Tuesday, June 23, 2015

Quotes from a 4-year-old, and other ramblings.

We talk to Ben about Bowie more these days.  He likes to kiss my belly, sing to my belly, blow raspberries on my belly.  He did these things with Lydie too.  It feels like deja vu.  I take a lot of deep breaths.   I pat my belly and will Bowie to stay with us.  I tell Lydie I love her, out loud, multiple times a day.

Ben seems to be becoming a bit territorial of my belly.  Last week, when his 4-year-old cousin AJ tried to kiss my belly, Ben responded with, "Nooo!  My Bowie!"  He then demanded, "Close it!," as he pulled down my t-shirt.

He also has picked up that Mama likes it when Bowie gives her a kick and has tried to kick me himself.  Look at me, Mom, I can kick you too!

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AJ made me a clay flower, painted pink, for Mother's Day.  He presented it to me proudly, telling me it was for me and Lydie.  And he said, "Lydie gets all the pretty things."

Thanks, buddy.  I think Lydie is deserving of all the pretty things too.

And soon after, my niece Lane took a bite out of it.

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While sitting at the table eating breakfast, I asked Benjamin, AJ, and Lane what we should name Bowie.  "Lane!" answered AJ.

"But we already have a Lane," I told him.  "If we had two Lanes, Pop-Pop might get confused."

"But we have two toilets!" he exclaimed.

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Next week will be 8 months without our girl.  Which means she will have been gone longer than she was ever here.  Sometimes these kind of realizations take my breath away.

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A few nights ago, I felt more kicks from Bowie than I have felt yet.  Justin put his hand on my belly and felt them too.  It was a nice moment.

A few minutes later while crawling into bed, Justin asked, "Do you think she was moving so much more than usual because something is wrong?"

No.  I didn't.
Until now.

There is just not going to be any reassurance in this pregnancy, no peace to be found.  Until this girl comes out screaming.  Please, please, please come out screaming.


**************************

A lot of baby loss mamas say their "angels" are looking out for their siblings in subsequent pregnancies.  I have never once said that.  I don't want Lydia's little sister to be her responsibility.  I don't want to blame her if Bowie dies.  I want to take care of Lydia, not have Lydia take care of me. 

**************************

I was reading this article from the New York Times, about stillbirth of course, when my sister called.  The article begins:  Dr. Eleni Michailidis, 38, gave birth to a stillborn son, Alexander, in February. Stillbirth is not uncommon in the United States, affecting 1 in 160 pregnancies, but the experience is rarely discussed.

My sister was calling me to tell me that her coworker's wife had gone in for her 38 week check up.  And they couldn't find the heartbeat.  She will be going to the hospital to be induced tonight.  

It's so devastating and completely senseless, and it keeps happening.  You know all that money that ALS raised last year with the ice bucket challenge?  (I was "tagged," but didn't do it because I was afraid it wouldn't be good for Lydie.  Ironic, yes?)  I want to start something like that for stillbirth.  I want to raise money and awareness and show people that these lives matter.  That 26,000 lives lost a year the United States is unnecessary and tragic and worth talking about.   It drives me crazy when people call it "pregnancy loss."  I didn't "lose" a pregnancy; my daughter died. 

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Speaking of, the New York Times is also asking people to share their stillbirth stories here.  I never get tired of talking about Lydie, though the details of her death are hard to relive.  I will share her story and I hope many of my friends share the stories of their precious children.

*********************************

Oh, and also?  I just won a Boppy and a Boppy pregnancy sleep pillow through Pregnancy After Loss Support.  I seriously don't win things.  I just don't.  There's no point in me gambling because I.will.not.win.  Except for the shittiest lottery in the world, the 1 out of 160 stillbirth lottery.  Lydie and I won that one.

Of course I already have a Boppy, which was a lifesaver for breastfeeding Ben and was packed to go to the hospital for Lydie but stayed home.  But I'm super excited about the sleep pillow.  Third pregnancy and I do not sleep well when I'm pregnant.  And now I am trying harder than ever to sleep on my left side since I want Bowie to get all the blood flow she can, and I will never again roll my eyes and think these things are not a big deal.  

The website asked that I just send them a picture of me using these items so they can publish them on their website.  I am not about to send a picture of me in my jams, spooning a pillow, but if Bowie lives, I will happily send them two hundred pictures of us using the Boppy.





Wednesday, June 17, 2015

The Memory Box

A while ago, my uncle wrote Justin and me and volunteered to make a memory box to hold all our cherished items of Lydie's.  (I don't use that word, cherished, a lot, but when you have so few tangible items to represent a life, it seems appropriate.)  Of course, I told him, of course we'd love that.

He ended up making three: one for us, one for my cousin and his wife whose son was also stillborn, and one for my aunt and uncle whose son died, suddenly and tragically, at age 11.  My aunt and uncle got the biggest one, because you know, there's more tangible items when an 11-year-old dies than when a baby dies before she's even born.

It's been sitting in our bedroom for a few weeks now, empty.  We knew we needed to take the time to move Lydie's things to it, but we knew we needed more than time.  We needed the emotional capacity to handle it.

Lydie's things are all over the house.  Her "You are my Sunshine" print sits on our mantle, overlooking her urn and her name block.  Pictures of her feet are in the frame next to a picture of Benjamin at 3 months old.  A stained glass angel with an L shines through the kitchen window.  Her handprints and footprints are framed in the living room, with pages from the book Wherever You Go, My Love Will Find You framed on the wall above.  Lydie's things will stay all over the house, reminders of our daughter everywhere... but there's also some other things to go in her memory box.

This past weekend, Justin and I took the time and emotional space to sort through Lydie's things and to place them in her memory box.  I choked up at the cremation paperwork, reading Justin's signature giving permission to cremate our girl, the words "fetal death" and "probable cord accident" and "age 0."  I looked through her ultrasound photos, tried to see if I could see her in them.  I opened the box holding the hundreds of sympathy cards and quickly placed the lid back on.  I know those cards are there for when I need a good, long cry, but my emotional capacity was not that high.  Justin held up the packet of information from the funeral home, and said, "I hope we never need this again."  He asked what we should do with it.  I glanced at my belly.

This weekend felt big.  We rounded the corner from 19 weeks to 20 weeks in this pregnancy.  Which means we rounded the corner from miscarriage to stillbirth.  I hate that I think that way, but that seems to be my reality now.

Early on in this pregnancy, I told Justin, "If I have a miscarriage, we can try again.  If it's another stillbirth, I'm done."  And here we are.

On Saturday, I got it into my head that I hadn't felt Bowie move.  Feeling her movement is still sporadic at this point (stupid anterior placenta!) but I started worrying.  And the worrying built all morning and afternoon as I got no reassurance.  I thought about breaking out the Doppler.  Instead I drank some orange juice and laid on my side.  Nothing.  I thought more about the Doppler.  I've been avoiding using it, worried about the slippery slope of becoming addicted to it, worried what I would do if I couldn't find it, worried it would cause me more anxiety than comfort.  I pictured myself in the hospital when I couldn't find the heartbeat.  Stupid weekends, when my doctor's office isn't open.

I decided it was worth the gamble.  I broke out the Doppler.  I watched as the panic subsided from Justin's face when we heard that heart beat.  I jokingly asked him if I could just lay there for the next 4 months with the Doppler on my belly.

Eventually, he went out to mow the lawn, while I began to watch YouTube videos on home Dopplers and wonder if we used it wrong.  Maybe it was the placenta we heard, not the heartbeat?

It sucks to be constantly wondering if your baby has died, inside you.

So we tried the Doppler again.  And that was definitely Bowie's heartbeat.

It was just an anxiety-ridden day.  So the following day, when stacking Lydia's books and cards and photos in the memory box, I placed the funeral home information in there with them.  For a brief moment, I told myself, I'm pretty sure the funeral home will give you the information again if you have another child that dies.  But I couldn't tempt fate.  Into the memory box it went.


It was nice to sit with my husband and sort through our daughter's things.  It's a gorgeous box made just for Lydie with love, to keep her things close to us. (Thanks Uncle Ron!)  There were tears shed, but that's no surprise.

I think I will have a love/hate relationship with that box.  I hate that we have it; I love that we have it.  Every time I walk in and out of our bedroom, I will see that box, and usually, just knowing that it holds Lydia's things will be enough.  But every once in a while, when I have the emotional capacity, I can open it up and spend some time with my daughter.

