Perfectly Human: My Pirfect Life by Nancy Jo Sullivan

Sarah with her mother, Nancy Jo Sullivan, August 2003

**Leave a comment on this post for the chance to win a copy of Nancy Jo Sullivan’s new book, Small MerciesI will announce the winner on Monday, November 26th.

What does a perfect life look like?

When I ponder this question, thoughts of Sarah come to mind.

She was born on a snowy Minnesota evening, over two decades ago.  She was our first, a beautiful newborn with auburn hair and a dimpled smile. But within an hour of her birth, the doctors began gathering around my bedside.  We believe your baby has Down’s syndrome…

Questions, all of them unanswerable, filled me. Why this baby? Why our family? What did the future hold?  I had prayed for a healthy child. Now, it was clear that her disability was non-negotiable.

But as the first months and years of her life passed, I fell in love with this amazing child. As an infant she smiled, always.  She never went through her terrible twos, threes, and fours. She was too busy defying her disability, grinning widely as she slowly learned to walk, talk, sing and dance.

Sarah loved fairy tales.  One afternoon, I was reading her the story of Snow White, along with her two younger sisters.  With a crown on her head, Sarah pointed to a picture of a crowned princess.

“Mom…That’s…that’s….mmme,”  she said. She got up and began dancing around the room.  “I’m…I’m… loved”

I never was sure if it was Sarah’s disability or her innate goodness that rendered her incapable of bitterness or resentment. Yes, she was vulnerable, unable to defend herself in a world that was often cruel. Nonetheless, her life was a song of kindness, one that she taught all of us to sing.

As Sarah moved into her teenage years, she began penning her thoughts on the inside covers of her fairy tale books.  Each afternoon, she would write at her desk wearing a tiara and dress up gown.

Sometimes as I passed by her room with a laundry basket, I would take a peek at her misspelled messages; My nme is prncess Sarah. God livs in my hart. Someday my prnce wll come.

One day, she wrote, I have a pirfect life. I patted her on the back and went back to my work, grinning.

During her twenty-three years on earth, she never once lamented about what she couldn’t do. Instead, she read love stories. She wrote beautiful messages. She dressed up on ordinary afternoons. She danced. She smiled. She treasured each of her days.

Were there times when her disability was hard on me? Did I have moments when I wished everything was different? Of course.

But now that she is safe in God’s arms, I can’t recall the hard days.

In the world’s eyes, Sarah’s life was far from perfect. She bore the slanted eyes and low muscle tone of a child with Down syndrome. She functioned at the level of a first grader. She wasn’t wealthy, powerful, or famous.

But Sarah’s disabilities did not define her. On the contrary, she saw herself as royalty. The Lord of true love lived in her heart.  His light shimmered from her eyes and radiated from the irrepressible joy she shared. She was a princess; God’s beloved.

These days, I love to remember Sarah wearing her crown-and think of myself wearing one too, as she taught me.  We are all princes and princesses. We need not be perfect to win the affection of our heavenly King. Even if we are disabled by many fears and failings, we cannot be stripped of our royal identity.

So today, put on your crown.

Defy your disabilities and dance for joy.

Your pirfect life is waiting to be lived.

Nancy Jo Sullivan is an inspirational author and speaker. She has published with Random House, Guideposts, Readers Digest,and the Huffington Post. Her newest book, Small Mercies, was recently released by Loyola Press (again, leave a comment on this post to enter a drawing to win a copy).  In the book,  she writes about God’s presence in motherhood, family and love even in her darkest moments. The mother of two grown daughters, Nancy Jo resides in Saint Paul, Minnesota. She loves hanging out with her daughters, teaching writing classes to kids with special needs, jogging, making spinach smoothies and of course, writing about her imperfect life. If you would like to learn more about Nancy Jo,  visit her website and blog at www.nancyjosullivan.com

Update: Congratulations Josette! You are the winner of the book giveaway!

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. This story makes me smile! I will have to read her book for sure. I love the “pirfect” life I am living!

  2. How well you tell your story…. thanks :)

  3. Sounds like Sarah was an amazing gal, I’d love to read more about their family’s journey. Thanks!

  4. What an inspirational story. As someone who works with families of children with disabilities I am always intrigued by their stories.

  5. I would love to read more of her story :)

  6. What a great reminder that “pirfect” isn’t what we always think it is!

  7. This was beautiful! We were guardians for a disabled cousin and I can relate to Sarah. Winnie thought she was a queen!

  8. This could not have come at a better time for me! Thanks for sharing her story!

  9. What a story! I cannot wait to read more about Nancy Jo and Sarah’s story. As a mom myself to an almost 15 yr old daughter, a blessed gift, my first born, also diagnosed with Down syndrome within a few hours after birth, I love to hear the stories of other mom’s journeys. Thank you for sharing.

  10. Anna Theurer says:

    A beautifully written story! I look forward to learning more about Nancy Jo and her daughter Sarah. It sounds like Sarah really knew how to live life to its fullest!


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