Just Let It Go.

Due to the nature of his job (and the nature of his brain), my husband spends a lot of time reading news and stories online.  Due to the nature of my job (and the nature of my brain), I totally ignore most of what he deems interesting enough to send to me.  But last week was different.  Last week he forwarded an article with a “You Must Read This” declaration in the subject and a comment that said “I think you really need to read this.  It’s going to help.  Please please read it.”

So I read it, at work, sitting at my desk and eating my lunch and trying to appear to my staff that I was working through my break.  And then I closed my browser, finished my lunch, and got back to work until the end of the day rolled around.  I packed up my desk, picked up my daughter from daycare and took her home.  I cooked her dinner and fed her, gave her a bath, read her a story and put her to bed.  I unpacked her dirty clothes from her day at school and put her many little lunch containers into the dishwasher for a second wash.  I packed her extra clothes and diapers and newly full lunch bag to have waiting by the door for the morning.  I cleaned up the kitchen and put away the toys and the books scattered around the house.  And then I sat down and cried.

There is so much joy 1

This was not one of those “I’ll feel better if I let myself go for a few minutes” cries, but a cry that felt like it could last forever and still not expel the sadness that was living inside of me.  This cry was an overdue admission that this limp I have been trying to hide is a sign of something much more serious than just a mild emotional strain.

The article itself was no big deal.  Pretty short, pretty straightforward, but it cut to the heart of something I’ve been feeling ever since my daughter came home from the NICU – that my daughter had survived intact, but I somehow had not.

I’ve written about my NICU experience before about this on this blog (here and here), and the idea that this sort of an experience would have a lasting emotional impact on any parent shouldn’t really come as a surprise, but more often then not when I’ve tried to talk about my continuing feelings of fear or those creeping tendrils of depression, the response from most people has been, “But your daughter is home and she is healthy!  There’s nothing to be sad about anymore!”

Here is what those people don’t understand:  The night I gave birth to my daughter, I spent several hours alone in a dark hospital room, incapacitated physically from the epidural and incapacitated mentally from the shock of losing my daughter.  Visiting hours had ended, the doula had been kicked out, and my husband was somewhere with our daughter, living his own nightmare.  That night, in that room, I experienced my daughter’s death.  I couldn’t get any word from the doctors, had been abandoned by my nurses, could get no news from anyone.  I took all of this silence as confirmation of the worst.

Now, even though my child is alive, I cannot shake the memory of her death.

Which takes me back to this post, “Haunted by a Child’s Illness,” from Dr. Perri Klass.  She writes, “The emotional trauma of the experience, the parental equivalent of coming through the wars, can echo for years.”  When I read this sentence it was the first time I felt that even a sliver of understanding could be possible, the first time I felt like I wasn’t alone in what I was experiencing.  She goes on to describe a new study just published in Pediatrics that explores post-traumatic stress in parents of sick children, a discussion that reads at times like a checklist of my symptoms – the anxiety, the flashbacks, the avoidance, the nightmares.

There is so much joy 3

I want to reiterate that my daughter is okay – better than okay, in fact.  She’s exceptional to the point that I sometimes wonder whose child she really is, I wonder if there wasn’t special serum in one of those IV tubes they used to pump her full of meds and meals.  The only indications that anything went wrong at birth are the tiny little scars on her hands from where the IVs went in (three marks on her left hand, two on her right), and the distinct absence of any photos from her first week of life (we didn’t want any visual reminders of those first difficult days – as though we could change history if we just pretended hard enough).

My daughter is okay, but I am not.  My daughter is a normal child, but I am not a normal parent.  I am afraid all of the time.  When I say I’m afraid that my daughter will fall and hurt herself on the jungle gym, what I really mean is that I’m certain she will fall and kill herself.  When I say I’m focused on my daughter eating healthy food, I mean that I am certain she will develop an autoimmune disorder if she eats one meal without organic vegetables.  When I say I’m worried about climate change, I mean that I’m certain western civilization will collapse before my daughter has had the opportunity to live a full life.

Dr. Klass quotes the author of the Pediatrics study as saying, “It’s my belief a parent who’s traumatized is always expecting the other shoe to drop, will always be scanning the horizon.”  This is me in a nutshell.  My life is exhausting not because I have overscheduled myself, but because I see the potential for catastrophe in everything around me and it takes every last ounce of energy to hide this anxiety from my daughter – because nothing makes me more afraid than understanding the negative effect I could have on her emotional development by letting myself become a manic, panicked, frantic mom (yet another heartbreaking fact this little article confirmed is a valid concern).

