Sunday, June 10, 2018

Mindfuckery

When I first discussed a hypothetical pregnancy after the sudden and unexpected stillbirth of my second child with my Maternal Fetal Medicine doctor, he said to me, "I have six kids.  One summer, one of them almost drowned. Now, I always have anxiety around swimming pools."  His point was, that I'm going to have anxiety while pregnant. It's just inevitable.  But that we'll try to manage it.

But Dr. F's anecdote, where he tried, rather unsuccessfully, to relate to me, is only a glimmer of the anxiety of pregnancy after loss.

I wanted to respond: "But imagine your kid DID die.  And now you have to spend the next NINE months IN a swimming pool."

Now that's anxiety in pregnancy after loss.

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But somehow, IV and I are finding ourselves at 19 weeks.  One week until we enter stillbirth territory. (That's a pregnancy after loss brain for you).  We had an extensive anatomy scan the other day where we got to count ten fingers and ten toes and four chambers of the heart and three vessels of the (fucking) cord.  With a posterior placenta this time around (thank goodness), I swear I felt movement as early as 11 weeks and it's become more regular in the past week or two, feeling this boy move a few times a day.  Which means when I don't feel movement for a while, I worry (and reach for my Doppler.)

Justin even felt him kick last week and I feel like that's something we'll never take for granted again.

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Yesterday I realized more than two weeks of my summer break has already passed us by, and I groaned, because it will be August and back to the rush of work and school (Kindergarten for Ben!) before we know it.  And then I realized this means that the weeks of this pregnancy are also passing by quickly, and that I am okay with.

Many people have asked me if this pregnancy is easier than Josephine's.  At the moment, I can say yes.  The loss of Lydie was so fresh when I was pregnant with Josie.  I was still learning how to grieve.  Besides losing the baby, my biggest worry was that people would view this rainbow baby as a replacement, that people would see my pregnant belly and think I'd "moved on," that people would forget about Lydie.  Now, Lydie, both her life and her loss, is so integrated in my life that I don't worry about that part.  Any one who knows me knows that Lydie is not replaceable.

While I've still gotten some of the "it was meant to be!" and "see? everything happens for a reason!" bullshit, I am better at compartmentalizing that (and also, compartmentalizing the people who say things like that to me).

So while the anxiety is present - always - it's not always front and center.

While I was pregnant with Josephine, I worked really hard to try to take it one day at a time, not to think too far to the future.  Live in the moment.  It's something I've gotten better at because of Lydie. I'm not such a planner anymore.

That helps.  Today I am pregnant.

Also, I fully expect the anxiety to hit harder when I hit viability.

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I've always referred to pregnancy after loss as a mindfuck.

Here's some mindfuckery:

Around 6 weeks when I had a bleeding scare, my OB fit me in for an ultrasound.  We were so grateful to see a heartbeat and so full of questions about the subchorionic hemorrhage that we didn't notice the due date on the screen.  But when Justin finally saw it, he just said "no."  No, no, no, that won't work for us.

The date was November 5th.

Most people gasp, asking, "Lydie's birthday?"

Worse, in my opinion.  The day before.  The day we found out her heart wasn't beating.  The worst day of my life, and always, the hardest anniversary for me.

While I know that I will not deliver this baby on my due date, I also can't see that date, hear that date, say that date this pregnancy.  Gratefully my OB scanned me again to get another measurement, so we now have the #bigdifference due date of November 4th.

I'll take it.

Because I try not to get ahead of myself, it took me a few days to take a good look at the calendar, but when I finally did, I recoiled again.

My exact point of loss with Lydie - 33 weeks and 6 days - is the day of Lydie's Loop.

The point was the hardest in my pregnancy with Josephine.  In the middle of the night, I sat sobbing at my kitchen table, with one hand on my belly, feeling my baby kick and wondering if little sister was now older than older sister.

It didn't exactly get easier from there on out, but I wasn't sitting at my kitchen table in the middle of the night either.

While I recognize that this is a different pregnancy and I will likely have a different reaction, I also fully expect that to be one of the most emotional, highest anxiety parts.

Meanwhile, the day of Lydie's Loop is chaotic, stressful, and busy (along with heartwarming and fulfilling and meaningful and emotional).  So somehow I have to combine those two.

Mindfuckery.

Tuesday, May 8, 2018

What's been going on

For the past few months, I've given myself the permission not to worry about this space.  It was so liberating in the early days, to take what was spiraling around in my head and put in on a computer screen with zero shits about who knew what.  As my relationship with my daughter - and my relationship with grief - has shifted, I started to care more about those intimate thoughts and who was allowed access to them.  Besides, there's only so many times you can vent "it's not fair" without sounding like a whiny five-year-old and there's actually some peace that comes when you accept it's NEVER going to be fair.  There's also only so many times you can write, "I miss her."

