The Gift of Haley AN INTERVIEW WITH JEFF AND VALERIE MITCHELL I’ll never forget the sight. My son, Ty, five years old at the time, was curled up on the sofa in a travel trailer watching a cartoon with his new friend, Haley. We were at a water-ski tournament hosted by Haley’s dad, Jeff Mitchell, and the Beaver Lake Ski Club in North Carolina. Ty had taken refuge from the heat and ski action in Haley’s family’s motorhome.The two had spent the day watching television in contented, companionable silence. Finally, it was time for us to go. Ty got up from the sofa, gave Haley a hug, and told her goodbye. We took a quick snapshot of the two of them to remember their travel-trailer cartoon adventure. We exchanged gentle hugs and said our goodbyes. Haley’s expressive face made it clear she had enjoyed her time with Ty. Her humility and peace-filled spirit left a lasting impression on my heart. Ty and Haley never had the opportunity to play together again, but for many years we kept up with Haley and her family as they courageously fought against a debilitating neuromuscular disease, spinal muscular atrophy (SMA). SMA attacked Haley’s little body with a vengeance, leaving her unable to move or even breathe on her own. She lived most of her life connected to a Bi-PAP breathing machine and confined to a bed or specially designed wheelchair. Many people would say that Haley was never able to really do anything. Yet, amazingly, in her short thirteen years, Haley did what truly mattered. She lived every day. She loved well and trusted without question. She fought the good fight of faith, all the while reflecting God’s love and grace to all she met. Haley was one of God’s champions. I asked Haley’s parents, my friends, Jeff and Valerie Mitchell, if they would share Haley’s story and how their family continued to live life fully while facing terminal illness. We can learn much from their journey. ~ Kristi KOJ: Thank you, Jeff and Valerie, for agreeing to share Haley’s story with our readers. How did you first discover that Haley had SMA? Val: As a mother, I knew right away that something wasn’t right with Haley’s development. But it wasn’t until she was four months old that she was diagnosed with spinal muscular atrophy. SMA affects the motor nerve cells in the spinal cord, greatly reducing the ability to walk, eat, or breathe. It is the number one genetic cause of death in infants. At the time Haley was diagnosed, there was no known cure, and children were given a life expectancy of two years. The doctors basically told us to go home, love on Haley, and enjoy the little time we would have with her. KOJ: How does a parent even process such news? Val: You can’t. It was like it wasn’t real, like it couldn’t possibly be happening to us. It took a long time to absorb something that grave. Life just froze, and despair settled in. At the beginning, I was certain I’d never experience 8 kojministries.org Issue 2 2017 normal life again, much less joy. It was like there was this glass between me and the real world. I could see other people going on with their lives, but I couldn’t participate. It was a lonely time. I’m so thankful for my mom and the nurses who came alongside to help me face each day. Jeff: As a father and husband, I felt helpless. I’m a Type A personality—I fix things; I get things done. Suddenly, I couldn’t do anything. There was no fixing this. There was no helping my wife or my daughter. I couldn’t even get sufficient information about the disease—there was so little available. KOJ: What kept you moving forward each day? Val: I had two little girls who needed me to get up and be their mom. Our older daughter, Kelsie, was five. She and Haley both needed me. Curling up in despair and disappearing from their lives wasn’t an option. I had to keep going for them. So I just kept putting one foot in front of the other. Haley taught me what trusting God looks like. It’s resting in His arms when your world is falling apart. Jeff: I kept busy. I took over the practical side of things, like insurance and paying bills. I did what I could. I worked to raise awareness for SMA. We held fundraisers, like our Haley Mitchell Ski-A-Thon. We raised over $450,000 for research. KOJ: I would imagine the stress of living with a terminally ill child, the mounting medical bills, and all that goes along with such an illness would put a strain on the best of marriages. Focus on the Family says that over 75 percent of all marriages plagued by chronic illness end in divorce. How did you avoid becoming a statistic? Jeff: It wasn’t easy. We had a lot of dark moments. Val and I were facing the same situation, but we processed it very differently. I face things head-on. She’s more of an introvert. We had to guard ourselves from resenting how the other dealt with Haley’s illness. I couldn’t force Val to deal with the situation my way, and she couldn’t force me to deal with it hers. We had to practice grace with one another. Val: The biggest challenge was caring for each other’s needs. We became so focused on caring for Haley and Kelsie that we overlooked each other. It wasn’t intentional; we were just in survival mode. We began to live very separate lives. Jeff worked, and I worked part time. Haley had constant doctor appointments, and Kelsie needed to get to sport events and dance. When the weekend arrived, we’d ask each other, “What are you doing
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