I visited a recently admitted pediatric patient, 17-year-old Lucía. Here from Mexico City for treatment in Chicago, she was later discharged to hospice in her aunt’s home in a nearby Illinois town. In reviewing the most recent notes for this young cancer patient, I was upset to find that her parents were not here with her. Her dad had died, as well as one of her brothers, and her mom was recently hospitalized. Make-A-Wish Foundation was trying to get her mom here on a temporary visa to visit.
But when I arrived, a large support group of well-dressed cousins and aunties were there. They were all in a celebratory mood. They had brought home-cooked food, and were smiling, friendly and happy. And her wonderful brother, Alonso, who was also her best friend, was by her side.
Yeimy, a beautiful mother of three, lost her hair to chemotherapy. By the time she came to our Pepper Family Hospice CareCenter in Barrington, her hair had started to grow back but was still very short. As a show of support, seven of her family members buzz cut their hair as short as hers, including her 16-year-old daughter Maggy. They did this en masse on a Saturday afternoon at the Barrington CareCenter.
Yeimy's husband was hesitant about having Wendy, their 9-year-old daughter, cut her hair quite that short. Wendy was unhappy about this, but began to search for another inspiration.
Camp Courage is JourneyCare's annual grief support camp that helps children and teens cope with the death of a loved one while having summer fun. Entirely supported by charitable donations, the program helps campers deal with their loss while they enjoy art, music, sports and other activities with friends.
I cannot begin to explain how remarkable Camp Courage is for everyone involved in just a quick blog post. My intention here is to convey what Camp Courage meant to me as a camp counselor this summer, and what I hope the kids can take from camp to use in the future to help cope with the loss of a loved one. The most wonderful thing I observed was how these kids recovered the hope and confidence they may have initially lost along with their loved one.
“I just want her to be comfortable.”
“How much longer will she be with us?”
“God is happy that my brother is with Him now. He is giving my brother a hug and is glad my brother is there to make Him laugh.”
Working in pediatic palliative and hospice care, I've seen that it can be easy for siblings to “get lost” amongst all that is happening when they have a brother or sister with life-threatening illness.
Given the understandably consuming emotions and frequently busy environment, siblings are often left to understand and process what has been experienced or witnessed on their own.
Sympathetic adults often feel at a loss regarding how to disclose a sibling’s illness, or anticipated death, or how to prepare a sibling for such a death — a death that they themselves are still trying to grasp and reconcile.
The JourneyCare Juniors and JourneyCare Youth Advisory Board participated in Global Youth Service Day, the largest day of volunteer service on the planet for kids and teens, with Planting Smiles. As part of Planting Smiles, the two groups prepared potted flowers and inspirational poems to be delivered to JourneyCare hospice patients and their families. JourneyCare has one of the few active Youth Hospice Volunteer programs in the nation, and Planting Smiles was made possible by support from HandsOn Suburban Chicago, Youth Service America and State Farm.
Today, JourneyCare Juniors Bridget and Annie, 10-year-old twin sisters, detail their experiences and discuss why they choose to volunteer:
My daughter Olivia died last December, just a few days before her third birthday. We had been working with JourneyCare for about a year and my entire family is so grateful to have had them in our lives. Hospice gave us a safe and trusting place to talk about all the difficult things that would arise in Olivia's life. It allowed me and Olivia's dad to have ongoing conversations about what kind of life we wanted for her, and it empowered us to do things that we might not have done with her had we never met her JourneyCare team. We were able to go on trips with her ― even taking her to SeaWorld because she loved the aquarium.
Like the Bee-Gees famously said: You should be dancing! That advice will be especially true on April 2, when JourneyCare hosts our annual Decades Dance that will celebrate the grooviest era of them all, the 1970s.
Of course, you should put on your boogie shoes so you can enjoy a night of music by Libido Funk Circus, cocktails, dinner, auctions and even prizes for the grooviest outfits.
But the most important reason you should head to this boogie wonderland (which will be The Stonegate in Hoffman Estates) is to support JourneyCare’s All About Kids pediatric care program.
Children can, and do, grieve and children process their grief through play. Two concepts that my training has taught me and two concepts that I have witnessed firsthand countless times as a child life specialist. Yet, somehow, these two concepts became more real to me than they ever were as I sat with a five-year-old sibling of a three-year-old hospice patient in her backyard, providing support as she learned that a frog she caught and had been caring for had died.
She talked about playing with him the day before, how he seemed to really enjoy the dirt, and how sad she was that he had died. She cried as she talked about how much she would miss him; kissed him as she talked about saying goodbye. We picked flowers, prepared his resting place, and said what we would miss about him. Throughout the interaction, she discussed the parallels between her brother’s anticipated death and the death of her frog. She cried for both as she attempted to reconcile what was to come.