I miss her, I miss her, I miss her.

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Still, without my documenting it in this space, there's been a lot going on.  Through our Star Legacy Foundation work, Justin and I have been working on a tax credit legislation for parents of stillborn babies, Ohio House Bill 507.  We are asking Ohio to recognize each stillborn child by providing the parents with a $2000 tax credit to help towards medical experiences, cremation, burial, funeral expenses, and counseling.  When a baby is born with a heartbeat, even if he or she dies immediately after birth, that child can receive a birth certificate and parents can claim that child on that year's taxes.  When a child is stillborn and never takes breath, that child cannot be claimed.

I planned to breastfeed Lydie, the way I breastfed Ben, and I remember thinking after her birth that a living baby would have been so much cheaper than a dead one.  I remember walking to the mailbox and finding a hospital bill for thousands of dollars tucked amidst the sympathy cards.  I remember the punch I felt in my gut when I signed that year's taxes under "dependents: 1."

Justin and I testified at the Ohio Statehouse a couple months ago.  I speak about Lydie regularly, and even sometimes in a formal setting, but it felt different to stand up and speak about her to lawmakers.  When cleveland.com and the Dayton Daily News covered our Bill, there were commenters writing cruel things like, "Why should I help you pay for your child's funeral?"  And besides the lack of empathy, I think this shows that these people don't get it: the government already subsidizes parenting.  You can claim each living child on your taxes, for a $2000 tax credit each year.  All we're asking for is parity.  We're asking our parenting to be subsidized like everyone else's.






We're waiting for a House of Representatives vote but hear there's no opposition.  Then we'll be called to testify to the Ohio Senate.  If you live in Ohio and haven't yet voiced your support, you can do so in just a moment here.

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About a month ago, a friend I made through this very blog came all the way to visit (meet?) us from New Zealand.  If I wasn't in the world I am, I would think this was weird.  But I am, so I don't.  Anne Marie and her husband Andrew have been long readers of this blog, since their son Zach died two weeks after birth only two months after Lydie.  When Anne Marie first emailed me, saying "me too, me too, me too," I never imagined that years later, we'd laugh and cry together in my kitchen while our boys played nonstop for five days.

I was thrilled to welcome Anne Marie and her family into our home, thrilled that they traveled so far to spend time with us.  We had a delightful five days together.  There's a comfort to be found with the friends who just get it that can't be found anywhere else, and so special to have that connection.  I cried when pulling away from the airport, missing them already.  Anne Marie talked to our kids a lot about "when you come to New Zealand" though so I think my kids may think we're going there next week.


All 6 of our kids.  


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Lydie's Loop planning is picking up speed.  We're presenting a Perinatal Bereavement Conference at the Cleveland Clinic in July.  I coach Ben's soccer team three times a week and cart him to swim lessons (and chase around his sister while he's in them) once a week.  At 7 am, I walk the dog and water the finally-growing grass after backyard renovations.  I'm wrapping up a busy academic year and counting down the days when I can enjoy my summer home with my kiddos.

And if life wasn't busy with all of that, I am also currently pregnant with our fourth child.

As I write that, I hope I'm not jinxing us, because in reality, I haven't had an ultrasound in six whole days and I don't feel confident this little heart has not stopped beating since then.  But since I know there's not a day I will feel confident with this pregnancy and I also am tired of trying to hide the belly, which turns out to get really big really early with your fourth, I'm just ready to put this out there.

I am 14 weeks pregnant with our 4th child.  A boy.  Two girls and two boys.

"Book end boys," my friend Amanda tells me.

"And Irish twin girls," I add.

What?  How?  When?  Why?  You might be asking as most people who hear this news do.

"I figured you were done," a few friends have said.

"So did I," I respond, and their mouths drop open.

"No, no, no," I clarify.  "Not an accident."

And I back up.

Back to December, when my friend Nora wrote me and said, "Help!  I'm pregnant with my fourth!"

It was a Friday night, the kids were in bed, and Justin and I were sharing a few beers when I got her message.

Instantly, I was jealous.  Nora was a friend who had talked about a fourth, just like I had.  Nora's second had died before birth, just like mine had.  Nora went through a terrifying rainbow pregnancy and ultimately brought home a sibling for her kids, just like I had.

I had hoped that Nora had made the decision not to go for #4, because without making a decision, it seemed we had decided.  While our kids were screaming at us or each other, we'd glance at each other and snarkily say, "We're done, right?" So this non-decision was reached mostly because our living kids are a lot of work and we couldn't picture adding to the insanity of our household.  Also because I am getting older and as each month passed without wanting to try, it seemed less and less likely.  It felt like less of a decision than a resignation: just not in the cards for us.  I had even sold some baby stuff in the fall, and though I appreciated the cash and the crap out of my basement, it still didn't feel good.

