Survivor

The hospice social worker came by for a visit today.  She mostly works with the kids, but it was nice to sit down and talk to her for a while before she spent time with Ethan and Abby.

We started talking about Hannah, our plans we have made, etc.   I shared with her that Daddy and I have started talking about our lives “post Hannah’s situation.”   We talked about me going to get a job, the Little Miss Hannah foundation, how I am going to adjust to no more night nursing, getting rid of all the medical equipment…

Saying the words out loud leashed an overwhelming wave of guilt, and I wished I could have taken those words back as quickly as I said them.   It felt like I was acknowledging that it was okay for us to lose her.

She reassured me that it was okay to start having these discussions with Daddy.   She actually seemed a bit relieved that we were talking about it, as she says we are in the ‘survivor’ mode, which is a better place to be than not talking about it.

She made the comment that 80% of marriages of couples in our situation end in divorce or separation.  That number is just staggering to me.   Usually the mom and dad aren’t on the same page on the decisions being made or, worse yet, they don’t talk about the decisions that need to be made.

Thankfully, Daddy and I are in that 20% because we do talk about everything, and often.   Even though we are handling our emotions and how we approach Hannah’s current situation differently, we do have full respect of the other’s decisions and their reasons for it.   We are just different people wrapped in guilt, sadness, and fear about what is happening to our little girl and how it will affect our other two kids and ourselves.

But I still feel horrible and incredibly guilty for talking how our lives will adjust when she passes away.  She isn’t gone yet, and I feel like this should be a sacred time where all the focus is on her.  But on the other hand, I feel we need to talk about it because it will happen, and Daddy and I want to be prepared so we aren’t blindsided.   It is just the way we are (heck, we made funeral arrangements as soon as we could so we didn’t have to deal with that eventuality when the time came).

I keep thinking back when she called it being in a “survivor” mode.  I never thought about it that way before.    To me, the term “survivor” implies that someone has to experience a traumatic or major event in their lives first in order to reach that ‘status.’

I’m not ready to be a survivor yet.  I would be willing to put all that “after the situation changes” talk on hold indefinitely if it would change things.

I don’t want to think about a life without my little miss Hannah.