Archive for the ‘parenting’ Tag

If I were truthful   1 comment

If I was brave enough to overwhelm people with the truth, if I was courageous enough to be (forgive me, I’m going to quote Christians) “real,” I would answer the question of how we are doing.

The truth is, my daughter rarely sleeps anymore. Her head hurts too much to let her. We’ve helped her maintain her weight, although the doctors keep harping on how skeletal she is. Last night she cried, and I cried with her, because I asked her what she wants to be when she grows up and she said she didn’t know, because she doesn’t know if she’ll be able to do anything, even college. Today her eyes are accentuated by the bruised coloring underneath them. It is getting worse and so, again, I am leaving messages for doctors.

I would tell you that she doesn’t want to do any appointments for awhile. I can’t say that I blame her, but it doesn’t stop me from wishing I could take her somewhere that she could get a solution, instead of another thing to try and hope.

If I were truthful, I would probably cry while I told you all of these things. I would look away, because I can’t stand crying in front of people and I would crumble if you touched me. But what will I really say? I’ll tell you we are the same, we are fine.

Posted January 4, 2011 by comomma in Uncategorized

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Spoons   1 comment

I have already broken one of my halfhearted resolutions. I cried for the third day in a row. Life is hard. And it isn’t fair. Not even a little bit.

February will be the one year anniversary of the downward spiral of my daughter. She isn’t dying. Her condition isn’t life threatening. I feel like I need to apologize, we are fortunate. We get to keep her (as far as anyone can) for now. Knowing all of that, life is still hard for her. Standing, walking, eating, sleeping, they were all easy for her at one time. Now they are WORK. How do you sleep when you always have a migraine? How do you eat when you are always nauseous and in pain? How do you walk when you have about two minutes before you lose your vision and hope you can sit down quickly before you fall?

When I look in my girl’s eyes, I want to tell her to hope, but instead I pray for strength. Courage. The ability to keep singing in the crap (or is that storm?).

How do we know if she is part of the 80% or the unfortunate 20%?

Posted January 4, 2011 by comomma in Uncategorized

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