So, as Justin, I, and the beers were feeling good, and I read Nora's message out loud to him, we pondered out loud "What if?' for the first time.  "I can't figure out," I told him, "If I want my three children, living, or three living children."  I worried out loud that I just missed Lydie, that we could never fill the void in our family, that we could have a dozen more children and never feel done.

My tipsy husband said, "We can't figure out if we want another child or if we want Lydie.  We know we can't get Lydie back but we could try to bring home another baby.  What if we said, "Fuck it," tried to have another baby, and if we still feel this way, we know it's missing Lydie?"

It was the most nonchalant thing to say about a really big decision, and it made sense.  We laughed about it, but it still made sense the next day, no longer tipsy.  Then it stuck with me.  I had been trying to wrap my head around being DONE for about two years, and if never felt good.  I spent a few weeks flipping that around, thinking about trying for one more, and it felt better.  Not quite right, because it never will be, but better.

So here we are.  Having just told our living children the news (to which Ben jumped up and down, then jumped up again upon learning it's a brother), and hoping, hoping, hoping.





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The fear is present this time, but it's different.  Maybe I should say the fear is different, but it's present.

It was a relief to not be too concerned with gender this time around.  We have a living boy and a living girl and I just want to bring home a healthy baby.  A small part of me wanted Josephine to have the experience of a living sister, but she's also a girl who can totally hold her own with brothers - and I like that about her and want to encourage this because I can't stand princesses.  So that small part didn't feel at all disappointed when told "the baby has no chromosomal abnormalities.  Oh and it's a boy."

Not helpful was the subchorionic hemorrhage that caused bleeding and made me think I was miscarrying in week 6.  It's the first time I've had any kind of complication in pregnancy - besides you know, the dead baby.  I hoped I'd feel more confidence in the second trimester, especially after healthy test results.  But instead, as I start to regain some energy back from the bone-aching tiredness of the first trimester, and I can't yet feel movement , I don't feel confident that this little heart is beating at this moment, much less than it will be beating at delivery in hopefully October.

Hopefully.

Still impossible to operate, to speak one sentence, without that word.

A few weeks ago, some of our closest friends told us they're expecting their first.  I'm in a place now that I can - gratefully - be truly happy for them.  Hopefully, our babies will be born just a couple weeks apart.

Their reaction on learning I'm pregnant too?  So exciting that our kids will grow up together!!

My reaction on learning she's pregnant too?  I really hope neither one of our babies dies or it's going to really take a toll on our friendship.

I'm trying NOT to see my OB every single week for a scan right now.  Josephine had 44 (44!) ultrasounds.  I'm really grateful that my OB is happy to bring out her ultrasound machine on me every single week, that she doesn't bother with the damn Doppler or stupid measuring tape, that she doesn't even tell my insurance of my frequent appointments, that in the third trimester she'll start doing Biophysical Profiles AND NSTS, along with my high-risk doctor, the Maternal Fetal Medicine Doctor.  But I also recognize that right now, these scans are not to prevent anything, just to provide some peace of mind, and I'm trying to sometimes go a whole week and a half without one.  Which is hard, actually.

Justin asked our pregnant friend if she likes her OB.  Her response was, "Yeah, her office is really close."

We laughed about this later, jealous of their naivety.   What a way to encompass pregnancy after third trimester sudden loss versus first pregnancy.  The office of my OB is not close, but she is worth the drive.

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We've taken to calling this babe, this little brother, IV.  Ivy?  IV?  Ben wants to call him Max.

