My Experience at New Hope Center for Grieving Children
By Dana Duffie
My daughter, Sarah, was one of the best people I have ever known. If you had met her, I know you would have loved her. Her smile lit up the room and her loving spirit was like a magnet. People just wanted to be near her. She made them feel happy, she made them laugh and she made them feel like they were really special. Sarah fought cancer twice. She won the first battle, but the chemo that cured her caused the cancer that eventually killed her. She died on September 16, 2002, a few weeks before her 17th birthday.
Even before Sarah’s death, I was aware of New Hope for Kids. I had driven by the beautiful two-story “home” in Maitland many times when taking the girls to visit their dad. After Sarah’s prognosis became terminal, I looked at it differently when we drove by. I wondered if we’d be walking through New Hope for Kids’ door some day. Even though I never for a moment stopped trying to will Sarah to live through prayer and self-determination, I knew I had to start thinking about the chance that she might not. When her body began failing her, when she started fading away from us, I had to accept that as strong as her spirit was, her body was only human. None of us can assume to know God’s plan, the Big Picture, and I began to see that my prayers were going to have a different answer than I had wanted. Not long before she died, knowing we would be temporarily paralyzed and unable to deal with anything after her death, I asked the oncology staff about New Hope for Kids and they all knew about the program. I knew it would be critical in the healing process for Amy.
I tucked this information away. Hospice was called in. I signed a DNR. No mother should ever have to sign a Do Not Resuscitate order for her child. Life can be so cruel.
But in all the cruelty there is also kindness. Hospice helped us tremendously. So did family and friends. Sarah’s doctor was an angel. In spite of all our efforts, four months after we were told her cancer was incurable, Sarah died. A month or so later, I looked at New Hope for Kids website. I wanted to read about it so that when I called I would feel less vulnerable. I wanted to feel more in control of this, I guess because my life felt so out of my control. It helped to be able to see faces and read a little about what to expect. Tamari Miller, New Hope for Kids’ Grief Program Director, called me and we set up an appointment.
My daughter Amy was 8 years old when she and I walked into New Hope for Kids the first time. We felt hopeful that these people could help us, but also a little scared about the pain we might have to relive while being helped. The home it’s in is welcoming and comfortable. So are the people inside it. Tamari guided us to her office and as Amy and I sat down, I thought to myself “I can’t believe there’s a reason for us to be here.” It still felt unreal that my child had died. I knew she was gone, but I couldn’t believe it had happened to our family. I couldn’t believe it had happened to Sarah. How could she die? She was going to change the world.
We watched a short video that day which helped explain New Hope for Kids’ purpose. It was so carefully produced that it wasn’t too hard to absorb what we saw and heard. Tamari sat with us afterwards and we talked a little about what we’d been through and how New Hope for Kids might help us. Amy and I had lived through so much for so long that our grieving had started before Sarah died. We were open and willing to work to rebuild our hearts. And we wanted to do it without losing Sarah. We didn’t want to “get over it” at the expense of forgetting anything. I could see that here we could do that.
Each time we arrived for our meetings, Amy and I chose whether to sit out on the screened front porch or in a big, comfortable living room with the other families until it was time to start. Many times we picked up dinner on the way and ate on the porch, often with another family doing the same thing. Sometimes I sat inside quietly and read a book. Sometimes I just watched the kids. At other times, I talked with the parents. Everyone respected the other’s choice on how to spend that time. Amy usually played, sometimes alone, but more often with another one of the kids. She often ran back to me, to tell me something, get a hug or just “touch base” during a game. When it was time for the kids to go upstairs, Tamari would introduce anyone who was new and then called the kids into their classes by age group. The adults moved into a room downstairs to sit and talk with their facilitator.
The first night I was there I didn’t say much, but as I listened, I knew I was in the right place. At the second visit I told the group more about Sarah, about losing her, how I was doing at that point in my grief as well as my concerns for Amy. I guess shared pain opens an invisible door inside of us, because I felt a connection of spirits that night that was indescribable. A bond was formed between us then, and for some of us it is still just as strong today. New people joined the group; some continued to come, and some only came a few times. But no matter how long anyone had been there, we respected each other’s pain and each other’s healing. This sacred time allowed us to cry without anyone telling us “it’ll be ok” or making us feel like we need to “get over it”. It was also a safe place to laugh, sometimes irreverently, at our own struggles, without anyone thinking we’d lost our minds. All emotions were accepted and understood. Our trained facilitator, Bill, was wonderful. He guided us without controlling us. His experience and training provided our group the knowledge we needed to see that we could survive this. He made us feel that we could climb out of hell.
