The Day My Daughter Made Me Cry

 

trinity-snow
Art Work by Rose Wolfe

 

My daughter called me the other day.  It was one of those “just to say, ‘Hi,'” phone calls.  Nothing important, no purpose – a lunchtime catch-up.  Although it was a sweet moment, this isn’t what made me cry.

We talked about her job and a recent promotion.  I am very proud of her work ethic and her accomplishments.  I am delighted when others see in her the beauty of her mind and her soul.  My love for her flows to those around her.  She has worked hard to gain the respect she deserves, but this isn’t what made me cry.

Recently, in a moment of high energy, I took a moment to do a little, silly “dance.” It all started as I was leaving the sanctuary and I noticed a friend enjoying the closing song.  Most of the congregation had left, but a few of us remained.   Rising out of my wheelchair, I grabbed my friend’s hand.  Together, as we sang and swayed to the music, adancing-at-churchnother friend joined us.  (My husband caught the moment on his phone and had sent the video to my daughter.)  My daughter and I laughed about the joy of the moment.  As I related the story behind the video, we talked about spontaneous physicality and about how few of these opportunities were available to me.  The energy required to stand and sway is not often possible.  Usually, my heart wants my body to participate, but my disease refuses to comply.  However, this isn’t what made me cry.

She turned the conversation around to me.  “How are you doing?” she asked.  I told her that I was taking a painting class at the local art museum, again.  This time around, the art instructor had demonstrated a technique that had broken a creative barrier for me.  I was elated with the new style and eager to generate some new pieces.  (Maybe even a Christmas gift or two.)   This isn’t what made me cry.

My refusal to give in to my disease keeps me busy (with lots of naps).  Once a month, I attend a writing group.  They are a great group of people, and I told her about the inspiration and constructive insights I have gained from their critiques.  We meet in the late evenings, and I need to take a long nap before I head over to our meetings.  The energy cost is high and the next day is spent in bed.  Nevertheless, this isn’t what made me cry.

Finally, the conversation turned to the progress of my disease.  I told her that I have had more incidents of the falling/slipping out of bed.  My husband springs out of bed and rushes to me as I quietly call out in the middle of the night, “Dennis, help me.  I am falling.”  In addition, I am starting to have trouble sitting up in bed in the morning.  My brain tells my body it is time to wake up; my body refuses to comply.  I cannot sit up or roll over.  I just lie there: observing the war between mind and body.  Again, I need to ask my husband for help.  “Dennis, I can’t sit up.  Will you please come help me?”  As always, my husband responds quickly.  Telling her about this isn’t what made me cry.

When I finished telling my daughter about the physical problems I am having, I said, “I don’t know what I do would if something happened to Dennis.”

Immediately She said, “Mom, you would come to live with us.  Not in our current home.  We would get a different place that would accommodate your needs.”  You guessed it.  This is what made me cry.

 

Published by

Rose Wolfe (Living Free with disAbilities)

Let's get to the elephant first: I have myotonic dystrophy which defines my physical limitations, but it does not define me. Without the distraction of physical activities, I have found my passions: (1) Encouraging others to live more fully with fun, faith, and hope; (2) finding freedom in oil painting; (3) writing about my experiences; and (4) encouraging others to live more passionately. It is my belief that every person lives with at least one disability - for impairments are not limited to those with chronic illnesses. Many neurotypical people are psychological architects who have constructed enclosures in which they trap themselves. Mindsets, attitudes, and perceptions are fluid realities. Many of us have forgotten that it is possible how to live beyond our disabilities. Life may have challenges but faith and hope are within reach. I have made my choice: I am LivingFreeWithdisAbilities.

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