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Tuesday, December 12, 2017

Today

"Gather up your tears, keep them in your pocket. Save them for a time when you're really gonna need them." - The Band Perry
If the world was as it should be, I'd be ducking out of work early today to pick up my three-year-old from school, on our way to celebrate at Chuck E Cheese. She'd be all riled up from the birthday cupcakes we'd made together the night before. She'd insist on breaking the egg and I'd tousle her hair as I wiped up egg from the side of the counter.
When I tell people that today was supposed to be Lydie's birthday, they usually make some remark about her due date. It's not her due date. Her due date was precisely one week before Christmas. December 18th. I'd shuttered when I heard that date, thinking of how poorly we planned. Thinking of how the poor girl would have her birthday mixed into Christmas and her poor mom would have to buy both birthday gifts and Christmas gifts in December. (My birthday is 6 months and 2 days after Christmas and as a child, I always appreciated the perfect spacing of gifts). Those were my concerns.
But instead, back in the mid-summer, we had scheduled a c-section at 39 weeks and 1 day, due to my emergency c-section with her brother just 20 months before. My doctor didn't do VBACs and even though I "grieved" never giving birth vaginally, I decided to choose the harder delivery for me and the safest delivery for my child. My doctor thought I had a bit of PTSD from his labor and running down the hallway to the OR when his heartrate plummeted and thought having a date on the calendar early would help. She gave me the options of December 11th and December 12th. I chose the 12th since her brother was born on April 4th. Thought it would be cool to have babies on 4/4 and 12/12. So the OR was booked for my daughter's arrival five months early, and unlike the majority of moms, I "knew" what day (and time) my child would be born months in advance.
Leading up to that day, I thought about really important things like whether I should take a shower before we left at 4:30 am for the hospital or whether the 20 minutes of extra sleep would be better.
I never saw it coming that instead we'd hold her memorial that day.
Now December 12th holds no marks on the calendar.
Blank.
Just a regular day.
But I know. How could I forget? Today is supposed to be my daughter's birthday.
There will be no Chuck E Cheese today. No cupcakes, no singing.
Just the lighting of the candle, the chorus of "I love you, Lydie" around the dinner table, as there is every night, before the knocked over milk cups and the dropped bowl of corn on the floor and the demanding requests for more chicken nuggets and the reminders of using manners.
But I know what day it is.

Sunday, November 5, 2017

What Two Looked Like for You

Dear Lydie,

Last November, we celebrated your birthday with a hike.  We climbed up rocky stairs, Josie on Dad’s back, and Ben clutching my hand or Oma’s hand, we weaved our way to waterfalls and caves, and we felt you with us.  I captured a photo of light streaming on Ben, as he peered out over a canyon, and we felt you with us.  At 12:14 pm, Dad and I said out loud, “I love you, Lydie,” as we often do.  Later, back at home, we decorated cookies with your name and decorated our countertops with beautiful flowers that remind us of you.  Dad and Ben went out in search of balloons, a bright pink “two” in the middle of a turquoise and yellow one.  Your colors.  We sent them to you in the sky, we watched them disappear and hoped they found their way to you.  I found some quiet time, and I held tufts of your dark hair in my hands.  I smelled it.  I wondered, like I so often do, whether it would have stayed that dark or whether it would have changed color.  After dinner, we gathered as a family, opened your birthday presents and cards from so many who think of you not just in November but every day.  We sang you happy birthday, ate your cookies, and we missed you.  At Thanksgiving, Aunt Laura decorated the table with leaf name cards at seats.  Your name card sat in the center of the table, with a candle on top.  I cried, both out of gratitude that you were included and of course, out of grief, that your namecard held a candle instead of a booster seat.  I missed you.  Could you feel our love?

In December, Ben held Josie’s hand when she cried on Santa’s knee.  I thought about your space, there in between them.  Your Christmas tree lit up our family room, and your brother and sister played with ornaments bearing your name, picked out just for you.  Ornaments of angels and stars and hearts. A “baby’s first Christmas” Oma Jo bought before you died.  An ornament reading, “Lydia, may your star shine down from heaven.”  An ornament that Leigh, the videographer who videotaped your memorial, was given in her childhood and took off her own tree to put on yours.  A bird holding the word “peace” that I bought you last year.  A pink heart Dad bought you, with a matching green one for your sister.  So much love on one little tree.  Our big Christmas tree was decorated with a new ornament from a new friend, holding your name between your siblings. How special that friend is, how rare it is for me to find friends who understand without explanation.  On Christmas Eve, your brother and sister wore matching plaid, and I missed you.  You were supposed to be my Christmas baby, due a week before Christmas. We hung your stocking on the mantle.  On Christmas morning, it was empty, and we missed you.  I’m often not sure it’s possible to miss you more than I always do, but Christmas morning makes me feel like that is possible afterall.  We opened presents and Aunt Laura gave you a book called “Forever.”  When the whole family gathered around the Christmas table, we lit your candle, as we do every evening, and Pop-Pop was the first and the loudest to say “I love you, Lydie.” Could you feel our love?

In January, we visited an indoor water park.  Ben zipped off with AJ, climbing to the top of a huge water slide, zipping down, and then running in circles to do it all again. Jos had just started walking, and yet she climbed the stairs again and again and again, never tiring of the slide.  We took turns catching her, laughing at her glee. I wondered which part would be your favorite, what you would do again and again and again.  Later that month, I interviewed with the national board of the Star Legacy Foundation and founded our very own Ohio Chapter.  I vowed to continue my advocacy work about stillbirth awareness and research and to make a difference for other families.  I do this work because I miss you so damn much and I shouldn’t have to.  Could you feel our love?

