Friday, September 8, 2017

Litty's Loop

On the day we found out our daughter's heart stopped beating, Justin and I looked at each other and asked the question, "Do we still call her Lydie?"

Lydie was a name to be cheered at soccer games, yelled when she was dawdling instead of putting on her shoes, announced proudly in a crowded auditorium.

It was a name for a living girl.

We didn't verbalize it, but I think we both thought the same thing, Do we save this name?  For a living child?

As a side note, that's exactly what used to happen.  My grandfather, whom I called "Opa" was one of seventeen children.  Two of his siblings died in infancy, and in both cases, the subsequent child was named the same name.

It didn't take us long to answer our own question. Yes, we still call her Lydie.

No one else could ever be Lydie.

When we picked up her ashes from the funeral home and I held her tiny urn in my hands, I stared at the certificate that accompanied it.  Lydia Joanne Welliver, age 0.  The name I had scribbled countless times on the side of my meeting notes, after Sydney and Emma had been decided against. The first time I ever saw her name in print was on a cremation certificate that will be needed if we ever decide to bury our daughter's ashes.

I gave my daughter the most beautiful name, and I mourned that I'd never get to use it as we planned.

Over a beer with the Dead Baby Club (my brother told me he wouldn't babysit again if I referred to the friends we met at support group this way), I admitted out loud that sometimes I liked to think of Lydie as "Litty."  Litty sounded the same but wasn't nearly as pretty, and so, therefore, it didn't make me as sad that I didn't get to use the name Litty as planned.  It epitomized the fucked-up nature of life after loss so well, we roared with laughter and choked on our beer, joking about how the wait staff purposefully sat us in the back of the restaurant because the DBC just wasn't appropriate enough to be around other patrons.

I'll always grieve not getting to shout my daughter's name during loud swim meets, but I am grateful that her name is used regularly these days.

It's just as beautiful of a name as it ever was.  A beautiful name for a beautiful girl.  I still scribble it on the side of my meeting notes.

Now I also get to see her name scrolled across headlines, on t-shirts on loved ones and strangers.  I get to hear her name come out of the mouth of strangers.

That's right, it's Lydie's Loop season again.  (Or if you prefer, which I no longer do, Litty's Loop.)









This makes me cry 9 out of 10 times. And yes, I've watched it that much.

We are less than a month from Lydie's Loop. I'm busy trying to find a photographer, trying to find a balance between successfully promoting the event and annoying people, calling Meijer 15 times to ask about my letter requesting food donations, deciding on the shirt design, and picking up raffle items.  Of which we have over 35 confirmed donations, most of which I'd love to take home, including 4 Browns vs Packers tickets, 4 2018 Indians tickets, 2 sets of Blue Jackets tickets, a family membership to YMCA, a Portraits by Dana portrait, bread every day for a year from Panera, 3 Night Sky posters, a memory chest made by my uncle, a Kate Spade bag, just to name several.

We were so BIG (280 participants!) and so SUCCESSFUL ($21,200!) last year that I worry we will not be able to live up to that this year.  But then again, if we don't, we don't, and any amount of participants promote awareness and build community and any amount of funds help prevent stillbirth and comfort grieving families.  And either way, no matter how many people or how much we fundraise, I get to speak and write and read my daughter's name. And in all my hours and hours of volunteer work, I get to actively be her mom.

When people ask me about my kids and their ages, I respond: "Benjamin is 4, Lydia would be almost three, and Josephine is almost two."  If they catch it, they often ask, "Would be?"  And sometimes I say, "Yes, she died just before her due date.  But I chair a nonprofit organization and run a fundraising event in her name, so she still takes up a lot of my time."


To those of you who have signed up, thank you.  And to my baby loss friends, I'm glad your child's name will be written with Lydie's.  I'm glad you get to wear your speak and write and wear your child's name, that you so lovingly chose, and that we can parent our children together.


Would be remiss if I didn't share these links...
www.lydiesloop.org
https://www.facebook.com/events/380074122362962/

Wednesday, August 23, 2017

1000+ Days Later

Last time I wrote about how much harder it is going through life not believing that things happen for a reason.  About how bad things happen to good people and life is a clusterfuck and I have a lot less control than I would like to believe, which all causes me a notable amount of anxiety.  The next day, Justin came home from a doctor's appointment with the news that the urologist found tumors in his bladder which you know, could be cancerous.  I was still googling the shit out of bladder cancer and trying to wrap my head around what Justin just told me while not freaking the fuck out, when it became more and more apparent that Josephine had an alarming spot on her bum which was may or may not be connected to her fever that seemed to be rising. Within three hours of Justin's maybe-cancer news, I was at Children's Hospital with Josephine.   Where we spent the next three nights. I shared on Instagram and Facebook - and so many people responded things like "Oh my gosh, you guys have been throughs so much," having no idea that several hours before we checked into Children's Hospital, Justin came home with the news that he may have cancer.

Because you know, clusterfuck.

Parenting after loss brings an extra level of anxiety, and watching my rainbow girl get poked and prodded and hooked up to IVs (at 2 am) was heart-wrenching.  Scarier still, was holding her as she was given laughing gas, handing her off to a doctor to carry her off to put her under and then perform surgery.  But also, parenting after loss brings a different perspective.  The hospital stay - and the recovery afterwards - were difficult, but all that mattered was getting her healthy and bringing her back home - whatever we had to do that.  I'm grateful that her health concerns were not something that will have long-term impacts.