Monday, June 15, 2015

The Lydie Stone... on Glow in the Woods

Today, my husband Justin is published over at Glow in the Woods.  This site has been a haven for both Justin and me since Lydia died.  The website describes itself as, "For parents of lost babies and potential of all kinds.  In the beginning you stagger, disoriented, through this storm.
We want to be a glow through the trees, a golden refuge of log and glass.... this will be a place where us medusas can take off our hats, none minding the sight of all the snakes. Because not only can we bear the sight of each other—we crave it.  Babylost mothers and fathers, this place is yours."

Justin wrote about the "Lydie stone" he's been carrying in his pocket since he bought it for Lydia, wrapped it for her, placed it under the tree, and unwrapped it himself on Christmas Day.  I've mentioned it a few times on here, how I appreciate being able pull it out of Justin's pocket for family photos, use it to represent our girl.  How my heart aches (or melts?  Both I think) when I see Benjamin kiss it gently.  How it's a tangible way to show she's always with us.  How Justin has become really, really attached to this stone.


I don't think my husband ever considered himself a writer, but he's certainly found his voice lately.  And there are not too many grieving dads that are willing to write about their emotions and share those emotions with others.  I'm proud of him.

If you'd like to read more of Justin's writing, the Bereaved Families of Ontario has also published some (and he is not even Canadian!)  I've mentioned that we both wrote letters to Lydie, which we read at her memorial.  Mine is here, Justin's is here.

Friday, June 12, 2015

Getting over the fallacy of fairness. And kicking the shit out of option B.

A while ago, I wrote about how I was partly dreading being off work this summer.  Our summers usually consist of visits to story hour at the library and hours spent at the pool.  But being around other moms and other kids is a lot harder for me these days.

I cringe every time I see a double stroller.  I think of our Double Bob, that sits unused in our garage.  I think about how unfair it is.

The other day, I watched as a mom ladled out lunch to her eight (!!!) not particularly well-behaved children.  I counted them.  I thought maybe she was also watching a friend's kids.  But they all called her mom.  I thought of all my friends who struggle with infertility, along with loss.  I thought about my daughter.  I thought about how unfair it is.

Sometimes I feel like I function better when I'm home in my little world with Ben and Justin, with Lydie in our hearts (and on our mantle), and Bowie in my belly.  When I'm out in the world?  The unfairness smacks me across the face.  

I talk to my fellow BLM friends more than anyone else these days.  Sometimes, with other friends, old friends, the unfairness of it all haunts me a little bit more.  It's too easy to think "Why Lydie?  Why me?  Why us?"  Their lives seem so normal to me, in a way we will never be again.

The moms at the pool and the library?  I avoid eye contact; I'm not friendly.  And I certainly do not engage in small talk.  And I grab my phone to bitch to email or text my BLM friends.

So every time I see a double stroller, I have to remind myself: it's NOT fair.  It's never going to be fair.  Life's not fair.  

I no longer believe in karma.  I no longer believe everything happens for a reason.  I believe there's a lot in life that we can't control and sometimes bad things happen to good people.  I believe tragedy strikes some people, some people more than once, and leaves other unscathed.

I keep reminding myself of this quote I read on another blog recently:  "I think handling despair, working through grief and even the hiccups of day-to-day life would be much more manageable if we were not hypnotized with the fallacy that life is fair."

This guy's wife died in her early 30's.  He is a widower at my age.
That's not fair.

It's not fair that the joys of pregnancy have been taken away from me.   Now that I am feeling Bowie move a bit, every time I feel her, I breathe a sigh or relief that she is alive at this second.  And when I haven't felt her for a while, I worry that she has died.  And because feeling the movement is inconsistent at this point, I'm wondering if she has died often.  I miss the innocence of my other pregnancies.  I miss not constantly wondering if my baby is alive or dead.

It's not fair.  It's never going to be fair.
Life's not fair.

It's not fair that I lost Lydie, but it's also not fair that I know this pain.  This fear.  This anxiety.  This grief.

The other night, I had a dream that Ben died.  I've had a few of these since Lydia died, but this one was especially graphic.  In this nightmare, I left him in the swimming pool by himself, and when I returned, I saw his body floating on top.  I can't get that image out of my mind.

Someone told me recently that everyone worries about their children.  I explained, yes, but when you've had one die, when you've held your dead child, I think you may have a cause for that worry.  I think you may worry just a bit more than other parents, and I think you no longer feel that that worry is irrational. I think we've lost all invincibility, all faith in the universe, all feeling like things will work out okay in the end.

I've heard a lot about how you can let grief destroy you, or be strengthened by it.  Clearly, I want that option.  But how?

I feel like, first of all, I need to get over the fallacy that life is fair.  To let it settle, deep in my bones, that life is not fair.  That life is random and chaotic and cruel, and really beautiful.

It is not fair that Lydie's not here, that I know this grief and these fears and these anxieties... but it is my reality.  So what now?

With the losses of Beau Biden and Dave Sandberg recently, I feel like there's been a lot of talk about grief in social media.  And while my heart aches for Joe Biden and Sheryl Sandberg, I appreciate the opportunity to educate others about grief.  And I appreciate ways to think about my grief differently.

And Sheryl reminds me, about trying to lead the best life you can with the cards you've been played. 

Monday, June 8, 2015

The tale of pink eye and my second daughter

This morning, I woke up with a crusty and swollen eye.  Three weeks from turning 34, and I get my first case of pink eye.

Not exactly what I need in my life right now.

I drag Benjamin to the Minute Clinic, where the nurse practitioner, confirms, yep, that's pink eye.  She talks about how she'll prescribe eye drops to treat it and looks perplexed when I inform her that I'm allergic to penicillin.

Then I say, and I'm also pregnant.

She looks even more perplexed.  She breaks out her phone and starts googling.

This cannot be good.

She decides what to prescribe me, and then says it's "Group B," which means that it's shown no harm to pregnant animals, but has never actually been tested on pregnant women.

Awesome.

I know, I know, this is often the case.  You don't see a whole lot of pregnant women signing up for studies to see how damaging something is to their baby.

In the middle of this, she asks me if we know what we're having.

"A girl," I respond, hugging Ben, sitting on my lap, eating his Goldfish, tighter.

"Oh perfect, a boy and girl!" she responds.

And here we go.

Seven months and three days ago, Justin and I realized that the "How many children do you have?" question would always be a difficult one for us.  That sometimes, questions that seem simple are actually very complex.  That questions that seem innocent, can actually be very hurtful.

One week ago, when we found out we were having our second daughter, Justin turned to me and said, "People will think we have the perfect little family."

There's different ways to respond to this in the baby loss community.  A lot of people judge in the moment whether the person who asks the question is someone who needs to know.  Someone who they will encounter again. Someone who will be in their circle. In other words, when the grocery store clerk asks, you may just keep it simple.  When a new neighbor asks, you may tell them the whole ugly truth.  Some of those baby loss parents whisper up a prayer to their lost child.  An extra: I love you.  And I remember you.   Some of them describe those moments as a way of protecting their child.  That that stranger doesn't get to hear about him or her. 

I've had those moments.  But for me, those moments only happen when someone makes the assumption that Ben is my only child, or that I'm expecting my second child.  I let them assume.  I don't need to go there.  But I find when they directly ask, I cause myself more pain if I don't tell the truth.

Other parents say they talk about all their children, no matter how uncomfortable it makes the other person.

So I took a deep breath and told this nurse practitioner.  "Two girls," I responded.  "Our daughter was stillborn... so this is a very high-risk pregnancy.  And I need to ensure that I am not taking anything that could hurt my baby."  Then I added, "One boy, and two girls."

She looked scared.  She asked if I could call my OB.
Who I know, of course, doesn't work until Monday afternoon.
I called her office anyway.
And talked to the reception staff.  When they asked if I'd like to leave a message, I told them no, I'd like them to ask a different doctor about this medication.  They put me on hold for all of 30 seconds, and came back to tell me that medication is "absolutely fine."

I'm good, right?
Except I can't help thinking of how when I was pregnant with Lydie, my doctor suggested that I take melatonin to help me sleep.

And how after she died, and I delved deep into my research, I read that babies in danger of cord accidents often can't handle the melatonin that their mothers' bodies create during sleep.  Dr. Collins in Louisiana seemed incredulous when I told him my doctor suggested I take additional melatonin.

So, part of me wants to ask: what happens if pink eye goes untreated?

That's the thing about pregnancy after loss.  I no longer believe something because it's stated by a doctor.  Pregnancy after loss is a "prove it" pregnancy.  This medication is safe?  Prove it.

It's still sinking in that we're having our second daughter.  One boy, two girls.  I can't believe that we have to come up with another girl's name after finding our perfect girl's name.

