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Monday, December 22, 2014

Grief and ranting

Glossy magazines glorify tragedy. Everything is summed up in 800 words and the tragedy becomes a feel-good piece. It’s spun so that a positive message is felt by the person experiencing the loss as well as person reading about the loss. It's fake. A handful of well-meaning people, who have probably read those glossy articles or seen glossy TV, have told me to snap out of it, get out of bed, out of the house, to be grateful for what I had/have, and face the world. That Riley’s goodness supersedes his death. Society wants me "to get over it," to have "closure," to be grateful that I have other kids. Not every story has a moral. And no matter how we spin it, Riley was better alive than he is dead.*

C only knew life as Riley's younger brother. He knew who he was because Riley reflected who he was back at him. For years, his sentences ended with: “Right Riley?” And I only know parenthood as Riley's mom, as the guardian of the boy with the crap heart. And now that he's died, I'm lost and I feel like a cliché. I'm broken, fragile, and shattered. I have lost any sense of self-esteem, I cower away from people and situations, am forgetful, stutter at times, am easily startled, and am entirely exhausted and drained. I start sentences with the phrase, “My therapist says…” For the rest of my life, I will try to figure out how to live without him, and I'm being gentle on myself and helping around the house and with the kids when I feel up to it. I suppose doing anything beyond the comfort of bed is progress from where I was a handful of weeks ago.

It sounds bitchy and horrible, but my other children are not Riley, and I don't feel grateful for much of anything right now (that doesn't mean I don't have things to be grateful for...my list is very long, but it's hard to have perspective on that even though I know there is much to be grateful for). I always told Riley, "Don't ever let your heart be an excuse for not trying your best." And he has recently told me, "Don't ever let my death be an excuse to lie around in bed all day." I hear him. I hear all of you. I'll eventually get there.

Also, Riley is with me in spirit. He is part of my essence, just as I was part of his. He is everywhere. And yet he is nowhere. And having him in spirit is not the same as having his skin to caress, his hand pressed into mine, his hair to bury my face into. They are different. Your attempts to convince me otherwise are your attempts to make sense of something that doesn’t make sense and will never make sense, no matter how many times you throw God’s will into the mix. And if my brand of mourning happens from the comfort of my bed with my laptop warming my knees, I'm okay with that.
My son died
My son last Christmas, not hiding his scars

So yes, I have four children and I don’t have four children. I can hug three of them. I can tuck three of them into bed. I can hear three children’s voices. One of them I can hug only in my mind, I can listen to only in my thoughts, and his empty bed will never we warmed by his beautiful and imperfect body. I assure you, gentle reader, that they are not interchangeable.

For 11 1/2 years, I rehearsed Riley's death. I imagined it his whole life. And as horrible as I imagined it, imagining it is nothing like living it. The permanence of it is crushing. With each of his other hospitalizations, it was horrible and horrific, but it ended. He eventually stabilized and came home. There is no coming home. There is no going back. This is forever and all I want is for it to unwind itself. But here I am instead. I will lie in bed and write and cry. I will take C to the dentist and the kids to school. I will be mad and scream into the carpet until I burst hundreds of capillaries around my eyes. I will also laugh and feel lightened when Riley sends letters into my head as he did the other day. It's so fucked up and unbelievable and unbelievably true. Yes, my husband and my other people need me. My therapist says that life is a marathon and not a sprint. And I get to fumble around in grief on my own timeline, even if it makes you uncomfortable, even if you think I'm doing it wrong.

My spectrum of feelings on any given day—or hour, or minute, for that matter—is broad, nonsensical and nonlinear. I will take the time to grieve in my own way, feeling all of my feelings that crush and motivate, that paralyze and swell, that punish and rage, that open the lines to communicate and clamp them down again, and I will not apologize for any of it. Rant complete...

*To be clear, Riley alive and suffering is not better than him being dead and free from medical horrors. When I say, "Riley was better alive," I’m talking about Riley living, away from the hospital, going to school, spending time with friends and family.

9 comments:

  1. I don't know you and this is the first time I've seen your blog. I can't remember how I stumbled across it. My heart truly breaks for you. :*( I am so so sorry for your loss. I have never been through the deep deep grief you are going through now, but to me, you seem like a very strong woman... one who is self-aware, aware of her loved ones around her and their needs. It seems like you are doing the best you can for yourself and for them. I will be praying for you & your family.

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    1. Thank you Lyndsey. I like imagining that even those who haven't been through my brand of grief can relate to the idea of fumbling around and feeling lost.

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  2. (Hoping this isn't a duplicate comment...my 1st comment has disappeared.)

    I'm so sorry. I lost my son Ben 11 years ago on December 30th. There hasn't been a day I've not missed him, but that's not something people want to know. You don't "get over" or "move on" and I don't know why people think they can tell you to do so. You don't get over losing a child. You learn to live with it, much as you don't want to, you miss them constantly. You find a "new normal" you do not want. It will get easier, but not for a long time. It will never be "easy" or "ok." Never. Hugs to you.

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    1. Thank you for telling me about your son Ben, and I can only guess what the end of December feels like for you as I wonder what next October will feel like for me and the October after that and the October after that. I went to a Compassionate Friends candlelight memorial that was held in lieu of their December meeting and there was a spectrum of feelings as I sat among the other families. Mostly, I hated that I had this huge thing in common with all of those people. I don't want to be in this group of parents. I don't want it to ever be normal that my son is dead. Yet, there is no other choice and time will accumulate.

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  3. Anonymous1:03 PM

    I absolutely agree Virginia I lost a daughter 3 years ago, you don't get over it, you live with it. Never a day goes by that I do not think of her or send her love. A few of us know how you feel, and no you are not doing it wrong. It is ok lots of love to you!!!

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    1. I try to imagine that everything coming my way is just well-meaning people wanting to help me feel better. It's hard to accept that there is no way to help me feel better. Of course people want to say something useful (because our culture has trained us to believe that there are useful things to say that can fix sorrow), but there is nothing useful to say. I love that I had Riley to love, but that no number of days or years would ever be enough. And no number of days or years will ever be enough time to get over losing him.

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  4. Anonymous6:32 PM

    I am so sorry for the loss of your beautiful son. He's there, but he's not. I cannot imagine how awful it is.

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  5. Angela Naughton12:11 PM

    Every time I read your updates, I am blown away by your prose, and your ability to capture your feelings in such an honest manner. Thank you for recognizing that we cannot always fix things, only realize that there will hopefully be times, even limited, when one can perhaps live his or her life parallel with grief, rather than perpendicular to it.

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    1. Thank you for writing to me. Thank you for teaching my son. I hate that his death is unfixable, and for most of the children he knew--including my own--they've all been taught that everything is fixable. Let's get a band-aid, let me give you a hug. A mother's breast fixes nearly everything--every owie, every tumble, every startle, and every hunger pang. But this is unfixable. His death has made families confront this horrible truth. It's made all of the students expand their minds beyond themselves. I've been moved by the way that students made sense of it, the way they wrote his name on their arms, wore green on the Friday after his death, sold wristbands, made and instagram page, held bake sales, organized a 3-mile run to raise money. I think all of those are examples of being parallel with grief. I have yet to figure out what that looks like for me. For now, writing is my way to temporarily make sense of all that churns through me. I can make sense of words when I cannot make sense of my son's death.

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