"Daddies are supposed to fix things, but I couldn't fix this."
Larry and Barbara Voss had just moved; they were settling into a new neighborhood and a new church. But within weeks of making this major life change, their lives were turned upside down.
They went from parenting a healthy 5-year-old to caring for a very sick little girl. The Voss family credits their faith, their neighbors and their church family with helping them get through the dark days of their daughter Laura's illness and death.
"You want help," Barbara confesses, "but you don't always know what you need. And sometimes it never crosses your mind that someone could help you." For Barbara, help might have meant someone stepping in to tutor her other children. "For three years I was so focused on Laura that I didn't realize her brother couldn't read."
The secret to helping a family with a sick child is to realize that the rest of life continues. Parents go to work, siblings go to school, and dogs are walked. Friends and family are desperately needed, but they don't always know what to say or do.
The worst thing is to say nothing. "People are afraid to say the wrong thing, so they just ignore you," Barbara says.
It's tragically common for parents of sick children to become isolated. And sometimes, people do say the wrong thing. "One woman told me, 'I'm so glad my daughter's OK,' " Barbara says.
In addition, well-meaning friends suggested that the family not get too "attached' to a dying child. The friends didn't want to offer false hope, but conveying a positive attitude doesn't necessarily lead to false hope. Barbara's advice: "Be sensitive and tactful."
Larry's suggestion: "Don't feel like you need to talk; just listen."
Often friends misunderstand a sick child's treatment process. Most cancer patients live at home, go to school and participate in normal childhood activities. Outsiders should treat these kids like normal children.
Don't assume that something you'd find helpful will be helpful to someone else. Ask first! "I clean to decompress, so I didn't want friends to straighten up, " Barbara says.
Larry agrees. "Doing stuff around the house was therapeutic. Most of the time, Laura was with me, and it was good to do normal things together."
If the treatment center is out of town, a family may need someone to watch the house, collect mail, mow the grass or water the plants. Often one parent may stay home to work and look after the other children. Be specific when offering to help, not merely saying, "Call if you need anything." See if you can do laundry, shop for groceries, return books to the library or pick up dry cleaning.
Besides an ill child's regular treatments, there are also emergency room visits. Give the parents your phone number and offer to be on call, day or night, to watch other children or drive to the hospital. Ask if you can set up a phone or email tree or establish a special voice mailbox for friends to hear updates. Organize friends to prepare meals and keep a chart of who will babysit or drive children to extracurricular activities. Remember to list everyone's phone numbers!
Don't be offended if parents refuse your offer. If they say no, try again later. If parents accept your offer, follow through. And remember that this is a long-term fight. Families may need your support for years.
How to Help
"One day you have a little boy with a tummy ache. The next day, your son is dying," reflects a hurting dad on his tragic experience. Read through these tips and encourage a family that might be fighting cancer or another long-term illness.
- Before a visit, call to make sure the child is able to receive company. Don't go if anyone in your family is ill. And don't linger. Unless you are a very close friend, say hello, bring a cheerful present, a treat for the parents and then leave.
- If you are close to the family, sit with them. Bring something to read in case they don't want to talk. Just be there, for whatever they might need.
- Provide prepaid phone cards or cell phones.
- Ask if you can drop off books, videos or CDs. Fill a bag with things parents might forget in a rush to the hospital: note cards, magazines, lotion, toothbrush and toothpaste, hairbrush, slippers, etc.
- Fill a backpack with activity book crayons, scissors, tape, glue, colored paper and hand wipes for the child to pass the time.
- With the parents' permission, ask the child what she might like, then go get it.
- Bring something silly. Temporary tattoos, joke books, Silly String and dress-up items.
- Tape up a piece of butcher paper for visitors to sign and draw on.
- Deliver ready-to-freeze meals in disposable containers with clear reheating instructions.
- Sponsor the family with the Make-A-Wish Foundation.
- Take siblings out for a fun day or send them small gifts and cards.
- Offer your spare room for out-of-town guests who might visit the sick child.