Thursday, December 5, 2013

Do' and Dont's

It is always hard as a parent when your child is diagnosed with something difficult.  We want their world to remain innocent for as long as possible.  We don't want them to ponder their death, we want them to enjoy life with that limitless possibility outlook.

So when we are cruising along in life and we hear that there is something significantly bad going on in the health of our children it is like a punch to the gut or a glass of freezing cold ice water dumped on your head during a really good dream.  So it is no wonder we don't always handle it the best.  Now that I am a couple of years out from hearing my daughter is epileptic I realize I should have read a do and don't list so I wouldn't have to undo damage.

So here is my list of do's and dont's when you hear your child has epilepsy:


Tell them what is going on.  This is one I did do right, but I was shocked at how many people asked me if Alina knew she was having seizures.  To clarify Alina does not have Grand Mal seizures, she has Absence seizures.  So it would be harder for her to know, but we felt knowledge was power in this case.  At least this way she had an explanation as to why people warped across the room or she missed part of the lesson in school.


Blame Yourself!! This is an important one.  There's always the "what did I eat while I was pregnant syndrome", but this goes beyond that.  I felt so guilty at all the times I had yelled at my daughter because she wasn't responding to me.  I thought she was just blowing me off. Her teacher is the one who picked up on something being very wrong, but neither of us once thought seizures.  I replayed the video's of my own bad behavior incessantly.  Realistically, though I tend to be a know-it-all, I really don't.  I had no experience and therefore no way to know that there was even such a type of seizure.  We were told by several medical professionals that she was lucky her teacher and I had a good working relationship.  Many of these kids go years with no diagnosis, are labeled the goof off and by the time the truth is discovered they are so far behind it is insurmountable.  So I had to realize it wasn't my fault she had the seizures but it was my fault we found it out and that was a good thing.


Reassure, Reassure, Reassure!!!   Oh my, I think my problem here was that I needed reassuring too.  I did not do enough of this.  I left her dangling while I whined and researched.  I think it might even be said I felt sorry for myself and here she was needing to know it was going to be ok.  The thing was she never outwardly stated she needed to know it would be ok.  Izabella would have.  Alina is an internal processor so she let it eat at her.  And boy did it eat.  So, you may not know that it's going to be ok, but they need to know that it will be.  I'm not saying you should lie, but remember the day before they were skipping through life only vaguely aware there was bad stuff out there.  There world and the world of your other children just crashed down as they process the realization that even kids have bad things happen to them.  I mean come on how many 20 year olds have that concept down?  So let them know it will be ok, because no matter what it will.  I believe in Jesus and His promises and if that is true then we know it will all be okay by any definition.


Make their entire identity about their "disease."  Your child does not want to be introduced as Alina the epileptic.  I never told Alina's friends, she did that.  However, she then took that on as her identity.  What that did was make her feel different and isolated.  I remember her crying that none of her friends had to take medicine and she was so alone. I pointed out that I take medicine, and her brother does.  I also pointed out that she really didn't know if other kids took medicine or not, maybe they just didn't talk about it.  Then this summer I stumbled upon a book called Becky the Brave by Laurie Lears.  I found it randomly at the library.  It is a story about a little girl with epilepsy whose little sister thought she was the bravest girl.  But Becky was embarrassed by her seizures. That is until her younger sister reminds Becky and her friends that seizures is just one part of Becky, there are lots of other great things about Becky that have nothing to do with epilepsy.  This book spoke to Alina and she finally realized that it is just one part of her, it isn't her whole story.

I am sure there are more to add to this list, but I will end with Do always love your children and they will flourish!!


  1. I love your writing. I started having grand mal seizures when I was 12 or so and had them until I was 23. I hated that this little pink pill controlled my life. If I took it I was fine, but I didn't want to take it. So when I didn't, I would have a major seizure at school and I missed classes and I couldn't even drive unless I was seizure free for a year. Luckily my friends were supportive. I just didn't feel it was fair that I had to take a pill and others didn't have problems. Only when we get older we realize everyone has something. I struggled through the teen years with this. Not sure what could have been done differently. Finding books, or finding other people that have medical problems that she can talk and relate to can be great. It's like with my Lupus, sometimes I feel like I've got it so bad. Then I meet someone that has what I have and I see what they are doing and I know it will be okay. Alina will benefit from meeting people that have what she has… and seeing that it will be okay too.

    1. John II has since been diagnosed with a seizure disorder as well. He has absence and partial onset seizures. So she feels much less alone because of that too. Thanks for sharing your personal story it is nice to hear an adult perspective of a child's struggles. MT biggest problem growing up was my bossy older brothers :)