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 SMA 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 sicker than we’d ever seen her. We called her pulmonologist, who told us to prepare for the worst, that we were likely approaching her final hours. Then her pediatrician 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 had at first? We would never have made it! KOJ: What were some of the things you did to find life— that “new normal”—again? Jeff: Well, waterskiing is a big part of our family life, so we bought a travel trailer. It gave us the freedom to stay involved and be active together at the lake. Val: We also tried to keep Haley involved with kids her age. We took her to school on special days. We tried to do things without worrying about what might 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 difficult, the worries of this world pulled me away. Exhausted and overwhelmed, I began asking 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 anyone in those circumstances would 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! KOJ: What?! 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.” And I agree. Throughout our journey, so many well-meaning Christians said similar things. Their words didn’t help. We heard: “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 SMA. This evil, sinful, disease-filled world is to blame. Through our SMA 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). SMA is not good or kind. We could have spent our lives trying to figure out why Haley had SMA and who had 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. KOJ: How did He shepherd you? Val: 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 brought light to the darkness. Jeff: It was uncanny how many situations would pop up out of the blue. There was just no way they were continued on page 33 Haley and the Mitchell family, Jeff, Valerie, and Kelsie, have inspired many through their fight with SMA. Together they have raised over $450,000 through the Haley Mitchell Ski-A-Thon. Funds support research for SMA and provide assistance to other SMA families. kojministries.org Issue 2 2017 9
20115AS
To see the actual publication please follow the link above