Invisible

Most people do not want to see Bug. Oh, they want to see the pretty boy they do not want to see his Epilepsy. I post about his seizures and I have watched the people that know him the most slowly pulling away. I still support them, I cancel my plans and I drop what I was doing and I offer an encouraging word or two, but he gets NOTHING in return.

I post for TWO reasons: 

1. So that someone can say they have heard of this before, their child has been through it and can offer some guidance.

2. So the someone can read and know that they are not alone. That there are other people out there in a similar position and they can commiserate.

The second is VERY important.

When you have a child with a chronic condition he/she will always be treated like damaged goods by someone. It's just something that you have to get used to. You will hear about how it is somehow YOUR fault that the child has this. it will be blamed on everything but what it really is: A fluke.

People do not want to be reminded that it could be them, that they could face this at ANY TIME and so I struggled with posting about his Epilepsy. And then I came to this conclusion: Screw perfection, the world needs to be made aware of how sudden and how all encompassing Epilepsy is. So I will post, unabashedly. And if people start to treat me like we are invisible than so be it. Someone will understand and someone may be able to help and I will let them know that they are not alone. That even though other people crave and are prideful of their perfect lives, we, who do not have perfect lives are still every bit as fulfilled. And we can see outside of ourselves and find the power to help others.

And I haven't made a potholder in years.