Ashley's Story

She will leave fingerprints all over your heart

12/27/2010

It seems

...that every thing I touch today is falling apart, not going right, or not happening in the timely manner it needs to. If I could have my way I'd climb back into bed and try and start this day over. My hands are shaking and I'm on the verge of tears over things like dropping a bag of pretzels all over the floor. Its just not a good day.

Selfishly I've kept my big kids here at home today. Not really a good reason to not allow them to spend this day of holiday break hanging out with their friends other than I just want them to be home and in the house with me. I feel so awful for this, but I know I'm leaving and Ashley Kate is too and I have no gaurantees that I am in fact bringing her home Thursday night. I think they get it. Neither have complained about my answers being no when their friends call. Its just so unlike me to be so selfish. Again, its not a good day for me.

I should be packed by now and yet I'm not. The house should be cleaned and in order and yet its not. Its not like I didn't know this trip was coming. I should be showered and just finishing up the last minutes by now and yet I'm not. Instead I'm sitting here struggling not to fall apart and not to let the tears in my eyes fall down my cheeks.

Ash doesn't feel well today. She has slept most of it. Apparently caught a cold over night and is coughing, sneezing, and snotting all over the place. Not ideal conditions for a week of evaluations and procedures. I need her to be happy, thriving, and living life to the fullest this week and yet she's just not up to it. Its not a good day for her either.

I've got 3 hours and counting until I have to walk out our front door and not one item of clothing has been packed for anyone other than Ashley Kate. I have managed to get her medical supplies, TPN, IV fluids, and Omegaven packed along with her clothes, blankets and pillow. That is about all I've accomplished all day long.

I'm dragging my feet, but its not going to make any difference. Whether I'm ready emotionally or literally or not I have to get on that plane tonight with my youngest daughter and life will change. We have to take this next step. We have to find solutions tomorrow. We have to come up with a plan to allow her to keep living. We have to go through this circus all over again and my heart is broken over it. But...broken hearts don't change the facts...they just make it all a little bit harder.

I have to go pack. I have to take care of my responsibilities. Dave got out of bed early this morning and has been working hard all day taking care of his. I've been trying, but it feels as though I'm just walking in circles around this house. Suppose I should walk those circles around my suitcase and perhaps some items might fall in.

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