Capture Your Grief: Day 23

I missed a few days of the Capture Your Grief project while visiting family in Colorado.  After I returned, I’ve had a really hard time focusing because another topic has been weighing heavily on me.

This post will upset some people and I’m sorry.  I’ve been writing and rewriting this for days.  I showed it to Joe and he basically told me I shouldn’t post it.  But I can’t take it anymore.  Staying silent isn’t going to work for me.

And let me just tell you now: this IS NOT A DEBATE.  I do not want my post turned into an abortion debate. If that happens, it will be clear to me that you have missed the entire point of what I am about to say.  What has become abundantly clear to me over the past few days is that empathy—what it means and how it works is lost on social media, and I fear in general.

After the most recent presidential debate, social media has not been a safe place for me.  The words “incompatible with life” show up constantly.  And every single time I hear them, I am pushed back into the darkness.  The day we heard those words. It is excruciatingly painful.  It knocks the air from my lungs just like it did the first time I saw the ultrasound tech’s face when she knew something wasn’t right. All we wanted that day was to see our little one squirming around on an ultrasound.  Not even in our worst dreams did we expect our lives to be forever shattered by those three words.  And I want to scream.  Zoey lived.  Not long enough. Not nearly long enough, but she lived.  And we loved her long before she was born.

And then there’s the posts with very graphic and disturbing photos & videos of late term abortions.  And I’ve seen parents who chose that option called murderers.  I can’t even begin to tell you how angry this makes me.  If you want me to believe that all human lives are important to you, try not calling a family who has made the most unimaginable decision for their family a murderer.  Unless you were in that room with their doctor you have no business judging them.  I’ve met moms that were in this position.  I know the horror.  I’ve seen them talk about it—I’ve seen the heartbreak in their eyes, their voices trembling as they speak.  And I guarantee you that the majority of them are shell shocked, traumatized and suffer a kind of guilt you can’t possibly fathom.  I know this because I was in that room when I heard my daughter’s diagnosis was “incompatible with life”. And I know that you cannot possibly process what is happening. And yes, I made the decision to carry my daughter.  Aborting her was not an option I considered. But that was also never recommended to us.  And we were told that Trisomy 18 was not painful for her.  Had circumstances been different, I honestly don’t know what kind of discussions would have happened between me, my husband and our doctor.  You realize there is a group of people out there that think we didn’t do enough for Zoey because we chose hospice for her?  Because we did not do surgery after surgery? And do you have any idea of the kind of pain that causes me?  The guilt.  The fear that maybe they are right?  It rips me apart.

Seeing all of this played out over social media is eating at me. These are real people.  Real babies.  With real issues that you cannot even begin to comprehend.  Because you don’t want to go there.  Trust me.  It’s easy for these bloggers to sit behind a computer and judge these parents because they are so sure they would not even consider that option.  And they may believe that 100%.  But I’ll tell you from behind THIS computer is a woman that has been there.  And she’s telling you that you really don’t know.  The anger, the hatred does nothing but cause more pain. It is not changing anyone’s mind about anything.

I will tell my daughter’s story whenever I can. It is a love story.  But not because I want to pile on the guilt to anyone.  Carrying Zoey was beautiful, amazing, and wondrous.  I do not regret it for one moment.  And yet I still carry guilt.  I still wonder if I made the right decisions for her.  I still fear other people are judging me.

The point is, you do not have to agree with another person’s views, choices or beliefs to show empathy. And I want families that sit in those rooms, horrified at the diagnosis they have been given to know that there are people out there who love them.

I hope to always show compassion.  Love.  Empathy.

Capture Your Grief Day 13: Dear World


Today’s prompt for Capture Your Grief says to share whatever is on your heart.  What you want the world to know about your kind of grief.  Here’s a glimpse at what’s been weighing on my mind.

It’s complicated.  Grief is complicated.  Infertility is complicated.  The idea of expanding our family beyond Zoey when we really only wanted one child is complicated.  It’s all layered together.  Connected. Intertwined.  I can’t compartmentalize the experiences.

