seven experiences can help parents of children with a serious illness.
Writing questions. write questions down as doctors came to us and write down their answers so we could refer to them later.
Reaching out to others. It really helped to get to talk to and hear about kids with same disease That sounded like eons to us and gave us hope that Grant would make it to at least age 5.
Being prepared with answers. It really helps to prepare some stock answers to questions that you get all the time. Here are a few of ours: "I have a respiratory disease, but I'm not contagious."- When asked "Can my daughter catch what he's got?" I would say, "No, but I don't blame you for asking."
Staying away from negative or energy-draining people. It's important to protect your child. People will ask the most unbelievable questions or offer the darndest opinions just right out of the blue.
Acting strong, even when I didn’t feel strong. People must see our family looked "so normal and happy" and never let them see embarrassment or shame on my face .
Nurturing Grant's independence. We helped the child to learn everything possible about his condition and care.
Keeping perspective. It helped me to remember that there is always someone whose plight is worse than mine.
Writing questions. write questions down as doctors came to us and write down their answers so we could refer to them later.
Reaching out to others. It really helped to get to talk to and hear about kids with same disease That sounded like eons to us and gave us hope that Grant would make it to at least age 5.
Being prepared with answers. It really helps to prepare some stock answers to questions that you get all the time. Here are a few of ours: "I have a respiratory disease, but I'm not contagious."- When asked "Can my daughter catch what he's got?" I would say, "No, but I don't blame you for asking."
Staying away from negative or energy-draining people. It's important to protect your child. People will ask the most unbelievable questions or offer the darndest opinions just right out of the blue.
Acting strong, even when I didn’t feel strong. People must see our family looked "so normal and happy" and never let them see embarrassment or shame on my face .
Nurturing Grant's independence. We helped the child to learn everything possible about his condition and care.
Keeping perspective. It helped me to remember that there is always someone whose plight is worse than mine.
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