Interview with Jeff and Valerie Mitchell by Kristi Overton Johnson
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. Ty, totally uninterested in watching me compete yet again, took refuge from the heat and ski action in Haley’s family’s motorhome. For hours, Ty and Haley lay on the couch together, watching television in total silence. They were perfectly content.
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 will forever be engrained in 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 everything, more than most.
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 be willing to share Haley’s story and how their family continued to live life to the fullest 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. Can you start by telling us how you first discovered that Haley had spinal muscular atrophy?
Val: As a mother, I knew as soon as six weeks 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). Spinal muscular atrophy is a disease that affects the motor nerve cells in the spinal cord. It takes away one’s ability to walk, eat, or breathe; it’s 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 that?
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 for my mind to absorb something that grave. Life just froze, and despair settled in. At the beginning, I was certain that I’d never experience any type of normal life again, much less joy. It was like I was living in another world, and 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 who is used to figuring out how to fix things. I like to get things done. Now, all of a sudden, 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.
Jeff: I dealt with our situation by keeping busy. I took over the practical side of things, like insurance and paying bills. I did what I could. One way I felt like I was helping was raising awareness for spinal muscular atrophy. 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 could 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. We were faced with the same situation, but we processed it very differently. I face things head-on. Val is 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’s needs 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 this weekend?” Instead of “What are we going to do?” When Haley passed, we had to learn how to be a couple again. The years had dramatically changed both of us, but we committed ourselves to doing the hard work.
KOJ: When I met Haley, you were five years into your spinal muscular atrophy journey. I was so impressed with how your family handled your situation. You seemed to be coping well and living full lives. Was it always that way?
Val: No. The very first year, we didn’t live at all. Her condition was very unstable; each day seemed like her last. But at eleven months, something happened. Haley was so sick, worse than we’d ever seen her. We called her pulmonologist and told him what was going on. He told us to prepare for the worst, that we were likely approaching her final hours. Then her pediatrician examined her and diagnosed her with a simple ear infection.
Jeff: I looked at Val and said, “This is nuts! We can’t live like this! We can’t keep waiting for Haley to die. We have to appreciate the fact that we have our children and live every day to the fullest. When it happens, it happens. We will all die at some point, but we can’t sit around and wait for it.”
Val: From then on, for the sake of Haley, for Kelsie, and for our marriage, we fought to find a new normal. The doctors gave Haley a life expectancy of two years. She lived for thirteen. Can you imagine if we had lived those thirteen years waiting for death like we did the first? We would never have made it!
KOJ: What were some of the things you did to find life—that “new normal”—again?
Jeff: As you know, we bought a travel trailer so we could take Haley to the lake with us. Waterskiing is a big part of our family’s life. The trailer gave our family the freedom to be together at the lake. It kept us involved and active.
Val: We also tried to keep Haley involved with kids her age, like taking her to school on special days. We made an effort to do things without the fear of what may happen.
KOJ: I’d like to talk a moment about your faith journey. Did you ever struggle to hold fast to your faith?
Val: Sometimes. When Haley was first diagnosed, I found myself drawing closer to God. He was my comfort and strength. I ran to Him for help. But as time went on and life got more and more difficult, the worries of this world pulled me away from seeking God. Exhausted and overwhelmed, I started to ask why—“Why us, God? Why Haley? Why don’t You just take this away?” But even in the midst of my why questions, I still believed in the faithfulness of God to see us through.
Jeff: I think anybody put in those circumstances would start to question God about some things. Christians are often taught the “rules of faith,” but when those rules are challenged, your faith gets real personal. All of a sudden, you have to figure things out. It’s not as cut-and-dried as you once thought. I had to do some real soul searching and find answers to a lot of questions…especially about the character of God.
KOJ: And what did you discover?
Jeff: I found out that God doesn’t push little old ladies down the stairs!
Jeff: (Laughing) I recently heard a pastor tell a story about an elderly lady who fell down the steps of her church. She ended up dying. People in the congregation kept saying how God had allowed her to fall and die for a reason, that He had some great purpose in it. The pastor telling the story got quiet for a moment, and then he said, “I don’t believe God pushes little old ladies down the stairs.”
