day just got worse

>> Tuesday, November 2, 2010

It happens. People with Epilepsy suddenly just die. No known reason. Something just shuts off and does not come back on. It's tough to hear. It's even worse to live with. And I DO live with it. We DO face the fact that every night he might not wake up. Every damn day. Every day I listen to him breathe and wait for him to hold his breath. Several times a night I wake up and feel his chest. Glenn does it too. It's our routine.

Today it's not a routine. Today is a very hard day for me. I have read about two people today that died suddenly. They had seizures. Today I am paralyzed with sorrow and fear. I do not get this way often. But I see all these people talking about what they are doing for The Holidays and 'Be sure to vote, it's important!" and I just want to scream: My boy could be dying! I don't give a shit where you spend the holidays, I don't care if you spend it with my boy if you don't. And I don't care that you voted against your party. I just don't.

I want to take my boy to Disney World and I want to spin him on rides until he can't spin anymore. I want to let him jump on a trampoline and ride a bike. And I want to see him grow into a man. And there are no Christmas Trees or any Politician that will change that for me, for us. I want him to be happy, which he is, and I want him to be happy for decades to come, which he probably will be, and I want him to find a girlfriend and fall in love. That's a crap shoot. And why is it? I don't know. It just is. How about living with THAT?

I am sorry if you don't want to think about it. I am sorry if you don't want to see Bug, for what could be the last time, and I am sorry that I am a downer but I deserve it. I really do. There is a quiet stress that I live with and sometimes I am not quiet about it, but, by god, I do a fine job of not dragging everyone I know into my misery when I am miserable. But am miserable and leave me alone. VERY alone. I need to cry until I am done crying and not a moment before. Not that it matters. I don't think I have ever had ANYONE to cry with. Life is ugly and most people don't have the guts to let the ugly be what it is. They ignore it. Well, I am ugly today because life has a way of making even the most positive person, lose it every so often. Yep, I am ugly with grief that, hopefully, will never be realized in this house. Not if I can help it. But first, I will be done with my cry.


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Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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