Tuesday, October 11, 2016

Catching up.

I've been absent from the blogging world for a while now.  It's not for lack of emotion or substance. Maybe the opposite.  Too many emotions, too much substance, and never enough time.  Or words. Never enough words.

So let me just give a rundown, because if I don't blog now, I feel like I'll never, ever catch up.

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Bowie turns one tomorrow!  Tomorrow!  I'm filled with all kinds of emotions just thinking about it.   I can't believe a year ago, I was still pregnant and on the flip side, I also can't believe my baby girl is not such a baby anymore.   I still feel the anxiety of her pregnancy and the relief at hearing her first screams, and mostly, I feel so grateful she is here.






Also - remember how freaking painful that amnio was, how it caused me to have contractions and Bowie's heartrate to drop?   And how my MFM decided to move ahead with the c-section even though the results came back freaking inconclusive?  And how both Justin and I were terrified that she could die as we were driving between the hospital which my MFM works at and the hospital at which I was delivering?  

Yeah, me too. 

I also remember the sweet, sweet relief when I made it safely to the second hospital and hooked up to monitors where I could hear Bowie's heart beating, and I knew I could be rushed down to that OR at any moment.   







Bowie turns one tomorrow which means Lydie would be turning two soon.


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Today, Facebook reminded me that one year ago today, an article about Cuddle Cots was published in the Columbus Dispatch and in it, I share about our time with Lydia. I am quoted sharing about the loving nurse who rocked and sang to Lydie as we left the hospital without her. When I bent down to give Lydie one final kiss and tell her I love her one more time, that nurse kissed me on the forehead, and said, "she knows." In my fog of drugs and shock and grief, I didn't even remember that nurse's name though I could never forget her face.







A very long 11 months and 6 days later, and one day after this newspaper article was published, I returned to that hospital to give birth to Lydie's little sister. I hadn't spoken to our nurses since November 6, 2014, and it was a reunion for all of us. While I was laying in the hospital bed, listening to Bowie's heart beat and awaiting my c-section, in walked that nurse. The nurse who was holding my daughter when I said goodbye. I can't explain how this reunion felt to me, or how it felt the next day, when that same nurse came to visit us and hold Josephine Hope. The mix of emotions. The gratitude for what is and sorrow for what should be.
The Columbus Dispatch had some remarkable timing.

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We're all moved into our new house, and the move was as physically tough as I thought it would be.  Turns out we have a lot of shit, and we're still trying to find it all.

I love our new location, which is a three minute walk from the largest body of water in central Ohio (a reservoir!)  We are talking about buying kayaks but for now, I am enjoying seeing the marina every morning as we leave our house and playing at a playground overlooking the water with my kids.  I also enjoy that we're teaching Ben to find his sister in nature, and that in these moments, such as seeing the sun rise over the water as we drive by,  he often says, without any prompting, "Good morning Lydia!"




Emotionally, it hasn't been as tough as I expected.  Ben has transitioned better that I thought he would.  The day we moved, I told him that he'd leave the old house to go to school, and at the end of the day, he'd go home to the new house.  "Mom..." he started, and I expected some push back.  "After school, can we paint the new house blue?" he finished.



















We moved Lydie's plants for her old garden into her new garden just a few days after we moved.  I felt relief when her new garden was planted, to look out the kitchen window and see my girl's name etched in rock.  It doesn't look great now, but I know spring time will bring blooms.









I was scared I'd lose a piece of Lydie when we moved from her only home.  But a friend of mine told me: "this kind of love knows no boundaries" and it turns out she's right.  I don't feel Lydie any less in our new home.  In fact, there are some things I don't miss, like the area of carpet where Justin and I collapsed when we got home from the doctor's office and stared at the wall together for hours as we tried to comprehend what we were just told.

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The other day, Ben asked if his friend A has Lydie in his heart.  No, I told him, I don't think so.  But she died!  He told me.  So A should keep here there.  Well, buddy, I explained.  She's your sister, not A's.  So he doesn't love her like you do.  Nah, he said, I think he does. Hard to argue with that.

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A couple weeks ago, a baby loss friend who is pregnant with her rainbow baby posted a screenshot of her 35 week email from BabyCenter. It told her - and likely millions of other women- that babies slow down at the end of pregnancy because they run out of room. 

Now, many of us know this fallacy contributes to stillbirth. I took my own screenshot and forwarded it to the executive director of Star Legacy. We had several emails back and forth about how to best educate BabyCenter and how to ask them to change their incorrect information.

