Friday, February 12, 2016

15 months and 6 days later.

My rainbow baby is 4 months old today.  I remember the fear so vividly - the fear that I'd never have another living child - that was all wrapped up in my grief one year ago.  I remember the fear of that pregnancy so vividly. The fear that at any moment, her little heart could stop beating inside me, for seemingly no reason at all.

 Sometimes I feel like all that anxiety has settled deep into my bones.

Last week, in some good sales, I bought Josephine some clothes for next winter.  There was a voice in the back of my mind saying, "Awfully presumptuous of you, isn't it?" and asking, "Are you tempting fate, by planning on this daughter growing up?"

It never goes away, though the anxiety is a whole lot better than it was a year or six months ago.


Next week, I return to work part-time, then full-time two weeks later.  A part of me is relieved; having both Benjamin and Josephine home with me during the winter months has been rough at times.  I'm also looking forward to a regular shower schedule and dressing in clothes that aren't yoga pants (which likely means leggings considering my own pants still don't fit).  And then I feel guilty for feeling relieved.  How could I want to do anything else but spend my days with my two living children?

So there's the relief, and the guilt, and there's the anxiety.  How will I be able to leave Josephine with a virtual stranger, after all that we've been through?  After all it took to get her here? How will I be able to be apart for her for over 9 hours a day, when we've never been apart for more than an hour or two, and even sleep a foot a part?

I remember when I went back to work when Ben was 6 months old.  I cried dropping him off at daycare; I spent my whole first day in the office wondering what he was doing.  It seems completely different after losing Lydia.  It was hard then.  It is so much harder now.

Gratefully, in my transition back to work, first my husband and then my mom will be with the kids.  That will help, I think.  But right now, I just feel dread.


On a side note, after getting home from all kinds of errands this morning, I found that Ben had been carrying this rock in his pocket the whole time.  "A Lydie stone, like Dadda's," he told me. This is after last night, when lighting Lydie's candle, he said, "Go away, Lydie," and I replied, "Don't talk to your sister that way."  Almost sounds normal, I thought.  Just for a second.


Lately, the secondary losses that accompany the death of my daughter feel huge.  I told my sister recently that she is the only one I feel like my old self with.  "What about Justin?" she asked.  No, I responded.  I don't feel like my old self with Justin either.

Later, I realized why: Justin's not his old self either. He's changed.  He's different.

How could he not be?

We both are.

I used to be an extravert, very social with a lot of friends.  I now prefer to stay in my Fortress of Solitude.  Fewer unpredictable triggers.  I also still have a hard time making conversation.  Want to talk about cord accidents, stillbirth, NSTs versus BPPs?  I'm your girl.  But regular conversation is tough for me.

I miss my old friendships.  But I think that is part of missing my old life, missing the old me.  I started counting the number of close friends I have lost since Lydie died, but once I got to seven, it was too depressing to continue.  They say that grief lasts longer than sympathy, and friends continue to drop off.

It's lonely.

There's been many different reasons for the changes in friendships.  Lack of compassion when sharing pregnancy news.  Perfectly valid complaints about their (living) children.  Sending a sympathy card but never again mentioning my daughter or my loss.  Telling me to call when I feel like talking, which is essentially never, and then not hearing from them again.  Hell, even having babies born alive the same time as Lydie was born still.

Fifteen months later, I am trying to recognize that my friends have not known what to say or how to support me.  I am trying to remember that though they have hurt me, they likely have good intentions.

Last weekend, we ran into neighbors who used to be friends at the neighborhood park.  Their transgression?  Their daughter was born alive two months after Lydia died.  They are the ones that I literally turned and ran away from last spring, and then hyperventilated the whole way home.  This time, I took a deep breath as I walked up to them.  I said, "I didn't mean to cut you out.  I'm sorry.  It's just been really hard."  And we had a short conversation, with their one-year-old daughter in the stroller right next to us.  It was hard, and it was good.  I walked away feeling proud of myself.

For a long time, I've avoided the triggers.  Literally run from them.