Wifing after loss brings more anxiety.  Because you know, clusterfuck.

But I am grateful to say that after several weeks of fearing the worst, Justin had a biopsy and we found out the tumors were benign.

It's been a hard summer and I'm looking forward to fall, even though, it's Lydie's season.
__________________________

Yesterday morning, still wrapped in my towel, I peered out my bedroom window, intentionally to check out the eastern sky.  Like I thought it might be, the sky was pink.

"Good morning, Lydie," I said out loud.

Immediately, her wind chimes sounded.  The ones that read, "Hear the wind and know I am near."

It felt like she was responding, "Good morning mama."

______________________________________

I tried to keep this moment in mind yesterday when we stopped to talk to some neighbors while on an evening walk.

We had already passed them once, and Josie was waaaaaay excited about their little baby.  To the extent that she tried to turn around and follow them.  As we tugged her a long, she shrugged her shoulders and cried, "baby all gone!" So she was quite pleased when our paths crossed again on our circle.

The mom started talking to me, and this meeting-new-people-thing is hard for me.

Her first question was: "How far apart are they?"  Grimace.  It may seem like a simple question, but it's not.  I had to immediately decide whether to mention who fills that space.

This time, I didn't.  Just responded, "Two and a half years."

She gestured to Josie, who was currently waving at the baby, "I think she is telling you to have another one," laughing.

I said nothing.  What's there to say besides, "I just met you, nothing about what you just said is simple, and I'd appreciate it if strangers stayed out of my reproductive business."

Then finally, after more conversation, she said, "So you just have the two?"

And that one I couldn't ignore.

Nope, I don't just have the two.


_______________________

The day before, I was watching the solar eclipse with a gathering of colleagues when a faculty member asked me, "How old is your oldest now?"

I noted the use of the superlative.  Oldest.  I sometimes say, "My oldest is four and my youngest is two."  It's not grammatically correct to use the superlative with fewer than three things.  It's a nod to my middle without the awkwardness of saying, "and my middle is dead."

But did she know this?  Was it's use intentional?

I kept it simple, responding, "Four."

"And your youngest?" she continued.

"Close to two," I responded.

She told me she remembers that because my two children are each a year younger than her two.

Almost like we have the same family... but not.  But again, I just nod.

But later, Lydie came up in conversation with another colleague and I turned to the faculty member and said, "My middle child was stillborn."

"Oh, I know," she said.  "We were pregnant at the same time."  She proceeds to tell me how everyone told her "Heather's baby died!  Make sure not to say anything to her!"

Right.  Because the correct thing to do when someone's baby died is NOT SAY ANYTHING TO HER.

Almost three years later, it's strange to have people tell me how they heard the news, how they responded. We laughed about it and as I walked away, I thought, "How the hell is this funny?"  Where am I that this is funny?
_____________________________


There was a moment earlier in the week, when my boss introduced herself to a large group of students by first telling them about herself, including her children.

"Well crap," I thought.

Here's the thing: I can't mention my two living children without mentioning my middle child.  And I don't think any of us were prepared for me to stand up in front of 18 to 22-year-olds and talk about how one of my children died.  In hindsight, I could have just said, "I have three kids," or "I'm the mom of three," but that inevitably invites the "How old are they?" question.  So instead, I just left it at: "Hi, I'm Heather."  I'm not going to tell you about myself, because I don't think any one here is prepared for my story.

It's an exhausting way to live, to constantly try to feel out how much people know, to nod my head when I'd rather scream, to constantly steel myself for people's reactions, to hear "oh I'm sorry" again and again from someone who is going to change the topic and never mention my daughter again, whether it's best to bring up the DEAD BABY in conversation or not, how hurt I'm going to be by what comes out of their mouths next.

It's exhausting, and it's constant.

______________________________________________________

Yesterday, I posted a story about a stillborn baby on my Lydie's Loop page.  I cried as I reread it, grimacing about the part about her baby being put into a black duffle bag.  I tried not to think of Lydie being put into a black duffle bag, especially since this baby was born at the same hospital.  Was that a hospital thing or a funeral home thing?  Was Lydie put into a black duffle bag?

On the way home, I listened to a podcast called Shortest Longest Time about a mom who wanted to deliver her stillborn son at home.  How she waited for labor to begin for 2 1/2 weeks. I cried.

These stories?  They are all the same and they're all different.  

_______________________________________

According to my math-guy husband, it's been 1000 days and my grief has changed, but it hasn't.

Thursday, June 29, 2017

Party of Five, Table for Four

(One-sided) conversation with my four-year-old niece:
"Steph has three kids too...  she has two girls and one boy just like you.... but all her kids are alive."

_______________

It's summer time, which means I'm home with my living children.  Benjamin is particularly defiant these days -  a lot of hitting and just replying "no" when I tell him to do something or to stop doing something and walking straight out of time-out.  (What am I supposed to do with that?)  Josephine's terrible two's are starting early with some throwdown temper tantrums and she likes to just take off running at the swimming pool and the library and various other public places (and damn is she fast). I often remind myself how grateful I am to have this time home with them, even though most of me is like How many hours until Justin will be home?  I think about how I've allowed my career to take a backseat, staying at a job because of the summers off.  And then I think about Lydie and how I don't get to wrap her in a towel when she comes out of the pool shivering, and dammit, I want this time with my crazy-ass children.

