The Parent-Child Caregiver Experience

The Parent-Child Caregiver Experience
by Jennifer Hesselschwerdt with Zahara Meghani

Jennifer and James Hesselschwerdt’s approach to parenting their daughter Katie can be summed up in one word, “proactive.” Jennifer Hesselschwerdt vividly remembers that day eight years ago. “When we found out that Katie’s right leg would have to be amputated because of bone cancer, we were devastated.”Faith helped the couple deal with their depression and frustration at the cancer and gave them the strength to support their five-year-old. Supporting Katie meant being completely honest with her. As hard as it was to explain to such a young child what was going to happen to her during the amputation surgery, that is exactly what the Hesselschwerdts did, establishing the roots of a strong, honest parent-child relationship that has flourished ever since.

Concern about how the amputation would affect Katie emotionally prompted the Hesselschwerdts to arrange for Katie to have pre-and post-amputation psychological counseling. After the amputation, Katie experienced severe phantom pain. “I didn’t hesitate to give her the prescribed pain killers, although I know some parents worry about their child becoming addicted to them,” Jennifer Hesselschwerdt says. “I also explored other therapies for phantom pain. I spent hours massaging her stump, applying moist heat, but it was vibration therapy that finally worked for her.”

Worried that Katie might lose the desire to walk after her amputation, the Hesselschwerdts arranged for her to receive a prosthetic leg and physical therapy right after the surgery. Keeping Katie active has been part of Jennifer’s parenting agenda ever since. “I encouraged her to participate in little league baseball, the disabled swim team, wheelchair sports camp and wheelchair basketball. She can’t play little league baseball anymore though because she can’t run as well as the other players, and the running puts too much stress on her left foot.”

To avoid stressing Katie’s left foot and amputated right leg, Jennifer has made sure that Katie’s physical activities at school are appropriate for her physical limitations. “I contacted the Special Education Department for our school district and they arranged for a bus to pick her up, and they have also made sure that the school staff makes various necessary accommodations for Katie.”

Not everyone, however, has been willing to respect Katie’s rights and needs as a person with a disability. “The bandmaster refuses to let her play her flute in the school band because she can’t march with the band. Of course, she is very upset and hurt but I explained to her that people do these kinds of things out of ignorance. I want her to develop a thick skin and strong sense of self, so that in the future, if someone discriminates against her, it won’t devastate her. And I don’t want her to give up hope either because there might be other opportunities in the future, such as playing with the high school orchestra.”

In dealing with difficult situations, Jennifer encourages Katie to use humor. “Sometimes when we park in a handicapped space, we get dirty looks and people make mean remarks. Katie’s attitude is wonderful; she just laughs it off, or occasionally, she will knock on her prosthesis and ask those people if they want to trade.”

Though Katie shows every sign of coping well with her limb loss, Jennifer is aware that her daughter, as a teenager, is very vulnerable to other people’s opinions of her. “She worries about ever finding a boyfriend, so I try to reassure her that it will happen in good time.”

The Hesselschwerdts, like other parents of children with disabilities as well as those with able-bodied children, are committed to providing support and reassurance to their daughter. “Our goal is to make her into a strong, independent person, who can make her dreams come true, and every year we see Katie moving closer toward it.”

This article has been reproduced with permission from the Amputee Coalition of America