Guest Interview . . . My Daughter, Kassandra . . .Epilepsy Awareness Day 27

In taking my daughter, Kassandra and a blogging friend's idea about interviewing my girls on their thoughts and opinions about epilepsy, I give you the first of what I hope will be three different interviews from the three most precious people in my life.

Some brief information about Kassandra. She is my second baby girl, born in July of 1989. She had just turned five in July of 1994 when I was diagnosed in October.

She was three when this picture was taken. We call this the day she was denied bread and milk. Which is not true. She was just not in the mood to get dressed up, have her hair done, and definitely not have her picture taken. Funnily it is my favorite picture of her.

Kassandra is now 28. She lives in California, is active in her church, works two jobs, has a passel of animals, and is an advocate for Type 1 Diabetes. A disease she has been fighting for fifteen years.

I sent Kassandra a email with the questions, I just wrote it in conversation form. I was not having a conversation with Kassandra.



Me: Do you remember how old you were when I was diagnosed with epilepsy?

Kassandra: I don’t think I can remember how old I was when you were diagnosed. But I distinctly remember the exact moment I knew you had epilepsy. It was right after the car accident in CA after church. I remember sitting on the curb and consciously acknowledging that you had just had a seizure. 

Me: You had just turned five when I was diagnosed in Hawaii, and you had just turned nine before the accident happened in November of 1998. 

What do you remember about that time?

Kassandra: I don’t remember how old I was when you were diagnosed so I can’t say I remember what was happening at that time.

Me: That's fair. That time, mainly 1994-1997 seems like a huge blur for me. Except being so exhausted from both seizures and medication. And teaching you girls from bed.

Do you feel like you didn't have a childhood because I was sick? If your answer is yes, what do you feel you missed out on. (You won’t hurt my feelings, I want you to answer honestly.)

Kassandra: I feel like the combination of Dad being gone and you being sick is why I don’t feel like I got a “normal” childhood. But I can’t honestly say that I didn’t have a childhood at all.

Me: I am sure the combination of both of those things would definitely impact the normalcy of a childhood. I am glad that even with combination of a deployed dad and a sick mom that you believe you had a childhood.

Did you experience any teasing because I was sick?

Kassandra: I was never teased for that. Someone would have gotten hurt if I had been.

Me: I giggled when I read your answer, that someone would have gotten hurt. I think I knew that answer before I even asked it. I am very thankful that you weren't teased about it.

If you could go back in time what would you want to change, without changing the diagnosis?

Kassandra: I don’t know that I would change anything about THAT part of my life. There are other things I wish I could change.

Me: I hear ya. I have loads of other things I wish I could go back and change, too. Part of me would have wanted my diagnosis to have happened later, when you girls were gone. The large part of me would want to change how you all were parented. I believe had we known more about the impact of seizures on the brain when I was diagnosed better decisions would have been made, which would have changed those things. At least I hope it would have.

Besides wanting your mom to be better what else would you have wanted?

Kassandra: I would have wanted Dad around more.

Me: I know having him deploy with the Navy was really hard on you. I know you missed him while he was gone and counted the days until he'd come home.

How much did you know about epilepsy? 

Kassandra: Nothing. I still feel like there’s a lot I don’t know.

Me: I've talked about it for so long, I guess I just figured you knew about it. I mean more than my brain takes a vacation and I have a seizure. I'd love to hear what you don't know and want to know.

Did you feel your parents told you what the illness was?

Kassandra: No. I don’t remember ever being sat down to have a conversation about my mom being sick. I don’t remember ever being told she was diagnosed. I just remember the instant I realized she has seizures.

Me: That's a big eye-opener for me. While it's not an excuse I think your dad and I were so overwhelmed trying to understand not only the illness, but the medications we didn't even think about explaining what we did know to you guys.
Readers if you take anything away from this interview take that. Kids are smarter than we give them credit for, and are so resilient that we can share what we know to help them not be so scared and understand. Kids have a unique way of blaming themselves for what happens, and being able to put those fears to rest is a big comfort to them.

How did your mom having an illness change you?

Kassandra: It made me more aware. Made me realize that there are a lot of illnesses that people face that you cannot see from the surface. Made me feel like I was taking care of you more than I was being taken care of.

Me: When I'd cry onto the phone to Gramps, my dad, about you and your sisters being exposed to a chronic illness at such a young age, he told me that you guys would be better prepared as adults, which is true. I never wanted you to feel as though you weren't being taken care of.

What would you tell another kid whose mom or dad has a chronic illness?

Kassandra: Be kind. Love them in their weaknesses and flaws because they are trying to do the best they can. Remember it’s not your fault and things happen that can’t be explained. Don’t feel like it’s your responsibility to conquer the illness, you are only a child. God will handle the hard stuff.

Me: Very wise words. Back when I was raising you and your sisters I felt like I'd have what I believed was a few days of seizure control and think I've got it now. Stefani and Kassi don't have to worry so much, and I can take care of them and Kristian instead of them taking care of themselves and her. No sooner did I think that then I'd have a seizure and we'd be right back in the same seizure cycle I thought we'd just left. 

What was your relationship with your mom then and now?

Kassandra: 

Then: Toxic. Destructive. Extremely negative and unhealthy. Huge lack of compassion and understanding on both sides. Volatile and at times violent.

Now: Loving. Positive. Healthy. Great lines of communication. Compassion and understanding for each other, our diseases and personalities. Willingness to continue to learn and grow as our diseases unfold and evolve over time.

Me: It was pretty awful back ten years ago. I was supposed to be the adult and when I look back my actions and attitudes were more like an angry teenager. Which probably wasn't far from the truth considering I hadn't accepted myself having an illness yet I was pushing you to accept yours. 

Thanks for taking time to answer some questions, Kassandra. I really appreciate your insight and I know that your thoughts will encourage others. I love you, my sweet girl!

This is Kassandra and I in 2012. She flew into Washington for Thanksgiving to surprise us. My husband and I drove to Mukilteo, Washington where our older daughter, Stefani and her family lived, and our  youngest daughter and her family lived in Silverdale about five hours away. We had quite the Thanksgiving.

All three of my girls and I are walking clones of each other, the only difference between Stefani, Kristian and me is that they have more of their father's personality. Real laid back. They do have spunk and will put you in your place if it's needed. However, Kassandra are literal carbon copies of each other. Add chronic illnesses to the both of us and you have oil and gasoline looking to com-bust. I am thankful and blessed that we have found not only common ground but open communication and understanding. A total God thing!

Please ask questions in the comments if you have some. My desire is not only to share my daughter's thoughts on something that greatly impacted her childhood, but to bring awareness to a disorder that effects more people than cancer and there isn't nearly enough information about it.