Tuesday, April 10, 2012

April 10th, 2012

Today I feel a bit angry.  Angry at everyone who won't just let me be where I am.  Angry for people fighting to give me hope.  They aren't going through this, and statistics show that more than 75% of them wouldn't choose to even give her the chance I've given her.  So back off, just love me (in the way I want) and leave me alone.

But maybe all this just goes to show that I'm not keeping an open mind, not allowing myself to hope? To love?

Ahhh!  I don't even know.

I love that my belly is growing, I love that I feel her moving inside of me.  I just want to cherish her and love her... to accept that my time with her will be shorter than I would like and probably more painful than I realize.  I'm not sure I want her to live a longer life, I'm afraid of what that means for our whole family.

There are so many stories in the news about Rick Santorum and his daughter Bella. (and so many people want to share those stories with me)  She is 3 years old, she has T18.  I don't know if she has Full, Partial or Mosiac Trisomy.  I don't know what Abby has either (update: we do know that Abby has Full Trisomy 18).  But all people catch is that she is alive, and she is 3.  She has been hospitalized twice this year for pneumonia.  She doesn't look like she can hold her head up well on her own. No one wants to see those details, they only want to say "she has T18, and she is still living... see Abby might live".  And yes, she might.  And if she does I will work so hard to find the joy, find the blessings.

It's just so difficult to live in limbo.  I miss who I was 4 weeks ago.  I miss my joyful anticipation, my stress, my ignorance, my excitement of knowing we were going to be raising 4 kids.

I know that when I tell someone that today is a good day they have no understanding that I mean I'm operating at 70% of what is normal for me.  But that is my new norm.

I'm so thankful for the beautiful kids I have, for the distraction they bring.  For the smiles they give me and my heart.  And I'm thankful for each movement Abby gives, for the reminder of the joy of life... even if it's a life that I can't comprehend at this point.

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