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Friends & Family Fridays: From My Parent's Perspective

Finding Out You Have Epilepsy As An Adult

Most stories you read are about young children or babies and on occassion teens who find out they are diagnosed with epilepsy. Now, this doesn't make it any easier as a parent; but I wanted to share from my parent's perspective how it felt when their daughter, married with two young sons and lived far away, was officially diagnosed.

My parents have always been very involved with our boys and would visit or help me out when Brent traveled. But after I was diagnosed it was for a whole different purpose. They knew I was being hard on myself because of things I couldn't do as a mom/wife that I used to.

To to say we are very blessed from the start

with very loving parents/grandparents

is an understatement.


In My Dad's Own Word's How It Feels To Have An Adult Child With Uncontrolled Epilepsy:

"No one wants to hear: 'Your daughter has a disease and there is no cure', regardless of their age. I heard this about my daughter 18 years ago when she was only 28 years old. Your daughter has epilepsy! I thought no; she has fainting spells. We heard this from the Mayo Clinic, so it must be so. Thus, our entire family started a journey that continues to this day. No one can imagine how they will react when you see a loved one zone out; pass out or have tremors. We learned Grand Mals are not the only manifestation of epilepsy.

Heartbreak is when you see your grandson care for his Mom like he is a trained professional rather than a 14 year old just doing what is a normal reaction to someone who has witnessed this his whole life. Heartbreak is she can drive. She can’t drive. She can drive. She can’t drive. She can work. She can’t work.

Hope is when a new improvement (RNS) is implanted in her brain which will eliminate her seizures. Hope is dashed when it works; but only, to the extent that a physician notes progress. A Dad only sees she still is affected by multiple seizures every day.

I believe we are never given more than we can handle; however, when you are living that, you oft’ times doubt you will survive.

Marissa is treated by the finest physicians in the world at Mayo Clinic, yet we still struggle to understand: Why Blondie? Eighteen years and our family continues the fight. I will continue this fight for the rest of my life. I only hope at some point her seizures will be controlled and we can all be at peace."

Why This Is Important.

You see, there are many support groups for parents of babies, children, teens, and college aged, but none of parents of adult onset epilepsy (they might be adults now, but were diagnosed as a child/teen and most are controlled). There are support groups for the person with epilepsy, the spouse and kids at times, but none for our young men now, just see a therapist, they say.

I have had a few parents reach out to me asking me how we have 'done this'. I wanted to share how my parents felt when I was diagnosed and how it continues now. This was in their words, and you can see it isn't any easier just because your child is married and has a family.

Honestly, from my perspective, being open with the entire family about how they feel, and setting boundaries is what is needed. There is no right or wrong way and every day may be different. Every epilepsy family situation is different and needs are different. I think it is comparable to how we care for our parents when they come to need help. What do you think Dad and Mom?

Maybe we have a network that is missing a support group. Maybe one can be started here?


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diana
2023年4月01日

I like the poignant sharing from Grandpa to give us a sense of how epilepsy is a family challenge. Thank you for bringing awareness to the different facets of epilepsy. Maybe creating a network of support will be in your future💜

いいね!
mmparmer
2023年4月03日
返信先

Yes he may have a tough exterior but all heart when it comes to family. It definitely touched me when I read his point of you. I hope it brought light to others as well, of how much epilepsy is a family affair. 💜❤️

いいね!
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