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Thursday, December 20, 2012
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When a family is hit with a medical crisis, it often feels as though the world is turned upside down. With all efforts focused on caring for the sick child, it’s easy for a family to become worn thin physically and emotionally. Everyday tasks like taking siblings to school, cooking a meal or mowing the lawn take a backseat amidst hospital stays and worried phone calls. It is during these challenging times that friends and other family members’ support becomes invaluable. However, families experiencing medical crises are sometimes too overwhelmed to ask for help or don’t have the energy to think about what they need. Friends and other networks might not even be sure what to do.
“Families experiencing medical crises often think asking for help would be a burden for other people, but it’s important to let family and friends know they can help because they really do want to do something,” says Sandy Clancy, PhD, co-chair of the Family Advisory Council.
For Sarah Santos, she can barely count the number of times she has been offered help for her three-year-old son, Harrison, who comes to MGHfC three times per month for his complex condition.
“As with any new parent, you want to seem like you have it all together, but often times you are just barely hanging on and don’t want to admit it,” Santos says. “But there are simple things others can do that make a huge difference.”
Encouraging words and a sympathetic ear made the difference for Meagan Taylor, whose daughter spent nine months in the MGHfC Neonatal Intensive Care Unit and was then referred to a rehab facility. Nurses put Taylor in touch with another woman whose daughter had gone to the same rehab facility, and the mother spent almost two hours offering Taylor advice on how to make the most of the rehab experience. Having the woman’s support and wisdom not only helped Taylor’s family, but it also inspired her to become a mentor for other MGHfC families going through similar experiences.
“I just listen, answer their questions and try to let them know that they will get through this period in their life. No matter what happens, there will be brighter days,” Taylor says. “Sometimes it just helps to talk to someone who has ‘been there.’”
Debby Cartisser has “been there” for almost nine years. Her 10-year-old son, Matthew, has a rare oncologic condition that causes lock jaw, and the years have been full of ups and downs including three significant surgeries.
“It’s really hard in the beginning when you’re first faced with something like this,” Cartisser says. “You’re no longer part of the functioning, healthy world, and your priorities change. It’s helpful when people are sensitive to the fact that you can’t really worry about normal things or relate in the same way as you did before.”
Cartisser’s family and friends offered her help by cooking meals, having her house professionally cleaned and taking care of her other children. Taking initiative when offering help rather than asking what to do is key, agrees Erin Quinney.
“Asking me what to do is almost more stressful, because I can’t process the day or remember how to plan during periods of crisis,” Quinney says. “When people just step up and decide what I need, it makes the problem solving less stressful. It’s the little things that mean the world.”
Emotional support is vital, but physical care is an important part of the healing process as well. The complexity of medical decisions a family faces during crises is enormous, and families need to be on top of their game, Clancy says. Sleep, food and exercise go a long way, and friends and families can offer to cook meals or babysit while parents recharge.
“Parents might be reluctant to leave their child’s room, but taking care of yourself helps you make better medical decisions,” Clancy says. “All parents struggle with medical crises, so they shouldn’t feel at all inadequate that they need help. Everybody needs help.”
Ideas to Help Families with a Sick Child
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