When we first started going to New Hope for Kids, I was the only one in the group who had lost a child. The others had lost husbands and wives. We were all single parents, though, even if we became that way by different circumstances (I’m divorced.) I wasn’t sure how I could relate to them, or them to me, but we did. Easily. The common thread we all shared was that our hearts were broken and we didn’t know how to survive it. We knew our bodies and minds would go on, but we weren’t so sure our hearts could ever be the same. The truth is, we had to accept that they wouldn’t be. My life was changed forever when my Sarah died. There’s no way I could ever become the person I was before that day. I wouldn’t want to. If I did, it would mean I’d forgotten or ignored her existence and her importance. Instead, I learned how to live with the pain and to make it tolerable while continuing to live with Sarah as part of my life. I would find joy again, but it would be a different color than it had been before.
Amy’s experience was also very healing for her. She was the only one who had lost a sibling, but she learned from the other kids’ healing, as they did from her. When she went upstairs with her new friends, she stayed busy with different activities that helped her find places for the sadness and other emotions she was feeling. Most of the kids would say that the “Hurricane Room” is their favorite place at New Hope for Kids. Amy sure loved it. It was a place for the kids to let out anger and frustration in a way that wouldn’t get them in trouble. They could yell, punch and be aggressive towards the room without hurting anyone else. The quiet activities were also fun for her. She loves crafts and they often used projects to work on accepting their loss. The work the kids do is so well disguised that they don’t always realize the significance of what they’re doing. They might feel distracted by all the fun, but in reality they’re working hard on their grief journey. Sometimes the work caused tears. More often you’d see smiles. But each step was carefully designed to move them forward on their paths to living with their loss.
Adults and children gathered in the downstairs living room after our group meetings. Everyone, volunteers and staff included, stood in a big circle around the edges of the room and held hands. Tamari would make any necessary announcements and ask whose birthday we were celebrating. We’d all sing happy birthday, then the birthday person would start the “love squeeze”, squeezing the hand of one person who then passed it around the circle until it returned where it had started. They’d announce that they “got it!” and then we’d all clap and cheer, then move to the porch for snacks and a little visiting time before leaving. Sometimes this circle was the scene of a farewell ceremony that was bittersweet. Everyone celebrated a family who had decided to graduate. Each person in the circle was given a chance to say something to this family, and often it was a scene of both laughter and tears. We all felt happy for their strength and sad because we’d miss them. And we felt hope that we’d be strong enough to do the same some day.
We always looked forward to our times at New Hope for Kids. After we’d been through all of our “firsts” (first birthday, first anniversary of Sarah’s death, first Christmas, etc.) and even a few seconds, I knew we’d done the work and were ready to try life on our own. Amy and I continued coming for a few months after our one-year anniversary, to get ourselves ready for this change in our lives. It was so hard to leave, but I knew we needed to move forward. I knew we could always come back, and that gave me the strength to leave. It’s comforting to know we have friends who are waiting for us if we need them. Since our own farewell ceremony, we haven’t gone back officially but we have visited. Amy attended the summer camp the year after her graduation and loved it. We even get together with some of the old group for dinner every few months.
Sarah died in 2002 so it’s been awhile since Amy and I began this journey. I’m still sad, but it’s not the same sadness with which I began. Not a moment goes by that I don’t feel Sarah and miss her. My soul has been torn and nothing on this earth will fix it completely. I can learn how to enjoy life again, but Amy and I still miss our old life. It feels like we’ve been taken out of one world and set down in another. This new life will become acceptable in its own way. It will have a new color than our old life did. Maybe not our favorite color, but a beautiful one anyway.
Looking back, I wonder how we would have survived that first year without New Hope for Kids. It truly gave us a reason to feel hope. For me, I found a reason to feel that my heart wouldn’t stop beating, and that I wouldn’t forget how to breathe. I learned that I wasn’t going crazy when I forgot things constantly or became antisocial sometimes. I found out I wasn’t the only one whose laundry piled up or whose dust took over the furniture. And Amy found the strength to face the most painful thing she’d ever experienced in her life. The work she did at New Hope for Kids prevented problems that she will never have to experience later in life. By dealing with her grief in ways that were comfortable and comforting to her, she found places to put her feelings. She learned that it was ok to be sad, but that it was also ok to be happy, and that she was strong enough to feel both. She learned that memories are more valuable than gold. Because of all her hard work, Amy was able to keep Sarah with her. And that’s the best gift anyone could ever receive.