Posts Tagged ‘cystic fibrosis’

February 25th

Five years ago today, at 2:36 p.m. (pronounced time), my sister died. It seems like so much less time and so much more time all at once.

While driving to work today, I started thinking about all of the love in that room: The over-night nurse that came in at regular intervals to put chap stick on my sister’s dried lips; the friend that brought in soft towels from home because the hospital towels were “too scratchy”; the abundantly-available parent bracelets that allowed visitors to stay all night; the pizza in the reserved play room; the hotel room across the street for too many overnight guests. The Children’s Hospital of Philadelphia is an amazing place.

I thought about my dad and how he did not leave her side once, how he told her it was okay, even though he didn’t want her to go.

I thought about how absent I was from everything. I thought about how angry I became because of it. I thought about how I fell out of the chair when she stopped breathing.

Now I’m thinking about how angry I am that she wasn’t at my wedding, how sad I am that she never met my husband, how she died knowing I was unhappy in my relationship, but afraid to change it. She told me I was being stupid. She told me to get out. She told me I was smart and beautiful.

And I miss her every single day.

Now, with splotchy face, I have to go teach a class.


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I’ve been wanting to write a memoir about the times I had with my sister. I had (have) no idea how I want to go about it, how I want it to look, or how I want it to feel. I know I am tired of writing about the end of her life. I’d rather write about the living part.

When I moved out of my parents’ house and into my husband’s house, I remembered a tiny mason jar my sister gave me for Christmas one year. She called it a memory jar; it was filled with slips of paper with short phrases written on them. These phrases would trigger a memory and laughter.

I think this summer, with a number of other projects (including a hypertext), I’m going to write out the memory that each slip of paper represents. I will post the drafts here, and I hope I will get some constructive¬†criticism¬† My sister’s story wants so much to be told, and I want it told right. I know I have some pretty talented people reading this.¬†

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I Will Start This Blog. I Mean It!

Adventures in cranky essays and rhyming poetry from an unlikely single mom.