What do you say to a child that has a life long disease?

I know how she feels in a way due to my kneecap. Sometimes, it has turned out to be a man-magnet (you know, where guys love to put a protective arm around me and help me walk after a recent dislocation to where I'm still limping). More often, it's a painful inconvenience. Thankfully, it hasn't come out in awhile, but I'm usually not expecting it to happen when it does. I was to teach a writing class back in 1989 but had to leave the writers' retreat early because I could barely stand up. It came out another time right in a Chinese restaurant--when Russell finds this out, he will probably say that it was because I was in a Chinese restaurant, because he can't stand Chinese food! That was in 2000. Thankfully, it hasn't budged after that, but it has threatened. Chronic conditions are no fun. Perhaps, your mom can tell her what it was like growing up with epilepsy. Since she can see that her grandma is a full person and not some kind of second-class citizen, she will know that this is something she can survive. Up until you and Julie were 7 and 10, your mom was raising you and your older siblings while dealing with epileptic seizures. So--while life is better without such challenges--Macie should feel reassured that she, too, will be able to lead a full life. Who knows? Some kind of treatment or surgery might come along just as it did for her grandma and her seizures. When she goes to camp this summer and meets other kids going through the same kinds of things, I think this will prove to be a real help to her.

I know how she feels in a way due to my kneecap. Sometimes, it has turned out to be a man-magnet (you know, where guys love to put a protective arm around me and help me walk after a recent dislocation to where I'm still limping). More often, it's a painful inconvenience. Thankfully, it hasn't come out in awhile, but I'm usually not expecting it to happen when it does. I was to teach a writing class back in 1989 but had to leave the writers' retreat early because I could barely stand up. It came out another time right in a Chinese restaurant--when Russell finds this out, he will probably say that it was because I was in a Chinese restaurant, because he can't stand Chinese food! That was in 2000. Thankfully, it hasn't budged after that, but it has threatened. Chronic conditions are no fun. Perhaps, your mom can tell her what it was like growing up with epilepsy. Since she can see that her grandma is a full person and not some kind of second-class citizen, she will know that this is something she can survive. Up until you and Julie were 7 and 10, your mom was raising you and your older siblings while dealing with epileptic seizures. So--while life is better without such challenges--Macie should feel reassured that she, too, will be able to lead a full life. Who knows? Some kind of treatment or surgery might come along just as it did for her grandma and her seizures. When she goes to camp this summer and meets other kids going through the same kinds of things, I think this will prove to be a real help to her.

Information. There are groups for people with the disease and she needs to get into a group with them. She can open up and see that others are affected by disease. Other diseases are diabetes, Hiv infection, people live with these daily and she will learn from people who think about their disease daily.