We took a break from fertility treatments over the summer.  I don’t think saying I’m tired can fully encapsulate how I feel about this process.    After more than a year of treatment and tracking with no success, we moved on to IUI.  Between appointments that I was on my way to when I received a call from the office kindly saying “don’t bother to come” to a meltdown in the office before our first attempt, it was a hot mess.  After the failed attempts, it was time to go back and sit with our doctor to discuss next steps.  I’ve been weary of IVF.  And now I’m even more so.  I thought were finished with the mentally exhausting appointments with doctors.  I was wrong.

They take an egg.  They fertilize.  Simple, right?  Not so fast.  There are many decisions you have to make along the way. Ones I never thought I’d grapple with.  But then I had Zoey.  And she changed everything.

I don’t want to make choices about selective reduction. Genetic testing. Do you implant if they find out there is something wrong?  How many do you implant?  What happens to the eggs that aren’t implanted? Do you donate them to another family and then live with the knowledge that more of your biological children could be out in the world? And yes, we could leave some of this up to chance just like you would if a pregnancy would occur naturally.  But should we knowing our history?  And my age?  They say “odds are”, but we’ve fallen on the crappy side of those before.

All this at the low, low cost of about $25,000 per attempt with no guarantee.  My current insurance doesn’t cover any of it.  I feel guilty for putting a cut off price on a child.  But life has given me perspective on things and I don’t know if that’s the responsible decision for us.  Even putting the cost aside, I’m not sure IVF is the right choice for our family.  And to be honest, I’m scared of being pregnant again.  I know too much now.  I’d basically put aside pursuing that option until I received an email from our corporate office hinting that in the new year they may start covering more progressive fertility care.  Now it may be back on the table, but we have to wait for more information.

I actually thought all signs were pointing to adoption.  I started preliminary research.  And it isn’t any easier. There are success stories.  And horror stories.  It could take 2-3 years.  You have to put together a dossier.  And you have to do a home study.  Where someone comes into your home and asks you about your past, your family background, your relationship, your support system, beliefs on discipline and structure.  It is overwhelming and terrifying. Because what if they look at us and think we’re just too much of a mess?  What if they think we haven’t handled our grief well enough?  What if they think we’d be terrible parents?  What if nobody chooses us?  And it does make you think—how would we incorporate this new child into our lives?  How would we explain to them that they not only have biological parents out there in the world, but that they also have a sister they will never meet because she died?

And then there are more decisions.  Are you willing to accept a child of a different race? Age? What about disabilities?  Will you accept a child with a cleft lip, club feet (sound familiar?), and a host of other conditions both physical and emotional?  Again, how do you make those choices? Am I a terrible person if I say no?  I love Zoey unconditionally. I loved her little feet and lip and all those little things that were a sign of her condition but made her—her.  But just what conditions are we open to choosing to bring into our lives?

I’m sure I do not fully understand the process.  I know I’m missing pieces.  That’s what happens when you’re exhausted.  And when you thought you were finished with really difficult decisions.  If you have to choose whether or not to do CPR on your infant when they are born, if you have to choose hospice for your newborn, if you have to make these choices, you should be free from all other decisions including where to go for dinner.  Maybe this process wouldn’t feel so overwhelming if I didn’t already feel like I’ve been beaten down.  If I didn’t constantly have to reassure myself that I did what was right for my daughter.

I don’t want to be going through any of this.  I just want her.  I miss her.  I often lay at night waiting to fall asleep with the weight of grief pressing on my chest instead of my little girl.  But I also don’t know how to give up on the idea of having a child with me.  One to make cookies with. One to greet me at the finish line at the Disney race I do for Zoey.  One to watch take first steps and to tell me they hate me when I don’t let them take the car.  I don’t want a replacement for her but I love being her mom.  I’m not sure how and when to give up on mothering another child.  And I think Joe is an amazing dad.  It’s not fair that I can’t give that experience to him again.  I have to try really hard not to dwell on the unfairness of all of this.  I think we’re good people.  We were good parents to our little girl.  Why didn’t we get to keep her? Why don’t we get that chance again?

I honestly don’t know where we go from here.  Or how to find the energy to decide.