The day before Lydie's Loop, I took the day off to run all sorts of errands . My emotional state felt fragile as I ran through thunderstorms to pick up 200 donated bananas at Trader Joe's and 30 bucks worth of granola bars at Costco. I was on my 6th hour of errands, I was exhausted and starving when I finally sat down for something to eat and I pulled up this email forwarded by Lindsey.



I burst into tears in the middle of Chipotle. Instead of feeling happy that I had made a difference in giving correct information to expecting moms, I felt pissed off. I was mad that BabyCenter acts like stillbirth doesn't happen all the freaking time. I was mad that they have been giving expecting moms incorrect information for God knows how long. I was mad that a site that is supposed to educate is instead, likely contributing to the deaths of children. I was mad that I was spending my day getting ready for a 5k to honor my dead daughter instead of planning her birthday party. I was mad that all it took was some emails and BabyCenter will be changing their information and it felt like I was the only one working to make these changes. And I cried over my burrito.
But here's what I'm realizing:  it's often not as difficult to make a difference as we might think.  
And just for the record, babies' movement may change as they get bigger but it does NOT slow down. 
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On Sunday, we attended an infant and pregnancy loss ceremony at the hospital.  Our nurses have been pushing to be able to have such a ceremony and it was the first time they have offered it.  We've also developed a relationship with hospital administration after we donated the Cuddle Cot and they sponsored Lydie's Loop, so I felt it was important for us to attend.

But it turned out it was really hard to be there.

When you're almost two years out, it's really difficult to be around fresh grief.  You remember just what that feels like, but you're not there anymore and you don't want to be. There's a band-aid over a wound.

And I found myself wanting to bolt.

So while other people were sobbing over the microphone while trying to choke out their child's name, Justin, Ben, Josephine, and I calmly went to the front of the room and stated we were there for our daughter and sister Lydia Joanne.  I spent most of the rest of the ceremony wishing it would be over so I wouldn't so desperately have to try to keep my kids quiet with snacks (for the record, it was an hour and ten minutes which was about 45 minutes too long).

At one point, I took Ben and Jos to the back of the room so they would at least be disruptive to other families.  A woman who was clearly the grandma walked up to me, put her arm around me and pulled me in for a hug, and said, "I'm sorry for your loss."

"Uh, thanks," I stammered.  I should be used to that by now but I still haven't figured out the best response to that, much less when I am being hugged by a stranger and clearly NOT upset, just trying to corral my children.

"I see you had another one," she said, motioning to Josephine.

Yes, I respond.  Yes, our girls are Irish twins and we're grateful she is here.

"They're having a healthy one this time," she responds, pointing to her daughter and her bump.

"I'm sorry?"  I ask.

"This baby, it's healthy, thank God," she continues.  "I'm glad you had a healthy one too."

I turn and stare at her.  "My daughter was healthy," I say.  "She died of a cord accident.  When I was 34 weeks pregnant."

Her mouth drops and her eyes widen and I want to throat-punch her.  Instead I nod as she stammers another apology and I walk away... right into a woman who came to Lydie's Loop.  My mom had told me about her, that she sat near the bathroom much of the time crying, that her son had just died a month ago, and she didn't understand why we all seemed so damn happy.

"You were at Lydie's Loop, right?" I say to her.

She bursts into tears.

Then she tells me that I seem so happy.

I find myself defending myself, my daughter, my grief.  I tell her Lydie would be almost two and I've come a long way.  I tell her I couldn't eat.  I tell her I had a hard time leaving the house.  I tell her I couldn't talk to old friends.  I tell her I miss Lydie every single moment of everyday but that I'm used to that feeling.

But then I realize that I don't want to be defending myself, my daughter, my grief, and I awkwardly excuse myself, grab Ben's hand and hightail it out there.

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I feel like we try to create these moments so that we feel Lydie close.  And it works often, like when we sent a sky lantern to our girl over Lake Huron.







But other times, we just have these moments, when I feel Lydie close even when I'm not working to make that happen.  Like when we went apple-picking, which we did with Lydie in October 2014 and again in October 2015, and apparently, again in 2016.











Lydie's Loop: Steps against Stillbirth recap

I planned for months and months without knowing what to expect.  I hoped people would register, show up.  I ran around like crazy the day before, picking up a sound system and a timing clock and balloons and running through thunderstorms to five different grocery stores for donations of food.   I cried over stupid stuff.  On my way to bed on Friday night, I checked my email (which I had checked fifteen minutes before) and instead of being grateful to have eight new registrants sitting in my inbox, I cursed.  I worried that I didn't have enough food for them and I was annoyed to have to ruin my perfectly spaced and alphabetized printed spreadsheets with my penned handwriting.

