Inspire, Summer 2003

Inspire 25 Having a niece with spina bifida has completely changed the life of Kori Hopeman Davis ’99. Here is her story in her own words. I will never forget October 16, 2000. It was three weeks before my wedding. I was at work when I received a phone call from my best friend … my sister. She told me the child she had been carrying for 16 weeks had just been diagnosed with spina bifida. As I hung up the phone, I knew our lives would be changed forever. I grieved for the loss of the “perfect child” my family had been anticipating. The weeks ahead were some of the most challenging weeks of my life. How could I process two extreme emotions — the happiness and joy of my wedding and the grief that my family and my sister … my matron of honor … were feeling. During those weeks, I clung to the words that had become engraved on my heart during my time at Cedarville, “Christ is all I need.” Until then I had not experienced the true strength that comes from needing Christ completely. Supported by family and prayer, my sister decided that she and her unborn baby girl would undergo in-utero surgery in an attempt to minimize the effect of spina bifida. Two days after my wedding, they drove to Vanderbilt University where my niece, Alexis Hope, became the 103rd child to have in-utero surgery for spina bifida. No one could deny that God’s hand was in this as surgery was performed on a 22-week-old unborn baby. On that day, Alexis Hope became our miracle baby. After our wedding, my husband and I made Cleveland, Ohio, our home. However, in May 2001, when Alexis was two months old, we felt led by God to move back to Wisconsin to help with our niece. I took a position as a social worker for a county Birth to Three Program. This program provides therapy and intervention for children with development delays and special needs. Little did I know how actively involved my family and Alexis would become in the program. In college, I had written a speech with the theme “It Takes a Village to Raise a Child.” I soon learned that it takes a whole community to raise a special needs child. Nurses, doctors, specialists, therapists, and other social service agencies all were coordinated to help Alexis. We learned the importance of coming together as a family to support Alexis in every way possible. The first year of Alexis’ life was full of adjustments as we pulled together and began to realize life with a “special needs” child. Because of the wide variety of ways that spina bifida can affect a child’s development, there were many unanswered questions and just as many unknowns. Having a special needs child is exhausting physically, emotionally, and mentally. In spite of this, Alexis is one of my family’s greatest joys. We treasure each day we have with her and have learned not to take any moment with her for granted. In May 2002, at the age of 14 months, Alexis took a few assisted steps. The joy was overwhelming! What a miracle! However, one month later we received the devastating news that Alexis had spinal meningitis. She spent a month in the pediatric intensive care unit, bravely fighting for her life. She was released and appeared to be on the road to recovery, but the spinal meningitis returned a few weeks later. She spent another month in the hospital, resulting in a total of 14 surgeries and procedures. As a result, Alexis has a brain shunt, is paralyzed in her left leg, and has partial movement in her right leg. She can’t crawl or take steps anymore. During that difficult time, I clung to the hope that I have in Christ. Again we grieved; our miracle baby was possibly paralyzed. I began to question why, but was constantly reminded by Alexis’ middle name of the “Hope” that we have in Jesus Christ. A month passed before Alexis was able to sit without assistance. After another month, with much determination, she was able to drag her body along the floor, a heart-breaking but courageous effort to crawl. We praised God. Then, once again, there was a devastating setback. Alexis had a major fracture of her left leg and, as a result, was put into a body cast for six to eight weeks. Each day after work, I go to my sister’s home and help her with our special needs child. I have many roles: helping with daily therapy, assisting in the many phone calls involving Alexis’ care, arranging meals from the church after hospitalizations, notifying the church and prayer chain of updates, and being a “crazy aunt” that entertains and helps make the sun shine in Alexis’ life. I’ve held my niece’s hand as she is being taken away for surgery and I’ve held onto the hands of my sister and her husband as we have awaited the results of life-threatening procedures. In spite of the difficulties, there is blessing and joy in knowing that, no matter the outcome or circumstance, God is with us. As a family, we have each other and we have the hope and faith that Alexis Hope will be “perfect” in heaven. We have the opportunity of cherishing every moment with Alexis. We celebrate every little thing she does and have learned to take nothing for granted. I still ache when my niece asks to be put down as if she has forgotten she can’t crawl or walk like all the other children, or when she politely says, “Please help,” and points to the toy she wants that is out of reach. It is during those times that I remember God’s promise to be my Rock, my Strength, and my Deliverer. I pray for blessings on Alexis and her life. I can’t wait to see Alexis grow in Him and His love. Even in her darkest moments, our sweet Alexis will hug and kiss us. With each laugh, each kiss she blows, each hug, I am reminded of Christ’s love for us. Even in the midst of pain and sorrow, there is sunshine and hope in Christ. Hope in Christ K o r i H o p e m a n D a v i s ’ 9 9