Monday, September 20, 2010

Incongruous

Today went a little better, but it was still hard. I’ve had four months of not having to concentrate on anything, so trying to concentrate for 7 hours a day, especially when it’s still hard to think of much other than my dead child, is rough. And exhausting.

These past few days, my brain has been stuck on two images. The first is the one below, of Hudson’s daddy swinging her around in the air by her feet, her arms outflung embracing the world, her wispy hair blowing in the breeze, her face grinning from ear to ear, her laughter lighting us up from within.


The second is of my sweet girl lying in the bed in the PICU at Children’s Hospital. This one I’m glad I don’t have a picture of—the picture in my head is bad enough. Sometimes I see her, eyes closed, with the ventilator tube taped to the corner of her mouth, IV tubes running into her little hand all taped to a board to keep it in place, her face and lips swollen from all the fluids they’re pushing into her, white sponge-like things taped to her forehead measuring the oxygen saturation in her brain, her hair a mess from the sticky adhesive they’ve used to attach sensors to her head for an EEG. She looks like a bigger little girl than I realized and yet she still looks so incredibly small in that big, impersonal bed. More often, I see her after they’ve declared her dead, after they’ve removed all the tubes, after we’ve tried to wash her hair a little bit, after the swelling has gone down. Her head is turned slightly to the right and downward, her arms are at her sides, and one of her blankets we’ve brought from home is pulled up to her shoulders. For the first time since she was admitted three nights before, she looks like my little girl again. She looks as if she is just sleeping peacefully.

These images are so fundamentally incompatible with one another that I still can’t reconcile them. When I think about the first, I think, “How can that precious creature really be gone? How can that laughter, that playful spirit no longer be in the world?” Those are the moments where, for a fleeting second, I think surely it can’t be. And then all I have to do is remember the second image of my little girl lying dead in that hospital bed and I know that it can.  And is. 

And what I still struggle with every day is this terrible sense that I somehow let her down. I did not do my most important job of keeping her safe so that her daddy could keep twirling her around until she got too big for it. Even though I have let go of the worst of my guilt about not taking her to the ER sooner, I still just feel responsible for her not being here. I can’t explain it any other way—it’s just always there. Every time I picture her lying in the PICU bed, this muddled feeling comes over me and I just think, “Why couldn’t I save her? Why couldn’t I make it come out differently?” I just feel so responsible.

Maybe this is some form of survivor’s guilt and I’m just not recognizing it for what it is. I guess that makes sense, given that what I feel most awful about is how she is missing out on all the damned fun she could be having right now. Why should I get to go on living? Why should I get to enjoy watching Hudson’s daddy swing her younger siblings around one day when she doesn’t get to do anything ever again? Why is she gone and I still get to be here?

These two images—one of my beautiful girl very much alive in every sense of the word, and one of her dead, forever asleep—have been with me constantly these last few days. I can’t resolve them. They just don’t go together.

17 comments:

  1. Mandy,
    I came to One Good Thing from a Facebook post about your husband's journal and have been reading it for the past few weeks. I'm not a mother and have no reference point for your grief other than the grief any of us feels at the loss of a loved one. I can only imagine that the grief is magnified a million times over when you're grieving your child. I'm shaking my head just thinking about it because I simply can't imagine it.

    Even so, your post did remind me of the grief I felt when I lost my dear grandmother almost 20 years ago. When she died, I not only missed my Nanny, but I missed knowing that she was somewhere out in the world just being herself and sharing herself with others. I felt that I was deprived of her presence and her gifts but also that the world was also being deprived because she was this amazing person who made it better just by being in it. It sounds like that's at least an element in your grief as well. Hudson was obviously a child who shared so much joy with everyone around her. Perhaps remembering how very much she gave to everyone -- including you -- will one day soon be a comfort and a bit less of a source of sadness. That's my hope for you, anyway.

    Like all your family, friends, and loved ones, I don't have any magic words to say except that the love and support of a very large community is being sent out to you every moment. You've mentioned that you feel that support and I hope you keep feeling it like gentle arms around you, hugging you when you need it most. I have no authority at all for saying so, but I know you'll get through this because you sound like an amazing and strong person.
    ~Marie

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  2. We miss her, Mandy. I wore a raincoat the evening I came to the hospital and they gave me a visitor's ID badge that I stuck to my coat. I haven't been able to move that coat or to take off the badge. I can't reconcile what I saw, either, that day with all the many images of our little friend Hudson welcoming us to St. Ann's, smiling from your lap at the cafe, beaming with delight just because. She was beautiful, though, even in the hospital.