In February, I skied with Ben while Dad stayed with Josie in the lodge.  Two would be the perfect age to start skiing, and I imagined you out there, on the bunny slope. How you’d be in the bunny bump, the cutest little ski boots on your feet.  We'd be struggling on the magic carpet together, since you wouldn't be ready for the chair lift yet.  I missed you.  The days were long and dark and I missed you. I watched your brother and sister play together and I missed you.  I watched them fight with each other and I missed you.  I wondered what your laugh would sound like and I missed you.  I woke up, hugged your blanket for a moment, said out loud, "Love you, Lydie." Could you feel our love?   

In March, flowers started peeking through in your new garden.  I breathed a sigh of relief and thought about how your presence has infiltrated our new home.  I had been worried you wouldn’t come with us when we moved. A friend of mine had told me, "A love like this knows no bounds," and she was right. You did come with us, and I feel you here.  Your portrait arrived in my inbox and I stared at the computer screen, tears flowing down my face – the sketch of this beautiful baby girl with a full head of dark hair and long fingers, wrapped in her baby blanket her mother spent eight months making.  First I saw Josie but then I saw you.  (Others found Benjamin similarities.  Isn't it amazing to know you looked like both your brother and your sister?)  I framed your sketch, Dad hung it proudly in our hallway, and your little sister pointed to it, saying “baby.”  I responded, “That’s Lydie.  That’s your sister, Lydie.”   Could you feel our love?

In April, your big brother turned four.  I hung the birthday banner and underneath, we took family photos.  When I asked Ben to put his arm around his sister, he hugged the Molly Bear with your name on it, and laughed, “I thought you meant Lydie, not Josie!”  Later that month we decorated Easter eggs with your name.  In there somewhere, I got another email from a family thanking me for the Cuddle Cot donation.  Telling me about how they got time with their children, time we didn’t get together, because of you.  Your brother started asking why he didn’t get to hold you, and my mama heart hurt.  Could you feel our love?

In May, I was invited to speak at a Bereaved Mother’s Day event. I told them all about you, how I couldn’t wait to meet the girl who would change my life forever.  I told them, through my tears, how I thought your story was over when I left the hospital.  But I’m learning that your story is just beginning. Mother’s Day came around again, and I didn’t get to hold you. I spent the day in Minnesota with Reese’s mom and we missed our daughters out loud. I talked about you with my closest friend, who you brought to me.  Later that same month, I spoke to nurses and chaplains and social workers and doulas in a conference I organized.  I talked to them about how to take care of families whose babies died.  I told them how I believe your death was preventable, if only I had had different prenatal care. I hoped I was making you proud of me. In the parent panel, your dad spoke of you with a tremoring voice, bursting with pride.  Later we road-tripped to the cottage for our inaugural summer weekend and I felt you in the wind in my hair, the sand on my feet, the waves crashing.  We let your brother and your cousin Lane stay up late and they grabbed sticks and wrote your name in the sand under the setting sun, just as I always do. I always feel you so strongly there.  Could you feel our love?

In June, I finished work for a while.  I settled into my routine of time off with your brother and sister.  The summer routine of slower breakfasts, no rushing, mornings of playgrounds and the library and the grocery store and afternoons almost always at the pool.  I wished I could spend this time with you. I thought about those big flipper feet of yours and knew you’d be a good swimmer, just like Ben and Jos.  We road-tripped to Indiana, watched Meg and Andy get married, marveled that they were thoughtful enough to include you on the seating chart. At home, Jos started saying “Love you Lydie" on her own when we lit your candle. We visited the cottage again, had donuts at your tree.  We celebrated my birthday and I missed you. Could you feel our love?

In July, we slept in the hospital for three full nights with your little sister.  She was a trooper, and Dad and I couldn’t leave her side.  I thought of you, how I wished you were ever given a fighting chance.  It was so hard to hand her over to a doctor to operate on her and turn to walk the other direction to the waiting room.  But that’s far from the hardest time I’ve been forced to turn and walk away from my child.  You’ve given me perspective, my dear.  You’ve taught me how to be tough and how to be brave.  I used that toughness and braveness a few days later when your dad had a biopsy to determine if he had cancer.  I clutched his faded Lydie heart that he carries in his pocket while he was in surgery.  I thought of you and I hoped, hoped, hoped we’d fall on the good side of statistics this time. And somehow, this time, we did.  Once we got those two surgeries over with, we escaped twice more to the cottage.  This time at your tree, Josie wiped my eyes as I cried.  I wondered how much she understands about you. We spent a week at the cottage, building sand castles and boogey boarding and running down sand dunes and building campfires and playing baseball and finding sea glass and jumping off the Mat and kayaking and eating bridge fries and missing you.  Could you feel our love?