Capture Your Grief Day 12: Lemons + Lemonade


Seeking blessings in the midst of grief does not diminish the pain.  When we learned Zoey had Trisomy 18 we had to shift our focus away from the devastation to making the time we had with her as beautiful, meaningful and amazing as possible.  My time with Zoey brought a deep and endless love to my life.  The best way I can honor that love is to keep looking for ways to once again find beauty and meaning in the messy world where I now live.

Capture Your Grief Day 10: Symbols + Signs


When my mom returned from a trip to Europe a few years after my father passed away, she told me about visiting the catacombs in Rome.  Anchors are inscribed into the walls—a symbol of eternal life.

“We have this hope as an anchor for the soul, firm and secure” (Hebrews 6:19)

The anchor speaks to hope.  She needed hope then.  And when we received Zoey’s diagnosis we needed hope. We hoped we’d still hear her heartbeat at the next ultrasound, we hoped she’d get to take one breath, we hoped for one more day.  We hoped she knew how much she was loved.  And now we hope she’s somewhere more beautiful than we can imagine.  And we hope we get to be with her again someday.

The rational, practical side of my brain can easily explain away the signs.  But sometimes the irrational mom in me takes over and allows me to believe Zoey is sending us her love.  It would be easy to say that the two purple balls that bounced into my fenced yard last year were just blown in randomly with the wind (but would it help if you knew that Zoey’s friend Hattie’s color is purple?)  I know how playlists on the radio work… but isn’t it strange how our song comes on the radio just as I stop to take a picture of a double rainbow?   And I know that weathered penny was probably sitting on a ledge until I bumped it, but isn’t it funny how it fell to my feet at the beach where I’d stopped to feel closer to Zoey before the race in her memory?  Love isn’t always rational.  And love can shine through in the most extraordinary ways.


Capture Your Grief Day 9: Surrender + Embrace

holding zoey

I’ve surrendered to knowing grief will always be a part of who I am.  It will scare me, annoy me, drive me, follow me and mold me forever. I can try to run from it for a little while.  But I know it will always catch up.  It will hit at moments I least expect it.  New triggers will find me.  But I’m also learning to embrace it. I’ve heard that grief is the price for love.  I love Zoey more fully, deeply and purely than I’ve ever loved anything.  If the price for that love is the strange world that grief has moved me to, I will pay it.

Capture Your Grief Day 8: Beautiful Mysteries


When I looked in those beautiful blue eyes, I knew her.  Knew her soul. But still I wonder…

Toddling around chasing her kitty cat around the living room.  Sitting on her daddy’s lap watching Disney movies (Star Wars if he gets to choose).

Eyes growing wide as we walk toward Cinderella’s castle on our first trip to Disney World.  Twirling around in her blue tulle dress as she meets a real life princess.  Falling asleep in my arms while clutching her plush Mickey.

Tiny little toes digging into the sand.  Bright blue eyes glistening in the sun.  Rushing into the waves and giggling as they knock her down.

Baking cookies.  Dumping flour all over the kitchen floor and looking up, worried I’ll be mad.  But we laugh instead as the cat leaves little white foot prints as she scurries away.

Running up the stairs at her grandma’s house with a bag full of fabric, anxious to get started on sewing her Halloween costume.

Scoring her first goal on the soccer field.  Getting a high five from her dad (the coach) as I beam from the sidelines.

Trying on a prom dress.  Falling in love with it.  Glancing at the price tag and grimacing.  Looking to me.  And beaming as I nod my okay.

Catching my eye as she walks across the stage and collects her college diploma.

Standing in a white dress, the same flowers I’d worn at my wedding pinned in her hair.  Tearing up as I give her the blue diamond earrings that her dad gave me more than 25 years before.

Sliding an ultrasound photo to me.  Announcing that her dad and I are about to be grandparents.

I didn’t just lose my 4 month old.  I lost every beautiful moment I dreamed of with my daughter.  And yet, she will be with me for every mystery yet to come.

Capture Your Grief Day 7: Myths

St. John, USVI– I chose this photo because the grief often reminds me of the ocean.  Deep.  Vast.  Constantly moving.

Everyone has heard of the five stages of grief, right?  Denial. Anger. Bargaining. Depression. Acceptance.

