The Unexpected Gift Of Chronic Illness
“It was really rough. I was losing my ability to do anything. And in a way, I felt like I was losing my identity because I couldn’t be Emma the soccer player, or the gymnast, or the dancer, or the actress. I had to work hard to find my identity in God instead of what I had the ability to do. I struggled a lot with why did God make this happen to me? And Why me? What did I do?
I sat near Emma’s petite frame, curious to hear God’s story in her life. At the young age of thirteen, Emma lives with not one, not a few, but fifteen simultaneous diagnoses. All are stemming from one rare disease for which there is no cure. Where’s the hope in that?! I wondered. I would soon find out.
At the young age of three Emma’s world was plunged into turmoil, but not from disease. When her father abandoned their family, her mom fell into financial ruin resulting in the loss of their house and repossession of their car. Yet, in the presence of hopelessness and hurt, Emma’s mom pointed Emma to the presence of God. She reiterated that God would provide for them and do amazing things in the midst of their chaos. This fact would anchor them in the unexpected storms to come.
One evening during family devotions, Emma expressed interest in wanting to know God for herself. At the age of five, she invited Jesus into her life and hasn’t looked back once — even though life hasn’t been an easy sail.
Emma shared the difficulty of not hearing from her dad for three years. “That was hard. I thought he’d want to see me,” she stated. “But God used those years to heal me, showing me that I didn’t have to be bitter or angry – that I could be free from it, and that I had Him, the King, as my father.” A few years later Emma was baptized on Father’s Day, a day embodying new significance for her.
Then, it began. Between 1st and 2nd grade Emma began experiencing unusual symptoms. Unexplained pain while doing simple tasks such as standing, bending, or walking up steps invaded her life. What was presumed to be typical growing pains turned out to be something unexpected— a rare genetic disease affecting not only her joints, but also her muscles, tendons, ligaments, stomach and heart valves, and every internal organ, causing her daily pain, weakness, fatigue, headaches, sprains, strains, nausea, and GI problems. The issues and ongoing diagnosis’ were overwhelming.
Emma showed me a picture of a zebra. “In medical school, there’s a phrase: ‘When you hear hoofbeats, think horses, not zebras.'” Horses represent simple things, and zebras the rare and exotic illnesses. Emma is the zebra. And just as no two zebras share the same stripes, Emma’s disease presents uniquely. No two cases are the same, making it nearly impossible to research and difficult to treat.
At the age of nine, Emma’s few years of participation in gymnastics, soccer, and dance became a thing of her past.
“It was really rough. I was losing my ability to do anything. And in a way, I felt like I was losing my identity because I couldn’t be Emma the soccer player, or the gymnast, or the dancer, or the actress. I had to work hard to find my identity in God instead of what I had the ability to do. I struggled a lot with why did God make this happen to me? And Why me? What did I do? I already had my father taken away, why did I deserve this? For a while, it was very rough going. I felt so confused, so lost and so hopeless.”
During that darkness, Emma poured her heart out to God and read the book of Job. “God grabbed hold of my heart and showed me I didn’t need those other things for my identity. I was a child of God, and that was my identity. I had a gracious God who died on the cross for my sins, who loved me and cared for me, and who carried me when I couldn’t walk. And that was enough. Even though it was such a tough and miserable time and I didn’t understand why it was happening to me,” Emma offered, “I grew so much closer to God because of it.”
In 2014 when Emma’s health took another downward spiral, making her dependent on a walker to get around, she met a woman her mother cleaned house for who sewed on a vintage sewing machine. Emma was fascinated. Wanting to have taught her own daughter to sew, the woman offered to teach Emma and bought her a machine. Emma was highly motivated. Sewing became a gift. Something she could do while sitting down.
Through her new-found passion, God opened doors. She interned sewing costumes for Centerville’s Town Hall Theater and was later hired to sew costumes for a local church’s musical. As she explained the mechanics of a peasant dress she designed to transform into a ballroom gown, I was stunned at her talent. “God showed me that just because I can’t-do some things it doesn’t mean I can’t-do anything.”
Emma continues to see the gift of God’s presence and provision.
When fear of exercise-induced asthma overwhelmed her before a stress test, He kept her asthma at bay and provided two nurses to aid her when her muscles began to fail, and she could no longer pedal.