Yesterday, I went to the pool on my own while Ben napped and Justin stayed home.  (Justin teased me about needing a break.  Taking care of Ben full-time right now, I told him: "You need a break from your job on the weekends, don't you?"  Thankyouverymuch.)  I wanted to be alone.  I wanted to relax.  The pool was crazy busy and I finally found a chair and settled in.  And then noticed that the mom next to me was named Heather.  And then she called out to her daughter, "Over here, Lydia!"  I wanted to vomit.  Or scream.

Instead I just stared.   I stared at this woman named Heather and her daughter Lydia and wondered if that was what it was supposed to look like.

I'm telling you, you can't predict the triggers.

So as far as names go, we've got some major brainstorming to do for Bowie.   We are starting to talk about it, which seems like a huge step.  It's a really hard line to dance: taking it day-to-day while recognizing that at the end of this pregnancy, we may just get to take Bowie home.  Not in an urn.

But at 19 weeks, I realize this babe needs a name, one way or the other.  Even if she dies, she still needs a name.

That fear is stronger than ever after finding out Bowie is a girl.  I couldn't quite figure out why, until my friend Molly nailed it.   She told me that it's totally normal to be more scared-- that I don't want to lose that dream twice since I feel so lucky to have a shot at another chance.  Aha.  Thank you Molly.  I need to stop paying for therapy and just continue talking with all my amazing BLM friends.  They always know what to say and I don't have to do any kind of explaining with them.  I'm really tired of explaining myself.

I don't think people know how to respond to our pregnancy news.  People say things like "God will look out for this baby" and I'm dumbfounded.  Do they realize what they are implying?  That God favors one of my children over the other, that God didn't look out for Lydie, but he'll look out for Bowie?  Let's just leave God out of this, please.  I get a lot of "Congratulations, that's great news."  And I tend to nod and reply, "It's very difficult.  We really miss Lydie."  I feel I have to explain myself, again and again and again.  I feel like I have to remind people of the complexities of this pregnancy, if they don't acknowledge it themselves.

We still haven't talked about it with Ben.  But the other night, he was sitting on my lap, and elbowed me roughly.  "Benjamin! You have to be gentle with Mama right now!" I told him.  He patted my belly.  And then said, "I sorry, baby.  I sorry Bo-Bo."

Ho-ly shit.

Last night, I felt Bowie kick.  I think I've felt her a few times, inconsistently, over the past few weeks.  But with this goddamn anterior placenta, it felt different than it did with Benjamin or Lydia.  Last night though, last night was definitely Bowie.  I grabbed Justin's hand and put it on my belly, and he felt our second daughter kick for the first time.

Those moments?  I'll never take them for granted again.

She was alive as of last night.
 

Wednesday, June 3, 2015

Well, that was a bust.

Last night, a friend of mine from support group hosted a little get-together at her home.  She also had a medium there.

When she invited us to come over to either meet with the medium or just hang out, I didn't think twice about the medium.  Mostly, it freaked me out.  And what if he didn't even mention Lydie?

Then she told us how he told her there was a young boy with her mom.   And yes, her son died.  And her mom died.

But I still wasn't considering it when I went last night.

And then all these women described their short meetings with him as amazing.  They came up from the meetings in the basement in tears.  One explained how he talked about things that only her mom, who is no longer living, would know.

On a whim, I thought "Why the hell not?"  I didn't want to regret it later.  I had never given much thought to whether I believe in mediums.  But if I had a chance to connect with Lydie, how could I pass it by? 

Welp, let's just say I should have passed it by.

He started out talking about a female.  Your mom, he asked?  No, I answered. Not my mom.  Must be a grandmother, he continued.  Nope, not one of my grandmothers, I responded.  Whoever she is, she's very organized, he said.

I stared at him with a blank look.  Organized?

It didn't get a whole lot better from there.  He talked about one man who was very confused - my Opa, who had Alzheimers?  Perhaps. I'm left thinking, he better not be confused in heaven.

Then, a family member who died from cancer?  Nope.  Not one.  I have a lot of family members who have died too soon, but none from cancer.

I asked him if it would be helpful to know who I was hoping to connect with. I didn't want to lead him too much but I also couldn't walk out of there without a mention of her.  I told him my daughter.  He concentrated for a moment then said he wasn't connecting with her.  Was she 5 or 6 when she died?, he asked.  No, I said, stillborn.  Oh.

It doesn't mean she's not there, he tells me.
I know that, I respond.

I don't know what I believe in.  But I know I'm not going to let this man influence it.

The good news?  He seemed genuinely sorry, said sometimes the spirits don't show up for him, said he couldn't let me pay him.

And I certainly did not insist on it.

It's a....

Girl.

And she looks healthy.

(Except due to her position, we couldn't get a good view of her heart so that leaves me a little unsettled.)

When the sonographer asked, "Are you ready to know the gender?" I replied, "Oh my God, it's a girl, isn't it?"  I could tell.  She said yes.  Then I exclaimed, "Holy shit!" and I cried.  She passed me the tissues.

It wasn't what I was expecting.  I had prepared myself so much for Bowie to be a boy, that I hadn't prepared myself for Bowie being a girl.

It's been a few days, and it's still sinking in.

When I was pregnant with Benjamin, and we found out that he was a boy, Justin made that point that when you find out the gender, either way, there's a bit of a letdown.  You have the dreams, the visions, of both a boy and a girl until that point, and you have to let one go.  And you get to plan for the other vision.

With Lydie, I didn't feel much of that letdown.  I wanted a daughter so very badly.  I remember saying, "Well, I'm a bit sad for Ben that it's not a boy, but I'm so excited for me, that it's a girl." One of each.  Perfect.  Or to quote the random woman in the public bathroom, "Done and done."

This time?  This time, I recognize that the only emotion that can be pure for me these days is the sadness.  Well that is not true.  The anger is pretty pure too.  And the jealousy.

But the good emotions?  The joy?  The excitement?
There's not pure.
They are laced with sorrow, laced with fear.  

The moment was bittersweet.

It didn't help that the sonographer said, "I guess God wanted you to have a daughter."  Now, I'm not someone who believes that God played a role in Lydie's death.  As a priest told a friend of mine, "God's not in the business of taking babies."  I wanted to correct her.  We do have a daughter, but we hope to have a living one.  That started the worry that people may view Bowie even more as a "replacement child."  A second girl, within the one year mark of her sister's stillbirth.

My therapist is always reminding me not to worry about what other people think. And honestly, I haven't worried much about that since I was a teenager.  But I do worry what other people think about my children.  I worry what they think about Lydie.

So, just to be clear, this is our second daughter.  And our first daughter will always be deeply loved and missed. Children are not replaceable. 

I'm grateful for another opportunity to raise a daughter.

I'm scared this daughter will die too.

I just want this baby, this little girl, to come out screaming.

Monday, June 1, 2015

Ramblings from a Broken-Hearted Father

In the past month or two, Justin seems to be finding his voice.  First, he wrote a wrote a piece about the red heart "Lydie stone" that he carries in his pocket.  He submitted it to Glow in the Woods, and guess what? You can look for it there in a couple weeks (don't worry, I'll remind you.  Proud wife here.) 

And then he participated in a daily grief photography "healing journey" on Instagram.  It was geared towards mothers, and I'm so glad that my husband had no qualms about participating.  He attracted some attention with his photos and his words and made some connections with a few grieving dads and a lot of grieving moms (I kept telling him to remind them he's happily married, thankyouverymuch).

In some ways, it's been hard on me.  He's a a different place in his grief than I am, and sometimes those ramblings take me back -- take me back to a place I don't particularly want to be.  But mostly, I'm glad he's articulating his thoughts and feelings in a way that most men either do not or are not able to.

I thought I'd share his photos and his ramblings here.

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1-Precious

I can't say that precious is a word that gets a lot of play in my vocabulary, but is certainly one of the many ways to describe my daughter Lydia and the short time we had with her.  Feeling the weight of her tiny body against my chest is a precious moment that I fight to keep and remember as it is one of the few physical memories I have with her.  







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2-Grateful

At the risk of sounding well, ungrateful, I have to admit this one was difficult. Being only a handful of months out from Lydie's death, it is hard not to experience something good and to not think that it would be great if only Lydie were here too. It seems that bittersweet is the top end of the scale.  Not that I don't have plenty to be grateful for, first and foremost my amazing wife @hjohnstonwelliver and our 2yo son Ben who I am crazy about.  But the truth is, I was grateful for them before, and my daughter didn't have to die for me to realize this.  I struggle with the concept that our loss creates more love, as if it didn't exist. This leads me down the irrational guilt-laden path of "if only I had loved them more, she would be here." But to say my outlook hasn't changed would be flat out denial. I like the idea that the loss acts as a prism, reflecting the colors that already exist and any change is from the new perspective and not from what was lacking before. I can say without a doubt that I am grateful for Lydie and the time we had with her - all 34 weeks ( the chalkboard never did get updated) and what I wouldn't give for another 34 weeks, hell, 34 seconds if I could find a way. I am grateful I am her father, as painful and confusing as it is.  Even in my darkest moments, as tempting as it is, I couldn't wish this away.  I would avoid the soul crushing pain, but would miss out on Lydie.  She was her and will continue to be.



