Tuesday, September 29, 2015

And nothing else matters.

When I was 21 and a week away from my college graduation, my 11-year-old cousin died.  An accident on the family farm.  Sudden.  Tragic.  Horrific.

I was student teaching his six grade at the time, spending every day with other 11-year-olds.  His death hit me hard.

After his funeral, I returned to my old college house, with my five roommates who were increasingly upset about our upcoming graduation, about moving on and away from our college community and each other.  Together, we attended our college mass.  Almost all seniors were intermittently crying; after all, it was our last mass.

I didn't shed one tear.

I remember a friend asked me why, and I responded, "I'm all cried out.  I just attended an 11-year-old's funeral."

My cousin's death really put things in perspective for me.  How fortunate were we to be able to take the next step in our lives?

As someone who is a natural worrier, I've tried to keep that perspective with me since then.

People tend to get upset about milestones that are a natural part of life.  Or they stress about problems that money can fix.  Or problems that will be resolved over time.

There's really only one thing that's not fixable.

Soon after Lydia died, a colleague of mine broke his leg.  It was a bad break.   With my "medical leave" (not the "maternity leave" I had planned for) after her death and then his medical leave after his accident, I didn't see him for a few months.  When I first saw him again, he commented about his leg as if that was the biggest event since our last meeting. He did not mention Lydie. I was dumbfounded.  Your leg will heal.  My daughter will not.

When I hit a curb a few weeks ago and immediately got a flat tire, I laughed about it.  Just what I need at this point in time.  Guess I know what we're doing over the weekend: tire shopping!  And it was annoying, sure.  It was money we shouldn't have had to spend.  But as my mom constantly reminds me, shit happens.  And this problem was fixable.  And so I threw my money at it and the problem went away.

When I kid, I refereed under-8 soccer.  Ten bucks an hour in my pocket felt like BIG money.  At one point, I made a bad call and a coach yelled at me.

After the game, I dredged up all my thirteen-year-old's courage and I approached that coach and apologized to him for my bad call.

"You won't remember this in ten years," he told me.

Ironically, I do, but only because his comment has stuck with me for the last twenty-something years.  It's a good way to measure the things I stress about.  Will I remember this problem in ten years?  

A lot of us in the baby loss community have trouble being out in public after our loss, whether it's running to the grocery store or attending a child's birthday party.  We belong on Planet My Baby Died and nowhere else.  How people can stand around and talk about the mundane boggles my mind.

Right now, it feels like I belong on Planet My Baby Died and I'm not sure this one's going to live either.

A coworker complains that she keeps waking up in the middle of the night, worrying about work.  Oh really?  That sounds delightful.  I wake up in the middle of the night, terrified that this child has suddenly died on me too.  

The things I would like to say sometimes.

A friend complains about her birthday, about being another year older.  How lucky you are to have another year, and I envision the certificate given to us by the funeral home that reads "Lydia Joanne, age 0."

I have found that I have hated the question, "How are you?" since Lydie died.  When people use it in passing, as a greeting, I don't bother to respond.  When they seem earnest, like they are waiting for a response, I say "hanging in there."  Which I am.  Sometimes not as well as other times, if you'd like to delve into that mess.  I am shocked when people who know our story respond by saying things like "Oh me too!  Things are just so busy lately!"  Right.  Busy-ness.  Right.  More like, I meant: So far, this baby hasn't died.  But I am constantly worrying about it.  I nod and smile and walk the hell away.

I already had this perspective.  I already tried to remember that the only thing that matters is that we are alive and healthy.  I tried to remember that things that feel like big problems often aren't big at all, in the grand scheme of life. Then my daughter died.  And I was taught that perspective again.  And while I still catch myself stressing about being caught in traffic or the washing machine breaking, I am much better at remembering that nothing else matters.

Nothing else matters.

Thursday, September 24, 2015

A Family of Five in Photos

I have found that at this point in my Bowie pregnancy, part of me wants to stay busy so that time goes by quickly (as quickly as it can when you wonder about every twenty minutes if your baby has died).  The other part of me wants to sit my ass on the couch with my hands on my belly and monitor every single roll, stretch, and kick.  It's tough to balance.

This past weekend, my sister and her kids came to visit.  And my sister helped me find that balance.    We went out for ice cream and to feed ducks at our park (and got caught in the pouring rain) and Bowie wasn't very active - and then we rushed home and she took all the kids to the playground while I laid on the couch, drank ice water, and counted kicks.

