Welcome to our family blog!

This blog was started in October 2010 shortly before our daughter, Abigail Grace, was born. She was diagnosed at our 18 week ultrasound with Holoprosencephaly (HPE), and we were preparing for a child with very complex medical needs and a shortened life expectancy. Abby was born on November 12th and sadly passed away just four days later. This blog follows me, Matt and Abby’s big brother, Connor, along our journey from preparing for Abby’s birth through our adjustment to life without her.

Monday, January 3, 2011

It's a little harder than I thought

Writing about life post-Abby is a whole lot harder than I anticipated.  I suppose part of that is because a good deal of what I’m thinking and feeling still requires reconciliation/ sorting out.  I am posting now partly because a few people have emailed me to ask how things are- I find that shocking!  And rather flattering, I admit, so thank you for caring.  I’ve actually journaled a lot in the past few weeks; once I have better perspective I think I’ll be able to share more.
I wouldn’t consider myself an optimist, but the truth is things right now are significantly different than I thought they would be.  For someone who deals with numbers for a living, I completely ignored statistics associated with Abby’s condition.  I rationalized that someone has to be in the small percentage of people who live with HPE, even if only for a few months or years, so I should prepare to be one of them.  Plus, I was afraid if I expected her to die, I would be wasting time that should be spent preparing for her care.  I know, it doesn’t make any sense.
These days I view time in terms of Abby’s birth, so to give perspective, she turned 7 weeks on NYE.  I say it in the present because that’s how Connor talks about her.  He asks me how old she is in Heaven, when her birthday is, what we’re going to do to celebrate it, and how old he will be when she’s a grown up.  I considered explaining to him that she will never age; she died at 4 days and she will eternally rest as a 4 day old baby, but he really likes the idea of her growing up in heaven right along with him.  So I let it be; she's growing in Heaven everyday, just like he is here on Earth.  We’ve actually been discussing things we can do “with her” like having a snack time with her at the cemetery or reading her his new books (yes, I did take that idea from Elizabeth Edwards).  I think this is one of the hardest things to deal with; I can have a relatively good day, then when I put him to bed Connor will start talking about her in ways that just tug at my heart.  And it's so hard to not cry in front of him.