“Your daughter has a terminal muscle disease. She has only six months to a year to live.” This pronouncement came from a doctor on Shela’s first birthday. But he was 18 years wrong on his life expectancy prediction!
No other single circumstance has impacted my life and faith like raising my physically challenged daughter. Although I grieved for the child that wouldn’t be, I was forever changed by the child that was. One frail little girl, unable to walk, dress herself, or even turn over at night, taught me more about God than all of the teachers and preachers I’ve been exposed to. These lessons became mine in the triumphs and trials of her life.
God’s strength is truly perfected in weakness—hers and mine
The primary symptom of Spinal Muscular Atrophy, Shela’s disease, is weakness. The wasting of her muscles resulted in extreme frailty. Shela had to have rods implanted to keep her spine straight. She often needed to prop her head with her hands.
Yet Shela’s focus was never her “cannots,” it was on her “can-dos.” And there were many. She read voraciously, memorized many Bible verses, and participated enthusiastically in children’s choir. She also stenciled gift bags and beaded salvation bracelets. She dared to ride the wild rides with friends at amusement parks. She dared to go on youth trips without me. She even allowed “untrained” friends to take control of her wheelchair! And through it all, she smiled. That smile! Her delightful grin assured startled observers all was right in Shela’s world. She reminded us all 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.
It is possible to be content in whatever state you are in
I was shocked and thankful one day to hear Shela, as a preschooler, singing “I’m glad to be me.” Incredible! Unable to walk, crawl, or dress herself, Shela was glad to be who she was. Shela was placed in our home for short term foster care as a four-month-old infant. We soon gained permanent custody. We decided to retain her given name when we adopted her. Later, I learned that the name Shela means “contented heart.” God’s character within her modeled acceptance and peace with the limitations of her body. Once, in a college essay, Shela wrote, “I would loved to have been a dancer.” Instead, she went to the recitals of a young friend and experienced the vicarious delight of someone else’s music and movement. Much of Shela’s contentment came from her unique ability to “feel” another person’s joy. It was hard for me to rage against the difficulties of my 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 embraced as a growth opportunity
While caring for Shela and her four younger brothers, I also met the needs of my elderly grandmother. When she turned 90, we brought her into our home. Sometimes the workload seemed tremendous and the weariness overwhelming. I often felt despair at the never-ending tasks. Isaiah 40:29 says, “He gives strength to the weary.” I ran to God for supernatural stamina. In my role as a servant, I learned to yield my rights and needs to Him. I clearly remember walking in my neighborhood one evening and crying 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.”
I learned what incredible courage looks like
At Shela’s memorial service, our pastor said, “Perhaps the word that most clearly summarizes Shela Kirkpatrick’s life is ‘courage.’” What was brave about Shela? Besides her commitment to living life, the clearest indication of her courage was seen in her response to personal crises. Her greatest challenge came as a seventh grader when her wheelchair slipped off a steep sidewalk and her head took the force of the blow as the 100-pound chair slammed into the asphalt. She suffered a traumatic brain injury. Through prayer, God’s grace and Shela’s fighting spirit, she conquered surgery, the respirator and pneumonia to leave the hospital in three weeks. The doctor concluded her survival was a miracle.
With God in us, we can be unbelievably strong in the face of suffering
In the hardest times of sickness and heartache, I sometimes wanted to flee. The responsibility for choices and the helplessness to change circumstances were overwhelming. When we had to learn respiratory 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, when Shela couldn’t swallow well, anxiety would smother me. My flesh could become consumed with fear and self-doubt about my ability to meet her needs.
But “God in me” would whisper, “Be still and know I am God” (Psalm 46:10); “Do not be anxious about anything” (Philippians 4:4); “I will strengthen you and help you” (Isaiah 41:10). I’m so glad I didn’t flee!
Shela’s 19 years on earth are memories. The lessons I learned from her are very much a part of who I am. God called Shela home on July 28,1993. In my grief, I learned even more. After the raging and pain, my faith and hope came to an even deeper place. Perhaps the greatest gift came from God’s assurance that Shela is content and delighting in His presence. As the first Christmas after her death approached, I didn’t know how to face a holiday forever changed. A friend gave me a small package. I sat in Shela’s room to open it. My tears flowed. My gift was a lovely ballerina angel. It was God’s reminder that my child who had never walked, yet longed to be a dancer, now danced before the throne of her heavenly Father. Ecclesiastes 3:4b indicates there is “. . . a time to mourn and a time to dance.” My daughter—my teacher—dances now!