__________________________

In May, Josie and I flew to Minnesota to spend a few days with one of my closest friends.  Amanda calls me her internet bestie even though we've now visited three times.  There's nothing quite like being with someone who gets it, who doesn't need you to explain something that is not explainable.



____________________________________

I'm wondering if there will ever be a time in my life that I don't think two things when I hear an announcement of a baby's birth: 1. Why did that baby get to live?  2.  Why did Lydie have to die?

I'm thinking not.

Pregnancy announcements aren't much easier. I think about the odds that this baby will arrive safely, especially once in that make-believe safe zone of the second trimester when women usually make some cutesy announcement.  Stillbirth happens in 1 of 160 pregnancies.  That means that Mom has a 159 out of 160 chance that her baby is going to arrive with a heartbeat.  That number would have made me feel safe.  Hell, that number did make me feel safe.

I hear pregnancy announcements and I'm so damn jealous that they get to have that kind of faith in the universe, that kind of faith in statistics.

___________________________________________

Back when I thought everything happened for a reason, I could handle uncertainty in my life a whole lot better.  I mean, how comforting to feel like things will just unfold the way they are meant to, with some ill-conceived notion of fatalism.  How comforting to tie life up in a pretty package like that.

I miss being that girl, the one that could just say, "Whatever is meant to be will be!" with such optimism.  

It's much harder to go through life believing that bad things happen to good people and life is a clusterfuck and to feel so out of control.

I mean, it's seriously more realistic but it's a helluva lot harder.

________________________________________________

Recently, I decided to find a new counselor.

A fourth counselor.

The first, Justin and I saw four days after Lydie was born.  She stared at us with big bulging eyes while we weeped on her couch, explained to us Kubler-Ross's five stages of grief, told us the likelihood of us getting divorced, then suggested we find a more experienced therapist.  The second we attended faithfully together for weeks but I never really could get past how she wanted me to cut pictures out of magazines to help me deal with the anger.  The third, I visited solo for months.  She diagnosed me with PTSD, decided to put me through EMDR where I relived my most traumatic experiences, then one day told me she didn't think my PTSD was full-blown so we'd just stop right there, which meant I spent hours reliving the trauma but never actually treated it.  I continued with her, pregnant with my Bowie Girl, going on and on about how uncomfortable I felt around other pregnant women, when she told me she herself was pregnant, and we officially broke up when I went back to work for the year and had three doctors' appointment a week to attend, and she went on maternity leave.

So recently, I decided I needed a new counselor.  I had to get a referral, though I really feel like having a dead baby in your file should trump the need for a referral, I found someone on the internet and took the 75 buck leap. I spent an hour talking about my three children, especially Lydia.  I told her I'm having trouble making decisions and my life feels out of my control.  She said, "Well, maybe just try not making any decisions for a while."  

"I think not making a decision is often making a decision," I explained.  "Like we've talked about trying to have another baby.  But if we never decide to try, then eventually we've decided not to," I explained.

She responded, get this: If you are thinking about a third baby, I think you need to talk to your husband about it.  

Fourth, I interrupted.

She glared.  She said nothing.  And that was that.

So let me get this straight: I go to a therapist that specializes in grief and loss, I spend an hour talking my three children, she has the audacity NOT to count Lydia, and her best counsel is to talk with my husband before deciding to get pregnant????  AND I paid $75 for this bullshit?

Somehow, in shock when leaving, I even scheduled the next appointment.

Later, I decided to email to cancel.  And I decided to be honest.  I told her that she didn't count Lydie and that was very hurtful, and that I expect more from someone in her profession.

She responded that she feels I have not worked my way through my grief... and I ACT LIKE LYDIE IS STILL ALIVE.

I received this email this response while in a crowded room of healthcare professionals.  Who were attending the Perinatal Bereavement Conference that I planned. I looked around, at the 75 people in the room, learning about how to best support families facing perinatal loss, and thought, I'm pretty sure I know Lydie's dead.  

The conference was pretty awesome and hopefully very impactful and I like knowing that Lydie is making a difference for so many other people.  I worked not only with Star Legacy but also Lydie and Josies's nurses to plan it -- and that's just pretty damn cool.  I even got to visit with the nurse who held Lydie, singing to her and rocking her, as I said my goodbyes.  I spoke with the home-visit nurse who I went off to when she visited our home after Josephine was born, asking her, why didn't I get a home nurse visit after I gave birth to my stillborn child?  And she heard me, and she's working on it, and she wants to meet with me more so I can help her understand what support these families need.

So yeah, I am pretty sure I know that Lydia is dead, thankyouverymuch.

I decided to give it one more try, and my 5th counselor is a word of difference from #4.  She said she sees me carrying Lydie in a little kangaroo backpack, and though it's a heavy, heavy weight that I can never put down, I am Lydia's carrier. And that only her mother can carry her with such love.

And by the way, dumb therapist #4, my grief will last a lifetime, just like my love.

___________________________________

We often talk about Lydie and Josie's nurses, who have become close friends, and Benjamin pipes up and says, "My nurses too?"  No, I tell him, I have no idea who was your nurse.

