Acceptance or How I Went From Coward to Fighter in the Span of a Year

When Lily was first diagnosed with Epilepsy I had read something about accepting the situation, that was the only way to move forward. I remember I was horrified by such a suggestion. I would never accept that this was anything other than just a fluke. A one or two time deal. Then she had more seizures but I still clung to my resolve, this wasn't real, that this would go away someday. This wasn't possible. This was not happening to my child. No way!

There was no way I was going to accept this situation because if I did, it would make it all real and true. Can't go there. Not gonna happen.

So I stuck on my smiling face, smiling at people when they asked how do you do it? Just smile and said I just do. But I did simply because I didn't believe. Denial at its finest.

Jump ahead to now, many, many months later. I have come to accept the whole situation. The Epilepsy, the Canavan. I can't really tell you when I moved from denial to acceptance, but I can tell you this. You can't move forward without acceptance. You can get nothing accomplished without it. If you don't acknowledge the situation head on then you certainly can't deal with it, move forward with your life, work on changing things, etc. Now don't misunderstand me when I say changing things. I know I cannot change the fact that my daughter has Canavan or Epilepsy, that is something that is set in stone.  That fact I no longer deny. But what I do deny is that nothing can be done to change things.

Another fact I deny is that Canavan is rare. Here's what I believe. What they call traditional Canavan is rare. I think the form Lily has is not. Why? Simple if not for her seizures she would have gone undiagnosed. So you may think but she has the seizures therefore Canavan, but wait! My husbands family has a history of Epilepsy. It has been suggested to me that the seizures may not be being caused by the Canavan. So if that history of Epilepsy was not there, Lily may not have seizures, therefore she would not be diagnosed. You follow me?

So why is this such a big deal, you may wonder. After all Lily is not being treated for Canavan because outside the seizures there is nothing to treat (she is being treated for the seizures however). So if kids like Lily go undiagnosed  it's not a big deal, right?

Wrong!! Why? Because Canavan needs numbers. There it is, point blank. If there are cases out there that are not diagnosed, they need to be. As a rare disease Canavan receives virtually no funding for research. What does this mean to kids like Lily? Not much. What does this mean to kids with "traditional" Canavan? The world! With research we can cure these kids, with research we can give the kids their lives back.  These kids have as much of a right to a normal life as anyone else. Fate has dealt them a terrible hand. YOU can help over come that.

How? You may think. This thing is huge, how can one person make a difference? Well money makes the world go around, so they say. But I disagree, I think it's love. If you are like me and as broke as a joke there are still things that you can do. All it will cost you is time and think of the joy you will gain in your heart knowing that you did what you could to help!

First, educate your self on Canavan. When researching Canavan, watch out for out dated info. Trust me there is a lot out there! A good place to start is http://jacobscure.org/.  As you read you may think, I don't understand half of what this is all about, so let me put this in non medical terms. The coating that covers our nerves (which transmits nerve impulses necessary for us to function) is destroyed and does not regenerate in kids with Canavan. That means loose of hearing, sight, swallowing, etc. and eventually death if that process is not stopped.  Take this education and spread it. Tell everyone you know about Canavan, including medical professionals! I think you would be surprised by the amount of medical professionals that know nothing of Canavan.



If you aren't into talking to people then consider hosting a screening party for As Daylight Breaks http://jacobscure.org/sponsor.php  Once again this will only cost you time.

Before you close this page I want you to look at a previous post called Please Read. You can find it to the right under popular posts. Look at the children. I mean really look at them. They won't go away once you close this page. Their lives still go on and their families still pray for a cure. You can be a part of that process. Open your heart to the children and their families. THEY NEED YOU!! Please don't turn your back on these kids!

As always thanks for reading and please spread this post!!