Recently I've been wondering if I need to push myself more.  There are things I think I will never do again, like attend a baby shower.  But there are some triggers I probably need to stop avoiding.   Like one-year-olds. And birthday parties.

So, tomorrow, we're driving a couple hours to my closest friend's son's birthday party.  Lydie won't ever have a birthday party, at least not one where she is present.  But this friend is one of the few who has stood with me and continues to stand with me.  And as much as I worry how I will manage the triggers, specifically, the boy who was born alive a few months after Lydie, the family with three living children, and the close-in-age big brother, little sister combination, I've decided we should go.  I have decided that I need to start working on being a better friend.  A more present friend.

Everyone there will know about Lydie, and no doubt, someone will say the wrong thing.  I hope I can respond gently and appropriately.

Wish me luck.

Friday, February 5, 2016

Sharing Lydie's Story on NPR

Yesterday, I was invited to a presentation of more Cuddle Cots to area hospitals.  I was feeling crappy, as was Ben, and wasn't going to go, but then I worried that I would regret it.  I am always appreciative of the time and space to speak about Lydie, and I didn't want to miss an opportunity to do that.  So we bucked up, donned our "work clothes" (quoting Benjamin), and off we went.

I'm glad we made the effort.  The local NPR station was there, and just as we were getting our coats on to leave, they asked to interview me.  Caught me by surprise and I wish I would have managed to say "you know" less (apparently that's my space-filler?) but I am honored to have the opportunity to share my daughter and raise awareness of stillbirth.

You can listen and read here:

Columbus is the first major city that has Cuddle Cots in every single hospital.  It's ground-breaking, really, and I'm so glad that my work, as well as the financial support from family, friends, and even strangers, has made this possible.

And I also wish we had the chance to use a Cuddle Cot.  I wish we had more time with Lydie.  I wish Justin had bathed her.  I wish I had sang to her "You are my sunshine, my only sunshine."  I wish there were some moments that I would have been able to stop crying while she was in my arms.  I wish we didn't have to witness our daughter deteriorate.  I wish the image of her face wasn't already blurry in my mind, not quite 15 months later.

A few days ago, Benji, Josie, and I met the two nurses that delivered both my daughters for a playdate and then lunch.  Between breastfeeding our babies, wiping noses, squeezing ketchup packets, and hauling toddlers to the bathroom, we talked about our time with Lydie.  I said I have some regrets, but that I was operating in such shock.  That no one should ever be asked whether they would like to cremate or bury their child while they are in labor.  They asked me what those regrets are, how they could help other parents have fewer regrets.  I told them that when I was asked how much pain I wanted to feel in labor and how mentally present I wanted to be, I had no idea.  How mentally present would you like to be when delivering your dead child?  I could have really used some guidance there, because now I know the answer: VERY.  Very mentally present, please lay off the morphine.   I told them about how Justin burst into tears when he read how another dad gave his stillborn baby a bath.  How Justin had always planned to give Lydie her baths just like he bathes Ben.  How he realized Lydie had one bath in her life and he wasn't the one to do that.  How nothing will ever change that regret for him, how it's something we just didn't think of at the time.  How maybe a nurse saying, "Hey, would you like to help me clean up your child?" would make a big difference in that father's life.

I'm not criticizing these nurses.  They are incredible.  They were so compassionate in their care of both Lydie and me.  They asked to be with me for Josephine's birth, and they were just as compassionate with me in those highly emotional moments.  They have played such an important role in our family's story; I will always hold them so close to my heart and I am so glad we have become friends.

But when you haven't experienced those moments yourself, it's hard to know how to handle them.  And when you are experiencing those moments, you are in such a level of shock.  You are making impossible decisions about things that have never crossed your mind.

The nurses asked both Justin and I to be on a panel to help educate other nurses.  I can't wait.  I'm so glad they are looking for opportunities to do better.

Thirty years ago, stillborn babies were whisked away without their parents even seeing them because it was believed that would be too traumatic.

Fifteen months ago when Lydie was born, not one Ohio hospital had a Cuddle Cot.  Now they are in every single Columbus hospital.

Things are changing, and Lydie's part of that change.

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