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
-Lori Borgman
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