    I can't imagine the trauma you went through and are going through each day. I hope you won't be too hard on yourself. You are doing so much and are bringing hope to many people. Thank you for sharing all these intimate feelings. I know that I tend to get sad in a nostalgic way whenever the seasons change, and I am so, so sad that you - and we - will be starting another one without Hudson. I wish there was something else I could do, but I will at least be a witness, a sad witness, to your grief.

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  3. Oh god. I wish she was just sleeping peacefully. I'm sorry you had to see those things that no parent should ever have to see. I'm sorry she's not here. I'm sorry you couldn't save her through the sheer will of your love. Sometimes it seems like it might not be so bad anymore, that you might be having some better days and sometimes it just seems as awful as the first moment you realized that she was going to die. It makes me physically ill to imagine that moment and the images of her in her hospital bed with you and Ed hovering over her. It is so much easier to look at the pictures of her experiencing joy and living.

    I'm just so sorry she is gone. Because I did not know Hudson and because I did not see her during her hospital stay and because it is just too hard for me, I am just going to think of her as I know her from her pictures. I hope that love and joy is big enough to eventually outweigh some of the trauma you are experiencing. But I know in my heart that it is the love and joy that make her absence hurt so much in the first place so you can't really have one without the other.

    My thoughts are with you and Ed and Hudson tonight.

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  4. Your words are beautiful and heart-wrenching, as is your story. I'll continue to pray that you find peace through all this -- peace that many of us believe only God can provide. It really is a "peace that passeth understanding." But, whether you know it or not or believe it or not, He's there with Hudson waiting for you. . .

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  5. Mandy, I don't know if you heard the piece on NPR last week about the Compasionate Friends national conference. The father they interviewed lost his only two adult sons in an car crash last year-- and he kept returning to his feelings of guilt and responsibility. I thought, with tears, of you. Neither of you could have done anything to keep these horrible things from happening to your children-- and yet it is the response of a loving parent to feel that there must have been something to be done. I know only a fraction of what the image in the hospital in your head must look like; I have one, too, but not so terrible, and with a different ending. But it's one I cannot forget. I wish, oh, so much, that the only image you had was the first one. It just sucks, and lots of times there is nothing else to say but that (and worse.)

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  6. “Why couldn’t I save her? Why couldn’t I make it come out differently?”

    I hear you.

    Even from where I sit, never having met you, it seems impossible that Hudson is gone after seeing the wonderful photo of her spinning with her father.

    I'm so sorry. Thinking of you tonight (((hugs)))

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  7. Mandy,

    I can't pretend to know completely what it is that you are feeling, although I recognize my own voice in your words occasionally. Your beautiful daughter had been with you for much longer than my son was with us and for that reason I feel like your experience is wholly unlike mine in many ways.

    Our son had a heart condition diagnosed in-utero and we tried for five weeks to fix it with medication. Ultimately we had to stop because it was not doing much good and the medication was making my heart unstable. I developed pre-eclampsia because of his condition and we had to deliver him, knowing he would die shortly after his birth. I tell you this because I do understand that feeling of guilt you have. I feel guilty more than I usually care to express out loud. I failed in the worst way to keep my son alive. I know that feeling of self-loathing. Aside from him being gone, it is the most difficult part of all this.

    I am so sorry that you you have to carry around that terrible image in your mind of your daughter in the PICU. I hope that most of the time you are able to see in your mind's eye Hudson as she was in her life; happy and laughing and full of love.

    -Brianna

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  8. Mandy, I can't stop thinking about you. I thought of you earlier today as I parked the car before heading up to the office. I remembered how you were carrying around the antibacterial hand sanitizer right after Hudson was born and asked everyone to use it to protect her from a cold. You worked hard to protect your little girl from the very beginning. You are not responsible for her not being here. You are responsible for the fact that she came into this world at all. You helped her spread her laughter and light upon the world, albeit for too short a time. As is clear from the picture with Ed, she had a lot of fun while she was here. That is a responsibility that far too many parents neglect.