I agree. Throughout our journey, so many well-meaning Christians said similar things. Their words didn’t help. We’d hear things like: “Everything happens for a reason.” “God has a plan. “God doesn’t give you more than you can handle.” Those easy answers cut deep.
Val: Oh, and then there was, “God gives special children to special parents.” It was horrible! I mean, who really wants to be that special! We both started questioning that Sunday School mentality of God being behind everything. The fact is, sometimes bad things just happen, even to good people. But that doesn’t mean God sent it, that He’s punishing us, or that He wants to teach us some great lesson.
Jeff: God did not cause our daughter to have spinal muscular atrophy. This evil, sinful, disease-filled world is to blame. Through our spinal muscular atrophy journey, we concluded that our God is good. He is full of love, and He is kind. He gives good gifts to His children (Matthew 7:11). Spinal muscular atrophy is not good or kind.
We could have spent so much time trying to figure out why Haley had spinal muscular atrophy and who caused it. But none of that really mattered. What mattered is that we allowed God—who is love and who is good—to come into our situation and shepherd us through it.
KOJM: How did you see God’s hand shepherding you?
Val: God certainly worked through people. He sent people who had been through similar journeys with SMA to help us…to comfort us. They were like angels. We also experienced the love of God through people in our community. God’s love through people overshadowed the darkness.
Jeff: It was uncanny how many situations would pop up “out of the blue.” There was just no way they were coincidences—a call from a stranger, a visit from a friend, a message from a sermon, a verse, an encouraging word from a friend—they just seemed to come at our greatest moments of despair. God always knew what we needed to keep going.
And God used Haley to encourage others to be more thankful. She taught many to stop whining about the insignificant things of life. He also led us to help others in their spinal muscular atrophy journeys. As we’ve allowed God into our situation, many blessings have come.
KOJ: What did God teach you through Haley?
Jeff: Haley dealt with a lot of discomfort and illness everyday. There were days when just breathing was a struggle. But she never whined, complained, or even acted frustrated. When she would go into respiratory distress, we had minutes to turn it around or she’d die. As we’d work on her, she would just look at us with complete trust. There was no panic in her eyes. Haley taught me what trusting God looks like. It’s resting in His arms when your world is falling apart.
Val: Haley taught me to love life despite adversity. People would look at Haley and say, “I wouldn’t want to live like that.” But we knew Haley wanted to live! She loved life and fought to live every day.
Haley has shaped how we all live. Kelsie is just completing her Masters degree to become a speech pathologist. She is motivated by her experiences with Haley. Her favorite quote is, “If you can, you must.” We all feel an urgency and responsibility to do what we can to help others.
KOJ: What is your favorite memory with Haley?
Val: I’ll never forget the day that I took Haley to school for her birthday. She was in the second grade. The kids were so excited to see her. A line of little girls had their hands on the wheelchair, helping me push Haley along the path. Some would hold her head. Then they’d stop, switch positions, and we’d continue on. I thanked the girls for being so kind and helpful. Then one little girl looked at me, smiled, and said, “Oh, Mrs. Mitchell, we love Haley. She is just so…so…perfect! These little girls didn’t see Haley as a disabled child. They saw her with God’s eyes.
Jeff: I always loved watching her reaction to people. Haley was physically disabled—she couldn’t move or talk—but she was very bright. When people saw her, they almost all assumed she was mentally incapable of comprehending what was going on. They would talk to her in loud, slow voices and treat her like a baby. Haley was so patient, but occasionally, she would have enough. She’d look at us with this certain look, and then roll her eyes back. Sometimes she’d close them and completely check out. It was too funny.
KOJ: I so appreciate your talking with us today and sharing your story with our readers. Is there anything else you’d like to tell them?
Val: I just want to encourage people to look at disabled people with compassion, like those little girls. They weren’t afraid of what they didn’t understand. They asked questions so they could know what was going on. I wish adults had that same compassion and empathy for others. If they would just take the time to ask about the things they don’t understand and love those who are different, they would learn a thing or two about how to live.
Jeff: I want people to know that it’s possible to thrive in the face of adversity. Our marriage is stronger and our lives are richer because of our family’s fight with spinal muscular atrophy. With God and a heart that’s determined to live well and love well, all things are possible.