When your baby dies, those details seem so much more significant than when your baby lives.  When your baby dies, they are part of the inner circle, the few that are part of her story, who have physically held her.  Who help you remember.

At the end of the conference, a woman approached me with tears in her eyes.  "I remember you--" she began, then hesitated before continuing.  "I was Benjamin's nurse."  She proceeded to tell me how she cared for Ben and me - a birth that seemed traumatic until my next birth.  She said that she saw me when I came in -  still pregnant but not - with Lydie.  That she wanted to come speak with me, but she was pregnant, and she couldn't.  She told me how much our family has touched her life, and her nursing.

I was thrilled to come home and show my son a picture of his very own nurse, and know that our family's story has become part of her story too.



___________________________________

Some of our best friends got married a few weeks ago.  It was a crazy weekend, and with Justin in the wedding party, luckily my mom came with us to help with the kids.  I laughed out loud when I saw the seating chart, wondering what that dumb therapist #4 would say.





Take that!

In the meantime, I had awkward encounters with people-who-used-to-be-friends and I was grateful both for the cocktails and the children to help dispel awkwardness.  One previous friend's new wife said to me, "You have two kids?"

"I have three," I responded.

"I only see two," she replied.

No shit.  So do I. 

Standing next to the seating chart, I gestured to it.  "Our middle child, Lydia, died.  Here's her name."

"Why?" she actually asked.

And gratefully, all the cocktails had not yet gone to my head, and I replied, "Well I guess they are good friends who know how important including her is to us. Peace out."  (I did not actually say the "peace out" line but I did walk away).




Saturday, May 6, 2017

Bereaved Mother's Day Speech


 




A while ago, I connected with Katie, a loss mama who runs Forever my Baby You'll Be out of Cornerstone of Hope in Cleveland.   She read an article my sister wrote about Lydie and reached out to her, and then got connected to me too.  We talked about our daughters, how we honor them through our projects, how we might work together.  And soon she invited me to Cleveland to be the keynote speaker at Forever My Baby You'll Be's Bereaved Mother's Day Tea.  I am grateful for any opportunity to talk about Lydia - and to share my visions for the Ohio Chapter of the Star Legacy Foundation too - and I was honored to be asked.


Here's what I shared this morning:







My daughter Lydia Joanne was born with a full head of dark hair like her dad’s, long fingers like mine, and a constricted umbilical cord that caused her death in my womb.   She was loved so fiercely and anticipated so eagerly in the 8 months I carried her.  Her big brother Benjamin, blew raspberries on my belly, her Dad dutifully put together her crib, and I dreamed of our lives together with the daughter I always wanted.  I couldn’t wait to meet her – the little girl who would change my life forever.

The moment I was told “I’m sorry, there’s no heartbeat,” was the worst in my life.

The moment after I kissed my daughter for the final time, when I was wheeled out of the hospital with empty arms was a close second.

Leaving that hospital without my perfect baby girl, going home to a quiet house with the baby swing set up in the living room and the nursery’s closet full of colorful clothes – I thought Lydie’s story was over. 

My husband and I soon figured out that the healthiest way for us to grieve was to talk about Lydie.  To talk OUT LOUD about Lydie.  To talk about our hopes and our dreams for our baby girl.  To miss her out loud.  Which sometimes meant making other people uncomfortable.

I blogged.  I published entries every day, sometimes multiple times a day.  I processed what had happened to me, to Lydie, to our family.

We set up a mini-Christmas tree just for Lydie.  The first ornament I hung was the “Baby’s First Christmas” one my mom had purchased, and next the “L” one I had made soon after we decided on her name.  She was supposed to be our Christmas baby, due a week before.  When I shared about her tree on my blog, ornaments started arriving in our mailbox.  From family, friends, and even strangers. Handpicked for Lydia with love.

We started a ritual of lighting a candle every evening at dinner.  Gathering around the table, taking a moment to focus on our daughter and sister and saying the words “I love you, Lydie” and sometimes “We miss you, Lydie” out loud.  To teach our constantly-moving son to pause for a moment and focus on his sister.

We dedicated a tree for Lydie by our family cottage, with the words “always in our hearts” on the sign above her name.  At home, we planted Lydie’s Garden, with forget-me-nots, bleeding hearts, alliums, hyacinths.  A rock inscribed with her name and another with the same words that were read at our wedding and Lydie's memorial, “Love never fails.” Friends and family bought tulip bulbs, lilac bushes, windmills, glass flowers, garden plaques.  Things that made them think of Lydia.  They dug up their own flowers to transplant.  Lydie’s Garden came to life, blooming colorfully.

We learned to see Lydie in the stars and in the pink of the evening sky.  Sometimes even in the wind in our hair.

We fundraised to donate a Cuddle Cot, a cooling unit to allow babies to stay with their families longer and create more memories together.  I wrote a letter, encouraging parents to sing to their babies, read to their babies, bathe their babies.  That’s my husband’s biggest regret – that he didn’t bathe Lydie.  I wrote about how we had little time with Lydie but how the memories we do have we cherish.  How we’ll always wish for more time.  On Lydie’s first birthday, we returned to the hospital where she was born to dedicate that Cuddle Cot. The staff surprised us with a bit of a party for our girl.  It was a celebration of love – and missing of course, but most of all, of love.

