question for the moms that have children with "E" - Epilepsy Message Board

mommajessibelle · 10-19-2003, 09:18 PM

hey all im not sure how much help this will be but i was wondering if you could give me a little insight on what my mom was and is going through.i have epilepsy and i have had since i was 15 im now 22 my mom wouldnt ever really talk about what she was feeling or what she was thinking when it came to my epilepsy so im just kinda curious as to what is going on in her head ya know what i mean? i mean she is very loving and caring and she calls me every couple days to see how im doing but she never really likes to talk about what shes feeling and what not when it comes to my epilepsy. can anyone tell me anything about how you felt when you found out your child had this

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mother of 3
ages 4,3,and 1
my pride and joy

diagnosed with epilepsy jan. of 97

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

gavman · 10-20-2003, 10:09 AM

Hello,
My guy is still quite young, 7 yrs old, diagnosed at 4yrs. It was a relief in some ways to finally know what was happening and that I wasn't crazy. It's been a bumpy three years with test after test. I worry about his future and whether or not the epilepsy will get worse. If it does, will he be able to drive? What if he decides to drink? Will he have trouble finding a job? I can't help but think about these issues, even though he is still so young. I will always talk with him about his epilepsy and help him any way I can. Our family is very open about it and there is no shame in it. Not that I think there is for your mom, but I know my own mother is not as comfortable about it as we are. She still holds the old stereo type view of epilepsy. I think she is scared and doesn't understand it. So she just doesn't bring it up, doesn't ask how he is doing, etc...I think she doesn't talk about it so she doesn't have to think about it. Your mom probably has a lot of fears for you, even if you are doing well, we moms still worry. You undertand, being a mom yourself. We try to stay positive for our children, but worry like crazy to ourselves. Even if your child is totally fine, we worry if they will have friends, will kids tease them, will they fit in? And on and on. Maybe she doesn't want to talk about it with you because she worries if she does tell you her fears, they may actually come true. Or she doesn't want to burden you. I think in a lot of ways, parents are more open with their children these days. More comfortable being up front with them. My own mom tried to shield me from her worries, problems, concerns. Thinking she was doing the best for me, but then you don't get to learn how to handle all those issues that come up in life. Just my own experience, of course.
I hope this helps a little and wish you the best with your mom and your family.
Take Care,
Cris

KittyMom · 10-20-2003, 11:44 AM

I don't have any experience with this at all but I can only imagine how this must feel. I guess I just wanted you to know that I am thinking of you sweetie and that you are in my prayers.

I do know that people from that generation didn't and don't like to talk to much about problems they are having. My grandmother and my mother do the same thing. They don't spend too much time at all in explaining THEIR feelings but are more interested in YOURS. Why? I don't know but that seems to be the way they are. I know this doesn't help much but on the off chance that it does I had to put it out there.

You are in my thoughts and prayers.

God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

momof3mjt · 10-20-2003, 03:24 PM

I am with Cris. It was almost a relief when we found out that Tiff had "E". I know that sounds strange, but we had so many unanswered questions about her development. It was like PHEW!

I think times have changed so much. When I was in school, I never heard about kids with diabetes, E, or any medical condition. Now, working in the schools, I see and hear of these kids all the time. No one looks down on them, no one treats them any different.

My parents have a hard time accepting Tiffani's "E". But they were worse before it was known. They kept telling me there wasn't anything wrong with her, she was just being stubborn. UGH. It was so hard. I am a preschool teacher, and I couldn't even convince my own parents!!
My father has finally come around and he asks about her often. My mom still doesn't ask, but I don't get the comments or the complete ignoring I used to get when I talked about it.

I KNOW it must have been hard for your mom. And probably still is. I still have fears for Tiffani and what if's. Now we just take one day at a time and deal with issues as they arise!

Lindy

gypsy · 10-20-2003, 09:48 PM

That's an interesting questions - thank you. My son has been diagnosed with E a few months ago. We are still going through the testing stages. I have never felt so out of control in my life. I stay strong on the outside for him but I am just crumbling inside. It is so hard to see him going through his seizures and not be able to do a thing about it. I can't fix it, I am trying to learn all I can and make the decisions I need to based on the information I have and then the seizures change. I am living and breathing E. Every time he goes out the door, or to school, I worry, although I want him to go out and not be held back by this. What a conflict in my head. I find it difficult to talk to friends, family or coworkers as they think medication will fix it or he'll outgrow it or they think they know it all.

Thanks for the question - hope this answer helped - it certainly helped me to vent.