Thursday, March 31, 2016

Doing things (on Star Legacy)

About a year ago, I organized a Lending Library for our local pregnancy and infant loss support group.  I was frustrated by the lack of related books our public library held (way to make me feel even more isolated), I was frustrated by buying books on Amazon that turned out to be crap, and I still had a long list related to stillbirth that I wanted to read.  I received about thirty book donations, made labels to dedicate each book to a baby, made a list of available-to-borrow book titles, and turned them all over to the support group leader (after reading most of them).

My next project was in honor of Lydie for her first birthday.  I fundraised money for a Cuddle Cot for the hospital where Ben, Lydie, and later, Josie were born.  Enough funds were donated not only to buy the Cuddle Cot but also several Moses baskets.  We officially donated the Cuddle Cot on Lydie's first birthday, and I wrote a letter that families at three different local hospitals receive when they have a perinatal loss.  I included my contact information and I've heard from several local families after their losses.  Sometimes it's hard for me to be taken back to the fresh grief, but I want them to know that they are not alone.

I'm a do-er.   I like to make things happen. I get frustrated when there's a lot of talk and no action (although my husband may sometimes disagree with this - ha!).

So now what?

What's next?

Soon after Lydie died, my mom and I were talking about where we could direct donations in her name.  My mom mentioned Now I Lay Me Down to Sleep, and while they are a very noble nonprofit and I will alway be grateful for our photos of Lydia, I found myself saying, "But they just offer comfort after babies die!  Why isn't anyone trying to stop the babies from dying in the first place?"

One in 160 babies are stillborn in the United States. 26,000 babies are stillborn a year.

Perfectly healthy mothers at the end of perfectly healthy pregnancies are losing their babies.

Perfectly healthy babies like Lydie die every single day.  (Around 72 babies in the United States alone every single day.)

I stumbled onto Star Legacy Foundation.  Their mission is to increase awareness, support research, promote education, and encourage advocacy and family support regarding stillbirth.  They work to educate not only pregnant women and families but also medical professionals.  They have a Medical Board, and work closely with Dr. Jason Collins, that one lone doctor who studies cord accidents and believes they are preventable.

They work not only to comfort families after loss, but to save babies.  To save lives.

That was where I wanted Lydie's donations to go (and to NILMDTS as well).

Over the next year, I got to know the directors personally.  A mother-daughter team, Lindsey and Shauna.  They started Star Legacy when Lindsey's first child and Shauna's first grandchild was stillborn.

They wanted to do something about it too.

Star Legacy is located in Eden Prairie, Minnesota and though obviously their research benefits all of us, most of their supports are offered locally.  As someone who has found my local support groups lacking and has cycled through three different grief counselors before finally giving up counseling all together, this is a frustration.

So, recently, Justin and I have been in communication with Lindsey and Shauna about creating an Ohio chapter of Star Legacy.

I'm overwhelmed just thinking about it.

To be fair, I'm overwhelmed with my life in general-- my needy and demanding (and lovable) almost-three year old, my adorable five-month-old, who doesn't like to sleep but loves to breastfeed, my grief, and my full-time job (and finding the time to pump three times a day while at it).

And yet I still feel called to do this work, to honor Lydia in this way.  To contribute to the field of prevention of stillbirth.  To raise awareness of stillbirth.  To do something.  It's a productive use of my grief and makes me feel more connected to my daughter.  It's a way to continue to mother her.

So far, we are discussing planning a 5k run/walk.  I am a runner; I love to run (which is helping my pants finally fit again!)  But I know nothing about planning a run and I bet it is A LOT of work.  We are thinking about trying to plan this for the fall, which would be great timing with Pregnancy and Infant Loss Awareness Day on October 15th and Lydie's birthday on November 6th.  But does that give us enough time to plan?   And where will we have this?  Do we have to close off streets, measure mileage, have police there, get timing chips, provide water stations and food at the finish line, give awards?  And if we did all this, would people sign up?

Our other idea is to plan an educational retreat for Labor and Delivery staff.  This seems doable because of the connections I still have with Lydie and Josephine's nurses.

Lindsey suggested first assembling our team.  I'm floundering a bit here.  Right now, our team consists of Justin and me and possibly my sister.  Lindsey wrote a blurb on Facebook asking for others to volunteer and so far, I've heard from no one.   And I could certainly use some help here.  Anyone, anyone?

Am I crazy?   Is this something I should be pursuing?

Suggestions welcome.

Monday, March 14, 2016

Missing her still (and earning my crazy)

I find it harder to write in this space these days.  In the early days after Lydie's death and birth - in that order -  I blogged everyday, sometimes multiple times a day.  Writing helped me process, helped me grieve.

These days, the words aren't as easy to find.  I could write "I miss her" over and over again.

I miss her.

I miss her.

I miss her.

For me, her absence is so present.  I see the space she should be.

I am always painfully aware of her empty space.

