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.


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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.

Sunday, December 11, 2016

This time of year

In a perfect world, where nothing breaks and nothing hurts (thanks Pink), tomorrow would be Lydie's second birthday.

But things break and things hurt, and it's not her birthday afterall.

I had a c-section scheduled for 6 am on Friday, December 12, 2014.  I chose the date back in August that year.  I realize most moms don't know the date their children will be born.  But I did, or I thought I did anyway.  Less than a year and a half before, 17ish hours of labor resulted in being pushed to the OR on my hospital bed by a team of sprinting doctors and nurses, where they got my first baby out via c-section just in time.  Dr. B had told me I had a "bit of PTSD" from Benjamin's delivery and thought it would help me to have our second baby's delivery scheduled nice and early. (How ironic this all is now.  We thought that was PTSD?  Hahahaha).

To avoid going into labor on my own, which can cause a uterus rupture after a c-section, we'd deliver at 39 weeks and because Lydie's due date was December 18th, she offered me December 11th or December 12th.  Benjamin was born at 41 weeks and I was glad to move this baby's birthday further from Christmas.  Because these are the kinds of things I worried about.

I chose the 12th.

Because Ben was born on 4/4 and I thought it would pretty cool to have a baby born on 4/4 and a baby born on 12/12.  (Seriously, that was my rationale).  

She warned me she would have to schedule the earliest surgery time - 6 am - because she had appointments after that.  I decided that was okay, that I would be nervous anyway and I wouldn't mind waking up at 4 am to go deliver my baby.  I was contemplating really important things like whether I would wash my hair that morning because it would probably look better for photos and I wouldn't be able to shower for a couple days post-surgery but then again, did I really want to blow dry my hair at 4 in the morning?

Tomorrow, there's nothing marked on my calendar.  Just a regular day.
One where my daughter was supposed to be born, but we held her memorial instead.

And yet, when a group of new mom friends invited me out on the 12th, I said I was busy.  I almost said, "I don't want to sit around and talk about Christmas plans and Stride Rite's going-out-of-business sale when I should be eating birthday cake with my two-year-old but I'm not because not only is it not her birthday but also because she's dead."  So instead I just said I wasn't able to make it.
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I haven't been blogging much lately.  I'm torn about it.

I seem to have no new material.  This can be proven by the fact that I wrote a very similar entry about December 12th of last year.  There are only so many words to describe the aching and the longing and the hole in my heart and our family.

But also, it bothers me that I don't know who reads this blog.  I am completely comfortable with close friends and even total strangers reading it.  But in the early days, a coworker took it upon herself to email the link to this blog to our entire division.  It felt like a major violation of my privacy.  When Josephine arrived safely last October, another coworker actually emailed the text from my blog as an announcement.  Needless to say, my coworkers were not the intended audience for that post.  Or really, any of these posts.

So there's that.

I've told myself if they care enough to keep reading after two years, then I shouldn't worry about it.  But it's awkward to talk to people in real life and have no idea what they know about me, my daughter, and my grief.  To have a conversation without knowing whether they've followed our story.

There's been quite a few times where I talk to someone and she stands there nodding, not reacting much.  Then I wonder if I am repeating something I have written about on my blog. Then sometimes I awkwardly ask, "Do you read my blog?"

I've thought about making this blog private but I value that many other baby loss families read it.  I want them to be able to find this blog when they are in their rabbit hole, when they are wondering what the hell just happened, when they are seeking out people like them.  When they are diving into the archives, doing the math like I constantly was: how will I feel in three months?  How will I feel in two years?  If I manage to have another baby, how will it feel then?

Besides, this blog has hundreds of readers and a private blog can only have a few.

So I just find myself keeping my relationship with my middle daughter closer to my chest.  Closer to my heart.  Less out there for the world to see.  I find myself not wanting to put my innermost thoughts on the internet.

Although, I can tell a fun snippet:
A month or two ago, I was holding a fussy Josie in one arm and raking leaves with the other arm, with Ben and his plastic rake next to me, when a new neighbor with similar aged kids stopped to chat.  "I think we've met before," she said, and I quickly apologized, told her I have met lots of new neighbors.

