We’re CSPC members Chad & Elizabeth Schollaert, and this is how we’ve been living deeply.
Elizabeth: “Immediately when the doctor handed me our newborn daughter on November 16, 2008, I knew something was seriously wrong. Her feet didn’t have skin up to her ankles. When I first tried to nurse her, the skin on her chin sluffed off. A few minutes later, she was headed to Children’s Hospital in an ambulance. Chad followed behind in his car. I was left in the labor & delivery room with no baby- and so many fears and questions. Hailey was diagnosed with a rare connective tissue disorder called Epidermolysis Bullosa (EB). Some experts say it’s the worst disease you’ve never heard of, and Hailey had one of the most severe forms. Basically, her skin was missing the Velcro that holds your top layer of skin together. The most prominent symptom is extremely fragile skin that blisters and tears from minor friction or trauma. When Hailey was born, doctors told us her life expectancy might be into her 20s, with some complication related to EB -likely either an infection or skin cancer- eventually taking her. Chad and I were in shock, but there was no time for that- we were about to take this little girl home whose life depended on us knowing how to care for her properly. Eventually we figured it out. As would be the case with any infant, she was just her own worst enemy- she’d scratch her face and cause herself pain. Even taking a bottle would cause blisters, so we had to give her a special bottle covered in Aquaphor to stop her from getting blisters in her mouth. Doing a daily two-hour bath and bandage change became our new norm. You dress these kiddos like severe burn patients because they’re covered in super-deep wounds. You don’t want anything to stick to the wound, because then every time you take it off, you’re just making it worse. That’s the best way to explain how we had to dress her. When we went out in public, people would ask, ‘Did your baby get burned?’ We became good at responding, ‘No, this is just a disorder.’ So we gradually learned how to take care of Hailey for the first few years of her life.”
Elizabeth: “In September 2011, Hailey had a bone marrow transplant. We were hoping her brother Jackson’s healthy cells would engraft and improve her skin. Unfortunately, we only saw improvement for about six months. Things were pretty bleak, but if you were around Hailey, you would’ve never known what she lived with every day. She loved life. She never got bitter or questioned God. After a long, excruciating bath and bandage change, there were even times when she would say she had a ‘good bath.’ For the past three years, she couldn’t eat or drink anything besides water. Yet she somehow still enjoyed asking her friends and family to text her pictures of what they were eating, and she also loved watching cooking shows. Her dream was to become a chef.”
Chad: “I think she just always had hope somehow. Hailey embodied a strength and grace under tremendous daily suffering that was honestly just miraculous. That somebody could endure what she endured without complaining or being angry at us or God was remarkable. We saw it every day. In terms of her mental capacity, there wasn’t any defined issue, but at age 14, I’d say her outlook was more on par with that of a typical eight- or nine-year-old. I don’t know that she would have ever been able to understand the concept of the gospel, but she definitely knew God loved her and knew we were always praying for her. She asked to be prayed for.”
Elizabeth: “She was the bravest person I’ve ever met. So many times, she was hospitalized and given a terminal prognosis, then fought through and beat the odds. But there was much more to Hailey than that, too. She was funny, feisty, loved sitcoms like Friends and The Cosby Show, and LOVED her some babies! And the baby who grabbed Hailey’s heart and never let go was her little sister Tori. Oh my goodness, the joy that baby brought into her life! They were inseparable. When Tori started school, Hailey enjoyed teaching her things. They also watched a lot of Bluey together. Hailey was content just to have Tori around, and I’m thankful for the gift of their relationship.”
Elizabeth: “In spite of everything, Hailey lived a full, happy childhood until the end of 2019, when she started having a lot of complications from EB: serious blood infections and a gut that shut down, forcing her to become 100% dependent on IV-administered nutrition.”
Chad: “She struggled with kidney and liver function, things like that, in addition to her wound care. She almost died three or four times.”
Elizabeth: “She got down to 45 or 50 pounds. Even though she was taking in over 2000 calories a day, her body needed that just to repair her wounds. She wasn’t gaining weight- that was just to keep her alive. We had our five other kids come to the hospital to say goodbye to her several times. Then she would survive and get past it, and we’d be like, ‘Hailey, you know you were about to die.’ And her eyes would get really wide. We were always honest with her -we weren’t making her think she was going to live forever- and she always had a simplicity of mind about it. She was determined to live while she could, and to love life.”
