Mourning and Living

If I had to pick one word to sum up this whole experience so far it would be “bizarre.”

That’s probably not what you were expecting. Well, me neither.

Ever since Lucy was first diagnosed last November, we have had to face the prospect of her dying. But it seemed very remote in the beginning. Years away. In fact, they thought she would recover completely at first.

I remember being SO ANGRY at God after we first found out. I remember locking myself in the bathroom in the PICU at Dell Children’s and saying terrible things in a furious whisper to God. I remembered a line from “Reba”, one of my favorite TV shows, “God’s a big boy, Reba. He can take it.” But I felt like I’d really taken it too far later and was ashamed and embarrassed. Especially since, at that point, we were just looking at a chronic condition to manage her whole life. I can’t believe now that I was so angry at the prospect of her having to take medicines and see doctors her whole life. I would be so grateful now to still have that option. 

I went through so much anger and sadness those first few months. I could not tolerate the thought of Lucy dying or even being at risk of transplant. I didn’t want any of this. I refused to accept it. But when her condition worsened and we had the big vtach scare in February/March, I was forced to accept the intolerable. Transplant, anything, if I could just keep my daughter. Looking back now, I guess that was bargaining. 

Like any parent, I’ve experienced terrible fear of anything happening to my children. In my imaginings, the pain was unbearable. Then, the worst happened. My child died. I found her in her crib. I felt the chill of her skin and the lack of breath and snatched her up and saw the worst. I clutched her to my chest and ran downstairs screaming for my husband, knowing the worst. We both attempted CPR and watched paramedics work futilely. We knew it was futile. I tried to pray she would breathe. But I knew it was no use. 

It was all horrible. The worst thing that has ever happened to me. I still can’t quite believe it happened. Excuse my language, but how the fuck did this happen? How did my child die? Did this really happen to me??

The reason I say it was bizarre, besides the obvious, is that it doesn’t seem that different from other losses I have experienced. This one is more present. It stares me in the face everyday. It is such a shock to have a baby to care for all day, every day and just have it all stop. No more diapers to change or bottles to give. My arms feel empty. It feels strange to carry a purse instead of a diaper bag. I don’t know what to do with all this time.

 There is the inevitable guilt we parents torture ourselves with even in the best of times, not to mention a time like this. But I am still standing. I am still going. I don’t know how I am doing that. I even feel guilty I am doing that. But I am afraid not to.  

I know what it’s like to stop. I know what it’s like to let yourself fall into a pit and stop caring. And I refuse to do that again. That would not be fair to me, my husband, or my son. Or the rest of the people who love and need me. And it’s not what Lucy would want.

I feel like I went through stages of grief mourning the life Lucy would have had before she even died. I went through anger and sadness and bargaining and acceptance already. So, even though this was unexpected, we were somewhat prepared for it.  

But I worry that I’m not letting myself mourn properly. I don’t want to bury my feelings and have them come back and bite me in the ass. I’m doing my best to mourn and go on at the same time.

I am going to talk to someone. Don’t worry about that. The whole family probably will. But for now, I have to accept that the world is still spinning and I am still standing. I have to accept that I’m laughing while I’m also missing my daughter and scared out of my mind about what the future holds. I have to embrace the fear and embrace the future. I’m not naive enough to think we are insulated from further misfortune now. But I am doing my best to have hope.




  1. Laurie said,

    May 24, 2013 at 11:29 pm

    You have to be the strongest woman I know. Yes, you are standing and you are even writing about it. With every ounce of my being I wish you did not have to face what you have faced, nor do your family or friends. What doesn’t destroy us will make us stronger. Keep writing, Sara. Your strength is just beginning.

  2. May 25, 2013 at 12:34 am

    I am in awe of you…and thankful to be getting to know you.

  3. svanhvit said,

    May 25, 2013 at 11:13 am

    My dear Sara,

    I think you are handling all this amazingly. I think grief waves and ebbes, it is stronger and then it is less – or rather somewhat easier to handle for a while. You have been very busy, which always helps. For a while.

    I am proud of you. My heart aches for you. I wish I could take your load a bit on my shoulders.

    Keep doing well. All my love

  4. Lesley McLaughlin said,

    May 25, 2013 at 12:51 pm

    You write with such elegance and you paint such a vivid picture of your horrible experience. I hope that you see this as part of your mourning process, and that your feelings certainly aren’t being buried when you can express them so passionately for others to share and empathize with you.

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