The day of, I climbed out of bed at 5 am because there was no reason to lay there worrying when I could get to work.  I kissed my living children goodbye, left them with my parents, and climbed in my mom's packed SUV in the dark to drive to the park within my old neighborhood.  I watched the sunrise and the fog lift from the pond as Justin and I carted wagon after wagon of supplies to the pavilion.



And then soon, people started showing up.  I suddenly had a team of volunteers I was directing. I raced over to hug my friends Amanda and Chris who flew in from Minnesota just for the event.






I compared the event to my wedding day for multiple reasons.  One reason was that I worried like crazy ahead of time and the day of, I said fuck it.  As I was unpacking raffle prizes, the growler flew out of my hands and shattered all over the pavement.  "Well, the free growler fill coupon isn't going to be very good now," I remarked, as my friend Amanda ingeniously found the snowscraper in my van to clean it up.

The families started showing up, and the facepainter and balloon twister got to work. I didn't see Benjamin the entire time because he was too busy running around with his cousin and his new buddies, Beth's triplets.  There was a moment when I looked over and saw my son sitting on a stoop with his two cousins and Beth's triplets.  I would have never pictured that scene 23 months ago, and yet, it warmed my heart.



 Gratefully, like my wedding day, I had a professional photographer and videographer documenting the moments.  And like my wedding day, I couldn't wait to see the photos after the event.

I had friends shown up that I haven't spoken to in two years, that I never heard from after Lydie's birth.

And I guess, they're really, really late, but I'm glad they're showing up now.







Got a lot of compliments on Bowie's rainbow headband, Jen Watanable!

The L&D staff and my OB.

Before we got started, I spoke about Lydia.  I began: "Let me introduce myself.  I'm Heather Johnston Welliver.  I'm Lydie's mom.  I love every chance I get to say that, because it doesn't happen enough."


And then we moved on to kids' dash, that Benjamin has been talking about for months.



Kids' Dash!

Son and nephew holding hands.  Swoon.




I spoke with that photographer friend, Leigh Zeidner, a couple days before the event about what I was hoping she would capture.  Later, Justin suggested that we also try to for a group photo.


It turns out we had too many people for that.  I've been told this was a "good problem" to have.

Similarly, even though I ordered 25% extra shirts after the early registration deadline, we still ran out of shirts.

We had 177 adult participants and 42 kids' dash participants.  The following week, I mailed out 61 participants. That makes 280 participants.





Ben looks pissed off and Josie has food on her face, and I love this photo all the same.
Chris is on the board of Star Legacy and flew in to represent them.  So glad Amanda decided to join him.


The Johnston fam.




And like my wedding, I was so overwhelmed the whole time that I felt like I was missing much of the action.  I had a receiving line at the end of the race of people who wanted to talk with me.  When I finished hugging the last person, I said, "Now we have to go get all the signs off the course!"  My family laughed and told me that was done.  And I looked around the pavilion and it was all cleaned up.

And like my wedding, then I got to go enjoy an after party, where I finally got out my own camera.  And drink a beer.

Rainbows and beer.  And good good friends.

Featured here is my (and Lydie and Josie's) L&D nurse Beth, me, my BLM friend Kati and her rainbow Finnegan, my BLM friend Amanda, and my college roomie Kate.  It was fabulous to have all my people get to meet each other and hug each other. 



We fundraised a total of $21,200 for the Star Legacy Foundation. That alone is pretty incredible, considering when we set our goal of $10,000 six months ago, I thought it was ludicrous.  But more importantly,  the sheer turn out shows that we created a community of support that is desperately needed.   

Lydie's Loop created a community of people that came together to show their love and support.  Not just their love for Lydie but for the 40 other babies listed on the t-shirt.  Every week on the Lydie's Loop event page, I shared a story about a baby.  Many mothers told me this was the first time they wrote their child's story, much less shared it.   I created a space that was safe for them to do so.  Other people - people who have never lost a child - told me it opened their eyes and made them think.  At the event itself, some people cried while standing in line.  Others pushed their Molly Bears in strollers while one mama carried a photo of her son.  

We all grieve differently, but we all grieve.  My friend Amanda has called us "active grievers;" we like to do something with our grief.  We like to give it meaning.  We like to change laws, plan 5ks, promote awareness, donate money to research.

Leading up to the event, we were featured in the newspaper here and after the race, we were featured here.  Justin and I were also interviewed for Columbus's evening news, but I haven't been able to see it yet!

What I'm learning is that Lydie's story didn't end when we left the hospital with her.  Lydie's story is just unfolding now.  Not the way I pictured it, but it's unfolding all the same.




 
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