October 10th, 2014

Today is like any other day.  Well, today is London’s 9th birthday and I let Rachel stay home today to hang out with all of us and simply relax.  I can’t believe my children are 14, 10, 9 and 8.  Seems like a happy day, which it is, but it is also a very sad day for me.

This sadness I keep inside because my children don’t need to have a sad mother.    I have been avoiding this for a long time but today…

Today I took delivery on Rachel’s hospital bed.

She’s had a hospital bed at my Mom’s house and really quite enjoyed it.  Using the controllers to move her head and legs up and down.

I don’t see this bed as a fun, good time.  I see this  bed as death coming closer to my door.

I hate this disease. I hate this bed.

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Surreal to have a child’s stuffed animals on a hospital bed in OUR home.  I don’t like it.

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She is all happy because I made her ramen for lunch.  Ramen slides down her throat which has an epiglottis that likes to forget to close from time to time.

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Rachel listening to Disney Junior.

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Please someone wake us up from this nightmare.  All of the parents of dying kids are living in a nightmare.  Nightmares are for night and you’re supposed to wake up from them in the morning being grateful that it wasn’t real.

Except this is real.