My sister and I are sixteen months apart, and growing up, I always wished my parents had waited longer to have me.  Gave us some distance.  It took until I was nineteen to realize that had they done that, I wouldn't be me.  That you can't just have the same child a year later.

So when I see sisters together and feel such an ache that Josephine won't have that kind of relationship with her sister, I tell myself, if Lydie had lived, you wouldn't have Josie.  I tell myself, you would have never (intentionally) gotten pregnant with a not-even-three-month-old at home.  You would have never had babies eleven months apart.

I tell myself, your view of your sister-daughters is warped.

But it doesn't give me much comfort.

All I want is all my children, here with me.  I don't want to have one instead of the other.  I just want them all.

And I'll never have that, not in this life anyway.

I'm learning to live with that, but I wonder if there is a time that I won't feel fucked over by the universe.

Lately, I've found myself acknowledging my three children without an asterisk.

When meeting with my new students at work, I said: "I am returning from my maternity leave with my third child."

I didn't feel the need to say:
with my third child* (*my second child died)

When the very pregnant Target worker asked if Josephine is my first child, I responded, "No, she's my third."

When she gushed, "Oh this is my third too," I nodded and smiled politely.  I didn't tell her, "well, my second child died."

I just didn't feel the need to.

Recently, I feel like my mood and emotions have stabilized a bit.  The grief can still hit me out of nowhere, but in general, I can predict the triggers, coach myself through, cry for relief when needed.  I have my support systems in place to send my WTF texts to regularly.

I was talking to one of those support systems recently.  A fellow BLM.   She called herself crazy and it gave me pause.  Haven't we earned our crazy?

Sometimes I stop and think about what I've been through: a perfectly healthy and normal pregnancy, being so excited to welcome my daughter in 5 short weeks, being told her heart had stopped beating inside of me, being induced and enduring hours and hours of labor to give birth to that perfect little girl, who happened to be dead.  Holding my dead daughter in my arms.  Studying her full head of dark hair, her perfect little nose, her cherry red lips that I now know is a trait of all stillborn babies due to blood pooling.  Saying goodbye to her, kissing her just one more time, turning my back. walking away, and leaving the hospital without her.  The next time I see her, it being her urn.  Picking up her ashes at the funeral home a week after her death, watching my husband cradle her in his hands and hearing him say, "This isn't how I imagined holding her."  Working through the guilt that she died inside me, that I couldn't save her.  That someone else had to tell me she died.

And reliving this trauma every single day.

While taking care of my living son, working a full time job, being forced into conversations with pregnant women while just trying to buy some shit at Target.

And in general, being expected to return to normal after that experience.  To function just like everyone else.

Not to mention, less than three months later, getting pregnant for the third time in two years.  Being, quite frankly, scared shitless for the next 37 weeks.  Being terrified that my third baby would die inside me.  Attending one to three doctor's appointments every single week, feeling like no matter when she last kicked, it was a distinct possibility that I would be told my baby no longer had a heartbeat.

Haven't I earned my crazy?

When I stop and think about all this, I think I'm actually doing quite well.

But I miss her.

I miss her.

I miss her.

I miss her.

Tuesday, March 1, 2016

After a real maternity leave, and other snippets

I've been back in the office for a few days now. At first, it felt like a little bit of a novelty to shower in the morning, wear something other than yoga pants (although let's face it, the options are few due to two babies in eleven months), and talk to other adults.  When kissing my living children goodbye in the morning, I may have shed a few tears, but I felt it was good for them to get time with their Dad or their Oma.  

I couldn't help thinking about returning to the office after my last "leave."  After Lydie died.  I spent the eight weeks at home on a "medical leave" (I did, after all, give birth) instead of a "maternity leave," crying on my couch.  I returned to work entirely too soon, in the midst of deep grief.  I spent most of my days crying in my office, avoiding other people (especially the coworkers who never said a word to me about my daughter), and generally, being unable to function well, much less care about work.

So let's just say, it was easier to return after Josephine's live birth.

But it still wasn't easy.

Let me preface this by stating that I don't think I'm cut out to be a stay at home mom.  I think I'm a better parent to all my children, Lydie included, as a working mom (who gratefully has the summers off).

But still, I have been dreading the start of daycare.  To be fair, it's not that hard to leave Benjamin.  He likes learning and structure and his friends, and he thrives in the school setting.  

But Josephine's only four months old.  For the past year, I have never spent more than an hour or two away from her.  We sleep a foot apart.   I was dreading putting her in the arms of someone I don't know and walking away from her.  Dreading not being able to look at her sweet face all day long.  Dreading spending the day wondering what she is doing presently.  

And how could I leave her with someone else all day after losing Lydie?

When I got in the car after handing over Josephine, I told myself, "This is not life or death.  This is not like losing Lydie," and then I cried.


One of my closest BLM friends, with a similar timeline of the loss of her daughter and birth of her rainbow baby, texted me a while ago and said, "I'm interested to see how you feel back at work.  It's weird how well I can concentrate without crippling grief or anxiety."  