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  9. Dear Mandy,
    I have not lost a child, but in some small way I can understand your guilt. One of my daughters suffers the effects of bad decisions by her caretakers from before I adopted her, and although I knew her problems were not of my creation, just as Hudson's falling ill was not yours, when she suffered as a teenager through sorrows unimaginable to me, I felt guilty. "Maybe I'm not a good enough mother" went through my head over and over, despite my family and friends all reassuring me that I had done-that I continued to do-all I could to help her.
    I'm so sorry. It is just so wrong on many levels that Hudson is not here. I send hugs to you.
    Claire

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  10. Mandy,

    I came to your blog through a friend's facebook page when your husband lost his journal. I am so so sorry for your loss, your grief, your pain.

    Today is my birthday, and as I think of my goals and hopes for the coming year(s), I have returned often to your story of Hudson. Not only is her death a reminder to live every day to the fullest, and to hug and adore my own daughter extra; but the stories you tell of her life are also a reminder that there is so much joy to be had. Thank you for sharing your stories here. Learning about her life through you has brought more meaning to my own, and that's one good thing.

    -Iris

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  11. With the changing of this season, my heart ache's more. Time doesn't change the missing, wishing, and complete disbelief that our lives are forever changed. This is personal...so personal and incredibly void. There really is a big hole in all of our hearts in the shape of Hudson. xoxoxo Renee

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  12. Mandy, this was heart-wrenching to read. I am so so sorry that you have such opposite images stuck in your head...I wish you only had the image of Ed swinging Hudson, with that beautiful smile plastered on her face. I know it's impossible to erase the image of Hudson in the PICU from your brain...it is ingrained there forever.

    Soon after my grandmother passed, I had repeated images of her in the hospital with tubes and machines attached to her and of her laying on the table in the funeral home and then of her at my parents house kissing me on the cheek with her infectious smile...the images would pop up constantly. Although I cannot empathize with you in losing a precious child, I understand the struggle with resolving these images that don't go together...it's just awful.

    Mandy, I have to echo what Kim said so beautifully, "You worked hard to protect your little girl from the very beginning. You are not responsible for her not being here. You are responsible for the fact that she came into this world at all." I also remember you carrying the hand sanitizer and doing your best to protect your little girl. You were the best mom you could be to Hudson. She couldn't have had more caring parents than you and Ed. I hope one day that you don't feel so responsible for Hudson becoming sick.

    I wish I could say or do something to bring you peace. I continue to pray for you and Ed daily. As Renee said, there is a big hole in all of our hearts in the shape of Hudson.

    xoxo

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  13. Mandy -- You know you were the best mom a child could have. The hard part is believing that...but you will in time. Riding this wave with you and sending you healing vibes. Olivia

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  14. Perhaps the images you carry aren't as incongruous as they seem but are meant to provide some balance. I would hope that the beautiful image of Hudson smiling and spinning and being so joyful is your heart or mind's way of reminding you that she will never be defined by that last image of her in the hospital.
    The survivor's guilt is very real and I can't begin to count the hours I've spent wondering if the bacteria in Hudson's little body was introduced to her by something we did. I wonder if Emma brought it with her to their room, if my kiss on Hudson's cheek one afternoon left something on her that metastacized in her... it's agonizing. I wonder why the other children didn't show signs of it and can't begin to fathom how close they may have some to succumbing to it as well. My heart battles my brain in this type of thinking and it'll be some time to come before the two are able to reconcile.
    We miss her horribly terribly.

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  15. Just wanted to know that my heart aches for you...

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  16. Those images do seem so fundamentally incompatible. It made my stomach lurch to read about the contrast. But, as different as they are, your Hudson is the common thread going through them all and perhaps, as Katie says above, the beautiful image of Hudson being spun around by her daddy acts a balance? I hope that the final image brings you a little peace.

    As Brianna says, I can't pretend to know how you must be feeling. My own circumstances are also worlds away. But I remember howling that 'I let them down, I let them down.' I still feel as though I did some days. But I couldn't have stopped what happened. I don't believe that you could have either. The physical body is totally out of our control. Be it childbirth or illness or age.

    Your love for Hudson is so evident in every single word you write. I'm so sorry that she isn't here with you and I'm sorry that those impossible images have been forced together. It seems horribly wrong and yes, incongruous.

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  17. I just want you to know I'm thinking of you. Keep holding on, living will get easier bit by bit. You're not wallowing, you're letting the world know how much you miss your child. You are a good mother.
    Jackie

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