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Caroline's Story

Caroline
quote from Abigail

This is a transcript of a video from the Growing Up with Epilepsy Web site. For more information visit http://www2.massgeneral.org/childhoodepilepsy.

Mary Gene: Hi, Abigail! Hi, Cass! She's over here.

Caroline: Did you catch a fish?

Mary Gene: Go find out.

Cassie: My younger sister, Mary Caroline, has epilepsy, Aicardi syndrome and learning disabilities.

Cassie: Can I have a hug?

Cassie: It affects her brain because she can't learn as fast as other people, and it causes her to have seizures.

Abigail: Caroline, that's the boat that we went on today.

Abigail: When she has a seizure, she sort of shakes, and after she has it, she, like, falls asleep.

Mary Gene: We have three daughters. We have Abigail, who is eleven, Cassie is nine, and Caroline will be seven next month.

Mary Gene: Find out if Cassie caught a fish.

Caroline: Cassie, do you caught a fish?

Cassie: I didn't catch a fish, but I caught a shark. Actually, I caught two sharks.

John: She started having seizures at age three months and was diagnosed shortly thereafter with a neurological disorder called Aicardi syndrome. Seizures and therefore epilepsy are part of that diagnosis.

Mary Gene: Take my hand, please.

Elizabeth Thiele: Aicardi syndrome is a very rare disorder that we believe is a genetic disorder, although the gene has not yet been identified, that affects only girls. And that has affected Caroline's family, mainly because the seizures have affected Caroline's family.

Mary Gene: The seizures right now are coming weekly. A few months ago she was having them several times a day. A year ago, she was having one every three weeks. So, it just is constantly changing.

Mary Gene: May I have...?

Caroline: May I have...

Young Woman: A cookie?

Caroline: Cookie.

Young Woman: Sure.

John: We don't know what every day will bring, how she'll be that day, whether she'll have a good day or a bad day, whether the meds will be working, whether she'll sleep or not sleep, which has a big impact on sort of quality of life, day in and day out.

Caroline: On your mark... get set... go!

Nicole Danforth: Epilepsy is an illness that affects obviously the child and clearly the parents. But an often forgotten sort of player in it is the child's siblings. We try to treat the entire family system, which is patient, parents and siblings, because epilepsy can have a profound impact on the lives of everyone in a family.

Abigail: Abigail or Cassie?

Caroline: Cassie.

Abigail: No.

Abigail: The epilepsy affects our whole family because we have feelings that most people don't have about seizures and stuff.

Mary Gene: There's a lot of worry. Their worry will be as small as, you know, "Gee, I hope we can actually make it to the playground today" to " Is she going to have a seizure and not come out of it?" That's deeply ingrained in all of us.

Caroline: Fishy, fishy, cross the ocean.

Cassie: Caroline, try to get me.

Danforth: Siblings can feel embarrassed. They can feel guilty, they can feel badly. And they can worry about their sibling's health.

Cassie: Sometimes I cry. I get really scared sometimes, and I ask my mom, is Caroline going to be okay? And she... and if it lasts more than, like, two minutes, sometimes she says, "I don't know." And it scares me.

Girls: Dad!

John: Hey...How are you?

Girls: Good.

John: Good day?

Girls: Yeah.

Danforth: Siblings can often struggle with their own feelings, which, interestingly, they often keep to themselves, because they don't want to worry Mom or Dad further. Because they see a lot of distress in their parents, and they sense that there's a lot of worry.

John: Slap five. Ohhh... Ow!

Abigail: Sometimes I feel worried about my parents when they have to stay overnight and stuff, and they don't get any sleep or they're really scared, and they can't really show it.

John: Caroline?

Caroline: What?

John: How was your day?

John: I think the biggest concern was, they were showing some behavior that...I don't think it was resentment towards Caroline, but it was just a difficulty in accepting it and understanding it.

Mary Gene: Nice.

Danforth: We encourage parents to talk about the epilepsy in the family and to normalize feelings that the siblings might be having.

Cassie: I'm real scared.

John: What? It scares you?

Cassie: It scares me sometimes.

Mary Gene: I think it's important to talk with them because it empowers them when they are heard. And also we decided we needed to make sure that they had support. And we learned about sibling groups and decided it would be a great way for our kids to interact with other kids who had siblings with disabilities.

Abigail: Me and my sister go to a group, and it's called a Sib Shop. And we go and you talk about your brother or sister, and you learn about other kids' problems that they have with their brother or sister.

Danforth: The siblings absolutely loved it. It was like a sense of relief. And that's the first thing we noticed was just this, "Hey, I'm not the only one. I'm not the only one who is ashamed of my sister at times. I'm not the only one who worries that my parents are worrying so much." And that sense that, again, you know, "there's somebody else out there just like me."

Cassie: It helped me feel better about myself, because I knew that I wasn't the only one on the earth who had a sister with disabilities.

Cassie: Caroline, can you fold this napkin like that?

Danforth: Our hope is that the sibling, by feeling, "Now I know a little bit more. I understand a little bit more and I'm not the only one who's got these worries," can now go back into the family and understand their role a little bit better.

Cassie: Good job.

Cassie: I get to be a big sister, not only to a girl with Aicardi syndrome, but somebody who I get to teach new things.

Mary Gene: Caroline, carry this out to the table, please.

John: They've grown to understand what epilepsy is. We wanted to try to help their relationship with Caroline directly, too, so that they would be in a position to have a better individual relationship with Caroline.

John: Caroline, can you say grace?

Caroline: God is great, God is good, And we thank Him for our fruit.

John: That was awesome. Caroline, awesome job.

Danforth: We also try to encourage parents to remember that you are a parent of all of the children in your family, and that the child who doesn't have epilepsy, while that child is affected by the epilepsy, that child has his or her own strengths and his or her own interests, and those need to be nurtured just as equally as that of the child with epilepsy.

Mary Gene: We do try to look at each child, see what their real interests are and support them in them. And separate them out a little bit so that they each have their chance to shine. And we make sure that when it is that person's turn to shine that the others are there to support them.

Cassie: Caroline, I'm gonna do a flip.

John: We have a lot of challenges, but we have a good quality of life right now. We don't have to wait for the future to wonder whether it's going to be a good quality of life. That will continue. Maybe not in the way that we initially anticipated or thought of prior to Caroline's diagnosis, but in a way that is rewarding to us individually and to us as a family.

Girls: Ashes, ashes, we all fall down. (giggling)

Abigail: Hey, you didn't fall down with us.

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