Day 21: Relationship

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Losing Zoey changed everything.  I’ve changed so my relationships have to adjust as well.  I now have an intimate relationship with grief. I’m still figuring out the new normal, the new me.

My friendships are changing.  I am keenly aware that many people seem afraid to talk to me.  They don’t know what to say so they say nothing.  Others pretend like my life reset to July 2013 before I was pregnant.  I understand that people don’t know what to do, but it still stings.  How do I maintain friendships when I’m jealous? When it just hurts so badly to see them with their kids?  I’d like to say I’m strong enough to rise above the envy, but at the moment I’m not.  I can love these people and still wonder why I’m not holding my sweet baby.  I feel like it’s my time to be selfish.  I have to protect myself. I don’t have the energy to deal with unnecessary, created drama.  I imagine I’ll lose a few friends. They won’t like who I become or where I am in my journey. I do believe that some people are meant to stay in your life. Others are not.

Other friendships have been strengthened.  For some it’s because we share this common, although crappy, bond. Only another mom who had to give her child back can truly understand the ache.  And I have a few of those very special friends that are just there. Ever present and ever loving in my life.  I don’t need to talk to them every day to know that if I called in the middle of the night, they’d find a way to be with me.

I want a relationship with Zoey. Not in the traditional sense, obviously, but she needs to remain a part of my life.  What that relationship looks like will change as time passes. I’ll learn how to be her mom without her here. The pain of losing her is with me always.  I’m figuring out how to live with it.

My relationship with Joe is evolving too but we vowed “for better or for worse” and meant it.  We grieve differently, but we’re learning how to let the other do what they need.  We’re figuring out the balance when our styles collide.  There are so many reasons I’d like to tell those people that feel the need to mention divorce to “shove it”.  While I know we are only two months into this journey, I fully believe our marriage will survive. He’s been strong and picked me up when I’ve been too weak to stand on my own. When he needs my strength I share it with him.  We lost our daughter.  That puts everything else in perspective.  So many of the little things that pick at you just don’t matter.  Our fairy tale may not look like all the others, but it’s ours.  And beautiful in its own way.  Our love created a beautiful life, a beautiful soul.  And when we’re in rough waters we can lean on that.  Six years ago on that beach we vowed to face life together and I would do it all again.

Day 20: Breathe

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I don’t know if you believe in signs.  But I do.  A dream where your loved one stops in for a visit.  One tiny pumpkin.  A butterfly. Running into someone your heart needed to see.  Easy to pass off as coincidence.  But I think there’s more.  The thing is, you have to stop moving long enough to see them.  Stopping has been hard for me lately. It’s too easy to get overwhelmed. But I need to remember to breathe.  Starting today, I’ll make more of an effort to stop.  To watch the shape of the clouds, let the sun settle on my face, feel the breeze, see the pink splash across the sky as the sun sets.  Stop.  Breathe.  Look for the messages from my little angel.

Day 19: Give

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Donations have been made in Zoey’s honor to the St. Louis Zoo, Allison’s Angel Gowns, Molly Bears and Children’s Miracle Network.

Donations to the Zoo not only help support the animals at the Zoo, but also conservation and research efforts.  Through these donations, Zoey will have a brick placed in her honor at the entrance to the Zoo later this year. It means so much to us that her name will be at the same location where we celebrated both our marriage and her life.

Allison’s Angel Gowns accepts wedding dresses and transforms them into gowns for angel babies. Donations to AAG in Zoey’s honor helped a family receive a gown after they unexpectedly lost their child at birth and continue to help fund material and shipping costs. This group gave me the inspiration to have my mom and grandma transform my wedding dress into a gown for Zoey.  Thankfully we didn’t need it at the hospital and we were able to have her photos taken in it as a newborn.  Read Allison’s story at allisonsangelgowns.com.

Molly Bears creates weighted bears to bring comfort to families facing the loss of an infant.  I have a Zoey bear ordered and donations in Zoey’s honor will help 10 more families receive their bears sooner.  I’ve struggled so much with missing the weight of Zoey against me.  It might seem strange to those who have not experienced this loss, but I can’t tell you what it will mean to me to hold something the same weight as Zoey again.  To learn more about the story behind the bears, visit mollybears.com.

Donations are now being accepted in Zoey’s honor to Children’s Miracle Network as part of my “run for Zoey”.  Children’s Miracle Network provides funds to both Cardinal Glennon and Children’s Hospital.  Cardinal Glennon provided care to us through the Fetal and Maternal Care Center before Zoey was born.  They always made us feel like Zoey’s life was worth fighting for.  The Wings program which provided Zoey’s hospice care is through Children’s Hospital.  Because of them, we were able to bring Zoey home and keep her there with us.  And they loved her too.

