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"This is a club that you don't want to belong to; but if you do, you're with the best people," Robin Zaborek smiles as she looks at Wayne and June Turner and Rick and Debbie Acevedo. Zaborek, the Turners and the Acevedos share something that they wish they didn't. They have all lost a child with special needs, or in the case of the Turners, children. They are part of a support group, "Special Children, Special Grief," that Children's Colorado Psychologist Elizabeth "Beth" Bennett, PhD, and Social Worker Sarah McSwegin, LCSW, started two years ago.
They started the group after Bennett met two families who had lost children with special needs and had found no sources of support specialized enough to meet their needs.
"Parents who cope well with major differences in their children adapt and adjust in many gradual ways, often ultimately seeing the difference as something of a gift, which has given them perspective, wisdom and joy," Bennett said.
That was a shared sentiment of those who gathered for a recent meeting of the support group at Children's Colorado. To Zaborek, the Turners and the Acevedos, their children were the ultimate gift, and they find that most people aren't able to understand the sense of loss that comes with losing a child with special needs.
"There is grief when you lose someone, and there is a different type of grief when you lose a child. And there is a different grief when you lose a child with special needs. Not only do you lose your child, but you also lose your identity," Debbie says. She spent over 20 years caring for her son Ryan, who had fragile X syndrome.
The parents who meet monthly for the Special Children, Special Grief support group have spent countless hours, days and years constantly attending to their children.
"It was a 24/7 hyper vigilance keeping them alive. We're proud of our kids; we're proud of keeping them alive. It's so devastating (the loss) that you don't even know that you want to go on. Everything orbited around them," Zaborek says. "What I want the world to know is that we don't begrudge what we did."
Zaborek has three other children at home; she and her husband chose to adopt the daughter they lost, Janet Kay, after they had a son with Down syndrome. Janet Kay had autism and Down syndrome and spent a lot of time at Children's Colorado.
Wayne and June Turner also adopted the son they lost, Buddy, as well as four other children with special needs. Buddy had spina bifida.
"For two years, we didn't sleep in our beds because we had to hold my son's jaw open so he could breathe," June says. "His mind was as sharp as can be, but his body was broken. When people asked him what was wrong with him, he'd say, 'Nothing. What's wrong with you?'"
This gets a laugh from the group, but there are also plenty of tears during the meeting.
Debbie says she just wants to organize her grief logically, like she does everything else. She says she'll do anything to tackle her grief. "I just want to know: What's it going to take?"
June tells her, "You have to be flexible with your grief, just like we were flexible in caring for our children. It's going to be a lifelong journey."
June and Wayne have experience with this type of grief. On the day we met, they were remembering their daughter, Lisa, who passed away on that same day in 1986. The Turners volunteer every Monday in the Procedure Center at Children's Colorado. June says she and Wayne decided to volunteer at Children's Colorado because they know what parents of sick kids are going through.
It's obvious it's in the Turner's nature, and in the nature of all of these parents, to give back.
They all express they think it is important to their grieving and healing process to be able to help other families.
"We want to show families that we are here for them. We might not have all the answers, but we're here," Debbie says.
Knowing that there are others who have experienced a loss similar to their own has provided some solace.
Rick Acevedo says, "When we met and talked (with Wayne and June), it was like a mirror; it was really helpful."
The group has shared successes and failures. They have made grief boxes they can give to families who have lost a child. They have tried coloring as a way to reduce stress and anxiety. They are there for each other and are grateful that Bennett and McSwegin have volunteered their time since the start of the group.
"The wisdom and expertise Beth and Sarah lend . . . they are 100% compassionate," Zaborek says.
"They don't tell us how to grieve," Wayne adds.
Bennett and McSwegin deflect any praise back to the group. They say it has been an honor to get to be a part of this special group of parents.
"This group can offer something that no one else in the community can," Bennett says.
Bennett and McSwegin have not been able to find a similar group anywhere in the nation. If you know of someone who might benefit from being connected to the Special Children, Special Grief group, whether in person or via a teleconferencing solution, please contact Beth Bennett at Elizabeth.Bennett@childrenscolorado.org or Sarah McSwegin at 720-777-6869 or Sarah.McSwegin@childrenscolorado.org.
Interested families can also request to join the group's Facebook page.
In addition to the Special Children, Special Grief group, Children's Colorado offers a wealth of bereavement resources to families. You can find more information on the services available on the Bereavement Services webpage.