Most people have a connection with music. Music can calm us: think about the lullabies we sing to our children. It can excite us: think of the huge crowds that jump and cheer at concerts. And most certainly music can cause us to be nostalgic: think about how often we hear a song and think, “Wow, that brings back memories!” For those who play and create music it can be an emotional outlet. Music connects.
Music has always been an integral part of our family. Olivia plays the flute, sings and tap dances. Dominic plays the bass guitar and sings. And Jerome has made a living at being a musician, both as director of Liturgical music at Saint Michael’s College and with various Jazz ensembles in the Burlington, Vermont area. My name is Claire and even though I don’t play a musical instrument, I’ve dabbled in singing in our church choir and love to listen to live music, especially if the musicians are my husband or kids!
To many, a connection between Crohn’s disease (IBD), ImproveCareNow and music may seem unusual. To us it’s natural. We would like to share with you the story of how IBD has impacted our family and how it lead us to become passionately involved with ImproveCareNow. And, of course, how music is an integral part of our journey.
In the Fall of 2013 we spent quite bit of time at our kids’ school chorus and band concerts. Our daughter, Olivia, proudly stood in the front row, noticeably shorter and thinner than most middle schoolers, who were starting to go through dramatic growth spurts. When nausea, fatigue, joint pain and weight loss became the norm, we knew something wasn’t quite right.
Olivia’s pediatrician was quick to suspect IBD and promptly sent us to UVM Children’s Hospital to see a gastroenterologist. We live in Vermont and at the time Olivia’s Dad, Jerome, was in California recording with jazz greats Jeff Lorber and Jimmy Haslip. When I called him, he started to enthusiastically chat about what an amazing experience it was being in California, recording with two of his favorite jazz musicians. When he asked about how the kids were doing, I mentioned to him that we had been to several doctor’s appointments in the past few days, and then I told him that Olivia had been diagnosed with Crohn’s disease. While we were on separate coasts that was the very moment where the focus of our entire family shifted…mostly because we knew very little about this disease, and quite frankly, had no idea what the future would look like.
When Jerome returned home, we met with the physicians and nurses at UVM Children’s Hospital. Even though the diagnosis had a profoundly negative impact on us, we found solace in the great care, compassion and expertise of the entire hospital team.
Life changed in an instant. While Jerome and I were desperately trying to cope, Olivia seemed to remain the strongest. She bravely endured the colonoscopy (though she’ll never drink Gatorade again), an MRI, and infusion medications. It was this very strength and bravery that inspired Jerome to put together an album of original compositions dedicated to Olivia, entitled Guitar Chant.
I, too, needed a way to get involved, give back and support the amazing work of the physicians, nurses, and staff at UVM Children’s. When I was asked to be a part of the ImproveCareNow team at UVM Children’s I jumped at the opportunity. Now every time Olivia sees a doctor or has an infusion, it’s not just a simple appointment. Being part of an ImproveCareNow hospital gives us comfort in knowing that “behind the scenes,” and every single day, there is a group of doctors, caregivers, parents and patients that are working tirelessly with one goal in mind: to improve the quality of life for kids with Crohn’s disease and ulcerative colitis.
Just as music connects us, so does ImproveCareNow. It connects kids with Crohn’s and ulcerative colitis all across the US, UK and Qatar using large amounts of shared data to improve their lives. It connects parents with care teams so they can share their knowledge and experience to help make real improvements.
My involvement in ImproveCareNow and the production of Jerome’s CD, inspired by Olivia, are connected. We have decided to use the proceeds from the sale of Guitar Chant to support the work of ImproveCareNow. We have seen firsthand what a difference ImproveCareNow can make in the lives of children and families living with Crohn’s disease and ulcerative colitis. We invite you to connect with us, through music and in support of ImproveCareNow. You can listen to and buy Guitar Chant here. Thank you for reading.
site by al teodosio – videos by rupplebon