When she had to have 16 vials of blood drawn for testing at the Children’s Hospital emergency room late one night, and she felt scared, God brought comfort through a stranger who talked with her and her mom while they waited, and gave Emma a soft, tied blanket she still cherishes today. When she had to have a large tube inserted down her throat, wires inserted inside of her, and no food during a 4-day hospital stay, God provided a nurse who was a believer and Apexer! “That was very big. It was like God saying He was there and that He was placing people who were going to be there and be in my corner. She even came back to visit Emma when she wasn’t actually on duty. I think that was a really cool thing that God orchestrated.”
I turned my gaze from Emma towards her mom, wondering where she was on the journey.
“It’s hard,” she admitted. “I never dreamed I’d have a child with chronic illness. I think the things that happened to me before, with my husband leaving, grew my strength exponentially and enabled me to deal with what’s going on with Emma and to impress upon her that God will get her through all things. I know from personal experience when you think you can’t go a day longer, the Lord will get you through. While I never would have wished for my husband to leave us or all the painful things that happened with it, I think it was definitely preparation for what was to come with her,” she said, smiling towards Emma.
I returned my attention to Emma, wondering what she wrestles with in the dark corners of her heart.
“I wrestle with the fact that God hasn’t chosen to heal me. There’s a part of me that wants to think perhaps He just can’t. But then I have to remember that God is amazing and all powerful – there’s many times I’ve seen that. I need to keep remembering to trust in Him because I tend to just think: ‘Here’s what’s going on, and my options on what I can do.’ Sometimes I forget to stop and pray and trust in God.” Emma quoted Hebrews 13:5-6: “Never will I leave you; never will I forsake you. So we can confidently say, The Lord is my helper; I will not fear; what can man do to me?” Emma paused for a moment, then added, “what can chronic illness do to me. God is there, and He is going to be our helper and provider and healer.”
At times God’s goodness had looked like nurses pedaling for Emma, or people picking Emma off the ground when her walker collapsed. “And that’s enough—just to see the Lord’s goodness in those moments,” her mom stated. “Yes, I want Emma healed, but I’m content just to see God’s goodness. It’s so easy in the darkness to keep getting sucked down, but you need to say, ‘Wait. I’m going to choose to listen to the voice of Truth. I’m going to choose to go to my Bible and choose to read something from it. I’m going to choose to live in thankfulness. I’m going to choose to be obedient. When tears are coming, we choose to take our thoughts captive. We’ve cried for a while, and now we’re going to stop and pray and cry out to God. We’re going to choose to remember that Bible verse that is going to help us get through that moment. We’re going to choose to recount God’s faithfulness such as when He provided that nurse in the hospital. We’re going to choose to be in community, even when it feels hard sometimes.”
Emma thoughtfully added, “Sometimes it’s hard to have to be around other people when I’m standing in so much pain. I’m thinking, how long am I going to be able to stand here before I need to find the closest chair? And when that starts to happen, how am I going to inconspicuously get out my medicine and take it without drawing too much attention? People don’t really understand – they have no idea what you’re going through. But you still have to choose to press on. And to choose to remember that just because people aren’t going through the same thing you are, it doesn’t mean they aren’t going through something that’s equally hard for them.”
Emma concluded our time together sharing how on her 10th birthday they had to drive to Colorado to be with an aunt who suffered a stroke. Before returning home, they visited Pike’s Peak. While driving up the mountain, they stopped at an overlook. Emma had been hoping to see the impossible – snow in July. Once they climbed out on the cliff, it began to snow, and a rainbow followed the snow. “It was such a beautiful moment for us,” Emma exclaimed. “We started singing ‘Shout it, go on and tell it from the mountains, that He is God.’ As we were singing that song, we were overwhelmed at the amazingness of God.”
“That was really a moment we’ve always remembered,” her mom added. “God is so personal! Emma had grumbled all the way up the mountain because she wanted to be home having a birthday party with her friends. But God gave her this birthday gift I’m sure we’ll remember the rest of our lives!”
“And we do recount it a lot because it was such an amazing moment of God displaying His glory,” Emma exclaimed.
As I concluded the interview, I recognized another way God was revealing His glory– sitting right before me, in the package of a thirteen-year-old, chronically ill body.
Author- Jackie Perseghetti
Photographer- Brooklyn Kimberlin
PRAY FOR EMMA || Emma and her family covet your prayers for healing. Pray for the relief of her chronic daily nausea, pain, and weakness. Specifically, Emma’s goal is to be able to stand during the whole time of worship at the gatherings.
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