The problem is, many have accepted this as the correct way to grief.  But in reality, this model has been misinterpreted.  While many people do experience those emotions, grief certainly does not fit neatly into any model, box, or timeline.  Everyone will experience it differently and everyone must find their own way through.  Sure there are some coping mechanisms that may not be as healthy as others, but as long as you’re safe and not putting yourself or anyone else in danger you have to allow your feelings to just be.  It is ridiculous to look back at the past few years and wonder if people think I’ve grieved the wrong way.  And I have wondered that.  If they see me crying now do they think I’m stuck?  When I went back to work so soon after she died did they think I wasn’t really hurting?  If they’d found me crumpled on the floor of my closet sobbing months after losing her, would they have picked me up and taken me to a doctor?  Some moms quit their jobs. Some go back to work.  Some moms can’t get out of bed for days.  Some go shopping.  Some can’t eat (and some of us eat everything).  One way is not right.  One is not wrong.  Just different.

And I do believe grief will last until my last day.  My love for Zoey is deep and vast and it did not die so I will always deeply feel the loss of her as well.  The pain of losing someone does not get erased with time.  It will change shape, ebb and flow but will always be a part of who I am.  There are days I feel stronger. Days I don’t.  At any moment I am where I need to be.  And I need to allow myself to accept where I am.

I don’t believe grieving for a lifetime means that I will never feel joy. In fact, I think I can feel a deeper level of joy because I also know true heartbreak.  And yes, I do think every happy moment will have at least a little bit of sadness attached because Zoey isn’t here to experience it too.  That’s different than not having it at all.

I’m learning to live with grief as a part of the new me.  I’m learning to channel it and allow it to drive me. I’m experiencing joy, beauty, love and hope on a different level.   You can still thrive even in the midst of terrible pain.  You don’t have to choose “moving on”.  You can choose “moving with”.

Capture Your Grief Day 6: Empathy


Empathy is hard.  I think it’s very difficult to actually put yourself in someone else’s shoes especially when you’re talking about the death of a child.  I know I couldn’t really understand it until I was actually there.  Even if people try to imagine what it would be like, going to the place is so dark that they don’t stay there long.  So you’re left with all the lines that do not help: God needed her back, She’s in a better place.  At least you had her for a little while.  Everything happens for a reason.  Well meaning, but not particularly helpful.  If you’ve ever said these things to me, please know I understand. You didn’t know what else to say.  It’s also hard for me to tell you what I need.  Because most of the time I don’t know.  Or I don’t want to ask.  But I have a few suggestions.

Be patient with me.  My world has changed.  And it will be forever more difficult to navigate this life.  I will always miss her.  I will always feel her absence.  Family gatherings.  Prom season.  Holidays.  A random Saturday at the zoo.  All of these things are different for me now and I don’t always know how to get through or explain why I’m upset at what seems like a random occasion. Just know that all of these things are a reminder of what I’m missing with Zoey.  Don’t be surprised if I leave in tears.  Or if I cancel.  Or don’t show up.  I really can’t stress this one enough. At times, the thought of even showing up is too much.  It doesn’t mean I don’t love you or care about your event.  But I had to learn self-preservation.  I pushed myself to be “normal” when life was anything but normal.  That never ends.  And it can be exhausting.

I appreciate the calls, texts and cards that show up out of nowhere.  You’d be surprised at how many times they show up right when I need them.  Don’t be afraid to reach out.  You’re not reminding me that my daughter died.  I live with that reality every day.  But reminding me that you think of her and that you love me is always welcome.

Let me talk if I start the conversation.  I don’t have many live conversations with people about grieving.  Most of it is here on this blog.  And it really is healing, but occasionally I will need someone there to hand me a Kleenex.  If I start talking, please don’t change the subject. I know that’s the easier choice.  And I know you don’t know what to say.  But trust me: you don’t need to say anything. Just be.  And that might be the most important of all—just be there.  I’ve said before how isolating this can feel.  But I know you’re okay with just sitting next to me, just being present, I won’t feel so alone.

Capture Your Grief Day 5:The Unspoken

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I hide when I cry.  I don’t want to people think I’m weak.  I feel like I’m putting on a show because everyone is watching.  If I fall apart if even for a moment will people shake their head, feel sorry for me and talk about me in whispered conversations?  And if I admit that I’m hurting, will I make them uncomfortable?  But I don’t always want to pretend that my world isn’t shattered.  It is exhausting.