My sister also took some photos of our family while at the park.  A BLM friend said that in her subsequent pregnancy, she was trying to concentrate more on the experiences of the moment, instead of the final result.  That resonated with me; I cherish every photo I have of my Lydia belly, even the final one, which was taken at a bar, with my brother's then-girlfriend.  If Lydia hadn't died, the photo probably would have been deleted by now.
You can barely even see my Lydie belly here, but I know this was the last one taken before my world crashed around me.  I know my smile will never be so innocent and pure again.  And also - -Ben is so young here.  It was taken October 31, 2014.  It's been a long fucking year.
I figured, no matter the outcome, I'll always be grateful for any photos of my Bowie belly.

We used our Lydie Bear, made by Molly Bears.  She weighs 3 pounds, 10 ounces just like Lydia.  When I let my mind wander, I daydream about taking photos of Benjamin, a real live Bowie, and our Lydie Bear.

So here's a few of my favorites:


The next day, we took the kids apple-picking.  Justin captured these sweet moments, and when we flipped through the camera afterwards, they took my breath away.  I've written here about how I struggle to find signs of Lydie, how my practicality and cynicism gets in the way.  We're not butterfly or angel people, but Justin and I often look for her in the stars.  And even for a cynic like me, it's hard to deny Lydie's presence in these photos.

Somehow, The Dad managed to capture a photo of me with all three of my kids.  I am in love with this photo.  

Hopefully less than 3 weeks to go.  Somehow, we are hanging in and hanging on.

Friday, September 18, 2015

33 weeks and 5 days.

So here we are... the point of Bowie's pregnancy where Lydie unexpectantly died.  In the pregnancy after loss community, we call this the "point of loss."  And for many women, it's one of the hardest parts of their subsequent pregnancies.  (And yet, most claim it doesn't get any easier after that either...)

It's the point where the little sister suddenly becomes older than the big sister.

Actually, I'm not sure when exactly Bowie and I get there, as I'm not sure exactly when Lydia died.  I know it's consuming me right now, as I can't sleep with this heavy 33 days and 5 week belly. Was she alive right now?  What about right now?  When did she silently slip away? And what was I doing?  And how the fuck could I not know?  And please, please Bowie, give me another nudge.  Wake up, Bowie!  No resting from you right now.

I know that the morning of 33 and 6, Lydie's heart was no longer beating.   I know she was delivered at exactly 34 weeks.  I just don't know when that perfect little heart stopped.

One of my friends said she was really angry at her point of loss in her subsequent pregnancy.  To quote Nora, "I'm angry that this happened to you, to me, to our family.  I'm angry that you were robbed of your chance so close to the finish line.  I'm angry that I was allowed to plan for you for such a long time, to feel you and grow you and know you for so long only to have you ripped away.  I'm angry that everyone I love was deprived of this connection I will always feel.  I'm angry because the same thing could still happen to this baby.  I'm angry because I have to know that."

I know.  I've been angry for 10 1/2 months now.

It's the most unfair thing in the world.

Yesterday, a colleague asked me how far along I am, and I responded, "one or two days from when my daughter suddenly died."  Granted, this was directly after a conversation where another colleague couldn't stop congratulating me and telling me how "excited" I must be.  Finally, I said, "Well, it's complicated, because my daughter was stillborn last year."  Well, he responded, I heard about that. But you couldn't have been so far along right?

Right.  Because babies couldn't possibly just suddenly die when they were so fucking close.

It's been heavy on my mind all week.  And I think - if possible - the anxiety has been worse.  It has only taken about six minutes since the last Bowie movement to start to wonder if she's dead. And maybe about 20 before I start to poke and prod.  Much longer would lead me to full-on panic.

Taking our chalkboard picture this week, it was impossible to not think about how this was the final update of Lydie's chalkboard.  How Lydie's chalkboard never turned to 34.

The last time I'll be able to compare my three baby bellies.  I can't help but notice my Lydie belly is the smallest, and I don't think it's just the photo.  I was told at 32 weeks I was "measuring small" with the super-accurate (note the sarcasm) tape measure on the belly.  But when we did an ultra-sound, Lydia was measuring at the 50th percentile and I was told all was well.  However, Lydie weighed 3 lbs 10 oz at birth at 34 weeks, while we were told that Bowie weighs about 4 lbs 8 oz at 32 weeks.  Perhaps Lydia wasn't getting everything she needed after all?  It's another question I constantly wonder... but that I'll never actually get answers to.
Lydie's chalkboard on the left.  It sits in our china cabinet now.  Bowie's chalkboard on the right (this is the first time I've realized they are not the same size.)  Here's hoping Bowie's is updated on Sunday.  (Benjamin's chalkboard has long since been turned into his own to scribble on).

