I’ve heard it can happen. Actually, to be perfectly honest, I was petrified of it. It’s been weighing on my mind for several years. But, one of the realities of being a Mom with a chronic disease (or condition or ailment…whatever you choose to call it), and one who has a healthy daughter, has hit me. Now I must decide how do I proceed? What position do I take?

I was told that one of Hayden’s friends will not be able to come over to our house for a play date because of my ‘situation’ as it was termed. The mother does not want to expose her child to ‘anything scary’, i.e. a seizure. I certainly won’t name names or even define the sex of the child. It’s not fair to embarrass him or her. It’s taken me a few days to digest this whole turn of events.  And, I believe I have myself to blame, but not necessarily in a bad way.

I have been incredibly honest and even blunt about my Epilepsy. I never hesitate to tell anyone, even the washer/dryer installation guys who were here a week ago to install at our new home. My position has always been, ‘Any awareness about Epilepsy is helpful.’ And, it’s a way for me to promote advocacy. After all, I knew nothing about Epilepsy until I awoke from my coma in January 2003, and was diagnosed.

My 4 1/2 year old daughter, in all of her youth, still knows much more than most people about seizures and about Epilepsy. She knows exactly what to do if we are alone and one sets in, whether we are home, on a walk, in a shop…you name it.

So, I’ve decided that people have their opinions, whether I agree with them or not. I must accept the position of others. But my issue is…my daughter will suffer, or at least she will until she is old enough to understand what I believe is indignity and shallowness, but that’s my take on this. Has my honesty and openness harmed her? I guess that’s a matter of opinion. We all know Epilepsy isn’t very glamorous. There are other conditions and illnesses that have so much marketing and PR behind them that it’s almost as if they aren’t real. I have absolutely nothing against this. I do my part to support and participate in many fundraisers and movements for other diseases. I have friends and family who live with different cancers, heart disease, diabetes, you name it. But truly, if I told someone that I live with breast cancer, I don’t think I would get the same reaction that I do when I define my Epilepsy, and that’s something we must work on as a community. I take everyone’s situation to heart and I’ve always done whatever I can to understand and help others.

Is it a lack of understanding or the stigma attached to Epilepsy that has gotten me to this place? It could be a combination. I told a very good friend about this a few days ago, because it had been eating me up inside and I was unraveling. She was mortified. She knows my daughter quite well and she has children who are in the same age range. She thought for some time and then pointed this out to me:  The reality is, I live with this as does my tiny family. Like it or not, it’s part of our life now and will be forever a part of it (until a cure is discovered), and it will have a certain effect on us. If there are fears and stigmas, rather than rebel against them and possibly hurt Hayden even more, I should focus on opening more doors and informing more people. Showing Hayden how I do that will be motivational and inspirational, and rewarding for all 3 of us.

I have to agree. So, I’m going to put this in the back of my mind as of today.

But ask me in a year if that child has been to our house to play…and let’s hope I’ve been able to change a few minds.

Hayden and me, late winter 2010