I don’t even feel like me sometimes.  The me I’d known for 37 years died that day too.  And now I’m trying to figure out who I am again.  A mom without my daughter.  A broken-hearted passenger on the hot mess express.  Maybe the difference doesn’t seem obvious to the outside world, but there are moments I feel like I’m completely losing it.  I don’t think my memory is the same. My thoughts are often disjointed.  My tolerance for bullshit is lower.  Groups of people and parties give me anxiety.  Meeting new people makes me uncomfortable—because I know “the” question is going to come up.  “Do you have children?”  My views on life changed.  My views on death changed.  I’d like to say that the changes have all been positive, but I’d be lying.

I’m jealous. Jealous of the ones that still have their kids.  Jealous of the mom walking with her daughter in the park.  Of other women’s pregnancies and everyone else’s happy little families.  I wonder why it seems like everyone else has what I dreamed about.  And then I beat myself up for thinking about myself instead of focusing on the memory of my daughter.  And worry that she’ll think I regret the time I had with her.

And I feel guilty.  Guilty for the jealousy.  Guilty for not being able to keep her alive. Guilty for failing her.  Guilty for failing my husband.  My family.  Guilty for not wanting to go to holiday celebrations with our families because they are just so damn hard.  Guilty for feeling like I don’t do enough for her now.  Or for not being able to remember if I told her (picture) that I loved her before leaving the house.  Guilty for not taking flowers to the cemetery more often.  And for feeling like the arrangements I put together aren’t good enough.

I think about death often.  I imagine getting the next phone call.  The next one that changes my life again.  I tell myself that if I imagine every scenario, then it won’t actually happen.  Because I never imagined I’d lose my daughter, but I did.  So surely the opposite is true.

And I notice myself laughing at inappropriate times.  Making dark jokes with the other moms who do the same.  And then worry that I’ve become calloused and angry.   That one day you’ll find me alone on the front porch, wearing a bathrobe with a coffee cup of vodka in my hand screaming at the neighborhood kids to get off my lawn (might as well throw in about 20 cats while we’re at it).

And I often wonder as I write these and put them out there for the world to see, if you’ll look at me differently.  And wonder why I never learned just to shut up and leave some of it unspoken.

Capture Your Grief Day 4: Circles of Support

The logo for the Share walk this year was created by my friend and features baby Evey’s sweet little footprints.

Everyone is there the first few days.  But then people go home and back to life.  Their normal life full of work and soccer games and grocery shopping.  And the truth is you don’t really need anyone but your closest circle there the first few days.  Because you don’t even really know they are.  You can’t see them through the fog.  It’s later.  When your broken heart is bleeding but you feel like no one is there to apply pressure.  I am lucky.  I have strong circles of support.  Joe.  Family.  An amazing set of friends, including my FUT18 moms and other “club” moms.  These people hold me up, check on me, send their love and most importantly love and remember Zoey.  But grief can still be a very isolating experience.  No matter how many people surround you and how wonderful they are, at some point you will look around and think everyone has forgotten you.  I think it’s just part of the process.

It can be difficult to seek support even when you desperately need it.  You don’t want to seem weak.  You don’t want to feel judged.  But this is a hard path and sometimes you should not travel it alone.  If you, or someone you know, needs support after the loss of a baby, seek out a Share support group.  I’ve heard good things about the Compassionate Friends, but do not have firsthand knowledge.  You can also check with your local churches and hospitals.  I am actively involved with BJC Hospice and they offer a variety of healing retreats, workshops and programs for moms, couples, siblings and communities affected by loss.  I’ve appreciated some of the blogs/stories I’ve found at Still Standing.  However, my word of warning: I have found on-line support groups to be more damaging than healing. Maybe they are right for someone else.  But they were not the right choice for me.  If you go that route, be cautious and be okay with leaving them if you feel it isn’t the right place for you.

It might take a few tries, but you’ll find your way to a place that feels supportive and healing.

Share: Pregnancy and Infant Loss support

Compassionate Friends: Supporting Families after the loss of a child

Still Standing Magazine: blogs and stories from other loss parents:

BJC Grief support: