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Parents with more than one epileptic child
Tue, 07/31/2007 - 13:27Topic: Parents & Caregivers
Good Afternoon! I am hoping to get some feedback from any parents out there who are dealing with more than one child having epilepsy. I have a son who has unexplained Grand Mals in his sleep and a daughter who has Childhood Absence Epilepsy as well as Febrile Grand Mals with Status.
As the school year approaches, and they get ready to be out of my care again, (I am a former teacher; now a stay at home mom), my nerves begin to start to grind. I also have a three year old who has no history of epilepsy ....yet.
All parents have trouble catching their breath on a daily basis, but I feel like all I am ever thinking about is epilepsy. With special sleep schedules, medicines, and restrictions on acitivies, how does one get to be a normal family? We have very very little family support, so that does make it harder too I think.
Any hot tips on how others try to cope with what your family has been dealt?
Thanks!
Jean
Comments
Re: Re: Parents with more than one epileptic child
Submitted by eanj on Fri, 2007-08-10 - 13:37
Thank you for your post. It is good to hear from you because you came across as very postive. It is just so important to me that my children's self esteem not be lowered because of the epilepsy. I want them to see it as part of their life and take steps to safeguard against any emergencies, but I also want them to not be scared. (Life is scary enough w/o having to worry about a health condition.)
Take Care and again thank you for bringing a positive outlook to the board. Sometimes we all get too hung up on the situation to look beyond it and see all the rewards in our lives.
Jean
Re: Parents with more than one epileptic child
Submitted by SamanthaC on Fri, 2007-08-10 - 14:52
Hi,
I just wanted to throw in the view of an over protected child. Growing up I was the older sibling (there were two of us) I was also the only one with Epilepsy. I was very protected and not allowed to do many activities. I was never allowed to play sports, go swimming, or stay out past 10 p.m. Over protecting can be good but in most cases it makes it harder to adjust when you leave your "bubble" At the age of 19 I decided to move out I resented my parents for not letting me do many things. I also want to throw in there that the third child who right now does not have epilepsy should not get put to the side, or made to watch over the other two (not to say you do this) and the reason I say this is my sister who always was my mini protector still to this day feels a bit upset that she never got the "attention" I received. I know this is not the most positive post but I just wanted to throw in the other side so you could see. Good luck with both kiddos
~*Samantha*~
Re: Parents with more than one epileptic child
Submitted by Wreath on Wed, 2007-08-08 - 00:36
Hello Jean, Guess what? You do have a normal family. I'd like to encourage you (for your children) to relax and just be their mom. They know you love them. They also sense your nervousness, your stress/worry over keeping schedules, etc. A person with Epilepsy is many things, the affliction of seizures is a part of this life, but not the only part, not the defining part. Help them to learn who they are in all areas, to explore and love life. My sister & I grew up in a family that rarely talked about our seizures. We knew our parents were fearful of Epilepsy because they didn't understand it. (The positive side of that is, we had very few restrictions). After 42 years, we now talk about it. Also, we have another sister who has never had any seizures! So, don't worry, just continue to live each day, loving whatever life brings to you. Wreath