 
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3-My Heart

Just before Christmas, I ran around picking up small gifts for my wife's family.  I brought with me a list of gift ideas and included Lydia's name on my list. I wanted my daughter to have a gift under the tree, mixed among those of her brother's and cousins. But my list had her name only followed by a dash and blank space.  It was hard to think of gifts for her.  All of the traditional newborn gifts were painful to look at or think about. I found this heart-shaped stone and at first wasn't sure - practicality ruining the moment.  What would I do with this? I let instinct win out, and it made its way to the tree on Christmas morning. The last gift opened by the same person who wrapped it. Still unsure on this stone's purpose, I stuck it in my pocket for safe-keeping.  It is has been there for 129 days.  The first thing I grab for in the morning and the last thing I touch before I turn off the light. Its shape and weight awkward at first, now it just seems to be a part of me.  The fear of forgetting to slip it in my pocket one morning is real, played out with bursts of anxiety throughout the day as I frantically search my pocket for her stone. I know that forgetting the stone wouldn't really mean anything- rationally- and that day may come eventually. But for now, tracking this stone has become my job. Keeping my daughter's gift safe one day at a time.  


 
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4-Inspiration
Often, I find myself wanting to do something-to create something, to write, to (poorly) build something. And frequently, that something may just be to capture the swirling thoughts in my head, the ones that I try to put away even though they never comply, and attempt to understand them just a little. To find a starting point for these things, to be inspired, I typically turn to a resource that may seem a bit odd–Google. At first, out of frustration, I typed in the most pointed phrases that I could think of (see above) only to expect the message: “Your search did not match any documents, because that is really f-ed up.” But to my surprise, the search did return some documents. Taking the time to sort out the grossly over-simplified, such as wikiHow’s “How to Survive the Death of Your Child” (with pictures!), I found some very helpful gems tucked away in the corners of the internet. I devoured the blogs of other baby-loss parents, such as @chickenboo42 that writes about her son Luke and @bythebrooke88 that blogs about her daughter Eliza. Despite being written by moms, I found myself nodding my head often, discovering a new perspective. Even the emotions and experiences that are so specific to a mother I found helpful. I mean, I have a wife that is grieving, that I desperately want to help, but have no clue where to begin. And there are dads out there too, such as @jackatrandom that writes about his daughter Margot and the concept of the falling down the rabbit-hole as you click-and-read, click-and-read your way through anything that you can find on baby-loss. In addition, there are several others from the sites #GlowintheWoods and #StillStandingMagazine. To connect with these parents, even silently, can be an inspiration. To know that there are others that can understand just a piece of my now and forever chaotic life, allows me to catch my breath just a bit easier. And with a deep breath, I am able to capture just one of those swirling thoughts in my head and transform it into a picture or a word, and to know that when it inevitability reappears, I will be able to understand it just a little bit more than the last time.

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5-Love
On December 12th, the day we were to meet Lydie for the first time and welcome her to this world, instead of walking into the hospital, we walked into a funeral home.  There, gathered together with family and friends, we held a memorial service for our daughter.  A small table was placed in the back of the room next to a miniature Christmas tree that sat on the ground.  A few items were scattered among the table: pictures of hands and feet, copies of our Lydie playlist, bookmarks made by her Auntie @ellejai02, and a small pink memory box with hand-painted dragonflies.  At the front of the room, nearly hidden behind all of the flowers, stood a podium where two sheets of paper rested - a letter from her mother and a letter from her father.  Below is an excerpt from my letter:
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I am sorry that I don’t get to show you how much I love your mother, that you don’t get the chance to say “Eww, gross” when I kiss her goodbye, and that you didn’t get to witness our frustration with each other and our ultimate reconciliation.  I am sorry that, along with your mother, we didn’t get to show you that love, real love, can be messy, and complicated, and hard work, but is worth every ounce of our energy. 
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And that is where we find ourselves today – wading in the messy, frustrated by the complicated, and weary from the hard work.  Energy is scarce these days, but we scrape together what we have for our children and for each other, knowing that love is worth every ounce we have.
Photo Note: Lydie is here, sharing this kiss with her family. She is the gleam of sunlight from Heather’s necklace that carries her initial “L”

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6-Balance

Shortly after Lydia’s memorial, Heather and I found ourselves a bit lost–even more so than we had been the month prior. Her memorial had been a focal point, a marker out in the future where we could direct what little energy we had, and all of our love, towards our daughter.  With that marker past, we struggled to find what exactly came next. At the last minute, we decided to attend our local Compassionate Friends Worldwide Candle Lighting ceremony.  With a warm pan of macaroni and a single photo of us holding Lydie’s hand, we walked into the meeting hall.  Heather gathered some food for Ben, as I stood in line to have our photo scanned for their slideshow.  After it was finished, the guy scanning the photos looked up at me and innocently asked “Is that it?” Yes, I confirmed – that is it.  We picked at our food while Ben smiled at strangers.  There were readings and songs, and then the candle lighting. Each table was released one by one to walk up and light their candles, briefly speaking the name of their loved into the microphone.  I watched as an elderly couple shuffled toward the microphone, arm in arm, candles in hand, their slower pace breaking the rhythm that had naturally formed from the more youthful families. And in that skipped beat, without warning, I found myself drowning in my grief. Even though the thought had been there ever since I knew my daughter had died, this was the first time I realized that I have a long life left to live. A long life to live without my daughter. Today is 6 months since Lydia was stillborn. Six long months, among a lifetime of months, without my child. Heather and I have worked hard to capture the past and the short time that we spent with Lydie. Photos, books, and little memories from the pregnancy.  And then, while waiting my turn to speak her name into the microphone, the weight of the future comes crashing down.  It is difficult to find balance between these two, the past and the future, one constantly pulling on the other. Especially today, on her one-half year anniversary, her one-half year birthday. Lydie-we love you so very much. 

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7-Hope

More from my letter to Lydie:
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Over these past 36 days, as I am forced to envision a life without you here with us, Lydia, I have searched for many things.  Words, only to be unable to speak them.  Answers, only to find none.  Hope, only to be left empty.  They are not easy to find and I understand that they may never be. While the kind words of family, friends, and even strangers, help to dull the pain, there will never be enough to fill the hole permanently left in our hearts.  As for answers, there will never be any to satisfy me as to why you are not here and never will be.  And hope – I not even sure I know what that looks like yet.  But what I have realized is that these aren’t the things I am really searching for – what I am really searching for is you, my daughter.  And when I allow myself, I can find that you are everywhere.  You are in the beauty of the sunset, the wind that rustles my hair, and the very air that I breathe.  You are embedded in my every thought and my every dream.  And perhaps that, I have to believe, is hope.  This I will hang on to.  That is my promise to you. 
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I can’t say that at 182 days, I have a significantly better grasp on hope, but I still look for her each and every day, wherever I may allow myself to find her.  A promise that I continue to carry.

 
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8-Music

Out of all the prompts, I immediately identified this one as the easiest for me.  I think I could post 31 days just on music.  For Lydia’s memorial, Heather made several copies of our Lydie playlist for others to take with them and I read the lyrics from a song from one of our favorite bands.  For several months after, that playlist was the only music I would listen to – over and over again.  Anything else just seemed like noise.  More recently, I have begun to let other songs make their way into the queue and have even turned on the radio from time to time.  However, each time I place my ear buds or buckle my seat beat, it is Lydie’s playlist that I reach for.  With Pandora and iTunes radio, it is easy to keep the theme the same, and by doing so I have discovered new songs to obsess over as I wear out the repeat button.   Through my ritual, I have collected just enough new songs that I believe I can create a Lydie playlist Volume 2.  Below is the chorus from my latest obsession from the #MilkCartonKids :

“If I had one more try I could fly with her, hide away the years.  If I had one more life I could die with her, a whisper in her ear.”
 
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9-Self Care

Some mornings, when I can convince myself to get out of bed, I go for a run.  It was painful at first, energy-deprived after Lydie’s death combined with the Midwest winter didn’t make it easy.  And while collecting the energy can still be a challenge, the spring weather is starting to turn allowing me to build up some consistency within my routine.  So along with our dog Ozzie, I grab my headphones and take to the road.  It is on these mornings where I find the previously mentioned songs for my expanding Lydie playlist. It is an extreme departure from the adrenaline-producing music that I would crank up for swim meets in high school or boat races with my college crew team, but it gets the (grief) job done. I am sure that I must be quite the sight for the early morning commuters, a teary-eyed runner either stopping to take a picture or staring into the distant sunrise.  Ozzie waits patiently for me to pick the pace back up and continue pushing forward.  There is no doubt that this push forward is work – both physically and mentally – as my legs and lungs and mind burn.  But it allows me to capture what I can,
 to carve out a small piece of my day to be with my thoughts, as they swirl around in my head. 

