Capturing memories means everything to the Regan family.
In the Romeoville home of Robert and Cheri Regan, walls are filled with photos of family vacations, holidays and motorcycle rides.
Even the couple’s annual Christmas gifts to their eight children are sentimental photos or other reminders of time spent together.
Often, that sentiment is focused on commemorating Robert’s and Cheri’s son, Brandon. The 29-year-old was diagnosed at age 15 with a degeneration of the cerebellum that causes severe seizures, as well as ataxia that prevents him from controlling his body movements.
Robert and Cheri believe it’s critical to celebrate every moment their family shares with Brandon, who himself believes in living life to the fullest. Since his diagnosis Brandon has had the fortune of meeting his hero, country singer Garth Brooks, and sitting front row at several of his concerts. To spread his gratitude and pay it forward, Brandon and his parents started a charity called Team Beefer Just Smile Inc. – a play on Brandon’s nickname and sunny disposition – to help others living with critical illness also have their wishes granted.
“Our family believes it’s not about what you have or what you accumulate, it’s about what you give back,” Robert says.
But since the Regans chose JourneyCare for Brandon’s care last year, they are finding that agency staff and volunteers love granting patient wishes, too.
This past Christmas, Cheri shared an idea with JourneyCare Child Life Specialist Jennifer Fieten, a member of Brandon’s care team: Cheri had tucked away giant bags of Brandon’s favorite clothes that she had always hoped to turn into quilts for each of his siblings. But she didn’t have the sewing skills to complete the project, nor could she take time away from helping to care for Brandon.
“I had this great idea, but I just didn’t know how to make it happen,” Cheri said.
That’s when Fieten coordinated with Patient Care Volunteer Coordinator Carol Ramsey, who quickly found seven volunteers from throughout JourneyCare’s 10-county service area willing to create the memory quilts as surprise Christmas gifts. Margie Cipperoni, Mary Jo Deysach, Elaine Kurczewski, Julie Milne, Ann O’Callaghan Shoup, Laurie Waldron and Linda Warren dedicated weeks to mixing Brandon’s beloved T-shirts and favorite pairs of pants with decorative fabric. In the end, the women donated their time, talents and resources to make seven quilts – plus a lap blanket sewn by Julie – that celebrate Brandon’s important role as a family inspiration. (See below to learn more about these volunteers.)
When Fieten delivered the blankets to Robert and Cheri, Robert could not hold back tears as he examined the handcrafted work donated to honor his son. Brandon’s siblings also were struck.
“The quilts were absolutely breathtaking,” Robert said. “It’s funny how something so simple like a T-shirt can take you to a time and moment. When each one of our kids got their blanket, they immediately started going, ‘Remember when we took Brandon to McDonald’s and he had these sweatpants on and did this or that?’ They all started telling stories and it was a very emotional time to watch the kids do that. We are so thankful for every day that we’ve got with Brandon, and I’m lucky that I’ve had the pleasure of being with him every day of his life.”
MEET THE QUILTERS
All JourneyCare patients and their families are served by dedicated volunteers, who number nearly 1,500 throughout 10 counties that include the Chicago area and northern Illinois. Like the women who donated their talents to the Regan family (story on Page 6), volunteers provide invaluable support and care to help make moments count for those touched by serious illness and loss. Here, the quilting volunteers share their thoughts on helping the Regan family make the most of their time with Brandon.
- Quilting for 10 years
- Volunteering for two years
“I felt each T-shirt meant a great deal to the family and wondered what event, time or place was to be remembered with each individual shirt. I imagined this person wearing the shirt and being happy at the time. This project involved such a special, caring and compassionate group of women, both volunteers and staff members, and I am honored to be among them.”
Mary Jo Deysach
- Quilting for 38 years
- Volunteering for more than a decade
“I thought of the patient and his family a lot while making this quilt. Judging from the kinds of T-shirts he had, he must be a very fun-loving, sports-oriented young man. I am one of eight siblings and know that each child brings something unique and valuable to the family. I knew this was something I was good at, and that a few hours of my time would bring years of comfort to another person. It’s also important to know that this project would not have happened without dedicated staff members like Patient Care Volunteer Coordinator Carol Ramsey, who did everything from washing the clothing to contacting the quilters and even troubleshooting some challenges.”
- Quilting for more than 20 years
- Volunteering for 15 years and serves on the Board of Trustees
“This quilt did take time and a lot of forethought, planning, measuring, cutting and sewing – but it is a gift I loved giving and would do it again. I hope that it helped our patient’s family, as it was sent along with a lot of love. Any little gift we can give to comfort someone during a challenging time is worth any effort on my part.”
- Quilting for two years
- Volunteering for five years
“Both of my parents, my father-in-law, and an aunt and uncle were all the recipients of the tender, loving care from Midwest CareCenter, which is now JourneyCare. So I’ve had a relationship with this organization since 2002, even before I began to volunteer. When I sew my quilts, I infuse them with love and I play beautiful, calming and spiritual music. For me, this was a spiritual, metaphysical project with a lot of metaphors. As I was deconstructing all the clothing, I was aware how with illness and death our daily lives become deconstructed. And as I looked at all the pieces of fabric and began to create, I thought about all the choices we have during illness and death: we have the choice to create something new, totally different from what we have experienced. I prayed for Brandon and his family as I was creating. I hope Brandon’s siblings feel themselves surrounded by his love when they use the quilts.”
Ann O’Callaghan Shoup
- Quilting for 10 years and sewing for 35
- This quilt was her first volunteer effort for JourneyCare
“I thought so much about the family who would receive the quilts as I was sewing. I hoped that the quilts would bring them comfort, physically and emotionally. I truly believe that memory quilts made with family textiles play a special role in helping a family heal. My dear friend Angie Dahl, who is a regular volunteer at JourneyCare, reached out to me to see if I could help with this project. I have had the honor of being entrusted with creating memory quilts for a family before, so I knew firsthand how personally rewarding this would be.”
- Quilting for three years
- Volunteering for five years
“These types of quilts are challenging and I completed mine with the help of my friend Ginny Flock (pictured left). But when they are completed, the quilter gets a sense of fulfillment knowing the hours of work will bring joy to whoever receives it. God loves a cheerful giver and by giving we are blessed.”
- Quilting for 10 years
- Volunteering for four years
“Before my husband died in 2011, he was cared for at home by this agency. His care was so wonderful and we were so appreciative, so I began volunteering at the reception desk at Marshak Family Hospice CareCenter when it opened in 2012. Oftentimes, I take quilting projects with me and the families – even the men – will start chatting with me because their mothers quilt or they have some connection. Quilting gives families something else to talk about besides what they are struggling with and it brightens things up for them. This particular project gave me pleasure to be able to create something that might bring others some joy.”
SHARE YOUR TALENTS
In addition to projects like this, JourneyCare volunteers provide companionship to patients, help out in the offices, run errands for families and organize special events. Volunteers can choose the schedule and locations that are most convenient for them and that fit their schedules and lifestyles. There are more than 50 volunteer roles. For details on volunteering, call 224-770-2412, email firstname.lastname@example.org or visit journeycare.org.