I am so thankful that so many of you have given so generously and that Joe and I are also able to help these groups too. We will never understand why we lost Zoey.  Why these things happen to other families. We obviously feel Zoey’s life had purpose and meaning, but you always hope that extends outside of just your family. Zoey’s life is helping animals that are more than just entertainment at the Zoo, helping other bereaved families navigate their new journey and helping the hospitals that served her in the hopes that another family can avoid joining us on this path. Zoey’s life is continuing to have an impact on others.  It doesn’t bring her back.  It doesn’t help answer all the questions.  But it does bring me great comfort.

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Day 18: Gratitude

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There is so much that I’m grateful for even after losing Zoey.  My friends that hold me up, make me laugh and let me cry. For the perfectly timed hugs and texts.  My mom and grandma: two of the strongest women I know.  I’m thankful they’ve taught me resilience and strength and how to keep loving even with a broken heart.  And my husband. We travel this together. I’m thankful for the cuddles from my cat. For tree lined running trails.  A warm home.  There are a million little things.

There’s something I’ve been missing desperately, though.  Thoughts of it have consumed me the past few days.  I want to release the ache of missing it and just be thankful I had the experience.  Zoey spent every night sleeping against my chest. But that was also our “go to” comfort spot.  Soon after she was born that’s where she was.  Where she spent much of her life in the following months.  When she was upset, I’d hold her there and she’d settle down.  When we were out, it’s where she wanted to be–she could still look out with one eye but not get overwhelmed.  From the first time I held her to her very last breath, that was home. Maybe it’s because she could hear my heart beat just like she did for nine months while I carried her.  I miss her there desperately, but I’m so thankful I was allowed that experience at least for a little while.  And I’ll always love that I was able to comfort her.  I’m grateful for knowing that cuddling my baby against me made her world a little better.

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Day 17: Explore

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Why I chose this picture: I always loved when Zoey would open those big beautiful and take in the world.  Helping her explore opened my eyes to so much that I took for granted. She continues to teach me, to guide me.

The last year has been exhausting.  Physically and emotionally I am drained. We’ve experienced such a whirlwind of change.  Constant change.  We’ve ping-ponged between joy and anguish so often that I’m not sure where I landed. I’ve called this a journey. I feel like I’m all over the map. My pregnancy did not go the way it is “supposed” to go. I felt like so much of the experience was stolen from me. It is supposed to be a time of excitement and anticipation. And it was, but also a time of fear and anxiety.  We were so excited to meet Zoey, but terrified she would never take a breath.  The following months were the same.  She was the best part of me. My purpose.  Joy and love and beauty in a 6.1 pound package. But we never escaped knowing we’d have to give her back. And where does it leave me now?  How do I fit in the world?  How do I find my place?  I’m her mom, but she’s not here.  I am forever changed but left with only memories.  I’m not sure how to hold on to her and move forward.  I know I will never forget. I know she’ll always be in my heart. But it isn’t enough.  And it doesn’t help me feel like I have a place. I need find a way for everything to coexist and not leave me so scattered.  I want to be at peace with my grief.  To know it will always be there but turn it into something that drives me instead of cripples me.  I want to find joy again.  Deep joy like I experienced holding my baby girl. I’m hopeful that I’ll get there.  But I’m still under the cloud that’s been overhead for so long.  I think I need to explore the darkness a little more before emerging to the light so that when I do, I can feel like it’s been a healing experience and that I allowed myself to learn what I could from this part of life.

Day 16: Retreat

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I’m not entirely comfortable with the idea of retreating. I’m actually scared of what would happen if I just stopped.  Idle time is when my mind wanders.  It conjures up the worst images.  Things I don’t want to write about. They are too hard. Too awful.  Idle time is when the doubt and regret creep in.  I think if I keep moving they don’t have time to settle.  I tried it tonight. Just to see.  I did not like where my mind went.

The only place I really stop and reconnect is at the beach.  There’s something about the sound of the waves crashing.  I could listen for hours. It soothes me. I know running away is not the answer.  I could hop on a plane tonight and settle myself under a palm tree but the pain would still be there.  It will always be there– a tickle, an itch of it even on the best days. But maybe on a day when I find myself by the sea I’ll stop long enough to find a place for the grief that I can live with. Tuck it away so I can be at peace everywhere, not just when my toes are in the sand.

Day 15: Community

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On August 28th we became a part of a community that we did not want to join.  Few even want to acknowledge that it exists.  Its reality in this world is too heartbreaking to fully comprehend.  We became “those people”.  The ones you look at and think “thank God that didn’t happen to me” and “I couldn’t do it”.

We’re still fairly new here so I’m still working out how I fit.  I’m not sure if I’ll be an active participant in the support groups and walks or if I find another way.  Many have started their own non-profits or projects.  They found a void and filled it.  I admire them, but I’m not there right now (unless you count the club Andrea and I started known to us as “Stupid Sisters”).  There are support groups but I haven’t been yet.  They make me nervous– they are filled with people in similar situations yet the same people could be miles from where we are.  We attended one walk but the pain may have just been to raw to fully appreciate the event.

Loss has always happened but the world hasn’t always been willing to talk about it.  When my mom lost a baby, she felt there was nowhere to go, nowhere to recognize the loss.  We now have places.  The community has banded together to bring awareness, comfort and support.  Now it’s my choice on how and where I want to participate.  I will always be a member of this community.  And I wish it wasn’t so big.  I wish nobody else joined.

Nicol and I are still fundraising for Children’s Miracle Network.  Maybe some of the funds raised will help another family avoid joining this community.  For now, that’s how I feel I can help  both myself and other babies.

Dawn: http://princesshalfmarathon.childrensmiraclenetworkhospitals.org/index.cfm?fuseaction=donorDrive.participant&participantID=1725

Nicol: http://princesshalfmarathon.childrensmiraclenetworkhospitals.org/index.cfm?fuseaction=donorDrive.participant&participantID=1726

Today is Pregnancy and Infant Loss Remembrance Day.  There’s a wave of light campaign: light a candle at 7pm for one hour wherever you are to create a continuous wave of light to honor and remember the little ones and their families.

Tonight, I will light a candle for Zoey and all the other borrowed angels.

Day 14: Dark/Light

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The line between dark and light when you’re traveling through this intense grief is very thin. You’re constantly teetering. And the darkness feels so much closer.  So much bigger.  So much easier to fall into.  There are so many facets of the dark:  sadness, emptiness, pain, jealousy, guilt.  Things I hadn’t even thought about.  We lived in a state of anticipated grief for so long.  We knew it was coming.  We knew every moment could be our last.  But we so wanted to soak in every moment with our little miracle.  We tried desperately to stay upright.  To not give in to living in darkness.

Now I struggle with the emptiness. I want to fill the house with her pictures and leave her room the way it is.  I cuddle her stuffed animal just to feel something against my chest.  “Clyde” even has a tuft of hair that tickles me the way hers did.  I just want to feel the weight of her again.  I don’t yet know how to mother her when she’s not here.

There’s jealousy. I saw a mom holding her baby at the Blues game the other night. I wished Zoey was there with us.  I heard a baby cry and it broke me. Friends have wonderful, beautiful babies and mine is gone.  And you can tell me to hold on to the memories. That she made an impact in her short life.   And those are beautiful things… but I still want to hold her.  Losing Zoey has been physically painful.  My heart aches for her.  I have to remind myself to breathe.

And there’s anger. I’m not even sure who to be mad at, but there are moments I am just mad.  Why didn’t Zoey get a chance? Why does a teenager get a baby she didn’t want but my much wanted, much prayed for child was taken away?  I see babies abused or tossed away and the unfairness of it all boils up.

There’s anxiety. Fear.  Irrationality.  Will we make it through?  Will our marriage survive?  If we have another baby what does that mean to Zoey?  Is it too much of a risk? I have flashbacks of the worst moments.  The walk out of her doctor’s office when we first heard the words Trisomy 18. The first time she stopped breathing.  The phone call telling us to remove her feeding tube.  Kissing her and handing her over for the last time.

There are so many things that slap you in the face when you’ve come to a place you seem comfortable. A song on the radio.  A sad story in the news.  Walking past the baby clothes at Target.  Mention of a sick child.  My heart breaks again when I think of another mom facing the loss of her child.

Then there’s the guilt. The moment you laugh at something on tv or cheer at a sporting event and feel terrible that for a moment you let the grief go.  Going back to your old routines like going to the gym and out to dinner. Does it mean you’re letting go of her too?  Does it mean you don’t miss her enough?  Last night something I said made Joe laugh. And then I laughed.  And soon we were in that deep, contagious, unstoppable laughter.  And then we cried.  Out of guilt.  And out of knowing that she’d want us to laugh together.  How do you give yourself permission for laughter and joy when you’re so overwhelmingly lost and devastated?  How do you give yourself over to the light when you feel like you need to stay in the dark?

I know the light is there. The stars shine because they are surrounded by darkness.  The sun peeks through the dark and glistens off the water.  I cling to the good things I’ve found through this journey.  I found one of my dearest friends because we share this path. I know unconditional love. I have a deeper desire to live a better life for my daughter.  I was able to look into her eyes and feel like I knew her.  Zoey is my light.  I’m her mom.  Even the darkest night can’t steal that from me.

