Grace family turns tragedy into life purpose

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“We have three children,” said Jennifer Grace as she sat at a small, round table in a brightly-lit room at Hope Hospice and Pallative Care (HHPCRI) in Wakefield. A box of tissues was in the center of the table. This is a place where Jennifer now spends quite a lot of time, given that she is the new Volunteer Coordinator.

However, her connection to Hope Hospice and Pallative Care began years ago.

“In 2012, our middle son, Cole, was diagnosed with a brain tumor,” Grace said. “The official name for it is Glioblastoma, and it’s a terminal illness. He was diagnosed in January of 2012 and he passed away in October of 2012. We tried to do all the bucket-list types of things, the fun things. He was a child, and initially we were offered Hospice services and they came to our home to help us manage his care.”

At the end of September, however, Cole’s care needs were changing as he moved into the process of actively dying. His family was presented with the option of transitioning him from his home and into one of their inpatient centers. Jennifer and her husband knew that Cole did not want to die at home. With an older sister who was just ten years old, he felt that dying in the house would only add to her trauma.

“Our perception of Hospice in our own heads were something like a nursing home,” said Grace. “And who the heck wants to put their eight year-old into a nursing home?”

However, after meeting with Dr. Edward Martin from HHPCRI, the Grace family, who reside in West Warwick, felt comfortable making the transition for Cole from at-home care to inpatient care.

“He reassured us and made us feel comfortable, and he told us that they would help us to keep Cole comfortable and essentially they would be walking with us through this journey,” she said.

Even today, five years later, Grace is amazed by the positive experience her family had, despite the tragic circumstances.

“This was the most amazing place,” she said. “It was clean, it was modern, it was beautiful. It was not what you’d expect. It was tranquil. The switch to inpatient allowed us to still live the way we lived in our own home. I can’t say it enough about how wonderful the doctors and nurses were, and about the services we received. They let you be you as a family, and our extended family was able to come in and out. Even my dad, who didn’t love visiting at the hospital, visited here.”

Immediately after Cole passed, Grace and her daughter Hunter felt that they wanted to give back in some way, but they weren’t sure how.

“She had been supported by them as well, but I was working full time and she was in school, and we just didn’t know how to give back,” she said. “My grief counselor at HHPCRI, Deanna Upchurch, suggested that we start out slowly and help out at their summer camp, Camp Braveheart. It’s for grieving children up to age 18 and it’s an amazing place. They had offered Hunter the opportunity to attend and receive the services there, but she didn’t want to do that right away. A year later we went and they allowed her to be a volunteer in a group of younger kids at the camp and I went and volunteered as a group facilitator as well.”

Indirectly, both Jennifer and Hunter were benefiting from the services at Camp Braveheart, even through their roles as volunteers.

“It was such a great experience for us, hearing other people’s stories and sharing,” she said. “Hunter felt like she was not alone and even though it was a camp for people who were grieving, at the same time they were doing sports and crafts and activities. After that first season we’ve gone back as volunteers every year since.”

Jennifer was still struggling with her own grief journey and was hoping to connect with a support group for parents who had lost a child.

“There were so many general support groups for people struggling with loss, but none existed just for parents who had lost a child,” she said. “I just really needed to talk to a mom or dad that had been through it. I needed to ask them my questions and hear their answers.”

Upchurch suggested that Jennifer start her own support group.

“So I started one here and it’s been running for three to four years now,” Grace said. “It runs at our Providence location and the people who come to the group say that they are so glad to have the group. They were looking for the same thing I was looking for. We get people of all ages who have lost children of all ages, and we meet once a month. I am hoping to eventually start one at this location in South County, too.”

Despite all that Jennifer was doing to give back, she still felt that she hadn’t quite put her finger on what her ultimate purpose was. She was searching for where she was meant to be, but wasn’t yet finding it. Before the death of Cole, she had worked in the restaurant business, a place she loved, both for the connections she felt to the customers and for the support she received from her coworkers through such a difficult time in their lives. However, when she returned, the work seemed meaningless to her and she had to move on.

“I began working at both Kent Hospital and Newport Hospital,” she said. “I didn’t care where I worked at the hospitals, whether I was registering patients or working in the ER or in the cancer center. I just wanted to be there. I loved it.”

Jennifer continued to volunteer at HHPCRI as well.

In November of 2017, a position at HHPCRI opened up for a volunteer coordinator. Those at the center knew that Jennifer would be a great match and asked if she’d consider applying. The only sticking point: she’d just had a baby.

In October 2017, five years after the death of Cole, Hazel Grace was born and the Grace family was celebrating her birth, along with all of the little signs of Cole that came with her. Hunter would soon be 16. If the timing were slightly different, Jennifer would have jumped at the chance to work at HHPCRI, a place that had been a lifesaver for her family as they were reeling through navigating their life’s tragedy.

They agreed to wait for her.

In January 2018, Jennifer accepted the position, and in doing so, found her life’s purpose, the perfect fit for her work and her continued journey through her own grief and a way to help others navigate theirs.

“As soon as we had this experience, I said to Deanna, ‘I know I belong here, I just don’t know where, yet,’” Jennifer said. “I was sad to leave the hospital, but I really believe this is my purpose. This is the next chapter of my life. It may sound silly, but I believe that when you lose a child, the ones who are lost are a little bit extra-special. All children are special, but with Cole, I truly believe that he was telling me that I was going to be doing something. He was giving me guidance, but I wasn’t sure for what. Now, I know. I have received their services, I have been a volunteer, and I am transitioning to being an employee.”

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