Miss Lenzie and her Auntie Lorie allowed you to share your insights into living with a long-term illness.

    Loved the photos that you’ve posted with your more recent entries. They add so much to your stories.

    Looking forward to many more “tete-a-tetes” in the near future between you and Miss Lenzie, Mandy, Miss Thelma and others who touch your life on a daily basis. Thank you for sharing your thoughts with us!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s