I’m having a really rough night tonight.
It seems like so many things are setting off the tears tonight. This is hell.
I know how hard this has been on Daddy and me. It is like we are stuck in between grieving and fear.
It would be one thing if Hannah was able to be awake and even a little bit aware of anything around her – us, her favorite music, holding on to her little Minnie Mouse. Spending her last days with us knowing that she is surrounded by love. Even just some movement when we talked to her or touch her. The only time she is awake, which is maybe a total of 15 minutes a day now, is her completely out of it. When she is somewhat awake (yet still drugged heavily), we see the tears well up in her eyes and her body twitches — just kills me, and that is our queue to knock her out again.
We don’t even know what that tear means, whether it is a reaction from pain, sadness, or even involuntary. All I know is when we see it, it feels like a knife in our hearts.
We don’t even get a glimpse of our Hannah’s personality. Nothing. I keep hoping and praying that maybe “this time” will be a breakthrough, and I will get some kind of reaction … even a little one. But nothing. It is as if we only get to keep her body with us, not her smile or personality.
And that is what makes this so damn hard. Our family has been grieving for her for weeks now. Just waiting for that moment she stops breathing, so scared for it to come. But knowing that is right around the corner.
We are ready to deal with it. We don’t want to, but we know this is not a life we want for her. No quality of life at all.
It is like our loss is just dangling in front of us – teasing us. Like, “ha ha, I’m going to mess with you.” Because that is what it is – we have lost our Hannah. The beautiful little girl sleeping in front of me is really just a shell of who she was, one whose body is slowly failing. It is still her smell, her feel, but that is all we get now. Sometimes I am so thankful to still be able to cuddle on her and run my fingers through her hair.
But sometimes, as hard as it is to say, sometimes it really just isn’t enough anymore.
And what is even harder to deal with is how it is affecting Ethan and Abby now. Oh gosh, poor Abby. Because she is more aware and dealing with what is going on with Hannah than Ethan (who is not really dealing with it at all yet), it really is affecting her in so many ways. School, social activities, life at home…
Seriously, they are living their lives with their dying sister in the family room, also just waiting for her to let go, yet probably not really knowing how this will affect them. Yet, we still watch TV, have meals together, do homework in the same room as her…keep going on with our daily lives. How do they process all of this?! Our hospice social worker meets with the kids each week, but I think this is so much bigger than just this.
Then I feel so incredibly guilty for feeling this way. This is my Hannah. This is my baby daughter, my miracle. This is all I have left of her yet I complain about how hard it is on me and the rest of us. What about her?
Damn, I miss her so much. She’s here, I know. But she isn’t really here anymore. I miss her, and I would do anything for just something – a smile, just something to let me know she is still here with me.
I’ve got such a headache. I am going to crawl into bed with Hannah and snuggle with her. Maybe, maybe by some miracle, tonight I will get a glimpse of my Hannah.
Yeah, right. Probably not.