The death of a child is probably the most wrenching experience a parent can endure. Yet, many parents of children with severe disabilities or chronic illnesses must face the medical prognosis of alimited life expectancy for their sons or daughters. Four Minnesota families share their experience of losing a child in the hope they can help others.
They did not look like the “Gerber Baby,” nor were they as precocious as the neighbor’s
child. To their families, however, Jared Odash, Evan Colón, D. J. Moore, and Scott Jackels
were “beautiful,” and “precious.” Despite the physical, emotional, and financial
challenges they brought to their families, the children were cherished. Their families said
they are grateful for the opportunity to have loved them. “We knew a lifetime of love in a short time,” said Joanne Odash, whose son, Jared, died a week short of 3 months old. She remembers her concern about becoming attached to her child when she learned of his disabilities and prognosis and advises other parents: “Don’t pull back because you’re afraid of getting hurt. Knowing and loving Jared was a rich experience for us.”
How did the families live with a child expected to die? Despite the differences of their circumstances, their answers were similar.
1. Understand the medical realities, but maintain hope.
Doctors told Joanne and Klink Odash that Jared was deaf and blind and would never know them. “But Jared proved them wrong. We brought him home when he was six days old, and he blossomed,” said Joanne. Jared responded to his parents’ voices and made little sounds to attract Joanne’s attention when he heard her. Their doctor later told them, “It’s amazing what love can do.” Evan’s imminent death was “always over our heads” until he was about 2 years old, said Katie Colón. Then she read about a little girl with Evan’s diagnosis who already had lived to age 5. “It gave me hope that we could have a while,” she said. Evan lived to be 7½ years old. When Scott Jackels, who died at age 16, was diagnosed with muscular dystrophy (MD) at age 5, his mother, Julie, said she grieved for “the football player that would never be, the young man never to marry.” For several years, she clung to the outside chance of a cure for MD, she said. Each of the parents interviewed said they relied on spiritual faith as they faced their child’s illness and death.
2. See your child as unique in his or her own way.
“This was our child, and we were proud of him.” Each family said those or similar words.
They also said it was important to them that their child’s life had purpose. Children with disabilities or illnesses often touch people in profound ways, said Ed Colón. “They elicit an incredible response in people and cause them to do things that are extraordinary,” he said. The Colóns said they saw medical professionals, paraprofessionals, teachers, friends, family, and others express love and reach out to Evan and their family in unexpected ways that touched Ed and Katie deeply.
3. Don’t settle for less than the best you can give your child.
“Regardless of the circumstances, you want your child to have the best of what you have
to give. You just never know how much time you have with that child,” said Peggy Moore.
“I feel good about D.J.,” she said. “I know I did all I could as a mother to care for him.”
The Jackels are glad they encouraged Scott’s participation in the celebrations that enriched his life, Julie said. He was confirmed in their church, participated in adaptive sports, and took a date to his high school homecoming. “Those are the things we look back on,” said Julie.
One of Evan’s greatest pleasures was going to school, said Katie Colón. The Colóns realized the danger of exposing him to the illnesses that circulate among youngsters, but they didn’t want to exclude him from experiencing school. “We wanted him to enjoy life and to have the best quality of life. School was part of that,” she said.
4. Find professionals and support that are sensitive to you and your child’s needs.
Ed Colón recommends finding professionals and other parents who can empathize rather than sympathize. They understand that the feelings you are experiencing are part of the process and can assure you that the emotions are okay, he explained. Moore said she had to “get rid of some doctors” before she found the ones with whom she was comfortable. The families also said they depended upon information and support from PACER Center and organizations representing
specific disabilities or illnesses, as well as extended family. Get help from all sources, advised Ed Colón, because each may provide something different.
5. Let your child participate in family life as much as possible.
The families advised including the child in family events and outings. There may be times, however, when it is not wise, they added. Although the Colóns tried to plan trips in which Evan
could be included, his health and the weather often dictated whether such outings were possible. The family, however, took advantage of respite care, which gave them the opportunity to go places with their other children, even if Evan could not accompany them. The Jackels family, too, tried to make allowances for Scott’s illness without infringing on others’ activities. “Scott would
have been a spoiled brat, if I had reared him alone,” said Julie. Curt had more common sense in dealing with some of the issues surrounding Scott’s illness than she did, she said, and he insisted Scott be treated and disciplined like any child.
