Trigger photo

I was talking to a friend last night about everything that was going on, and he made the comment that I sounded pretty together on the phone.   Being that I hadn’t spoken to him for a few months, I took that to mean he was surprised I wasn’t crying on the phone or being really sad.

Reality is, there is only so much crying one can do, you know?   We are living with this situation 24/7, literally.  That first week, it was chaos, emotional hell, and we thought we only had days left with her.  As horrible as it is to say, it is weeks later now, and you become almost immune to the minute-to-minute happenings with Hannah, especially since she is sleeping 23 hours a day.   Even Ethan and Abby have gotten used to the situation with discussion of Hannah’s changes in condition, her meds, her O2 and humidifier running, and having a nurse here almost 70 hours a week.

Daddy and I are just completely emotionally and physically exhausted at this point.   We are just waiting on every breath Hannah makes to make sure there is a next breath, and we are scared for our hell to begin when she doesn’t take that next breath.

I don’t talk on the phone to people much these days.  Thank goodness for my blog, Facebook, email, and texts so I can keep everyone updated.  I don’t have it in me to talk to those whom I know are going to break down crying.  I don’t know how to comfort other people right now without losing it myself.   I really only text and talk on the phone or in person to those who I know can be strong enough to have the conversations.

Hannah’s bed in the living room which is where the kids, Daddy, and I watch TV, have dinner, and basically live our lives.  She is front and center, and it gives us a lot of opportunity to talk to her, shower kisses on her, and give her attention.   The kids also give her kisses each time they go to school and when they come back.  We don’t know how much she can hear or understand at this point, but if there is a chance she can hear, we want her to here us, the laughing, the yelling at her brother and sister to stop fighting, just hear us around her.  There is always someone with her in this room (including me right now doing my ‘night shift.).   She is never, ever alone.

Even though our days aren’t filled with constant depression (who can live like that when you have two other kids), I have found that we each have certain triggers that will just hit us and we lose it.

I have been trying to work on getting our photobook done from our Make A Wish trip.  We had over 1000 pictures taken during that week, and it is such a huge project.  But it took me months to even start it, which I did about two months before this latest situation changed.  Two weeks ago, I tried to restart the project, wanting to get it done before … well, before something happens.

That first night I tried again, looking at all the pictures… I just lost it.   It was such an amazing time in our lives with Hannah, one of the best weeks really.  The smile on her face on so many occasions was priceless, and seeing Ethan and Abby thoroughly loving their time there … it was just wonderful.

But then I came across this one picture of Hannah.   It isn’t a great photo, but there was just something in her look, something real, something sincere.  She was sleeping, and you could see that she was just peaceful.  I looked over at Hannah sleeping on the bed over here, and she had the same look on her face.   The exact same look.   Argh…just even thinking about that picture makes my stomach queasy and my heart ache.

I almost hit the delete button to get rid of it, but I didn’t.  I just decided I will work on the book later.    I ended up crawling into bed with Hannah, snuggled her into my arms, and just cried for what seemed like hours (which was good that everyone else was asleep).

That was a week ago.  I haven’t gone back to continue working on the book yet.

But life goes on.  It just does.  Even though I have my moments of breakdown (usually when I am alone), I don’t let them consume my life … at this point.  I do live with a constant knot in my stomach wondering the “when will it happen?  will I be there when it does?  what will she look like?  how we will go on afterwards?…” questions … I mean, those rarely go away even though our family still lives our daily lives.