This is the last time I'll be able to compare the three bellies of my three babies.

(And side bar but worth noting is how Benjamin and I got rear-ended on the way home last night.  Really, universe?  Is that what I need right now?  It was some silly teenage girl who "had the sun in her eyes."  She actually reminded me of myself, because I had quite a few driving "incidents" when I was 16.  And I told her that.  I told her I did stupid stuff when I was her age too.  But now I'm 8 months pregnant with a two-year-old in the backseat and I'd really appreciate it if she'd keep the stupid stuff away from me and my family.  And for once, I didn't even mention Lydie.)

I wonder what Sunday morning will bring.  It will be another hurdle down, for sure.  Maybe I'll be able to do things like look at the waiting list for daycare that was sent home in Ben's backpack weeks ago or the email from HR a month ago about "parental leave."  Maybe when I'm told that Bowie looks perfect at an appointment, I'll no longer want to defend, "But Lydie looked perfect at this point in time too!"  Maybe with that will be some relief?

I wondered in the early days of this pregnancy at what point I would stop wishing for Lydie to be here and healthy, and that I wasn't pregnant with Bowie.  30 some weeks later, what I know now is that I will never stop wishing for Lydie to be here and healthy.  But what I want is for both of my daughters to be here and healthy.  For all my three of my children to be here and healthy.  It's not Lydie over Bowie or Bowie over Lydie.   I just want all my kids.


Just as another side note:

Eight days after beginning our fundraiser for a cuddle cot in honor of Lydie, we met our goal.  We are so grateful to everyone who supported the effort.  You not only help us to honor Lydia but help other families who are forced to endure the devastation of stillbirth.

Because we are working with several other families to place more cuddle cots in other Ohio hospitals, we are continuing to accept donations.  I'm also making plans for the official donation of the cuddle cot,  as well as working with the hospital staff about how to educate medical professionals on infant loss and how to best support grieving families.  You can follow updates here: www.youcaring.com/lydiewelliver

Thank you for helping us to make a difference in Lydie's name.


And another side note:
A few of my lovely friends asked to see a photo of Lydie's blanket after my last blog post.  Happy to oblige.

"You are loved, you are loved, you are loved."  

Friday, September 11, 2015

Lydie's blanket & my Bowie belly

When I was pregnant with Lydia, I crocheted a big yellow blanket, with edges of bright pink and bright blue, for her.  I hadn't quite finished it when I found out she had died, and I debated bringing it to the hospital: do you pack the blanket you've been lovingly working on for months, envisioning it holding your living child, once you found out your child is dead?  I'm so glad I brought it, and while I labored through the early hours of the morning, Oma Jo finished it for us.

This is the blanket that held Lydie, that is stained with her blood, that stayed wrapped around her while her dad and I said our tearful goodbyes.  It held her as she made her way to the funeral home, and it was returned to me later.  And each night since she died, I have curled up with her blanket.  It's the last thing that touched her, and I feel like it connects us.

I've tucked Lydie's blanket under my Bowie belly as it has grown.  Her blanket supports my belly much better than any pregnancy pillow.  And I like to think of the blanket that cradled Lydie cradling Lydie's sister.  I like to think of Lydie's blanket surrounding Bowie with love.  I like to think of it connecting all three of us.

These are the thoughts I try to return to when it's 2 am and Bowie's not moving and I am trying to slow the panic.  These are the thoughts that help me breathe when I am crying into my pillow instead of sleeping, when I'm begging Bowie just to give me a kick so I know she's still alive.  So I can maybe get more than a couple hours of sleep.

But sometimes, no matter how hard I try to let the loving thoughts be the ones that invade my brain in the middle of the night, I think of how cord accidents often happen when the mom is sleeping.  How I was likely sleeping when Lydie slipped away, how I'm terrified that I'll wake up but Bowie won't. How am I supposed to sleep, knowing that?

I think about how I can't lose another daughter.  How I don't think I could keep on living if silence filled the delivery room again, if I had another urn on my mantle, if my milk came in and there was no baby to feed.  How it's been hard enough to be a part of society after losing Lydie, but if Bowie were to also die, I don't think I could ever bear to leave my home again.  I tell Justin if Bowie dies, we're moving to a remote cabin in Montana and I'm only giving my contact information to other BLM's.  I think about what it was like to watch Lydia deteriorate in front of me.   I think about the closet full of adorable girls' clothes that haven't been touched since last November.  I think of the two little girls who should both get to wear them.