 
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10-Mother

There is an article on stillstandingmagazine written by Adam Cahill, a bereaved father, on his perspective of Mother’s Day.  In it, he writes “I know for a fact that I am going to fail. It’s not a question. It’s a foregone conclusion.”  He continues on to explain that for once he knows exactly what his wife wants for Mother’s Day – and it is something that he cannot give her.  I came across this article several months ago, long before Mother’s Day, and saved it to my favorites as Adam’s perspective seem to cut right to the core, his honesty so brutal that it had to be true.  I will fail. It is hard to resist the urge to push this thought down, to search and plan and will the creativity to inspire. But I keep circling back to Adam’s truth, and the helplessness that follows.  I have flowers and a card and will work to make this day easier for Heather, but the undeniable fact is that this will be a very difficult day for her.  A day full of maternal emotions that I can’t really understand.  But I will tell my wife hjohnstonwelliver, that today and every day I am in awe of the wife and mother she is, the strength and love that she carries for our family, and that her son, daughter and husband are so proud to call her Mama.

 
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11-Creating

I wouldn’t describe myself as handy, not naturally anyway.  But I will tackle most tasks, Googling advice, watching YouTube videos beforehand, and even checking books out from the library for the larger projects.  I have room for improvement on form, but typically I am able to deliver on the function even though not all projects follow a smooth course.  When building a shelf for our shed, out of frustration that things weren’t going to plan and that my measurements were just slightly off, I nearly announced defeat to Heather as I told her that “I am not sure why I take on these tasks. I am an accountant, not a carpenter.”  But I finally did place that shelf, hiding what imperfections I could, and it is still standing today, thankyouverymuch.  So when I came across a website that detailed the steps to create a concrete letter, I thought to myself that even an accountant could create this and it would look nice in the garden that we have begun to create for Lydie.  And this time, I know exactly why I am taking on this task. While I would much rather be cursing the individual who wrote the instructions for the baby swing, I still feel the need to do something for her.  This oversized initial will stare back at me every time I take a pass with the mower, or when I throw open the sliding door to let Ozzie out in the yard.  It may be covered with cracks and monochrome, but it will be a reminder that there are still things that I can do specifically for her.  That I can still provide, even when those items may be the smallest of things.

 
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12-Support

Nearly four years ago, I stood waiting next to small pond encircled by family and friends under a gazebo that shaded me from the warm July sun. About 100 feet away, stepping out from behind a corner, Heather locked arms with her father as everyone stood to commence the climax of a weekend that we had been planning for 15 months. Our Reverend welcomed our guests and then continued on with a short, but intimate ceremony in which he summarize the culmination our 3-1/2 years in one simple sentence: “Today’s celebration is the outward sign of a sacred and inward commitment, created by loving purpose to two individuals who have decided to walk the path of life together.” Those two individuals, staring at each other with giddy smiles, would have never guessed the path that life would lay before them 3 years later. No amount of planning could prepare us for the blind curve in the road, hiding the crack in the earth that would swallow us whole. I am often very frustrated that the rest our marriage, the rest of our lives, will be defined by this pain and confusion. It is denial to say that it won’t be, there is just no separating this pain from our lives together. It cannot be undone. But it is reckless to say that our marriage is exclusive to our pain and confusion. Even before we left the hospital, Heather knew immediately that she needed to talk to someone, that she needed support. As soon as we got home, she was blogging, on the phone to multiple counselors, making connections and reaching out for help. I was clueless to what I needed and often still am, but no different than that warm July day nearly four years ago, Heather took me by the hand and led me down the path that was before us. Her support, directly and indirectly, has been the single greatest source of healing over these past 6 months. As so while the pain and confusion may always exist, our decision to walk this path together will shine the brightest in our relationship. Thank you @hjohnstonwelliver for reminding me of that every day. I love you very much. 

 
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13-Courage

 “Are you and your wife planning on having another?” she asks. I feel blind-sided by the question from my boss. At first, our conversation led to the holiday weekend–it is Mother’s Day–and if I am prepared. I tell her that I have flowers and a card, but admit that I have not made any special plans and insert the disclaimer that this weekend will be difficult for Heather. She advises me to make it a happy occasion. With a lump in my throat, I quietly inform her that happy is an impossible goal, which leads her to the question that makes me stumble. I am not sure why I hesitate, scrambling for the response that I have rehearsed in private. This question, as well as several others that so often fall under small talk, are now so deeply personal. My boss knows about Lydia. She was in the room when I received the phone call from Heather, although she had no idea that she just witnessed the death of a man right before her eyes. With a deep breath, I collect the words to tell her that the question is now very complicated and emotional, and we are painfully aware that a pregnancy does not equal a (living) child. Perhaps out of ideas, she offers the platitude that at least we are lucky to have such a wonderful son. I can feel myself physically shrinking with each of her comments, my confidence waning.  As a tiny speck on the ground, I recite in monotone that our son is in fact wonderful and we love him, but we still miss our daughter very much. The conversation replays in my head as I coach myself on critical points in the dialogue, picking apart words and my tone. In that moment, our roles were reversed and I am the authority.  But I felt as if I have missed an opportunity, the words spoken, but not communicated. It can be difficult not to compare courage to the phone booth metamorphosis of a caped hero, defending our new family dynamic in a single bound. But sometimes I have to remind myself that courage is just standing within the moment, within the weight of grief, saying even the minimum of words when all you want to do is to retreat to the safety of a closed office door. #mayweallheal #stillbornstillloved


 
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14-Wisdom

Over the last 6 months, Heather and I have research stillbirths extensively.  We poured over stacks of books and medical essays, flagged several websites to our favorites, exchanged emails with research foundations, participated in a clinical research trial, even held a conference call and exchanged several emails with the one (yes, only ONE) doctor researching umbilical cord accidents in the US. All this paired with the handful of meetings we have had with our local MFMs to ask questions about both the past and the future. Then there are the Cleveland.com and Washington Post articles written by Lydie’s Auntie ellejai02 in hopes of raising stillbirth awareness as well as the information gained and shared in community of bereaved parents that we have sought out. We want to be, by nature, informed. And I have come to realize that our typical exhaustive data collection process, usually applied towards big purchases and financial or life decisions, has little sway to our specific heart-breaking and desperate situation. It is a teacup amid this ocean of grief. But I can’t say that I wish I could squash my urge to research even if I thought that was possible, that statement would be untrue.  A necessary process for me until every last straw is grasped. But I am learning that this knowledge has sharp edges–a pang of guilt with each new data point that I wish existed while Lydie’s heart was still beating, with emptiness and no guarantee to avoid future heartache on the reverse side. I suppose the best that I can hope for from this information is validation of the statements that we have heard from family and friends, but I have locked out as a form of self-punishment – You did the best you could. You are doing the best that you can. Even as I type them they seem so dismissive to me. I am not ready to accept these words as my own, even though I want them to be true. I am stuck in this pendulum-wanting to know every little detail about my daughter, while swinging back to the hopelessness that this new information will not bring her back.


 
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15-Soul

Shortly after Lydia’s death, on my commute home I would rotate between listening to select music or nothing at all. The silence allowing me to hear the rolling of the tires against the ground, providing proof that I was still, in fact, physically connected to this earth. When I chose music, I limited the selection to our favorite band, the #avettbrothers I stopped on a live version of a song that doesn’t get frequent play, but one I had heard several times before. The solitude of a single musician quietly strumming his guitar demanded the audience to fall into a hush. I joined them as the melody flowed into the first and second stanza, the familiar words vibrating in my ears, but somehow hearing them for the first time. And then in the middle of the song, while boxed in on every side and idling two feet above the earth, I found my one little girl, my Lydie:

Souls like the wheels, turning/ taking us with wind at our heels, burning/making us decide on what we're giving/change this way of living-
One little song/give me strength to the leave the sad and the wrong/buried safely in the past where I've been living/alive but unforgiving-
One little girl/bring me light from where I thought it was dark/be the spark that has a chance to light a candle/with love that I can handle-
Souls like the wings/spreading out away from bad memories/make us capable of taking off and landing/alive with understanding-

I have carried this tune with me since that day, reading the words aloud at Lydia’s memorial.  While writing this post, I searched the Avetts hashtag and clicked the most recent post. Just 10 minutes prior, this hashtag was attached to a beautiful picture of a hiking trail in NC with the final verse of this song in the caption. I often speculate on what Lydie’s voice would sound like. How, lying in bed late at night, her words would float on the breeze to find my waiting and wanting ear, instantly and unmistakably identifying the sweet tone that is so uniquely her. I painfully admit that this can never be, but I am discovering that when I am able to silence my mind to a hush, I can hear her in the quietest of places.