I regularly hear from families who have used that Cuddle Cot, telling me about the difference Lydie made for them.  How that Cuddle Cot, inscribed with my daughter’s name, allowed them to have the time with their children that we weren’t able to with Lydia.

And last year, after a terrifying and anxiety-ridden third pregnancy and ultimately, the safe arrival of Lydie’s little sister, I started getting involved in advocacy work.  26,000 babies a year are stillborn in the United States.  That’s 1 out of 160 pregnancies.  That’s far too many.  Many, like my pregnancy, are low-risk with no warning signs.  Stillbirth has been called the most understudied medical issue of our time.  More research is desperately needed.

My first undertaking was planning a race called Lydie’s Loop: Steps against Stillbirth. I spent six months pouring my heart and soul – and A LOT of time – into telling Lydie’s story to businesses and individuals asking for donations of food and water and prizes for our raffle, spreading the word on social media, making signs, and running in circles trying to map out 3.1 miles. I worked with a friend to design the logo, using Lydie’s own footprints wrapped in a loopy heart.  I did a happy dance every time a registration email loaded in my inbox.  I ran around collecting bananas and granola bars and water and balloons and a sound system. 

On the day of the event, I was surrounded by almost 300 participants, many wearing their yellow t-shirts with my daughter’s name and footprints.  And wearing their own children’s names too, forming a star on the back underneath the words “We will always remember.”  Kids got their face painted, stood in line for balloon animals, families stuck their tickets in paper bags, hoping to win the memory box or American Girl doll, teams of people took photos.

A few families pushed their Molly Bears, bears the same weight as their babies, in strollers.  Another mom carried a photo of her son as she completed the one-mile walk.  There were
smiles and there were tears, but ultimately, there was community.  So much community and support and love, for all these families, whose lives have been changed by little ones gone too soon.

(At this point, I showed this video)







I don’t get to mother Lydie the way I planned, but I still get to mother her. She is an important part of our family and she remains an active part of my life.  I get to make sure her short life has an impact on the world.

I’ve continued my advocacy work, founding the Ohio Chapter of the Star Legacy Foundation.  Star Legacy is a national organization that is dedicated to reducing pregnancy loss and neonatal death through advocacy and research and also improving care for families who experience these tragedies.

Star Legacy is based out of Minnesota, and after losing Lydie, I found the local support was lacking.  My goal is to bring more of this support, awareness, and advocacy to Ohio families through the Ohio Chapter.

This month, we are hosting a conference for healthcare professionals about perinatal loss.  The goal is to educate nurses, doctors, and even office administrators about how to best care for a family who is facing a loss. 

Our Chapter is continuing other projects, like helping families get the proper documentation that their babies existed.  Just yesterday, I received Lydie’s birth certificate in the mail.  That piece of paper is remarkably important.

You can find out more at starlegacyfoundation.org or by following our Ohio Chapter of the Star Legacy Foundation page on Facebook.  There are also some flyers up here.

I am busy planning our second annual Lydie’s Loop which will be held in Columbus October 7th.  Which I invite you all to, of course!  There are flyers up here.

Coincidentally – or perhaps serendipitously -  today is Lydie’s half-birthday.

Today, Lydie would be two-and-a-half.

No longer that baby I held in my arms.  A big girl, speaking complete sentences.  No doubt she inherited some of my fire and her dad’s gentle practicality.  I picture her often.  I see her in the space between her siblings. I miss her so damn much.

I heard once that this experience – of losing my beloved child – could make me bitter or make me better.  At this time, the idea of losing my daughter and becoming better seemed ludicrous. Laughable.  Absurd.  I had no idea how to take this devastation, this crippling grief, and turn myself into a better person. 

What I’m learning is that it’s not the grief that is going to make me better.  It is my daughter.

It is Lydie.  My much-loved, much-wanted, beautiful daughter. 

I wish I could go back to myself during that cruel wheelchair ride out of the hospital and car ride home and tell myself: “This is not the end of Lydie’s story.  This is not the end of the relationship with your daughter.”

All the plans I had for Lydie, for our family?  They don’t get to happen, not in this lifetime. 

And I know I will grieve that for the rest of my life.

But like any other two-and-a-half-year-old, Lydie’s story has just begun.  



With my mama, Lydie's Oma Jo


With the founder of Forever My Baby You'll Be, Katie


My mom and my sister loving me and loving Lydie
Sending all our love to Lydie

Wednesday, April 12, 2017

Littlest sister at 18 months






Today, my youngest is 18 months old.
While I realize the "half-birthday" is a fabricated one, I can't help look at her and wonder how it's possible that tomorrow, she'll be closer to two than one.

When her brother was this age, I was 7 months pregnant with their sister.  And while I couldn't believe how fast he was changing everyday, I also was a little bit relieved that my baby didn't seem like such a baby anymore, relieved that he was gaining some independence just as we'd be bringing home another baby.  I didn't get all nostalgic about the baby stage because we were about to do it all over again.  When people called me crazy, I joked about doing the baby stage all at once, getting it over with in one foul swoop.

On Ben's 18 month birthday, I even posted this on social media with some overconfident thing like: "Where did my baby go?  Good thing we'll be bringing home his baby sister in two months!"



"Cheese!"
I think about how a month later, Ben's sister died, and I missed much of his next year because of my grief.

These are the kind of math games my mind tortures me with.