No, she tells me, we met at a professional conference a few years ago.  A mutual friend introduced us.  We work at neighboring institutions.

Oh, I say.  She doesn't look familiar and quite frankly, I'm surprised she remembers me.

I emailed her that weekend with a question about child care, continuing the conversation from my front yard.  After a few exchanges, she eventually wrote that to be transparent, she had to tell me: she did meet me at a conference several years ago, but that's not why she remembers me.  She remembers me because she has read my blog.  She continued: she's not a stalker, she seriously did not know that I was moving into the neighborhood.  She thinks about Lydie often and especially on her second birthday.

I laughed out loud.  It was delightful.  To not have to tell a new friend that you have another child, who can't be seen, but is very much a part of your family, because she has already read your deepest, most intimate thoughts.  And wants to be friends with you anyway!

We seem to have struck up a close friendship quickly, and it helps that I don't have to explain everything to her.  When she invited me out with this group of women and I replied that I'd like to go but have some social anxiety, she asked what she could do to make me more comfortable.  Last night, her family hosted mine, and at the end of the night, she gave us this incredible gift:



And again, it's like I have written here before, I am realizing: it's not that I can only be friends with women who have also lost children.  It's that I can only be friends with women who give me the space to mother all of my children, who aren't uncomfortable with what that looks like for me.  And the ones that mention Lydia on their own?  They are such a balm to my hurting soul.  Thank goodness for these women.
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Last week was the end of open enrollment.  I had to turn in my paperwork for my benefits.  I had to write each of our names and social security numbers down, check the right boxes.  I had to write only four names on that fucking form.   It brought me back how two years ago, I was so confident in my daughter and so in love with her name, that I filled out this form extra early.   Even wrote - in ink - 12/12/2014.  

Eight weeks later, when she had been dead for eight weeks, one of the first things I saw when I walked into my office was the fucking form with her name written.  With not one shard of doubt.

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A friend recently asked me what is next for me with Star Legacy and I so appreciated that question.  Because she knows I'm not done, that I'm not taking too much of a rest after the culmination of Lydie's Loop.  So to answer that question, I just turned in my application for an Ohio Chapter of the Star Legacy Foundation.

The idea is to have a local presence here in Ohio, to keep the money that we fundraised with Lydie's Loop here, to give back to this community.  Our next event will be a retreat in the spring for L&D staff.  

_________________________________

It's somehow the holiday season again.  This time of year takes me right back to my fresh grief.  I think about how hard it was to breathe, to get up in the morning, to eat, to be a good mom to Ben.  I remember cup after cup of tea while staring out the kitchen window.  I remember being more still than I've ever been. I remember my sensitivity to noise.  I remember feeling unable to leave my Fortress of Solitude, and I remember, when I did, feeling what I now realize were the beginnings of panic attacks.  Lights swirling, voices through tunnels, feeling faint.  I remember being amazed that people were doing daily things like grocery shopping, going to work, eating dinner.   I remember wanting the world to stop spinning for them, the way it had for me.

We all seem to want to tell people that it doesn't get easier.  But it does.  

It's gotten easier.

But I don't miss Lydie any less.  I don't love her any less.  And it certainly doesn't suck any less to live without one of my children.

We don't want to tell people it's easier because we don't want them to think we've "moved on."  Oh how I hate that expression.  If they think I'm doing better, they might think that I don't love and miss Lydie.

It's gotten easier but it hasn't gotten any better.

The reality is: I am used to this aching in my chest, I've learned the times it's okay to correct someone who refers to Josephine as my second child and the times when it's most appropriate to bite my tongue, I can fake a smile at a pregnant woman.  I can breathe again, even surrounded by the Christmas hype.

I no longer wake up every morning wishing I was dead.

So there's that.

But man, is the holiday season tough when you have a dead baby.

