Grieving in limbo

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.


  1. Carrie, I love you. I am praying for peace for all of you. Love, KC

  2. Kelley says:

    I’m praying for all of you, too, Carrie.

  3. Oh Carrie!!!! I wish you’d have called me during those dark hours. I wouldn’t have had any wisdom to share, but we could have talked. My heart is with yours. Much love.

  4. Carrie, I’m praying for y’all, and I truly believe that Hannah knows that y’all are there and that you are surrounding her with love, even if she can’t let you know it.

  5. Sarah says:

    Like I said earlier, I’ve been there with my parents. It’s hard. So hard.

  6. Marsha Biller says:

    Carrie—I read your blogs and am tearing up right along with you. I don’t know Hannah like you and the family, but I have followed your blogs and have looked at tons of pictures. I can’t imagine the pain you feel. As a Mother myself, I know it must be like your heart is torn out. There are many many people that will be grieving right by your side. I only wish that you had more time for your fight with her. You have fought so hard and come a long way. You should feel very proud of yourself for giving all you got to that little girl. I do hope that she opens her eyes and gives you one big smile before going home to her Lord. God Bless you and the whole family.

  7. Kelly says:

    Once again I sit here typing and deleting, typing and deleting because I don’t have the words. How I wish things were different. Hugs to you all.

  8. Chris W. says:

    Carrie, you having been the most giving, gracious, loving mother to all your kids in the face of this crisis. Please never doubt yourself. We all do the best with what we have been given. Your thoughts and feelings all seem perfectly normal to me for a very unreal situation you and your family find yourselves in. I know she feels your touch and feels surrounded by love. Even if she is no longer able to give you those smiles, or make that eye contact, I feel sure that she feels your love. Day by day,… the only way I imagine it’s even possible to get through something this horribly difficult. I’m glad you feel comfortable keeping this blog, I think you acknowledging these feelings now, even as uncomfortable as many of them are, is going to be so important and good for you as you process through the loss of Hannah, and helping Ethan and Abby through. You and Robert have been amazing with each other and the kids. I so wish I could be there just to sit with you, hug you, drink a glass of wine with you, gosh- just love you. Just know you all are ever present in our thoughts and prayers!

  9. Nana Waggs says:

    Dear Carrie ~ You mentioned feeling guilty. You, Precious Mommy, have absolutely nothing to be guilty about. I do not hear you complain….I hear you state facts about how things are….how cruel these things are affecting your family. You are sharing your heart with others. We are grieving with you although you are the one being ripped apart. I’m sure there are so many of us who wish we could help you through this time. As mentioned by another, words just aren’t there.

    May God grant you that special desire of your heart…

  10. Dear Carrie,
    I wrote a comment on your pages once before, some weeks ago. I had someone in my nearest family whom I took care of 24 hours a day and hoped we’ll be able to save her, but couldn’t. Her story ended three years ago, but I still feel the emptiness and the longing. The memories still bring tears in my eyes. I can still go about my day and suddenly start crying in the middle of the day. And my heart and mind always know exactly why I am crying. We did everything we could to move on, but what I find is that it is not all up to me to move on. It also involves time. More time. The one thing I miss about her most is no longer having the ability to touch her and give her a hug. What I wouldn’t give to just once more to be able to hold her hand. And now I am crying. Again. I try to comfort myself with that we’ll meet in heaven again some day, but it isn’t working so well. It hasn’t been able to stop the heartache after her.

    I do believe also that she feels the love around herself even if she can no longer give a visible response. Maybe she is expressing her love to you and her family is staying with you, staying in the atmosphere where she has felt loved every minute of her life.

    If I can humbly suggest anything to you then it would be to touch Hanna’s hand, face, hair, put your hand on her little body. She may feel it, her brain may be able to register it even if no longer strong enough to respond. When you hold her little body or run your fingers through her hair, close your eyes, and try to remember how it feels. Spend long minutes trying to remember the feel of her hair, her skin, her warmth. After she’s gone, this memory will help you a little bit. And this will be the only touch you’ll be able to have until you some day many years from now meet in heaven again…