I try to be mindful of my children and soak them in, although I am always coaching myself on this with a constant to-do list running through my mind.

At 18 months, Josephine has the biggest appetite.  She is particularly obsessed with cheese, carrying a bag through the grocery store and sullenly handing it to the grocery store clerk to scan before grabbing it back, holding on it the whole way home, then climbing on to her chair (the high chair has been gone since her first birthday) and demanding I open it and give it to her.  She says "cheese" both for the food and for taking pictures and she seems to know she's cute, scrunching her shoulders up along with the grin.

She puts everything in her mouth - hair ties, dirt, mulch, rocks, rings.  She gets angry when we take them away, as if we are doing her some kind of injustice.

She wants to be outside all the time and throws fits when I drag her inside. She puts on her bike helmet and scoots around on her tricycle.  She falls down in the mud and giggles and gets up and runs and then stops to play in the dirt.  (And as much laundry as I do, I'm a bit grateful she so far seems to show no interest in princesses).

She loves her big brother and wants to do everything Benjamin does.  She doesn't waste her time on the smaller areas at the playground.  She wants to climb the big structures with Ben and throw herself down the tallest, longest slides.  I wish she had just a bit of fear, but then again, I can't help but admire the way she throws herself around the playground especially while I watch other kids her age stick close to their parents.

Our token extravert, she walks up to strangers, waving and saying "hi hi hi" until they notice her and reply.  I often get comments about how cute she is, and I agree.

She never wants the party to end, with a big dose of FOMO, perhaps from her mother never letting her sleep while in the tum.  The other night, she cried and on and off in her crib for 45 minutes, and when I finally gave in and went in to check on her, she stood up and started shouting "Buh!  Buh!" for Ben.  "He's sleeping, silly!" I told her and she looked dejected.  Each morning, she toddles over to her brother's room to get dressed and it's fair to say she would always rather be where he is. Last evening, she climbed out of the stroller to run around the block following her brother, and as Justin and I walked behind, we laughed about how how six months ago, she was only "knee-walking" and now she runs everywhere,

She loves Wheels on the Bus and the Itsy Bitsy spider.  When I give her raspberries on her tummy, she then lifts up her shirt and asks, "more?"

She points to her big sister's portrait and says, "baby!"  "That's Lydie, your big sister," I tell her and she nods. She pushes her own dolly around the house in the stroller and I wonder what when she will start to comprehend her reality, that she was born grieving. When we light Lydie's candle, she sometimes chimes in or blows kisses, and I like to think she's learning how to say "I love you, Lydie" too.  She says "Lydie" when I prompt her and it simultaneously fills my heart up and cracks it wide open every time.

Justin keeps track of her words on a pad of paper in the kitchen and Ben often runs to him to tell him to add one.  Just yesterday, her newest word was "hockey," and I swear you can visibly see this girl's brain working as she learns new things.

This morning, when I pulled her out of her crib and onto my lap for a snuggle, I cried.  I thought of how hard I had to fight to get her here.

Happy 18 months Bowie Girl.  I love you more than you'll ever know, and I'm so damn glad you're here.

Friday, March 24, 2017

Introducing... Lydia.


When I picture Lydie, I don't actually picture a baby.  She's about two in mind.  She was two last year and I think she'll be two next year too. I don't picture the baby I held while my tears fell.

It's hard for me, as Lydie's mama, to admit that the image of her, as she was, not as she would be, is blurry in my mind.

Her face was bruised.  Her skin was peeling.  Her nose was dripping blood.  I vividly remember wiping her nose, asking myself what the point was as it just continued to drip.  Then I told myself, I am her mother.  I will wipe her nose. 

I've been wiping Ben's nose for almost 4 years and Josie's nose for almost 18 months, but I only got 6 hours to wipe Lydie's nose.

Soon after Lydie's birth, I framed photos of her and spread them around our house.  Less than a week later, I went around and collected them, and they are still sitting, framed, in her memory chest.  It's hard to see the perfect little features through the bruised eye and ruby-red blood pooled lips.  The bruising hurts my heart.

I can't picture what she really would have looked like.

So, after encouragement from a few BLM friends, I decided to get a sketch done of Lydia by Dana.  As my friends told me, the artist has a knack for seeing babies as they should be.  As Brooke wrote, she sees "past the stillness to the baby who is there."

Still, after finally making this decision, I still dragged my feet.  And if you know me, you know I'm not a procrastinator.  I get shit done.

I was just scared.  Scared to see how perfect she really was.  Scared that I wouldn't recognize her, that she wouldn't look like the baby I held in my arms.  Scared that my mama heart wouldn't know my own daughter.

Comfortable knowing Lydie in the sunrises and sunsets and the wind on my face, but not as who she should have been.

Eventually I sucked it up.  Took a deep breath, emailed photos of my bruised, dead, perfect girl.  This week, I finally received Lydie's sketch.  I was sitting in the student union when the email came through, and I quickly clicked my email closed.  I know I needed to be behind closed doors in the privacy of my office.  So I raced back there as soon as I could.