Day 13: Seasons

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Last fall, we had the elation of finding out I was pregnant. We spent the first part of it wondering if we’d be picking out pink or blue.  We heard the heart beat for the first time.  Saw our little peanut on an ultrasound.  One year ago we were just starting to learn about Zoey’s condition.  In fact, the 10k I walked on Sunday with my friend is the same one I walked with her last year when we’d just had the ultrasound that showed a problem.  Fall was all about uncertainty.

Winter brought the confirmation of Zoey’s diagnosis. And the fear of losing her before meeting her.  I’m not a fan of winter with its cold and darkness anyway.  But there were many nights that felt colder than the temperature outside.  Yet, winter gave us the downtime to really focus on bonding with her.  We spent many quiet nights on the couch, cat on my lap, and read to her.

Spring gave us the most amazing gift. I’d say it was a warm beautiful spring day, but I have no idea—I went to the hospital on the last day of April, but Zoey held out for May.  She preferred emeralds to diamonds. After she was born, we weren’t sure she’d get to go home, but I really wanted her to breathe the air outside. One of the amazing nurses at the hospital helped us arrange a trip to the rooftop so she could feel the breeze and sun on her cheeks.  So she could feel spring breathing life back into the world as she took her first breaths.

Summer has always been my favorite season. And this past one was by far the best.  It was the summer I walked my daughter through the neighborhood.  It’s the summer we took her to the park, the petting zoo and a baseball game. The summer the three of us spent as a family.

And then she left us one late summer day. It’s been six weeks which brings us back to fall.  In the seasons to come, we’ll miss taking her to the pumpkin patch and playing in the fall leaves.  We’ll miss her trying to catch snowflakes on her tongue.  Sitting on Santa’s lap.  Mother’s Day.  Her birthday.  A lifetime of seasons without her.

Zoey left her mark on every season and I know I’ll feel her in the bright leaves of fall, the snowflakes on the window, the flowers that bloom in spring and the butterflies that flutter across my path in summer.

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Day 12: Music

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There are times I just want to turn off the radio because it seems every song is making me cry.  And there are times I don’t want a song to end.  There is music that could be the soundtrack to our journey.

First it was “Odds Are” by the Barenaked Ladies.  “Odds are we’re going to be alright”.  It came on the radio as I pulled into the parking lot at St. Mary’s to get the blood test that would later confirm Zoey’s diagnosis.  I remember sitting there crying and calling Joe to tell him it must be a sign that everything would be okay.  Turns out the odds were not in our favor.  And sometimes I feel like “struck by lightening” would have been less painful.

http://www.youtube.com/watch?v=7Sw9Fh6uk4Q

I found the song “I Will Carry You” soon after we received the diagnosis. The writer of the song shares a similar story to ours.  They chose to carry their child even though they knew she would not survive.  It’s about keeping your faith and trusting that God will care for your baby even after you have empty arms.  I have the lyrics framed with Zoey’s newborn photos and footprints.

http://www.youtube.com/watch?v=FlDUkp1Ts8A

I remember standing in the Magic Kingdom watching the Wishes fireworks show– my hand on my belly– listening to “When You Wish Upon a Star”.  Everything was so beautiful and magical, but I really wanted to pluck Tinkerbell down and slap her.  We’d been wishing for Zoey’s health and knew that no matter how much our hearts wanted it, all our dreams would not come true.

After Zoey was born, I never really sang lullabies to her.  I can’t remember the words to any of them.  But I sang the chorus of “Peace” by OAR to her.  They words seemed so fitting:

I just wanna make you laugh

I just wanna see that smile

Babe we’re only here for a little while

I just wanna hold you till we fall asleep

I want love, I want you, I want me, I want peace

http://www.youtube.com/watch?v=nS6SzfF6p_g

Picking out the music to use in her video and at her memorial service was gut-wrenching.  I chose “Can You Feel the Love Tonight” to open the service.  The Lion King holds a special meaning for me and it just seemed so fitting there at the Zoo. The others I think you just have to listen to and you’ll understand why I chose them.  Zoey was my “Borrowed Angel”.  Are there more fitting lyrics than “why do they go so soon, the ones with souls so beautiful”?  I guess heaven did need her back again.

http://www.youtube.com/watch?v=Y1hcc1QvM2Q

http://www.youtube.com/watch?v=MHStYNXnOH4

http://www.youtube.com/watch?v=COuQ8y2Adns

http://www.youtube.com/watch?v=vY7tUKMZL4o