Chad: “That was one of the reasons we brought her home from the hospital a little over two years ago, just to give her a chance to have life, even if it wasn’t much. She drew a lot of strength from being around her family.”
Elizabeth: “This past August, we went to the beach as a family, and Hailey developed a cycle of problems. They weren’t out of the ordinary, but I had a gut feeling this time was different. Then as she kept getting worse, I felt like it was probably going to be the end. Hailey got pneumonia and basically went to sleep. Her carbon dioxide level overtook her oxygen level. The doctors told me that almost put Hailey into a coma where she wasn’t even aware of what was going on. That happened quickly, and she was gone within 24 hours. She didn’t know; she never thought, ‘I’m dying.’ That was a major blessing because I didn’t want to have to tell her. Even more importantly, she wasn’t in pain. Hailey dealt with such pain her whole life. I begged God, ‘Don’t let her experience pain in her death,’ and she didn’t. There was a lot of mercy in the end. I just didn’t want it to end.”
Chad: “God has always been faithful in this journey and supplied whatever we needed. He was always faithful to take care of Hailey. I think, overall, our family’s relationship with the Lord has remained good. But there were a lot of times when it wasn’t great- trials like this will bring up-and-down feelings about your faith. I went through a time about 10 years ago, whenever I prayed for Hailey to be healed, that I put my heart and soul into that. I really tried to have faith that God could heal her and she could have a life that was more sustainable. This was a period when there was a lot of medical research going on to try to help kids with EB, so it seemed like there could’ve been a breakthrough coming to help her. Then, when her health started deteriorating so badly about three years ago, it was pretty apparent to me things weren’t going in that direction. So honestly, it’s been hard the last three years to have the energy or the spiritual gumption to pray for anything besides, ‘God, just have mercy. Have mercy on this little girl.’ That’s about all I could do.”
Elizabeth: “I’ve probably had a tougher time than Chad. I’m more emotional, I guess. For me, the biggest struggle has been just not understanding God’s plan. I thought we were supposed to do the transplant back in 2011, but it seemed like it might’ve actually caused more issues than it helped. And here at the end of Hailey’s life, I think I stayed a bit distant from God on purpose because I just wasn’t sure how to hold my trust in Him. But I never didn’t believe in God. My thought was, ‘I’m going to struggle with you.’ I struggled, and I felt like that was okay to have a struggle with Him, but I don’t think I ever 100% lost faith. I never thought I could live through what I’m living through right now. And I know He’s the only reason why I am. I don’t have any big, great words of wisdom to tell people, but I do think He’s the only reason.”
Elizabeth: “Besides sustaining us through our exhaustion and questions, we continue to see God’s presence in one other very big way. Chad and I have been so proud of Hailey’s five brothers and sisters, who she absolutely adored. She enjoyed all the hustle and bustle of the older kids’ coming in and out, overhearing whatever was going on in their lives. Hailey and Jackson had a special bond because he was the bone marrow donor for her transplant. Years ago, they shared a room and she loved how, each night, he would let her pick one book for him to read to her. Her second brother, Austin, was so good during her final months about asking Hailey how she was doing, even though it would’ve been easy as a teenager to get wrapped up in his own life and forget. Her older sister Lexi was Hailey’s super-close buddy growing up. They would play board games, Wii, and dolls, and watch movies together. The sibling who was around Hailey the most this past year is her little brother Toby. There’s a small couch in the room where Hailey stayed, and on any given day you would most likely find Toby on that couch reading books or playing with his matchbox cars or trains on the floor in her room. She would always keep a close eye on Toby for me when I was busy, and he was super-helpful when she needed help with her phone or the fan, needed fresh ice water or, most importantly, a back rub. (The hours of back rubs Toby has probably given Hailey!) Her siblings not only loved her unconditionally, but selflessly sacrificed a ton for her. We rarely went on vacations. And when we did, they had to make a lot of adjustments for their sister. Their childhoods were very different than most of their friends’, but they never complained or felt sorry for themselves. These kids have represented God’s love and honored Him with their lives, whether they knew it or not. It meant so much to Hailey, and it makes their father and me smile during these hard days. We can see they feel what we feel: that it was an honor to love Hailey and be her caretakers. How we miss her, and long for that day when she can run to us and feel our embrace with perfect skin. No hurt. No pain. Only, and always, joy.”