I opened the attachment and stared at the screen.
And felt nothing.
But huge disappointment.
And panic.
Do I not recognize my own child?
Is this perfect baby Lydie?
I stared at the screen some more.
I leaned back.
My breath caught in my throat as I caught a glimpse of Josie.
(The artist has never seen a photo of Josie)
I pulled up photos of Lydia.
My heart flipped studying her nose.
The same.
So were detail of her lips, the curve of her jawline, the spacing between her eyes.
I started bawling.
I forwarded it to my closest confidents - my mom and sister, who were the only other to meet Lydia, a few BLM friends.
I stared some more.
I cried some more.
My mom said she had more hair.  But that she sees more of Ben in the sketch.
(The artist had never seen a photo of Ben).
I examined her hands, not seeing the long slender fingers.
  
Eventually, I asked the artist to fix those two things: more hair on Lydie, thick and dark like her Dad's hair.  Longer fingers, more slender.  So big for her little body.

And the result?
I've started to believe that it's my girl, wrapped in the blanket I made her, the one I sleep with every night.

The longer I stare at this sketch, the more in love I am.


Friday, February 10, 2017

Six years.

My sister texted me this morning to tell me that a six-year-old neighbor girl, a kindergarten classmate of my nephew’s, had died of complications from the flu.

Six-years-old.

In my nephew’s class.

The fucking flu.



This week on social media I learned of an 18-month-old who died.  Drowning.  In December, an old friend’s three-month-old died.  At daycare, attributed to SIDS. 


When my aunt and uncle lost my cousin when he was five days old, a lot of people said things to them like, “At least you never knew him.”  Because it’s always a blessing not to get to know your own child (sarcastic font).  To instead constantly imagine who he would have become. To wonder what his first word would be, what book he would want you to read to him again and again, what color he would want to paint his bedroom, what college he would choose, who he would marry.  What career he would go into, what he would name his children. 

Who he was and who he would have become.

It seems in 1998, when Michael died, people were even more ignorant than they are today about baby loss, and when they tell me these stories, I’m so freaking glad that no one dared say this to me.  But I know people have thought it.  I know people compare Lydia to their miscarriages.  I know some people consider her a “pregnancy loss,” not a child loss.  As if dying inside me makes her less of a person.

I know that I saw her practicing breathing just before she died.  I know I didn’t lose a pregnancy; I lost a child.

Countless people told my stunned aunt and uncle “at least you didn’t get to know him.”  But a friend of theirs, whose own 18-year-old son had died, said to them, “I got 18 years with my son.  I’m grateful for every one of them.  You only got five days.”

And me?  With my daughter?  I didn’t get one minute.  I only got to hold her lifeless body.  I will forever wonder who she would have been.  I will forever wonder, imagine, and daydream. 

I will always wonder if her dark hair would have lightened up.  I will always wonder what color her eyes were – likely blue when she was born, but would they have turned brown like her dad’s and big brother’s?  I will forever picture her kicking around a soccer ball and chasing her big brother, and yet, I know that’s a fantasy.  I know she could have been nothing like me, nothing like I imagine.  Instead, she very well could have been the girl who loved having her nails painted and going shopping. 

I would do anything to have five days with her, to have six years with her, to have 18 years with her.

I would do anything to know her.

But yet.

But yet.
 
What if I knew her, and then I lost her?

I think what it would be like to hold Benjamin’s lifeless body.  I think about how he is so excited to turn four, how he can’t wait to ride a school bus, how he is so protective of his littlest sister and such a bully to her at the same time, how he only eats carrots dipped in ketchup but at least he’s eating carrots, how he begs me to play hockey with him constantly, how he fills our home with so much noise.

I think about what it would be like to lose my oldest child, the one I know and love so well.  I think about how deafening his absence would be.

I think about Josephine, how she wants me to hold her all the time at home.   How my husband and my mother think I spoil her by giving in to her demands.  How I am spoiling her, but how I’ve held her lifeless sister in my arms and how I’m going to keep carrying her around as long as she wants me to.   

How empty my arms would feel if she was suddenly gone.

I think about her 6 pairs of shoes, most of them unused hand-me-downs from her big sister, that lay around the house.

I think of her, bringing me pop-up books to read and climbing on my lap, giggling and woofing when the dog pops out. 

I think of her blonde ponytail, and how when I ask for a kiss, she leans in, allowing me to kiss her. 

I think of how she signs “more” in the morning when I’m taking too long to get her breakfast, and also signs “more” when I tickle her.

I think about how every morning, when I wake up to their noises, instead of wishing them back to sleep, I think “Thank God they made it through the night.”

There is no good way to lose a child.

And while I wish I could have had six years with Lydie, and wish I could have known my own daughter, I also know that family will forever mourn and miss not only the person their child would have become, but her in her entirety, as she was as a six-year-old girl.  I know that so much of what their child loved will become triggers for them.  I know they had to return from the hospital to look at their daughter’s bed that she will never sleep in again.  I know they’ll think about their last words to her, her last words to them.  I know they will wish they read just one more story, said “I love you” just one more time.  I know that no amount of stories and “I love yous” could ever be enough.  I know they will watch my nephew grow and know their daughter should be growing alongside him. 

I know no parent should have to make the decision about whether to cremate or bury their child, no matter whether the age.



           


Thursday, January 26, 2017

Then and now


A little less than two years ago, Ben was "student of the month" in his classroom at school and I wrote about it here.  It was two months after the sudden stillbirth of his sister, and the "siblings" question stopped me in my tracks.  The siblings question was tough to navigate.  There was no answer that seemed correct.