And it's so true.  The grief is still there, obviously, as it always will be, but it's much more manageable now.  The anxiety also still exists, but it's nothing like carrying around a post-it note and marking each time Bowie Girl moved.

And it's true.  I can concentrate, be productive, even banter with coworkers.  I can talk to people who never acknowledged Lydie's death and birth, though I still know exactly who they are.  

As I've returned to work and run into more and more coworkers, most gush something like this: "Congratulations!  Welcome back!  You look great!"  I smile and say thank you.  Maybe even respond, "Good to be back!"

But there are a few who reach me at a different level.  They are the ones with tears in their eyes, who say something like, "I'm so glad that Josephine is here safely.  You've been heavy on my heart" or "I just think you're so brave." 

I'm so grateful for people like that. Who are willing to be vulnerable and real and don't sugar-coat.


For the last 15 months and 24 days, any time I hear about a baby being born, I think "Why not that baby?  Why Lydie?"  

I'm sure, if you haven't lost a baby, you think I sound horrible.  Just as I'm sure, if you have lost a baby, you think the same thing.  I wonder if I'll aways do this.  I wonder if I'll be 60 and think, "Why not that baby?  Why Lydie?"

Let me assure you, I do not want more babies to die.  Since Lydie's death, I have heard about so many other babies who were born still or died shortly after birth, and it always hurts my heart.  

Mostly, I just wish I never knew this pain.


The first day I worked, Ben wanted to cuddle in our bed when I got home.  That was fine by me.  He climbed under the covers, and pulled out Lydie's blanket, the one that is stained with her blood.  I still curl up with it every single night.  

"Careful with that," I told him.  "That's Lydie's blanket.  It held her.  It's very special to Mom."

"Lydia's in here?" he asked, unfolding it.

I talked to him about the blanket, how it held Lydie's body.  How she died and we miss her.

"Good thing I have a new sister now," replied Ben.

When I told my mom this story later, she laughed.  That made me want to cry.  It's so not funny to me.  His comment cut me so deep, cracking open my broken heart.

I am so, so glad Josephine is in our lives.  That she is here safely.  That I have a second chance to raise a daughter.

And I miss Lydie desperately.

Family cuddles with Lydie's blanket

There's been other moments with Ben, opportunities to talk about Lydie.  Like the time he hurt my heart because he said, "I no love Lydie.  I love Josie."

"You love both your sisters," I told him.  "It's just that Josie is here for you to play with.  But you love Lydie too."

"No, I no love Lydie.  I love Josie," he repeated.  

I sighed and stopped arguing.

My proudest moment was when I overheard him pointing to the sky and saying to his cousin, "That sunset makes me think of Lydia."  

It's hard to know how to talk to your kids about their dead sister.  Especially when you leave out the heaven part because you're so unsure of your own beliefs.  But in that moment, I believed we are doing something right.
Benji's Lydie sky


I've been getting out more lately.  A three-year-old's birthday party.  An indoor water park.  Both noisy, hot, loud, and overrun with babies and kids.  

Sometimes I have to remind myself that it's only been a bit more than a year.  A year ago, both these settings would have caused me total panic attacks.  

That's something, right?


Family pic at the water park.  Since neither Lydie Bear nor Lydie stone were available, I decided Lydie tattoo would be my best bet for the complete family picture.  It was mostly a joke, as I had said my tattoo really made me fit in with the water park crowd, but I kind of love this picture.


When we found out Lydie was a girl, my sister was one of the most ecstatic ones.  (You can read a column that she wrote about it here).  Our boys are best buddies, and we thought our girls would be best buddies too.  Both of us thought we'd only have two kids, and if our daughters wouldn't have sisters, then sister-cousins seemed pretty awesome.  My sister's daydreams included lots of matching outfits. 

the best buddies boys
My niece spent the year after her cousin's death feeling left out as she watched her brother and my son play together.

And now, she's pretty obsessed with "Josie Bowie," as she calls her.

And my sister, of course, has bought them lots of matching outfits.
Minnie suits courtesy of Pop-Pop's recent Florida trip
Matching cousins.  Missing the middle girl.
Of course, I'm glad Josephine is here, that my niece has a sister-cousin to play with and cuddle and match (and one day, be Maids of Honor in each other's weddings, but that might be getting ahead of myself).  

But it's also a mind fuck.  Because Lydie was supposed to be that sister-cousin.  And when I see the two girls in their matching swimsuits, I can't help but think about the size 18 month suit we should have also bought.  I can't help but see what's missing from the picture. Who is missing.

I'm so adamant that Josephine is not a replacement for her sister.  But then she literally wears her clothes ("Lydie's hand-me-downs," I call them, even though Lydia never got to wear them), has inherited her room, and matches her sister-cousin.  No wonder Ben says things like "good thing I got a new sister!" and no wonder most people just gush their congratulations without a mention of the one who is missing.

Mind fuck. 
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