Friday, April 27, 2012

one of those days.


So things have been SUPER crazy around here lately. At this point in time I have no idea what I’m going to do besides drive myself absolutely crazy thinking about it all. Carsyn’s seizures are still not under control. He had such a good day yesterday and then today happened. We got up early and from 7:30 to 8:30 seizures just kept rolling in. Every couple of minutes he was seizing and I finally had to give him his last dose of his emergency diastat. They finally stopped but 10 seizures in an hour is out of control. I called the doctor and we are waiting to see when he gets up if he has any more, because then we will have to go to the ER. He was so good yesterday and it’s like today is making up for it.

                It feels like we take one step in the right direction and get pushed back 3. How long can I go before I break? I have no job, I’m back in my math class that I failed two months ago (if I fail again I’m on warning status, then if I fail AGAIN I’m out) and between Carsyn’s seizures and appointments and upcoming surgeries I feel like I might freak out. I have been dreading writing about this but if I don’t get it out there it’ll be worse. I had a breakdown the other night with Todd. I am so scared that something will happen to him. I just keep thinking about everything and I know I need to stop. What if I flunk out of college? Then I failed Carsyn and myself, my mom, Todd, everyone. I don’t have a job, what if Todd gets fed up with me? And then there’s the biggest question of all. What if I lose Carsyn? Just typing that scares the hell out of me. This sweet little boy could be gone. The light of my life. Gone.  Where does that leave me? Last night he fell asleep holding my hand, and all I could do was cry. He needs me just as much as I need him.

 I know Todd’s just as worried about him too, he just doesn’t talk about it. I hate feeling like I can’t do anything. I can’t help. My hands are tied and it’s driving me crazy. I think that’s why I’m writing this. I haven’t talked to anyone but Todd about it. I refuse to be taken as weak. I cannot break.  I can’t let Carsyn think I’m giving up. He needs me. I feel like screaming, punching something, and then just crying. It’s not fair.

Then I think about all the kids we have lost this year. Just since the beginning of January. And I want to cry all over again. For those families who lost their babies, for those kids who never really got to live their life. Even for the ones who were a little older than the rest. 10 years? That’s nothing! It’s moments like this that I don’t know what to believe in. Why would God do this? Some people say it’s because he needs them more than we need them. Then why make them go through this? The pneumonia, the seizures, the endless surgeries. WHY? I just wish I could take it away, somehow help him. If I could take his place, I would. I would trade my health for his. I would go on knowing that he would have a long and healthy life and people would be there for him, to love him and raise him and fight for him. But I can’t, and it hurts like hell.

I guess I just needed everyone to understand that as much as it seems like I’m holding it together, inside I’m killing myself with guilt. I can’t sit down and feel bad right now though. I have to fight. But I know one thing.  I cannot and WILL NOT break. I refuse.  For Carsyn.

And now my boy is awake. So I am going to hold him, and tell him everything is ok. That I’m here and I won’t let anything hurt him. For him I will always fight. Forever.

This is my forever.


"Through humor, you can soften some of 

the worst blows that life delivers. And once 

you find laughter, no matter how painful 

your situation might be, you can survive it.
-Bill Cosby









"You've developed the strength of a draft 

horse while holding onto the delicacy of a 

daffodil ... you are the mother, advocate 

and protector of a child with a disability." 

-Lori Borgman


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