Monday, November 05, 2018
by Libby Coleman · email@example.com
BJC HOSPICE | Four-year-old Gwendolyn Kramer was born with a rare progressive neurological condition. But that doesn’t stop Gwen and her parents, Erin and Mark Kramer, from making the most of every minute they have together.
To date, there’s no textbook name and no definitive prognosis for Gwen’s condition, but her family knows her time is limited. That’s why the Kramers are grateful for Wings, the BJC pediatric hospice and palliative care program. Wings provides clinical, emotional and spiritual support and services to children who have an acute, chronic or terminal illness and their families.
The Kramers have also developed a support team of family members, friends and caregivers — “Team Gwen” — who enrich Gwen’s life and each other’s. They say they’re grateful for all of support Gwen has received through both Team Gwen and Wings.
“We’re especially thankful to the Wings medical team for providing nursing care at our home,” says Mark Kramer. “This has helped to keep Gwen out of the hospital, which improves her overall quality of life.”
Adds Erin Kramer, “Wings has enriched our life in so many ways and provided us with memories that we will forever cherish. I am so thankful to everyone — the staff, nurses and volunteers who have been there for Team Gwen over the months.”
BJC Hospice nurse Linda Bertram says it’s an honor to be part of Team Gwen. “I feel so proud to be a part of the health care team, but I also feel like part of the family,” Bertram says. “It’s been such a privilege to work with Erin, Mark and, of course, Gwen. She’s the star of the show.”
Lasting memories for hospice families
Gwen also is the star of a hand-painted book, created in her honor by BJC Hospice volunteer and artist Viki Diedrich. The book is based on a song, “Sweet Gwendolyn,” that was written and recorded for Gwen earlier this year as a “Make-A-Wish” request.
Diedrich, who started volunteering for BJC Hospice seven years ago, says she fell in love with the program and the people. As part of the BJC Hospice Lumina life review program, Diedrich uses her artistic skills to create lasting memories for hospice families.
“I am truly honored when I’m asked to create artwork at this sacred time for these loving families,” Diedrich says. “Every time I meet with Erin and Gwendolyn, our visits are filled with joy and laughter.”
Lumina offers both adult and pediatric patients the opportunity to preserve the stories and experiences that define their lives and is offered free of charge through BJC Hospice and the Wings program.
“From producing books, letters and videos, to taking photographs and creating original art pieces, we value the opportunity to develop life review mementos and create little treasures for the families,” says Eileen Spinner, BJC Hospice bereavement specialist. “The treasures that are created are the result of the volunteers’ talent, combined with the families’ requests.”
“I really appreciate the keepsakes that were created for my daughter,” says Erin Kramer.
Paying it forward
And, now, the Kramers are “paying it forward” with the creation of “September Smiles,” in honor of Gwen’s September birthday. Members of Team Gwen put together bags filled with cards, gift cards and superhero capes for other Wings kids and for St. Louis Children’s Hospital Pediatric Advanced Care Team (PACT) patients.
PACT, a team of clinicians with expertise in pediatric palliative care, works together with Wings to provide “an umbrella of care” for patients. While Gwen was an inpatient at SLCH, she was referred to PACT by the neurology team, and PACT then referred the Kramers to Wings.
Team Gwen had hoped to make 10 September Smiles bags for the PACT and Wings patients, but they received so many donations, they ended up making 80 bags.
They plan to make the project an annual event.
Spinner, Lumina program coordinator, isn’t at all surprised by the Kramer family’s generosity. “Gwen’s medical issues can be hard at times, but Erin and Mark are so positive — and Erin, like Gwen, is a ball of joy and positivity,” Spinner says. “Erin and Mark are some of the most inspiring, beautiful, caring parents I’ve ever met.”
Says Erin Kramer, “We are so thankful for all aspects of Wings — the nursing team, especially Linda; the emotional support; Gwen’s snuggle volunteer, Megan; the joyful celebration of her birthday each year; and all of the memory-making moments directed by Eileen.”
And, of course, they’re thankful for every moment they have with Gwen.
For more information or to volunteer for Wings/Lumina, contact Mary Lindsley, 314-953-1671 or firstname.lastname@example.org.
To learn more about BJC Home Care and Hospice, click here.
Number of views (1986)/Comments (4)
11/5/2018 7:35 PM
This is so inspiring and such a beautiful story. I'd love to be a part of this team and even volunteer to help! My heart and prayers go out to the families.
11/6/2018 6:28 AM
That is truly a beautiful thing to do for the loved ones. Those memories will become exquisitely precious.
11/6/2018 6:46 AM
Beautiful story. So touching to see the memories created for these families and the support BJC Pediatric Hospice is providing. Such a difficult situation - with a loving and touching journey. Thank you for all you do.
11/7/2018 3:04 PM
Love the wings team! They were all phenomenal with my nephew and so compassionate through such a difficult time!