I can mostly avoid the triggers but that doesn't mean that they don't ever catch me off guard.  Like the other evening when I found myself sobbing while reading to Josie.  It was a hard enough book to get through anyway, all about the things that your baby will someday do: "Then, you were my baby, and now you are my child... Someday you will run so far and so fast that your heart will feel like it's on fire... Someday you will swing high - so high, higher than you ever dared to swing."  I was already crying, before I turned the page to this:


So yeah, the triggers aren't always predictable.  And there always seem to be more of them in the holiday season.

I so appreciated the coworker, who on our return from Thanksgiving, said to me, "Get through Thanksgiving okay?"  It was directly after a different coworker just asked if I "had a good holiday" and I just nodded yes.  I didn't tell her how I got in a screaming match with my sister which was partially my fault and partially her fault but mostly stemmed from how damn fragile I felt and how hard it is to be missing your child so fiercely when at a whole family gathering where everyone is supposed to be present.   I didn't mention how my sister was so thoughtful to set a place for everyone at the table, including Lydia, but how absolutely shitty it is for your daughter's place to be a candle instead of a chair.  



So I really appreciated the coworker who asked if I got through it okay.  I don't know if my breakdown qualifies me for "okay," but I did get through it.

And Thanksgiving is just the beginning of the freaking holidays.  Don't even get me started about Christmas cards.

____________________________________________

The other day, stopped at a red light, I scrolled through Facebook.  An image popped up from an artist who uses photos to sketch portraits of babies who have died.  This particular beautiful baby was stillborn due to a placental abruption.  As I pulled through the green light, tears filled my eyes.  Which honestly surprised me.  I am so used to this life.  Most of my Facebook feed shows proud bereaved mothers and as perverse as this sounds,  I am more comfortable seeing these pictures of dead babies than living ones.  So as I drove on, I wondered why this one got to me.  And it hit me: it's so fucked up that this is so commonplace for me.  It sucks that I'm more comfortable admiring a portrait of a stillborn baby than I am viewing a pregnancy or birth announcement.

Fucked up.

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Speaking of that artist, I have contemplated getting a sketch of Lydie done.  It's a large cost, which is holding me back, but it's more than that.  Here's what I'm figuring out: it's not only a financial-risk, but an emotional one.  An emotional risk.  We have very few photos of Lydie's face.  Most were taken from a distance and look like Justin and I are holding a yellow blanket, not a little girl wrapped in a yellow blanket. And she was bruised, with ruby red lips from the pools of blood, and peeling skin.  What if I put down the money, share the few photos I have of my daughter,  and then when the sketch arrives,  I don't recognize her?  What if I don't recognize her?  What if she is not the girl I picture?  

Emotional risk.

This morning, at a birthday party, another mom said to me, "Your kids look so much alike!" and I responded, "They do?"  I don't see it.  I don't see it when I look at Ben and Josie and I've spent hours staring at photos of Lydie, trying to find similarities with her big brother and little sister.  

Ben is insistent on getting a ponytail whenever Josie gets one.
I wonder if a portrait would help me see those similarities more clearly?    
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One more snippet.

Ben's been "spirited" again lately.  After a record hour and a half of straight screaming on the morning Santa was visiting school, Ben finally came downstairs dressed.  The beautiful combination of a "work shirt" and blue striped sweatpants.  And underneath?  His Lydie's Loop shirt.  "So Lydie can sit on Santa's lap with me and Josie," he tells me.  At school, when Josephine screamed on Santa's lap, he grabbed her hand and she calmed down.

Such a little shit sometimes, and such a good big brother to both his sisters.


And last night, after celebrating "Dutch Christmas" with our new neighbor friends, Ben climbed the stairs with me to Lydie's memory chest and grabbed shoes I had bought for her, to put one out for her on the fireplace.  Five shoes in a row, waiting for St. Nick.

This morning, he was thrilled to hold up Lydie's shoe with a star ornament inside.


When I'm listening to my three-year-old scream for hours on end, I often wonder what I'm doing wrong.  These are the moments I think I must be doing something right.

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To so many of you who have also lost children, I wish you peace this holiday season.  I hope you feel your children close to you and feel surrounded by love.  I hope the holidays are gentle on your hurting heart.



 
 
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