Wednesday, November 9, 2011

Truths I have learned in the last year:

There are no right words.  But no words is definitely wrong.  Just an “I’m sorry” or “that sucks (perhaps with a bit of profanity thrown in)” goes a long way to making the individual still feel connected to the world.

Perhaps the worst aspect of grief or catastrophe is the sensation of being alone in the experience.  The power of making a connection with someone else who has experienced something similar really amazed me.

Joy and sorrow can go completely hand in hand.  I found a flip camera recently and there were some videos from the NICU in Chiron’s first week were Paul and I are laughing and joking.  In retrospect, it amazes me that we experienced anything other than anxiety, grief or just plain being overwhelmed.  But in the moment, the entire range of emotions can occur.

Macabre humor can be one of the strongest weapons in the arsenal to deal and continue functioning.

People are greater and stronger than I knew.  The strength and compassion of our friends and family in supporting us has floored us and continues to do so.  Humanity and our connections to each other I now am convinced is the main source of our strength as a species.

There’s a catch-22 in the loss of a child: others don’t want to bring them up because they fear it will make you sad, but it is much easier to discuss them when the other party is the one who “remembers” their existence.  I think this was particularly pronounced in my case as I have had so much trouble with vocalizing her actual name instead of just using pronouns.  Did it right there, see?  Aurelia.

There’s an Elizabeth Edwards quotation from a speech she gave in Cleveland that I think communicates the truth about discussing a dead child amazingly well: “If you know someone who has lost a child, and you’re afraid to mention them because you think you might make them sad by reminding them that they died—you’re not reminding them.  They don’t forget they died.  What you’re reminding them of is that you remembered that they lived, and … that is a great gift.”  In our case, Aurelia never lived, but I still think this is true.  And based on some friends I have known with miscarriages, I think it remains true there as well.

On the Elizabeth Edwards train of thought, I think she is on to something with her quote on resilience.  It was going around the internet about the time the twins were born and stuck with me: “Resilience is accepting your new reality, even if it’s less good than the one you had before.  You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”  I believe this is what we have done and our family is stronger for it.  I didn’t notice it at the time, but my philosophy I wrote about really is the same idea as what she said.

Someone connecting with what you are thinking can be incredibly powerful.  When Chiron was born, the most common statement was "Congratulations!," even from the nurses in the antepartum area.  While based on the very first truth, say some words, this was appreciated, it always felt a little awkward to me.  Were they congratulating me for delivering my son over ten weeks early?  This seemed odd to me.  One person said the exact opposite, "I'm sorry."  And she said this in the context of Chiron's birth, and I remember being so struck by her ability to acknowledge what I was actually feeling.  I don't think it is chance that this is a friend who has struggled with infertility.

The effect of someone including your dead child's existence as a part of their universe is powerful.  I'm pretty sure the passing comments, texts and messages that acknowledge Aurelia either directly or indirectly, through recognition that I have been pregnant with a girl child or with twins for example were made with no idea how much they could make me smile.  Thank you.

There's a semi-secret community of people who have lost children.  And whether through miscarriage, stillbirth or death as a child or an adult, everyone apparently belongs and that is nice.

There is no way to quantify grief.  I still try to think about whether one type of loss is better or worse than another, but I should know by now that you just can't rank these things.

Labels will always be hard.  The one in particular that I really have trouble with is whether I'm cheating somehow to count Aurelia as a stillborn child.  The strictest definition typically seen is at least 24 weeks and 500 grams.  She died just past 24 weeks and was born at 30 weeks.  When she was born, she only weighed 397 grams (though for some reason, this is the only number I don't feel completely certain on).  However, she weighed less because she had been dead for six weeks than she did at the time of death.  So, I think she probably does count.  And I know multiple babies who were born at the gestation she died who are alive and even developmentally normal.  I just feel like I'm cheating calling her a stillborn next to those who deliver full-term stillborn children.

The mind of a child enhances existence, even the hard things.  Trajan's understanding and processing of the last year has strengthened me and helped me in my own processing.  He and his mind remain the thing in the world that most amazes me (just starting to see this in Chiron as well). 

I am blessed.  And lucky.


