The reason why epilepsy has taken the most toll on our family is because you just never know when it’s going to happen.- Mia
Tell us about Bliss and how you learned about her epilepsy?Mia: Bliss was diagnosed with a rare brain disorder called polymicrogyria. And we knew that at some point she would have a seizure. We just didn’t know when.
And when did she have her first seizure?Mia: Bliss had her first seizure when she was 18 months old. We were actually scheduled for a doctor’s visit the week prior, but I made a scheduling mishap and happened to go in earlier. And the doctor happened to be able to see us. And she had her first seizure at that visit. So maybe it was god with us. I’m sure it was because I don’t think that I could have handled it without her doctor present.
We were sent home. And then she ended up having another seizure and another one. We went back to the hospital. And she just kept clustering. She had a few more that night.
Bliss has other conditions to contend with as well?Mia: She also has cerebral palsy. It’s a condition that also comes with the polymicrogyria – epilepsy, cerebral palsy, developmental delays, speech delay, feeding delay. Epilepsy, by far, has taken me by the most surprise.
Why is that?Mia: The reason why epilepsy has taken the most toll on our family is because you just never know when it’s going to happen. You don’t know what it’s going to look like. You don’t know who she’s going to be with. You don’t know if people are going to be equipped to handle the situation. And it’s scary.
When Bliss has a seizure what goes through your mind?Mia: The last seizure she had was a 15-minute grand mal seizure and we were still really learning about it. I didn’t know what to do. I kind of panicked and I realized that panicking wasn’t going to help in that situation. So, I quickly got calm. I put her in a safe place.
And I started timing the seizure. After five minutes I gave her her rescue meds. And it didn’t– she didn’t come out of it right away. So it was really, really scary.
What’s the worst part about epilepsy?Mia: The worst part about epilepsy is that you can’t control it. There’s nothing you can do in that moment to help your child. You feel helpless. You have to ride it out and just hope that, you know, once it’s all done and over with that she’s safe and healthy and can recover quickly.
Is there anything good about epilepsy?Mia: I’ve, thankfully, have come across a wonderful community and I’m forever grateful for that because I have been so in touch with the Epilepsy Foundation and I feel safe. I feel empowered. I feel educated. And because of that, you know, it’s helped tremendously.
What would you say to someone who doesn’t know anything about epilepsy?Mia: I would say that you should learn a lot about epilepsy because it can happen to anyone, at any moment. And it’s always best to be prepared to help someone because you can save a life.
And what would you say to a parent who’s just discovering that their child has epilepsy?Mia: I would say to a parent who’s just discovering that their child has epilepsy that it’s important to reach out and know that you’re not alone. When you have a sense of community it just makes you a little stronger and you’re able to kind of bear through it.
How are you using your brain to End Epilepsy?Mia: I’m using my brain to End Epilepsy by participating in the walk and I’m using my brain to End Epilepsy by sharing Bliss’ story.
Article by: https://endepilepsy.org/