 
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16-Book

In line with our extensive stillbirth research, Heather and I have read, and continue to read, several books and blogs specific to grief and the death of a child. In fact, I find it difficult to read anything else. Occasionally, I pull from the top of the growing stack of ESPN magazines, but typically my mind and fingers drift towards the glow of my phone and the journals of heartbreak, dark humor, and yearning that occupies so much of my time. My bedtime routine consists of the same, although it can be frustrating to find printed versions of these texts. Would you believe that our local library doesn’t have a “My baby died” section? Heather has been very diligent in organizing a lending library for our support group, collecting donations and marking their covers with the names of their loved ones. I continue to lag behind Heather’s pace and have yet to read through all of them, but now know where I can find them. If I had to pick one particular book that has stayed with me, I would say C.S. Lewis’s “A Grief Observed” which, incidentally, isn’t about child-loss, but is written about the specific heartbreak on the death of his spouse. Originally meant for his eyes only, his journals were pieced together and published shorty after the death of his wife. Performing a quick fact-check, I was surprised to discover from Wikipedia (maybe not the best source) that many early readers believed that it may have been a work of fiction. A product of C.S. Lewis’s creative imagination, akin to a closet door with lions and witches. I find this initial observation humorous, as I can still remember the feeling as if C.S. Lewis had traveled through time to rip the emotions right out of my gut and splash them on the page in front of me. So raw and poetic that even the most creative mind couldn’t be tricked into this depth of despair. To ask me to pick a specific line from the book would be to bracket his first and last word within quotation marks. But there is one line that have read over and over, flipping to the exact page every time I reach for the book–“Her absence is like the sky, spread over everything.”

 
 
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17-Fragrance

While reading the Avett’s lyrics from behind the podium, baskets full of candles were passed among our family and friends before asking for a moment of silence. Heather and I stood with our shoulders touching and lit a large candle that stood next to Lydie’s urn. On a careful pivot, we cupped our hands around our smaller candles, protecting the flame as we both walked towards our parents. As grown children standing in front of our own mothers, sharing wet and tired eyes, we passed Lydie’s light, starting a slow and orchestrated domino from the front to the back of the room. Sitting silently, we stared into the fire that danced in front of us before the soft voice and tiny ukulele of Israel (Iz) Kamakawiwo’ole’s “Somewhere Over the Rainbow” floated out of the overhead speakers to conclude Lydia’s memorial service. Afterwards, sitting in the back patio of a busy restaurant, surrounded by family and friends, I realized that in the rush to clean up at the funeral home or perhaps in the fog of the day,  I had lost track of the candle that I had packed to take to the restaurant. I wanted to continue carrying Lydie’s light even though the venue had changed. Luckily, overhearing my disappointment, Heather’s father located the candle tuck away in the back of his car. I promptly lit it, the flame dancing as it had in my hands just an hour before. We continue this tradition each night as we sit down to dinner.  Her candle placed in my birthday gift from Heather, a glass bowl stamped with her (big) little feet surrounded by the words that we read to her in the hospital. With the click of the lighter, we each tell Lydie (even Ben when prompted) how much we love and miss her. Her light burning bright as we share the stories from our days and talk about our tomorrows, until the last plate is washed and the table is wiped down. Before rushing upstairs for bath time, I lean over and quietly tell her again that I love her, blowing out her candle and smelling the sweet smoke that drifts into the air.
 
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18-Family
Standing in my in-laws kitchen, with my eyes and mind buried as I cycle through my routine of grief blogs and websites, I hear the question spoken from my 4-year old nephew inbetween bites of his midday snack –“Lydie is in heaven?” My eyes dart up on the mention of her name, a reflex that has developed over the last 6 months, however, I am slow to comprehend the remainder of the sentence. My nephew’s mother, Lydie’s Auntie ellejai02, answers her son “Yes, that is right. Lydie is in heaven.” On confirmation of his assumption, he sincerely states that he wants to go to heaven. With a uncoordinated, but snychonized heavy sigh from the adults in the room, my sister-in-law explains to him that once you go to heaven, you can’t come back. In a defeated tone that demonstrates understanding, but effectively communicates his level of dissatisfaction, my nephew reveals the root of his line of questioning as he says “But I want to see Lydie.” I often only think of Lydia as my daughter, easily overlooking that her connections run so much deeper than the child of her mother and I. She is a little sister, a grandaughter, a neice and a cousin. Not only the empty seat  to match our hearts at our family table, but also missed moments of tractor rides, personal tennis or piano lessons from grandparents, as well as late night sessions laughing over the stories of crazy aunts and uncles. I have, however, let my mind reguarly drift to the frustration of the complicated and confusing sibling relationship for Benjamin. Fuming over the fact that I can’t carry this weight for him and how I will attempt to answer his inevitable questions that truly have no answer. I often tell myself to slow down, to stay in this moment, in this day. But then a simple question without a simple answer is rasied by his slightly elder cousin, and I wonder how much of the conversation Ben understands sitting across the table munching on his crackers. How we have the chance to define our family while not having the choice all at the same time.
 
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19-Comfort
My office is an odd shape. A small rectangle of sorts, indented to apease the support beam hiding behind the wall right next to my door. The fact that I have an oversized desk that seems to have no other place to go doesn’t help with the ineffective use of space. Tucked behind the support beam sits a chair with no discernible purpose other than to take up space. Feeling like it needs some sort of job, I have come accustomed to throwing my bag on the chair as a resting place until it is time to gather up my belongings and turn out the light for the day. However, like a savvy professional, this chair has silently leverage it’s location, once thought of as a weakness, into it’s strength. Hidden in the back corner of this oddly shaped room and out of sight from the doorway window, this chair quietly and without judgement holds up a man as he desparetly grapples with the slippery landscape created from the unannouced tidal wave of emotions that come on so abruptly. Triggered by an article, blog post, picture, innocent comment or simply the exact time of day - I spring to close my door and seek out this forgotten piece of furniture. Coworkers dutifully discuss expense reports and budget forecasts, unaware of the devastation that sits veiled behind a thin layer of drywall a mere three feet from their current location. I sob through clentched teeth as the images, some past and some future, crash against my mind, all of them out of reach. With the wave cresting and drying my eyes, I slowly crawl back to the chair paried with my desk that was designed with the combined executive purpose of posture and comfort. However, it is the hidden chair that earns my attention, always keeping the path open and free of any obstacles should I be called away from this world in a moment’s notice. A place that can provide some shelter to ride out these storms.

 
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20-Reflection

I still struggle with the basic question of “How are you?” and specifically with my reply. It is not for lack of practice as it is a common greeting that occurs multiple times a day. I have created a short list of responses–ok, good, fine–recited without inflection. I am conscience to never use the descriptors of great, wonderful, or couldn’t be better. Not that I naturally pull from these upbeat adjectives, but they no longer exist in my vocabulary. I don’t want to imply that I walk around all day with an angry or depressed front, spitting or rejected as others tell me to have a great day–although, to be honest, there are those moments. But there are also moments of levity too, where I am not completely in my own head, where I can focus on the outside world for a minute, sharing a laugh with a coworker or friend. At first, these lighter moments were followed by a rush of guilt, stunned that I allowed myself to have a self-indulgent moment. Shame on me. There is this unquenchable urge to be true to my daughter at the smallest level of detail, even something as simple as casually admitting a content state is betrayal. Staring at the photo above, I trace the smooth curves of the hearts to their one and only point and notice that these two inverted shapes share a common reference. With one slightly blurry compared to the other, they are still very much the same, connected while being opposite. I find that I now live at the exact point where these two images meet, so exact that it can be hard to separate one from the other. Happy and sad, attentive and preoccupied, hopeful and fearful -existing all at once, indistinguishable. There is still the guilt that follows those moments of “normal” life, but I am becoming conditioned to the fact that they now reside together, working to recognize this connection. When offering the reply that I am doing ok, I slide my hand into my pocket and squeeze Lydie’s stone, silently telling her that I love and miss her, and that I would be much much better if she were here with us.