  1. This is such an insightful post. Your ability with words just amaze me. You hit a spot I have often struggled with too. My baby was not a still birth nor was he a miscarriage. I fell down an entire flight of stairs. That night I knew he had not survived the fall. So like Aurelia, he does not fit in the mold. As I now anticipate the next event in our life, I think even more about Jeffery. AS I said yesterday, it is a love that remains tucked away in your heart. A love that only a mother has. It does not cheapen the love the father had, but it is a far different love. Aurelia is always there. 38 years later, Jeffery is always there.
    You make me think of a person I went to school with who lost a child in an automobile accident. He was driving. One day I asked him how he was and mentioned the child by name. His eyes welled up and he thanked me for remembering her. He told me that people dance around her existence and the fact that she had died. He wanted to remember and have her remembered. We all do. We never want the child we loved so dearly to be just a fleeting thought to others. We want the child to be remembered forever. I never held a breathing Jeffery in my arms, I never nursed him at my breast, but I loved him with the same fierce love I have loved all of my other children. I know, as do so many other mothers exactly what you are saying. It does not ever go away, it does become easier to bear.
    Beautiful boys you have there:)

  2. I love how you finished this post. You ARE blessed and lucky.

  3. Amazing post!

    And it does hold true for miscarriages, though I honestly can't imagine as acutely as it would for a stillbirth or a lost older child. The thing with a miscarriage, at least as it was for me, is that I was pregnant for a while and then I wasn't. And being pregnant and finding out it was twins, was a special time - followed by a painful time. I have a harder time acknowledging the special time that existed - we were very happy - because no one else will. It's like I became immediately unpregnant. Very weird feeling.

  4. I have a friend who sometimes talks about his infant sister who died before he was born; it's odd to hear (in that secret society way), but also sweet. She was a part of his life, a piece of his puzzle, even though they never knew each other. Does Trajan talk about Aurelia? Your boys should know her story and make it their own.

  5. Trajan actually talks about Aurelia pretty often. From lighthearted to deep, it's all the same to him and that's one of the things I love. No taboos in his mind. For Trajan, Aurelia's story is something he has always lived and knew in the same way that he knows most other things, particularly since we have been clear and honest with him and answered any and all questions. It's Chiron that I'm less sure how to cover the topic of Aurelia.

    Where it happens naturally with Trajan to discuss Aurelia, it feels like we would have to explicitly set out to tell Chiron about her. And I definitely don't want him in any way getting any sort of odd feeling that he's less because she died or guilt or anything like that. My gut tells me that I'm overthinking and it will just happen kn a natural, organic way.

    We shall see.

    It is weird how there is this apparent human instinct to say nothing or avoid a subject if it is dicey, like being treated as instantly unpregnant.

  6. There truly are no words other than Ï am sorry." But a friend that will come along and BE with you is worth their weight in gold.
    (You know Gramma 2 Many is my mom) You are right, there is no quantifying loss. It just hurts. You losing Aurelia, my mom losing her son, and maybe soon a daughter, me losing my sister. It just hurts. And, I am afraid, that there will always be some element of hurt.
    I hope that over time the hurt is laced with happiness and love. Because Aurelia will always be your daughter, and Kris will always be my sister.
    If I could, I would come sit with you, and you could sit with me.

  7. Gina, I'm with you completely. It is nice knowing that relationships continue whether we are dead or alive. There can't be an end to our story.

    And it is amazing what that sitting with, remembering, supporting or just an "i'm sorry" does to make the burden easier to carry.

  8. Thanks Tanika, as always you managed to say something that I didn't even know I needed to here.

    Interesting trivia fact, apparently the age stillbirths based on when they are born rather than when they stopped growing. So Aurelia is considered a 29&6 stillbirth. This is according to a medico friend. That just seems kind of funny to me!

  9. I just found my way over to your blog and this is such a wonderful post - so much wisdom here I was nodding my head all the way through. I come from part of the community who does understand, having lost a twin in utero. Mine were born after 5 weeks of hospital bed-rest later and we were incredibly fortunate that my surviving twin had a relatively short NICU stay. I'm sorry for all that you have been through.

  10. I so wish there were magic words to say/write. If I ever figure any out I promise to let you know. I also wish that there were not so many members if the baby loss club. As you wrote, we have to be resilient and accept our new reality - even if that new reality is without our babies. I hope that Aurelia, Jake and Sawyer (my sons) are having some sort of cosmic playdate. Take care.