I poke and I prod and I try to stay calm as I wait for Bowie to respond.  And I try to think of Lydie's blanket holding her sister in love.

I have been realizing I feel like Bowie has a 50/50 shot at coming out alive.  Like really, it could go either way.  Sometimes it surprises me to realize that her odds are actually much, much better.  But what do odds mean anymore?  Anytime I picture myself bringing home a living baby, I worry I am setting myself up for devastating disappointment.  I think if I gear myself up for another death, maybe it won't hurt quite as bad.  I think about how blindsided I was when Lydie died.

I'm going to three appointments a week now.  I'm trying to look ahead to the next appointment only. I'm trying not to look past that, but it's hard.  Who else is almost 33 weeks pregnant and not thinking about the end game?  Dr. B has been talking about delivery at 36 and 5, and though we hadn't scheduled anything, my mind still found it impossible to not engage in a countdown.  So when I heard that the MFM has nixed that plan, I cried.  I sat there in my OB's office, and I cried to her.

I asked: Do you know how hard it is to be pregnant again after your perfectly healthy baby, who could have lived outside you, died within you?  Suddenly and without warning?  Do you know hard it is to be at that point again?  

I know, I know that prematurity is no joke.  But I can't seem to worry about Bowie needing a little bit of time in the NICU, because it would mean she was alive.  

I'm pretty sure I'd have them get her out now, if they'd let me.  Get her out now, while we know she's alive.  Get her out of my death trap of a uterus.  

Clearly, my doctors aren't going for that.  And yesterday, the news was sprung on me that the MFM wants me to have an amnio first, to check lung development.  We can't plan a c-section, as I thought we would.  We will instead plan an amnio.  If Bowie passes, she'll be delivered that day.  And if she doesn't?

We have to wait until she does.

I told Dr. B, through my tears, that she may need to have me hooked up in the hospital at that point.

"Okay," she told me levelly.  "We can talk about that."

I hope she doesn't think I'm joking.

So somehow, I have to keep going for another 4 or 5 weeks.  I have to keep working full-time, keep taking care of my precious and crazy toddler son, and keep trying to keep Bowie alive inside me.  Oh, and missing and grieving Lydia, let's not forget that.

Tomorrow, we are one week away from our point of loss with Lydia.  I wonder if I'll feel different once (if) I make it past that mark.  Somehow, I don't think I'll feel any better until I hear this baby scream.

Tuesday, September 8, 2015

Cuddle Cot in Honor of Lydie

Today, Lydie would be 10 months old.  We should be planning her first birthday party, lining up her monthly photos to make a banner.  Since that is not the case, Justin and I are working on another project in her honor.

We are raising funds to buy a Cuddle Cot for St. Ann's Hospital, where Lydie was born.  We only got one short afternoon with our daughter before we had to say goodbye.  In that short time, we counted her ten perfect fingers and ten perfect toes, read to her Wherever You Go, My Love will Find You, wrapped her in the blanket I had crocheted for her, kissed her and told her again and again how much we love her.   We will always wish we had more time.

A cuddle cot is a cooling system in a bassinet that allows parents of stillborn babies to spend more time with them.  One cot costs close to $3000, and can give the "gift of time" to many other grieving parents.   The Labor and Delivery staff at St. Ann's is very excited to have this donation, knowing it will be used far too often, and the gift will be dedicated with a plaque bearing Lydie's name.  We hope to make the donation around Lydie's first birthday on November 6th.

We've set up a fundraising website here: www.youcaring.com/lydiewelliver

Please do not feel pressured to donate.  A simple share or "like" or comment on social media also helps this campaign by reaching a broader audience.  

I've met several other women running similar campaigns, and we hope to be able to place Cuddle Cots in every city in Ohio, not just Columbus.  The Public Affairs staff is also interested in pitching this story to the media.  So stay tuned!

If any other baby loss friends are also interested in starting their own Cuddle Cot campaign, I'd be happy to talk with you about how you can do so!

As always, thank you for the support of our family.

(And also, it may go without saying, but I am desperately hoping we will not be making use of this Cuddle Cot ourselves.)

Wednesday, September 2, 2015

The Language of Pregnancy after Loss

Today, I have a piece published at here at Pregnancy after Loss Support.

A snippet: "When my husband and I decided to start trying to conceive, I was careful about our language. 'Trying again,' makes Lydie sound like an error, like a mistake we could correct with a new baby. 'Trying for our third,' acknowledges her place and importance in our family.  It acknowledges her."

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