I wish I could find a way to write about these feelings and these experiences without coming off as crazy, without it sounding like a cry for help, because on a day to day basis, I’m doing fine.  Despite the challenges, I manage to juggle a lot of priorities, manage to maintain a busy, relatively successful, and generally happy life.   My daughter is a source of constant joy, and most of the time this is enough to keep me present in a way that allows me to recognize the difference between natural parental anxiety and the post-traumatic depression or daytime nightmares that are beyond the range of normal.

And every time I feel the panic start to set in, I take her little hands in mine and I look at those tiny little marks, those tiny scars that helped to save her life, and I remind myself that she didn’t come back from the brink of death just to spend her life in a house filled with fear.  Usually that’s all I need.

There is so much joy 4

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15 thoughts on “Just Let It Go.

  1. A heart-searching and compelling read. I would love to comment more on this but it is so far outside my experience I just don’t feel I can. I do know, though (this I have experienced) how the tensions and the fatigue of overwork can cause intense emotional stress. That persuasion led me to reassess my life and the true value of ambition.

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    1. Yes, this sort of life and death experience really does put everything into perspective. I never thought I would let go of certain goals and ambitions so willingly, but it’s amazing some things just don’t matter so much to me anymore.

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    1. Thank you for telling me I’m not crazy! Which in and of itself is probably kind of a crazy person thing to say, but after you experience something so unbelievable, crazy really does become a relative term… But thank you nonetheless for your kind words 🙂

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  2. THIS IS ME! Jeez, what a relief to read this post. Of the MANY lines that hit me hard, this one in particular struck me – “we didn’t want any visual reminders of those first difficult days – as though we could change history if we just pretended hard enough).” There was a project underway at our NICU where beautiful photos were being taken with the parents wedding rings on the ankles. I couldn’t bear to have those photos taken. I knew if the babies didn’t make it I’d never be able to wear that ring again. We were fortunate as well, after a 3 month stint in the NICU my girls came home the same day with heart monitors. They were on those for three months then miraculously caught up size-wise and developmentally at age two. I’ve written a little about our experiences, I’d love to have you stop by my blog and search on NICU. Thank you so very much for this post and making me feel a smidge more normal.

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    1. Every couple of months we get a newsletter from our hospital’s NICU parent volunteer group (in which I am still unable to bring myself to participate) with all sorts of stories and photos of tiny little babies with all of the tubes and tape and machines everywhere. It took me a year to even open the envelope these newsletters come in, and it wasn’t until last month that I was able to actually read one. Too many memories that I have been trying too hard to do away with.
      Don’t ever think that you are not normal. The birth of our children should be an experience filled with joy – when instead your child is removed from your body and embraced by medical devices rather than your own arms – there is an intensity to this pain that not many people can understand, and it’s not an experience that is easy for us to leave behind.
      Your blog is so upbeat – I think you are on a good path to making peace with those difficult experiences.

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      1. I am amazed at what all u can’t seem to remember in day to day life, and forget about the details of that first year (post NICU)… But I remember that three month stay with startling clarity. Someday I will write about it. I look forward to reading more and more on your blog. Have a wonderful weekend. Best wishes to you and your family.

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  3. Anna, you are so articulate and emotionally honest have you ever considered starting a support group for young parents who are struggling to come to terms with the same anxieties and fears you are experiencing? You would be amazing and helping others to learn to cope with the myriad of feelings surrounding a sick child might help all of you to heal.

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    1. Oh, if only I could be this honest in real life. It took nearly two years and a revelatory NY Times blog post to help me find the words in the medium I am most comfortable with, I wish I was the sort of person who was good at sharing or consoling off the cuff and face to face.
      Though I will say that one positive to come from my experience in the NICU is that I am much more honest about how I’m feeling, and able to experience a level of empathy for others that I used to keep walled up along with the rest of me – particularly with others in the midst of their own life and death moments.

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  4. So grateful that you linked back to this. It’s such a formative experience as a parent. When you expect childbirth to be one thing and it’s totally not that thing then you are set loose into this place where your hormones are wild, wild West, your body is literally shredded and you are just lost. What a horror. I am so sorry this happened. And I’m so glad you found a way to write about it so candidly (to give a head’s up to the pre-Mama world) and that in the end you have a glorious baby (child) to show for it. Headed over to comment on newest post now…

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    1. Thanks for taking the time to read this. You say that you’re glad I found a way to write about it candidly, but honestly, it can be tough to write about anything else some days. Like, I want to wear a sign across my chest that says My Child Almost Died, because the filter it places over your view of the world can be just so strong at times. But – she’s perfect and amazing and alive, which is more than I can say about what a lot of other parents in that NICU ended up experiencing. It’s a knot inside of me that I don’t know I’ll ever find a way of massaging out (though the writing definitely helps).

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