In August, your big brother and little sister started a new school.  I worried no one would know you there. So I told them all about you, about our middle child.  One morning, still wearing only a towel after my shower, I walked to an eastern window, wondering what the sky looked like.  It was bright pink.  “Good morning, Lydie,” I said outloud.  Your wind chimes, the ones from Kelly, that read “Hear the wind and know I am near” sounded in reply, and your skeptic mama felt you.  Your sister started wearing shoes I bought for you, adorable Keens, and that made me both happy and sad.  Happy those shoes will be used.  Sad that those hand-me-downs aren’t discolored, with the Velcro full of fuzz and the bottoms all scuffed up. They are the final brand new hand-me-down, and that too, makes me happy and sad all at once. The last item that was meant to be for you that is instead for your rainbow sister.  Jos loves those shoes, dancing around so proud of them, which I laughingly called “the new shoe dance." On hot days, Ben and Jos watered your garden, carrying cans of water from the rain barrel. Could you feel our love?

In September, I walked into your sister’s room, wearing last year’s t-shirt and Jos announced proudly, “Lydie’s Loop!”  She knows you.  We celebrated Oma and Pop-Pop’s anniversary at the cottage, posing with the rock that is inscribed with your name.  We missed you.  The whole family gathered at the beach and sent lanterns over the lake, to you.  You painted us a beautiful sky, and we missed you.  Back at home, we picked apples, throwing them down after only a few bites to grab a new one.  You’ve been to that orchard with us, soon before you were born, and in the years that followed, we’ve seen you in the sun that forms a star in our photos.  I pictured you running through the orchard, giggling with your hair flying behind you. Would it still be dark, or would it have lightened in the summer sun? Could you feel our love?

In October, my months and months of hard work culminated in the second annual Lydie’s Loop.  Hundreds of people wore your name in pink, with your footprints in yellow on their turquoise shirts.  We spoke about you, and read the names of fifty other much-loved, much-missed babies.  We donated thousands of dollars to research so other families don’t have to live without their children the way we have to live without you.  I spoke to newspaper reporters about Lydie’s Loop and about you.  How perfect your little body was, your dark hair and flipper feet, reading to you and kissing you again and again, until I had to kiss you that final time.  How I sleep with the blanket I crocheted you that held you and still holds your blood every single night, how you’re changing the world.  Your sister turned two, and I joked that I have two two-year-olds for three short weeks.  My Irish twins.  On October 15th, we celebrated the Wave of Light by lighting your candles.  The weather turned colder and grief hit me hard. I mailed out your birth announcements, almost three years too late, to the special family and friends who honor you just as we do.  Could you feel our love?


Your dad, in a letter he wrote to you for your first birthday, told you we celebrate your absolute place in our family, "so painfully empty but so beautifully full."  This continues to be true and I know it always will be.  Two didn't look like it should, but it was full of love.

And now it’s November again.  Tomorrow, you're three. Another birthday without the birthday girl. 

I love you every moment of every day.  I loved you at one and at two and now I love you at three.  I’ll love you at a hundred and a hundred and one.  I’ll love you for always.

That letter that Dad penned for you on your first birthday, he said he dreamed that these words find you in the starry night sky: You are loved, you are loved, you are loved.  We'll keep making sure you feel all our love.   

Happy third birthday, my girl.      

Mom

Wednesday, November 1, 2017

Feeling it in my bones

I've been thinking a lot about how my body knows what time of year it is.

I've been trying to figure out how to put this into words, how I feel November coming deep within my bones.  How I could possibly explain this to someone whose body doesn't carry the shock and trauma and grief the way that mine does.  How it's visceral, not rational or intellectual, how I feel it in my guts.

Then, this morning, I was listening to my favorite podcast, Terrible, Thanks for Asking, and my sister-in-grief, Nora McInerny, who became a widow at age 31 when her husband died from cancer,  put it into words for me:

"It was a year later and I woke up, and my body remembered.  It remembered all of the horror to follow, and it was bracing me to lose Aaron again."

This is it.  My body is bracing to lose Lydie all over again.

A difference between Nora and me?  Her loved one did not die inside her body.

So while it feels physical for Nora, it makes sense that it really feels physical for me.

My body remembers the ultrasound, at the end of October.  The last time I saw Lydie moving, when I thought we'd be bringing her home in a few short weeks.  An extra, unplanned ultrasound, after my belly was measuring small.   "Let's just take a look at her, just to be safe," my OB had suggested.  I felt panicked as my OB ushered me from the examination room to the ultrasound sound.  And sweet, sweet relief when I was told my daughter was in the 30th percentile and doing just fine.

She would be dead in two weeks.

My brain asks why I didn't demand an NST, more testing, why I took my OB's word that my baby was fine.

I know the reality is that I didn't know then what I know now.

I know the reality is that most women trust their OBs.

