We’re never too old to learn from our children.
by Lettie Kirkpatrick Burress
“Your daughter has a terminal muscle disease. She will never walk or gain strength but will weaken progressively. She has only six months to a year to live.”
This pronouncement came from a doctor on Shela’s first birthday. As it turned out, he was eighteen years off on his prediction of our daugher’s life expectancy.
Shela had been placed in our home for short-term foster care when she was four months old. Before the doctor’s diagnosis, we had begun adoption proceedings, believing that God had brought her to us. The diagnosis didn’t change that.
Although I grieved for the child who wouldn’t be, I was forever changed by the child who was. She taught me significant lessons in the triumphs and trials of her life.
God’s strength is perfected in weakness, hers and mine.
The primary symptom of Shela’s disease was weakness. The wasting of her muscles resulted in her extreme frailty. Shela had to have rods implanted to keep her spine straight, and she often needed to prop her head with her hands. A productive cough took great effort.
Yet Shela’s focus was never her lack of strength; it was on the can-do’s and there were many. She read voraciously, memorized many Bible verses, and participated in children’s choir at church. She also stenciled gift bags and beaded salvation bracelets to sell in craft shows.
Shela dared to ride the wild rides with friends at amusement parks, dared to go on youth trips without me, and even allowed “untrained” friends to take control of her wheelchair. And through it all, she flashed her famous smile.
That smile! The quick humor and delightful grin assured startled observers that all was right in Shela’s world. She reminded every one of us that God’s joy encounters no barriers and no limitations.
Mothering Shela in my weakness and God’s strength taught me that His presence brings joy even in the most difficult circumstances.
We can be content in any situation.
Perhaps the most amazing characteristic of Shela’s life was her contentment. I was shocked and thankful one day to hear her, as a preschooler, singing a little song with the phrase “I’m glad to be me.” Incredible! Unable to walk or crawl or dress herself, Shela was glad to be who she was.
Though Shela’s teenage mother had named her before we were given permanent custody and began adoption plans, we decided to retain her given name. Later, God led me to information that the name Shela means “contented heart.” His character within her modeled acceptance and peace with the limitations of her body.
One day Shela expressed in a college essay that she would’ve loved being a dancer. Instead, she went to the recitals of a young friend and vicariously experienced the delight of someone else’s music and movement. Much of her contentment came from her unique ability to “feel” another person’s joy.
It was hard for me to rage against the difficulties of life when my own child calmly accepted her challenges with so much grace, and harder still to resent others when Shela found so many reasons to love them.
Servanthood can be an opportunity for growth.
When my elderly grandmother turned ninety, we brought her into our home. I met her needs while caring for Shela and her brothers.
Sometimes the workload seemed unbearable and the weariness overwhelming. Despair often swamped me at the never-ending tasks. But the Bible told me, “[God] gives strength to the weary . . .” (Isaiah 40:29). I ran to Him for supernatural stamina. I also learned that He is the “God who sees” (Genesis 16:13). As He saw Hagar’s plight with Ishmael, He saw my multiple nighttime trips to turn Shela and the time spent dressing and bathing her.
In learning to serve, I learned to yield my rights and needs to God. I walked in my neighborhood one evening and cried out, “God, if my only purpose on this earth is to meet the needs of Shela and Grandmother, help me accept that. But I need Your grace to do it well.”
We can be gracious and dignified even when our most personal needs must be met by others.
Shela had to be not only bathed and dressed by others but also toileted. And even though her weight was slight, she endured heavy menstrual periods. Still, Shela recruited friends to “train” in her care and lifting so she could leave home for overnight stays and youth trips.
With great dignity, she accepted this assistance as a necessary price to pay. If Shela sensed reluctance or embarrassment on the part of a caregiver, she would tell me, and we would develop an alternate plan. Her own discomfort was short-lived. In nineteen years, I seldom saw Shela give in to self-pity.
God gives us power to face unbearable circumstances.
In the hardest times of sickness and heartache, I sometimes wanted to flee. The responsibility for making choices and the helplessness to change circumstances could overtake me. When we had to learn reparatory therapy to suction fluid from Shela’s lungs and a “thumping” technique to loosen up mucous, I panicked. When I lived between hospital and home, I sometimes didn’t want to get on the elevator.
Sometimes Shela couldn’t swallow well, and anxiety would smother me. I could become consumed with fear and self-doubt about my ability to care for her. But God would whisper: “Be still, and know I am God” (Psalm 46:10); “Do not be anxious about anything” (Philippians 4:6); “I will strengthen you and help you” (Isaiah 41:10). And I would go on.
Incredible courage has a face.
Shela died July 28, 1993, at age nineteen. At her memorial service, our pastor declared, “Perhaps the word that most clearly summarizes Shela Kirkpatrick’s life is courage.” The morning after her death a friend called and said, “Shela was the bravest person I’ve ever known.”
What was so brave about Shela? Besides her commitment to living life, she endured spinal fusion, bouts with pneumonia, and numerous hospitalizations without complaint.
But her greatest challenge came as a seventh grader. “Shela has fallen off the sidewalk in her wheelchair,” a caller told me. “An ambulance is on its way.” Shela’s chair had slipped off a steep sidewalk, and her head took the force of the blow when the one hundred-pound vehicle slammed into the asphalt. Shela suffered a traumatic brain injury. The surgeon informed us that the fall “pulverized a portion of Shela’s brain. We had to remove part of the left hemisphere. I don’t know if she’ll survive or what the results will be.”
Through prayer, God’s grace, and her fighting spirit, Shela conquered surgery, the respirator, and pneumonia to leave the hospital in three weeks.
Many of our “trials” are insignificant.
In the years of observing and participating in Shela’s brief but powerful life, everyday problems shrank to insignificance. While women around me longed for new cars and bigger homes, I was asking God to give Shela friends who looked past her wheelchair and delighted in her joy.
While they agonized over vacation choices, I considered affordable getaways that accommodated wheelchairs. And while minor childhood disturbances caused great worry for them, I grieved for a child whose next sickness could take her life and for the fears I couldn’t voice. Thoughts of the road ahead crowded out the importance of the mundane except as it added to the gift of today.
As the first Christmas after her death approached, I didn’t know how to endure a holiday forever changed.
But a friend gave me a small package a lovely ballerina angel. As I sat in Shela’s room to open it, the tears flowed. It was God’s reminder that my child who had never walked, yet longed to be a dancer, would dance before the throne of God. As Ecclesiastes 3:4b indicates, there is “a time to mourn and a time to dance.” This was the greatest gift of all that Shela will be content and delighting in God’s presence for eternity.
No other single circumstance has impacted my life and faith as that of raising my physically challenged daughter. One frail little girl unable to walk, dress herself, or even turn over at night taught me more about God than all the teachers and preachers I’ve been exposed to.
My nineteen years with Shela are memories, but the lessons are very much a part of who I am. In my grief, I learned even more. After the raging and pain, my faith and hope have found a still deeper place.
Scripture quotations were taken from the New International Version.
About the Author
Lettie Kirkpatrick Burress has published cover stories, interviews, personal experiences, essays, and devotionals in such publications as Home Life, Discipleship Journal, Caregiving Today, Family Digest, and Parent Life. She also speaks at women’s gatherings and writers conferences. At her church Lettie teaches adult Sunday school, coordinates retreats and seminars for women, directs the Children’s Bible Drill, and participates in the Moms in Touch prayer ministry. She lives with her husband, Phillip, in Cleveland, TN.