6. Live day by day.
As she accepted Scott’s illness, religious teachings helped her focus on living each day fully and not be too anxious about the future, Julie Jackels said. She learned to handle one crisis at a time.
Peggy Moore also advised to “not let things pile up.” She said it is better to deal immediately with little problems that are upsetting, rather than to let them accumulate to the point
that they seem insurmountable.
7. Decide what you feel is right for your child and family, and do it.
Whether it is determining a treatment method or planning a funeral, parents need to follow their instincts, said the families. Katie was Evan’s primary caregiver, but the Colóns depended
on nursing care to help. “At first I felt very guilty about using help, but someone who is totally dependent takes a lot of time and energy,” said Katie. “The nursing care helped us provide as normal a life as we could for the rest of the family,” she said. Doctors advised the Odashs to leave Jared in the hospital, but the couple took him home and are “so glad we did.” There they cared for their son and experienced intimate moments as a family. The Moores had D.J.’s body cremated, despite relatives’ misgivings. D.J.’s memorial service was meaningful for her and Dennis, said Peggy. “People who love us had to respect our decision,” she said.
8. Take care of yourself and other family members.
As they care for their sick or dying child, parents need to also take care of themselves, including getting rest, eating properly, and taking an occasional break. It’s important to recognize when you’re reaching the limits of your endurance, said Ed Colón. He also advised each parent to learn to accept help. “You may be reaching the end of your rope and not realize it, but your spouse may sense it,” he said. He suggested that parents be alert to how other children in the family are faring. A change in behavior may show stress or sadness before a child can verbalize it, he said.
The Colón family talked a great deal about Evan’s illness and death. He and Katie wanted their young children to understand the situation. The discussions helped Katie and him clarify their feelings, too, he said. Peggy Moore said she would deal with D.J.’s disability and death differently now than she did three years ago. “It took a lot of work to care for D.J., and I wanted to do it all,” she said. Although Dennis tried to help, she didn’t include him as much as she should
have in D.J.’s care, she said. The Jackelses had a day between when Scott collapsed and when he died to talk about “things that only we could understand,” said Julie. She appreciates her husband’s approval and support in her care of Scott, Julie said. “It is nice to be on the same page as your spouse when you are going through something like this.”
9. Prepare for the death, if possible.
Evan’s deteriorating health warned the Colóns of his impending death. They chose the funeral home and cemetery and planned much of the funeral before he died. Anticipating that Evan would die at home, they informed the coroner of the situation and completed as many legal
responsibilities as they could. They did not want the coroner, sheriff, paramedics, and other strangers coming to their home when Evan died, because they wanted to say good-bye to Evan in “quiet privacy,” they said. Also, they did not want to further upset the younger children. Only one person, someone from the funeral home, came for Evan, said Ed. Grieving families may also wish to prepare themselves for well-meaning, but misplaced, comments such as “His passing was a blessing” or “You’ll get over it.” They might also wish to prepare a response to the inevitable
question from strangers, “How many children do you have?”
10. Grieve in ways that comfort you.
Grieving is as individual as fingerprints or handwriting. Some people need to talk. Others wish to be alone. A teacher, Julie Jackels returned to work two weeks after Scott’s death to finish the last days of the school year. “It helped to come back to my kids,” she said, but added she
probably could not have handled an extended time at school. The Odashs keep mementos of Jared throughout their home and visit his grave often. At Jared’s funeral, Klink wanted to carry the tiny casket himself rather than using pallbearers. The Moores prominently display D.J.’s photo. “I refuse to take it down. It is so important to keep him alive,” said Peggy. She talks often about D.J. to the little sister he never knew. The Colóns found solace in planting trees in Evan’s memory, one at his school and one at a neighborhood park, and in hearing memories about Evan from his classmates, family friends, and relatives. The families said gestures of sympathy such as notes of support and sympathy cards helped the grieving process. They read and reread them, they said. And sometimes the perfect gift comes unexpectedly. A friend gave Katie Colón wind chimes. “I think of Evan’s spirit as I hear them,” she said.
—By Patricia Bill, PACER Center