Once I finally decided on my answer, which was "Lydia was stillborn in November 2014.  We love and miss her very much," his lazy teacher totally fucked up in the writing of it and I wrote about my fury about that here.

I circle back to this now, because on Monday at daycare pickup, Justin was handed a "student of the month" sheet for Josephine.  I got home from a long day of work at 9:15 pm, raced upstairs to Benjamin who refused to go sleep without my cuddles, and then came down to find it on the counter.

It only hit me later that I didn't think twice about the "siblings" question.  It didn't give me pause at all.  I thought much more about "favorite toys" (Do other one-year-olds have those?  Besides the bathroom drawers?) and the "favorite things to do" than I did the siblings question.  I scribbled, "Benjamin, almost-4, Lydia, would be 2."  I picked out photos: Josie at the water park, her belly protruding, our family at Lydie's Tree last summer, our family in our yellow t-shirts with Lydie's footprints and the Lydie's Loop sign overhead, Ben giving Josie, who is wearing an "I love my sister" onesie, a kiss.  I finished it in less than three minutes and turned it in the next morning.

The next morning, staring at our family photos in the school hallway, I realized how effortless it was to include Lydie in the photos.  Only two years ago, I cursed this tradition.  Two years ago, I cursed that I don't have photos of my children together.  Two years ago, I felt the need to put a qualifier on Lydia's name:

 Ben's sister, Lydie.*
* but she died

Now? Two years later?

There is no qualifier.

And these photos?  The ones that all include Lydia in the abstract... that show how we carry her in our hearts?  This is what my family looks like.  And I am not going to apologize for that.


And Josie's teachers?  They rocked it.  They didn't write in past tense.  They didn't make it awkward.  They didn't feel the need to put an asterisk after Lydie's name.




"I have a brother named Benjamin.  He is almost 4-years-old."

"I have a sister named Lydia.  She would be 2-years-old."

Sometimes it's really that simple.


*****************************************************

Yesterday, I spoke on a panel at a conference about parenting as a professional.  It's a conference that I've been involved in for many years now, but I've missed the past two years - one year ago because I was on maternity leave with Josephine and two years ago, because I couldn't handle being around people.

As I was preparing what I would say for this panel, I realized I couldn't separate my parenting from my bereaved parenting.  If I was going to sit there and talk about what it's like to be a working mother, I also had to mention what it's like to be a working bereaved mother.  If I was going to talk about Benjamin and Josephine, I also had to talk about Lydia.  So, in typical Heather fashion, I decided that I would be forthright and honest and say from the get-go that unfortunately, my parenting looks different than most.

I framed it as: my second child was perfectly healthy but died suddenly just before she was born.  I do that a lot, say "died just before she was born," rather than "stillborn."  I said that she's an important part of our family and that I've gotten very involved with promoting stillbirth awareness because of her.  "So," I said, "She still takes up a lot of my time... And I want her to.  That's important to me."

I also said that while I enjoy my job or I wouldn't be doing it just to break even with daycare, my family is my first priority.  And that I think every parent feels that way, but I've lost one of my children.  My family - my children - they come first.

Later, leading roundtable discussions about parenting as a professional, a woman approached me. 
She thanked me for being open about my loss, and then told me that her firstborn died two hours after he was born.  At six months gestation.   She went on to tell me that recently her mother-in-law told her six-year-old daughter Avery about him.  In other words, her daughter did not know she had an older brother.   When I asked the name of her oldest, she responded, "Avery."  

"No, the son you lost.  Your firstborn," I clarified.

Surprised, she told me Aiden.

Another woman approached me a few minutes later.  "I lost my middle child too," she told me. "She was born when I was five-and-a-half months pregnant... she was stillborn.  She would be 15."  She started to cry, then pointed to the tears.  "In 13 years, it will still hurt," she told me.

"I know," I responded.  

And I do know.  

But I think about how integrated into my life Lydia is.  How I'm able to sit in a room with twenty other professionals and articulate to them how the loss of my daughter has affected my professional life.  How we light a candle every single night for Lydie and say out loud how much we love her.   How we call a beautiful sunset a "Lydie sky."  How Benjamin regularly talks about his sister, saying things like, "I love you, Lydie, I wish you didn't die" to which I respond "me too,  buddy, me too."  How I planned a huge 5k event that honored my daughter where I introduced myself by beginning, "I am Lydie's mom.  And I love every chance I get to say that because it doesn't happen enough."  How I am starting an Ohio Chapter of the Star Legacy Foundation, committing myself to making a difference in this world for families and babies.  How I have a network of other loss moms who have become my closest friends and who support me and make me laugh with our dark humor and listen to me vent and tell me I'm not crazy.  How I will always, always respond to the question, "How many kids do you have?" with "three."  How this blog has been such therapy for me.   How I talk about her, probably too much sometimes. And while I know that in 13 years, I will miss my 15-year-old just as much as I miss my two-year-old today, I also feel strongly that grieving out loud is healthy, although not exactly societally acceptable.  So I do believe I'll be able to meet a newer loss mom and say "me too" without the tears.  Without all the tears, but with all the love.

And let me just take a moment to note that there were maybe 20 people in this room and two other women had lost babies.  We're not talking miscarriages, folks, we are talking that two other women have held their dead children in their arms.  I wish I was more surprised by that than I am.
 
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