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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