Spirit and Song, Part 1: Hope's Song

Bear witness to the love, grace, and lasting joy God calls us to share with one another through the vocal and instrumental gifts of the Notre Dame Folk Choir. Founded in the late 1970s, the Folk Choir serves the University of Notre Dame as one of the principal liturgical choirs, singing every Sunday during the academic year in the Basilica of the Sacred Heart. Following the example of Blessed Basil Moreau, the choir aims to unify the hearts and minds of both our members and the congregations they serve through our song.

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Transcript

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Hi, I'm Tim. I'm Melissa. We have five kids, Haley, Hannah, Heather, Henry, and Hope. When Hope was born, we could tell something was different at first, and we just didn't know what. It was actually kind of difficult having her. It seemed like I would progress, but then not. And then once she was born and they hand her to me, I thought I was just really weak. She was very hard to hold, because she was very, very, like, floppy. And our midwife said, I think we need to go to the hospital. That's all. Think, oh, it might have Down syndrome. It was very obvious that the room that they put us in was Even more than the NICU intensive care, um, they were just not expecting her to make it. It was like one of the hardest days of our life. After a week there, she was still alive. We were able to go home with her. It was literally like total survival the first few years. She was not gaining weight and was failure to thrive within the first couple weeks. She kept getting respiratory, um, issues and pneumonias. That first year, um, was kind of chronic. Um, and then we got a G tube for more permanent feeding when she was five months old. We all pitched in, and by God's grace, somehow we survived that first year. She continued to keep progressing. You knew something was going on, but no doctors really knew. They just kept guessing, and they kept saying, Oh, well, we think she has this, and we think she has that. And then they test for it, and she didn't. It affects everything. Like, there's nothing in her body that's not affected. Most of her bones are very small and tiny and then frail. Her whole body dislocates everywhere. Her knee would just completely go out. The taller she got, the harder the falls were. Her left lung collapses all the time. Then she's had eight airway surgeries. Um, they had to grow all of her face bones. I mean, she's had, I don't know how many surgeries, 30 surgeries or more. I mean, she's She's gone through so much and yet still loves life and still has so much joy and smiles and loves people. We see specialists and they're like, she's functioning and shouldn't. She is just truly a miraculous child. When we were first diagnosed, there was a few medical articles online and some of them were right because there was wrong diagnosis. Partnering with Notre Dame and the Advocacy, the Rare Disease Center and the Advocacy Department. That was our first, biggest breakthrough. Her condition was able to be published on the National Organization for Rare Diseases. So accurate information got to be online. As a whole family, you know, we're, we're willing to just do whatever we can to live our lives open. The more information you get put out there, the better care and the better chance they have at, you know, their life expectancy being prolonged. The older kids have just really, thankfully, all just loved Hope, and we've had to restructure how we would do things, and yet it's brought us together as a family. So we kept trying to ask her, what do you want to write your story about? And we have this painting that my dad painted in the living room of Jesus. She especially loves worship music. So we kind of just It just took her everyday life and her phrases that she always says and praying for things to, for the sun to come up, for it to be all better, for pain to go away, everything. To go shopping. To go shopping. Uh, her life. It's just beautiful to see what she's doing. Hope wanted to express from that. If we wouldn't have had that opportunity, we would have never taken time to do that. Like Hope loves to draw pictures and also loves songs, but I don't know that we would have done a keepsake project like that. We're always looking for ways to. Connect our students to kind of a lived experience of their faith. So when this opportunity came up, it was just a perfect fit for the types of work that we've done with them in the past. We're a liturgical choir made up of about 60 students and we sing in the basilica every week for the 12. One of the things I love about working with the undergrads here is that if you can kind of create the environment just right, they'll come in and they really will, in earnest, offer their best ideas. And that's very much the case of what happened with this song. We love it. When we encounter stories like Hopes, it really challenges us to see the goodness of God, I think. How can we understand the things that are difficult about life next to the things that are great about life? Reading her story and seeing how much hope that hope is filled with, it kind of melts and breaks your heart in the best possible way, because this person is struggling, why aren't they unhappy? What does that teach me about life? Um, what it means to live a good life, what it means to, um, to live a life of faith. All of us were really happy with the form and the harmonies and the melodies and the arrangement and all the things that we hoped would help honor Hope and her story. In this really simple sharing of Words and music made today better for them. On weary nights so dark and alone, I pray to you, Lord, through the unknown. When you feel far from my call, my voice so very small, reaching out to you. And I have hope in my heart, Because I know from the start. The world surrounds me every year, In every joy, in every tear. And when I cry, I know I'm not alone. When the morning rises, it's my soul that recognizes The comfort that I feel comes from you And I have hope in my heart Because I've been known, known from the start The sun will come for me, and the light will arise, and with your love I finally see, when I am lost and scared, you're there, you hear every prayer. To the students, uh, who worked on the song, just, I could just see just so much love that they poured into it. I would hope this song would reach anyone who feels they need it. Getting to sing it, I hope, and her family brought new life to it. I just distinctly remember seeing, um, like, Hope's mom just smiling the whole time. It was so wonderful. This is a blessing that not many of us will get to experience our lifetimes again. It's Hope's song, um, but it was really a gift to all of us. It truly is something we'll treasure. On weary nights, so dark and low, I pray to you, Lord, through the unknown. When you feel far from my call, My voice so very small, Reaching out to you through it all. And I have hope in my heart Because I've known from the start Your love surrounds me every year In every joy, in every tear And when the morning rises It's my soul that recognizes The comfort that I feel comes from you And I have hope in my heart Because As I've known from the start. You make the sun wake up for me. With your love I finally see. When I am lost and scared, you're there. You hear every prayer. You give me voice to proudly sing. Praises for the peace you bring. When I'm feeling so Inside, you fill my heart with song. You give me strength so I can go on. And I have hope in from the start. You make the sun wake up for me. In the morning when I'm rising. With your love I finally see When I am lost at sea. When the day is long, I just say your name, I am always strong, When the sun has set, I don't have to worry, no, Cause you never found I am with you, yeah. Your name that I'll stand on to the end of the world, yeah. Every prayer. Every prayer. Hear every prayer, right?