 
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21-Symbolism

Sitting in the rocker reading stories with Ben, Heather’s eyes drift towards the window finding the full moon paired with a single star shining brightly in the dark sky. “Look Ben, there is Lydie” she says. We stare and comment on how bright it is, asking ourselves where all of the other stars are. Even as story time continues, all three of us take our turns to revisit that star, its brilliance pulling us in. This, of course, leads me to google Twinkle, Twinkle Little Star finding that this little song can trace its folklore roots back the English poet Jane Taylor, as she penned the poem titled “The Star.” The first stanza attracting all of the fame, it is the third verse that guides my thoughts:
-Then the traveller in the dark/Thanks you for your tiny spark/He could not see which way to go/ If you did not twinkle so.-
After reading this unknown verse, a subtle shift occurs where nothing really changes, but I am suddenly surrounded by stars-ornaments on Lydie’s tree, the lyrics on Lydie’s playlist, every article and blog entry all carry a shining reference. But then, I retract. I doubt. Perhaps the connections are not really there, perhaps I wanted it too much, perhaps this is just a self-fulfilling prophecy. A string of consecutive coincidences where my crazy, desperate, grief-stricken mind has assigned meaning where there is none. I want to believe this is real, but I find myself in a place where my practicality, typically a strength, has become destructive. I try to push through these thoughts, that maybe this symbol, my Lydie star, is what I need and I shouldn’t be afraid to ask for it–even if I am only asking myself. I need to know that a tiny spark in the sky can give me a compass, an orientation. I need to be able to look up and feel her shining down on me in this dark place. As I return to Jane Taylor’s poem, I pause on the third verse again and recognize both myself and my daughter. A traveler lost in the darkness of grief, desperately wanting a sign of which way to go-and then a tiny spark and a glimmer of hope. My Lydie, my girl. My little star. Twinkle, twinkle my little star.

 
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22-Time

I begin to type this at 12:14pm on a Thursday. At this exact time, 28 weeks ago, I first laid eyes on my lovely daughter, holding her and telling her, too many times to count, that I love her and how sorry I am. There exists a collection of numbers that, when arranged in a particular order, hold a significance that cannot be diminished. 11/5/2014-The day that I learned my daughter’s heart had stop beating. 11/6/2014-The day that I say hello and goodbye in nearly the same breath. 12/12/2014-The day that we were to hear her cry for the first time, but instead joined in the sound of the tears from our close family and friends. One week after Lydia was stillborn, sitting numbly on the couch; Heather found a candle just ahead of 12:14pm, lighting it with the cue provided by the minute hand of our clock. In the following weeks, we would trade text messages in the moments before, reminding each other of the time. Setting an alarm on my phone, I would hold it while counting down the seconds before feeling the vibration in my hand. However, a strange thing happens with time-it just doesn’t stop. And neither did the unforgiving 12:14pm’s and Thursdays of each week, nor did everyday life’s demands and responsibilities. It started when we were forced to guess at the number of weeks that had passed, and then without permission in somehow turned into a measure of months. I have recently been startled by my alarm, caught off guard by the sound of the soft tones emanating from my pocket or by the phone dancing on my desk. Of course, my ever-lurking companion makes his appearance after I clear my confusion and turn off the alarm: guilt. Perhaps the exercise of counting just requires a periodic change in scale, the finality of the situation revaluing each and every tally mark, ignoring my pleas to reverse course. I read the articles and posts from other parents, ones that are much farther away from their exact minute. For both those counting in years and those that now count in decades; I hear the love in their words and sharing in a piece of their pain, I try to remind myself that no matter the time scale on the axis, the love that remains cannot be measured.






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23-Laughter

A few weeks after Lydia’s death, I returned home from my first day back at work to find Ben tugging at my hand to go outside in the snow. I can’t say we spent much time (if any) outside of the four walls inside our house that we stared at each day. Luckily, his Oma Jo, who had been staying with us, was up for the task and Heather and I slowly followed behind as they hustled out the door. Asked if Ben had a sled, I remembered one tucked away in the garage (a gift from Oma Jo, coincidentally) and climbed the shelves to reach the top where it had been shoved the summer before.  Bringing it to Ben, he jumped right in and motioned to me in a way that conveyed “Giddy up, horsey!” He loved it. All three taking turns to pull the sled while the others caught their breath, phones in hand to snap pictures of Ben’s ear-to-ear grins. Heather was able to capture the perfect video of Ben, complete with the cutest belly-laugh I have ever heard. I have watched it no less than 1,000 times. As I tapped out to catch my breath, I was surprised to feel a tingle of joy hearing Ben’s laughter in my head-it was a hard feeling to come by in those few weeks and can still be at times. Heather pointed to the sunset in the evening sky, a subtle mix of colors, and told me that there was our Lydie, our daughter, amongst the beauty in the sky. These were nice moments, and there have been others in the past 6 months, even a bit of laughter from Heather and I. But as I have mentioned, they are bittersweet as well. As I watch the video of Ben for the 1,001st time, I know that it will make me smile, but it will always make me want to share those moments with Lydie. I find the wanting to be the hardest part.



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24-Dreams

I have only had one dream of Lydie in the past 6 months, not counting the multiple daydreams.  Staring at nothing in particular, my vision begins to blur and I leave this world for a moment to spy on her playing in the back yard or laughing with her big brother at the dinner table. But there has only been one time where I have closed my eyes with my head on my pillow and found myself in the same space as my daughter. Our rendezvous point was one with absolutely no description – no landmarks or familiar items. It wasn’t bright or dark. There was no sun, sky or moon, and no earth under my feet. No wind, no birds chirping. No bright flowers to lend their fragrance. There was just a father and his daughter, wrapped in a white blanket to match the lack of landscape and placed against my chest. Her weight against my skin was the only sensory presence besides the wetness of my eyes and cheeks. She did not cry. She did not move. She was not alive. The next morning, I told Heather of my dream with Lydie, admittedly with mixed emotions. She reminded me of the most important fact – we will take her anyway we can get her. And while I would have liked the chance in my dream to see her smiling face and to feel her wiggling toes (well, if we are making wishes then I would rather have her alive in my arms and not in dreams at all…) I understand that any moment where I can be with her is a moment to hold on to. There is a line from an #avettbrothers song on Lydie playlist that continually loops in my mind - “My dream of all dreams and my hope of all hopes/Is only to tell you and make sure you know/How much I love you and how much I always did.” #mayweallheal #stillbornstillloved

 
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25-Happiness

I sometimes wonder if Ben will ever read the words that his mother and I have written in this very confusing time. It is not that he won’t have the opportunity should he want to read them. We are actively involving him in our process – speaking Lydie’s name out loud, planting flowers and drawing pictures for her. Telling him that we are sad that Lydie is not here and that he did not do anything wrong when he scrunches his face up at our tears. And we will continue to tell him in the simplest terms that we can find, that he has a sister who is very much loved and missed. But there will come a time when things will become much more complicated for him as he starts to understand and undoubtedly struggles with the concept of a sibling that he can never meet or never see. And in his search to build a better understanding, should he choose the read our words, or should he randomly come across this space on his own, he will see the raw pain of his father in some of his darkest moments. It won't be hard for him to realize that he was standing right next to his father, only reaching his thigh, while these dark and frustrating emotions swirled in my head. It could be easy for him, as well as others, to draw the conclusion that there is a perpetual gray cloud hanging over our house and heads, casting colorless gloom over our family. The truth is, there is a cloud and the color in our lives will never have the same tint, but there are happy times. And more than anything I want Ben to understand that he is a tremendous source of this happiness. In my very brief experience in fatherhood, I have been high and low, peed on and pooped on, exhausted, energized, confused, proud, anxious, and so very broken. But above all my Benji, I am, in no uncertain terms, very happy to be a father to you, to Lydia, and if we are so fortunate, to our fall #rainbowbaby who will add their own hue of color to our family.



 
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26-Signs

Looking at the calendar for the first week of April, Heather and I both let out a heavy sigh. Our son’s second birthday was the 4th and was sure to be a swirl of emotions. With a big grin from Ben, his construction-themed cake was placed before him, cameras snapping to document the milestone event. However, it was difficult not to notice the empty chair next to him where Lydie would have been sitting, stealing a bit of his thunder with her inpatient curiosity and sticky fingers for chocolate or perhaps swiping a bulldozer to claim as her own. Adding to the apprehension for this week were the two days following the 4th, the dates that mercilessly circle back to us each and every month. The March anniversary had been a 3-day fog, which made me brace myself for the gauntlet that awaited us in April. Ben’s birthday, while bittersweet, was a nice family day. The 5th came and went as I reported for work on the morning of the 6th. At the appointed minute from my alarm, I closed the door and took some time to be with my girl. Comparatively speaking, I had an ok day–and I didn’t know how to feel about that. I returned home to find an envelope lying on the counter, addressed to Benjamin and postmarked from his grandpa @bgslblue Inside was a birthday gift. Helping Ben to open his present, I found an activity book based on the poem Twinkle Twinkle Little Star. The significance of this book, leaving me breathless on my daughter’s 5-month anniversary, is that my father had no idea of my complex relationship with this poem, one in which I had just started to clear my doubts. Barely standing and slowly turning the pages in disbelief, the timing of this gift broke. me. down. Later in the evening, I texted my dad to extend a thank you from Ben and added that while it was a long story, I was sure Lydie had a hand in selecting her big brother’s present. He noted that he was guaranteed at the post office that it would arrive on his birthday. But it didn’t arrive on the 4th, and instead this book with a blue-eyed girl came two days later on the 6th, landing in my shaky hands when I least expected it, and perhaps when I needed it the most. 