That doesn't mean I don't wonder if Lydie actually had intrauterine growth restriction, if maybe that cord constricted many times, causing her to be smaller than both her brother and sister were at that gestation.  That maybe she constricted her cord, unconstricted her cord, constricted her cord, unconstricted her cord many times, before the time when she didn't.  That maybe if I had had an NST we might have seen decelerations of her heartrate and realized the danger of her umbilical cord.  That maybe if I had been 35 and "Advanced Maternal Age," I might have had more thorough prenatal care.

There's a million what ifs and there will always be, because we'll never have answers.

I live with these what ifs everyday, but it's this time of year that I wonder the most.

Three years ago, I was still living in the before.

Three years ago, I still could have changed the outcome.

Last night, Ben pulled on his Spiderman costume and Josie her Elmo, and we met up with our neighbor friends. I drank my travel mug of wine and reminded Benjamin to use his manners and helped Josephine up steep steps and thought of Lydie. Three years ago, trick or treating, a neighbor handed me a piece of candy and told me it was for the baby.

The baby would be dead within the week.

I never saw it coming, though her death took place inside me.

On November 5, 2017, I will inevitably relive November 5, 2014. I will watch the time and at 8:45ish, I'll think about how I realized I didn't know the last time Lydie moved.  My body will feel that pit in my stomach all over again. At 9:15, I'll relive the moment of the silent Doppler. I'll think about the silence, the panic rising, the moment of relief when I heard a heartbeat, the crash when my OB told me that was my own heartbeat. How at that moment, I knew. A few minutes later, I'll think about how I had to call my husband and tell him, how I was forced to shatter his world. He'll think about how he feels physically ill when he sees the conference room he was sitting in when he received that phone call. Around 10:30 am,  I'll think about how the phone rang, with Benjamin's school's telephone number lighting up the screen and how I was sure they were calling to tell me he was dead too.

You see, by 10:30 am, I was living in the after.

The after is one where you live with the knowledge that you can do everything right - for pretty much your entire life - and everything can go so terribly wrong. It includes anxiety and fear. And jealousy.  And anger.

The after is one that you have to learn to manage these emotions to be a good mom, a good employee, a good friend, a good human being.

In an especially cruel twist, Daylight Savings Time occurs on November 5th this year. Fall back. That means that I get to live an extra hour of the worst day of my life. It also means the game I play, the one that I relieve every moment while staring at the clock is that much more challenging.

Of course, Ben got invited to his very first birthday party from his new school... on November 5th. Justin looked at the invitation, threw it down, and declared, "Well, that's not going to happen."  Ben cried.  I will get into how difficult it is to parent living children and a dead child at some other point, but for now, I will say this: nothing about the after is simple.

We'll do our best to get through the day on November 5th, 2017, the same as we've done on November 5th, 2014, November 5th, 2015, and November 5th, 2016.

I'll let my body feel it, because as terrible as reliving these moments are, I need to. I want to.

I'll grieve heavy that day with the hopes that Lydia's third birthday will feel a little lighter, a little more celebratory of the girl that rocked my world, who I love for the rest of time.

Tuesday, October 24, 2017

Second Annual Lydie's Loop: A Photo Recap


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I've been wanting to process Lydie's Loop in this space, but I haven't known where to begin.  It’s hard to find the words to explain what it’s like to work nonstop for six months on an event that culminates in 232 people wearing t-shirts that bear your dead daughter’s name and her footprints.  It’s hard to put those emotions into words.  But we got the professional photos back just yesterday, so I’m going to try to use them to tell this story.

On the morning of Lydie’s Loop, at 6 am, I left my house in the dark, driving my Mom’s loaded SUV.  I followed Justin in our loaded Odyssey and my dad in his loaded SUV.  I listened to Lydie’s playlist and I cried.  I cried because I wished that I was one of the many “normal moms” who said things to me like, “Oh, wish we could make it, but we have soccer!”  I wished my biggest cause of stress and anxiety was a packed schedule. 

Just the week before, I had wailed to my sister on the phone about this, how many people gave me some reason they couldn’t make it.  How I wished I couldn’t make some event that is to honor their dead daughter with the ultimate goal to stop babies from dying in the same way their baby had.  We have soccer on Saturday mornings too, and in fact, I’m even the coach.  But there are some times that people just need to SHOW UP.

So I got my tears out on the dark drive, and I heaved a sob when I turned into our old neighborhood, the one I lived in for six years and Lydie lived in for eight months.  But when I pulled into the park’s parking lot, I wiped those tears away and got ready to work.

Which is good because the biggest downside to this park is that you can’t drive anywhere close to the pavilion.  We decided to host at this park again, to not give people a new location to find, and to not have to run the loops of Lydie’s Loop five or six times to track out the mileage on my FitBit like we did for the first event.  But the many trips with the wagon or the Double Bob (which we ironically purchased for our two babies while I was pregnant with Lydie, which is NOT how we imagined using it), certainly add to the work of the day.  Gratefully, I have a few friends who not only SHOW UP but also BRING COFFEE, and we all started our unloading to set up in the dark.


