August 8, 2023

EveryStep Provides Support as Family Grieves a Child's Death

Rita Fredericks had a normal pregnancy, and she and her husband Nate were looking forward to the birth of their second son. At 8 to 12 weeks of age, doctors discovered Miles had an extremely rare genetic mutation. “It was something we were not prepared for and didn’t know about,” says Rita. “His mutation led to severe disabilities. He had a lot of trouble with seizures, and he was deaf and blind.” Miles was also nonverbal and intellectually disabled. As he grew, he used a wheelchair and feeding tube.

“He was really well loved,” says Rita. “He really liked to swim because it was good sensory input, and he could move freely. He could feel the water and that brought him joy.” Miles also loved swinging, feeling textures and smelling flowers, especially lilacs, which always bloomed around his birthday.

As he grew, Miles had a lot of respiratory illnesses that were complicated by his low muscle tone. Miles battled RSV and coronavirus in late 2021 and early 2022, and when he came down with a cold in the fall of 2022, his lungs weren’t strong enough to fight it. “After two pediatric intensive care unit hospitalizations, we were given the choice to put him on a ventilator, but we didn’t feel the quality of life that we strived for would be there. At that time, we elected hospice.” Miles passed away within six months at age 7-and-a-half.

Though the family received appreciated support after Miles’ death, Rita, Nate and then 12-year-old Liam felt isolated in their grief. They turned to EveryStep’s Amanda the Panda program and participated in its group support sessions.

“It was a different level of understanding in the group. You learn things that help on the days that are really hard — and you learn that there are going to be really hard days — and that it's normal,” says Rita. “I was also reminded that it’s okay to move on from the sadness and be happy at some point without our loved one because that idea alone comes with a lot of guilt.

“They understand that we can be okay and at the same time can still be sad that Miles is gone. We can be okay and sad. That was very meaningful and important for us to hear.”

Rita and her family attended two six-week grief group sessions and plan to attend more. “It is more powerful than people realize because the whole world moves on around you, but you don't want to move on. It’s not that you want to stay stuck in sadness, but it's scary because people don't keep talking about your loved one because they don't know what to say. It’s just nice to keep them in the forefront and talk about them with people who understand.”

Support groups are hosted at EveryStep Hospice locations in seven Iowa communities and at the EveryStep Grief & Loss Services office (home of Amanda the Panda) in West Des Moines. EveryStep’s grief support professionals can also provide helpful resources and information for grieving families. All support groups are free and open to the public. Call 515-223-4847 to reach EveryStep Grief & Loss Services, or visit the registration page to request resources.

If you or someone you know is struggling to find the support they need, please contact EveryStep at 515-558-9946 or complete the commitment-free, confidential Find Care form. EveryStep staff will follow up with a phone call to answer your questions and provide assistance.