 
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27-Ritual

At approximately 7:15pm each night, we start to warm up Ben to the idea of going upstairs to start the bedtime routine. Asking him if he is ready for PJs, he exploits the weakness in our approach with a polite, but definite “No.” This back and forth continues for several minutes until he feels that he has adequately expressed his independence and joins his parents in a Dinosaur March up the stairs to his room. After a very thoughtful debate on his pajama selection for the evening, he then commences a catch-me-if-you-can style wrestling match to change his clothes, the game teeming with giggles. In the bathroom, sensing another opportunity to express his independence, he tells his parents that “my do it” while swiping the toothbrush from our hands. Back in his room, he climbs into his big red chair and directs his mama to sit next to him by slapping his hand on the cushion. Reading stories of choo-choos and trucks, big green toads and dogs with floppy ears, there only remains one last step in our routine before final hugs and kisses for the night. Wrapped around his mother or father’s hip, we walk to his window and gaze upon the evening dusk, looking for our little girl and little sister among the sky. A ritual that began with that single star paired with the full moon evenings before, a tradition that just feels right to carry on and continues to each and every night. On some evenings Ben will recite his parents words as we tell Lydie that we love and miss her, and other nights he adds his own words such as his peak-a-boo game that he plays announcing “I see you, Lydie” that make Heather and I instantly and silently find each other with matching wet eyes and big smiles. I know that Ben cannot completely grasp the concept of this final step before bed, perhaps no better than the significance of the wet toothbrush that we argue about each night. But the hope is that these patterns and these habits will help to instill in him a better understanding of the world around us, from something as small as healthy teeth to something as important as recognizing those that are no longer with us.

 
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28-Passion

Admittedly, this prompt threw me for a loop. Turning to my inspire-machine, I googled the word and drilling down to an etymology level, was surprised to find that it originates from the Greek verb “to suffer.” The turn of phrase “I want it so bad it hurts” came to mind–a statement that I used in hyperbole before that has now taken on a deeper, and quite literal, meaning since the death of my daughter. This want hurts. Heather quoted on her blog several months ago that the choice to try for a child is like having a little piece of your heart walking around outside of your body. I have experienced that with Ben, watching my little piece run and fall, get sick or struggle as he navigates his small world. I am not sure I understood this concept completely before, and I am not sure I completely understood that a different little piece of my heart could die along with Lydia. The possibility was there, footnoted and unspoken. No one really talks about it or perhaps very few people listen, the previous version of myself included. I understand the practicality of it, doctors don’t want to tell every patient that “you know, this baby might die” and well-wishers will never offer up “hope this one lives!” although there is definitely room for improvement in these interactions. It is just the overwhelming and irrational feeling that I was so na├»ve. How could I have so blindly exposed myself and my family to this risk. And I suppose that explains the deep-dive into stillbirth research, the foundations and medical essays, the Q&A sessions with multiple doctors. All driven in a manic attempt to understand the “hurt” side of the statement. The other side manifests itself in the various activities and rituals-her Christmas tree that is still standing, the star-gazing and candle lighting, creating or carrying shaped stones, taking pictures and posting, speaking and writing her name over and over again-the “want” of having my daughter near. These two words weigh down opposite ends of a sentence, while I exhaustively and passionately scramble to balance the want and the hurt.

 
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29-Nourish

In the corner of our yard, visible from nearly every window on the back out our house, is a small pie-shaped section that holds bright flowers and bushes along with stones created and transported from the farmland and beaches of Canada. This small area has been transformed from a non-descript patch of grass to a full garden for Lydie, a place in our home that she can claim as her own. To be honest, I do not have a green thumb and while Heather has a much better sense than I do, she would not claim this for herself either. So I was surprised by her suggestion several weeks ago to do away with the grass and turn the soil in preparation for a garden for our daughter. For this, we consulted with the experts – family and friends that are much better at identifying the wagon full of colored potted plants that had been collected. Several people have donated plants or flowers as well as decorations for Lydie’s garden and with the help of Oma Jo’s @johannajohnston design and shovel, as well as a vacation day from Heather to coordinate with the weather, we now have a very beautiful garden complete with a bicycle from Heather, dragonfly from Oma Jo and glass flower from Heather’s coworker. I have included a moon and star the lights up at night as well as my “rugged/rustic” stone L, and tulip bulbs are on their way to show off Lydie’s Dutch roots. This garden has been and will continue to be work - a slice of earth that needs our attention to provide water, sunshine and love. And undoubtedly, we will still need to consult with others on the care for this piece of land. Obviously not our first choice, as we would trade this consolation garden and all other possessions without hesitation, but a way to engage ourselves and others in an activity that cultivates the spirit of our daughter and acts a bright and sunny spot in our home as we play in the backyard or stand together to take family pictures.

 
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30-Future

The future has become such a strange concept to grasp. Previously, it was a distant, but visible point on the horizon, selected for its beauty, a reference to steer by. With the occasion gust of wind or forceful wave pushing me off-course, I could slowly turn the rudder to point my bow back on the mark. We made plans around it, decisions were aligned, visions were discussed, we had control, or at very least influence, over the path that was charted. And then, from the calm blue waters, a massive tidal wave appeared that blotted out the sun, swallowing me whole and destroying everything around me. Tumbling under the waves that crash above my head, I break the surface to find no hope of recovery, no chance of climbing safely back into my raft and continuing on. I am treading in foreign waters, scrambling for whatever piece of dry land that exists. And even as I walk around picking up the pieces of my former life in a desperate attempt to repurpose them, I can feel the tidal wave coming back to finish me off. The hairs on the back of my neck stand on end as I whip around to find nothing but empty air filled with the sense of heavy foolishness and paranoia. As I stand at the edge of the water, I realize that I will be forced to leave this small piece of dry land, it is not meant for an extended stay and will eventually disappear into the water that surrounds it. The weight of this truth is brutally heavy. With no sense of direction, I reluctantly wade in the water. Impossible to recapture my beautiful horizon, I must now swim with my head down in order to move forward. A less efficient and more exhaustive process, it is hard to tell where I am headed, if I am actually making progress or if I am moving backwards just not strong enough to overcome the force of the waves that push and pull at me. How do you plan for this? How do you plot out a future when you spend most of your time making sure your lungs are full of air? I have no answers for these questions. All I know is that my future depends on my ability and willingness to keep swimming and every so often, lifting up my tired eyes in an attempt to see what lies ahead. 

 
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31-Remember

I remember my phone vibrating as it displayed my wife’s name. I remember having, and dismissing, the split second feeling of uneasiness. Not foreshadowing the impending devastation, but a sense of something unnatural. I remember the chaos on the other end of the phone, the confusion as the sound hit my ears. I remember that I heard the words exactly without interference, and I remember I asked them to be repeated in disbelief. I remember what I was wearing and where I was sitting. I remember waiting for the elevator and I remember breaking out into a sprint once I reached the doors that led me outside. I remember cycling through all of my faults that allowed this to happen. I remember pleading out loud to any god, any universal being that would listen, to tell me that this wasn’t true. I remember holding my daughter in my arms for so long that they hurt. I remember that last time my lips every touched her skin. I remember sitting at our kitchen table the first night home and staring numbly into the cold dark night, wondering why I was so far away from my child. I remember her each and every day. Not in the way I had hoped for and not even in the physically was she was, no matter how hard I fight to keep those memories. She has a beautiful way about her, changing every day into something new. The warm sunlight that pours in, a soaring bird, a shining star, the cool breeze, a bright flower-I stumble over myself just trying to keep up. Reading through the comments of an article on #glowinthewoods a parent posted a poem cited to an unknown author that won’t leave my mind**Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.**I remember the exact moment that the noise, trouble, and hard work entered my life and I know that they will never leave. But despite this, I hope to recognize the growing moments of calmness in my heart and to remember that this peace is my daughter that I carry there.

 
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