As we set up the pavilion, a Lydie Sky greets us.  It was a moment for me.We also needed that daylight!


My excited kiddos arrive! Thankful for an Oma who pulled morning duty with them.
Know what's cool?  When years ago you have happy hour margaritas with a soccer friend and some of her friends, you meet a cool woman who is starting her own children's entertainment business, she is so good at what she does that she grows her company into a huge business in a couple years, and sixish years after your first and last meeting, she SHOWS UP and volunteers her time to make awesome balloon animals at your event for your dead daughter.

First balloon of the day is for this rainbow girl.

Look at these big kids, writing their sister/cousin's name all by themselves.

I talk a lot about Beth, one of the women who delivered both of my girls, in this space.  I know how lucky I am to have her.
And I think Jos is pretty lucky too.


And here are Beth's triplets, my niece and nephew (who loooove Beth's triplets), and my kiddos.  Special.



For comparison sake, here's the same kiddos from a year ago.  Minus Josie and plus Lane's pirate facepaint.



Love this photo of our family of five.  Might just be able to send a Christmas card this year.  

Still love this work done by my friend Jessi Snapp, using Lydie's footprints.

We ended up with over forty-five raffle and silent auction prizes.  I actually had help in this area, which was sooo nice!  My uncle Ron made this gorgeous memory box, which was a big hit.  Lydie has the same one.

Almost ready to go.

We had real signs this year!  LEGIT.

Registration is open!


And we begin!  Another speech about Lydie and Star Legacy.

One of our blunders of this event... we decided to read each of the 51 baby names aloud.  At the end of my speech, I said that we don't get to hear their names called at graduation, so we wanted to recognize them here today.  And then I shuffled through all my papers, but the names, that I had so carefully collected, organized, and printed were missing.  I shuffled some more.  And some more.  Until someone tossed us a t-shirt.  It's amazing how you can be so organized and yet the day of the event, it can all go to shit.  That list never did turn up.  But I heard from several people that they loved hearing their child's name... guess were we read it from was not what mattered.
Getting ready for the kids' dash

Look at my boy hustling in the kids' dash!  
All the runners and walkers line up!
Our rainbow.



Lydie's Fam.  Love having photos that feel as complete as they get to be in this lifetime.


The morning passed in a blur.  Meeting new people, trying to stick to our timeline while watching folks walk in from the parking lot when the welcome speeches were supposed to start 5 minutes ago, hugging friends who I haven't seen in a long time who SHOWED UP, chasing raffle bags that blew away as the wind picked up, hoping someone was watching my children because I wasn't, answering questions from all the volunteers, attempting to fix the time clock that never actually showed the time, monitoring the silent auction sheets and hoping the bids came in (they did!), pulling names from raffle bags and announcing winners, and finally... drinking beer at the bar with a few old friends, a few baby loss friends, and my family.
And rainbow babies.

And afterwards, after party.  Which included beer.
The rest of the day passed in a blur as well, as we hosted a SLF Board Member from Minnesota who felt like an old friend, as my family for the day and more old friends visiting for beers late into the evening.

I'd call the event a success, with over $18,000 raised.  Not the $21,000 we raised last year but not too shabby either.  Lydie's Loop brought a community together in Ohio and awareness about stillbirth and prevention efforts, allowed us to continue to promote the Ohio Chapter of the Star Legacy Foundation.   I truly believe that we should not only be supporting bereaved families but focusing on research and prevention efforts, and I also believe that we can do a whole lot more as a national organization working together.

A friend asked me if I had recovered only a couple days later.  Yeah right.  I'm still trying to wrap up this year's event.  I think what others may not recognize is that the work is not over when the event is over.  I wish I was done on October 7th but instead I had bunches of virtual shirts to mail out, dozens of thank you notes to write and mail to businesses and individuals that donated food, raffle prizes, and silent auction prices.

I've heard lots of thank yous, and that feels good, because it often feels like thankless work.

I also got an email TWO DAYS later asking about the date of next year's Lydie's Loop.  While it made me want to throw my phone across the room because please just let me catch my breath, I know it's also a compliment of the highest degree.  My mom told me planning for next year started on October 8th.  Here it goes, continuing on with Lydie's story.

As my friend Molly told me, she was thinking while driving away from Lydie's Loop, "I was so immensely grateful that you've created this fun and festive event where people can smile AND cry AND play AND grieve AND remember AND hope."   
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A great article about Lydie, Lydie's Loop, and how we founded the Ohio Chapter of the Star Legacy Foundation was published here.  It was exciting to see it on the front page of our local paper!
 
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