Day 11: Alter

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I’ve wanted to work on a place in our house to carve out a space just for Zoey.  I’ve moved around furniture, bought new pieces, checked out different places in the living room and office. I want a special place for photos and mementos. I want something beautiful.  A place that reminds me of her.  I want a place that can move and change with us. Nothing ever feels quite right.  Is it just because I have no design skills? Or is it something more?  I’m not sure I’ll ever feel anything is beautiful enough to represent what Zoey means to me.  And it bothers me that the reminders of the life that has changed me so deeply can all fit on a three shelf bookcase.

But I set out to put something together today.  Like I said, I’ve been trying to figure it all out but today’s prompt pushed me to at least make a start.  It’s a work in progress.  I’ll bring back shells and sand from the beach near where we spread her ashes.  I’ll find things that remind me of her.  I’ll earn that medal at the Princess race for her.  But for now there’s a bookcase that holds some of her photos, a few of the wonderful gifts we’ve received, a box with her blankets, books and bottles.  And her ashes.  They are there in little paper turtles that can be released into the water when we decide where to take them.

I believe I’ll always want a special place for Zoey in our home. Somewhere I can visit to remember.  To look back on our time with her. To make sure she’s always a part of our family. To pray.  To cry. To remember the joy she brought us. To celebrate her life.

Day 10: Support

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Joe and I are lucky to have great people in our lives– wonderful family and friends.  They’ve provided us with much love– hugs, cards, letters, texts, calls.  Losing a child creates a situation most people do not know how to handle, though.  Including us.  The day Zoey passed away, I asked for privacy.  Those wishes were respected.  I was surprised, though, how few people reached out to me in the following days.  Maybe they were waiting for me to say we were ready.  Maybe they didn’t know what to say or how to approach us.  I understand.  I honestly didn’t know what I wanted or needed either.

What I do know is that nothing you say or do can make me sad.  I’m already sad.  Talking about Zoey or our loss does not make it worse.  In fact, I appreciate it when someone mentions her name to me. I don’t want her to be forgotten. I don’t want to ignore that she was here.  I don’t want to ignore that she’s gone.   There are moments I feel like our time with her was all a dream.  If nobody ever says her name, that makes it even more dreamlike. You don’t need the perfect healing words to talk to me.  Those don’t even exist.   There are times I want to talk and times I don’t. There are situations I can’t handle right now. Please respect that and know it isn’t you– it really is me– and I’ll take myself out of those places if needed.   The holidays will be hard.  Even Halloween is hard. I wish I was picking out an adorable costume and taking her to the pumpkin patch. I need to protect myself, so please be gentle with your understanding.

Keeping busy seems to work for me.  It is not what works for everyone.  Yes, I went back to work. Yes, I went back to the gym.  But I’m still hurting.  Some people need to go to work.  Some need to stay in bed all day.  Please don’t judge either way.  Neither person is handling their grief better or worse than the other– just differently. My outward demeanor does not tell the whole story.  You don’t see me curled up on the couch with Zoey’s stuffed Clydesdale.  You don’t see me cry on my way to work every morning.  I’m finding my way and I’m doing what I can.

I have a group of friends that have been putting up with me for years– even though I whine and complain every time I see them.  They are my trail therapists.  The ones I run with.  They have taken Zoey’s spirit with them on 5ks, half marathons, marathons and an Ironman.  I can’t tell you what I felt when our friend said the words “Zoey you are an Ironman” after his last race.  There are no words to express what it means to have your friends tell you your daughter was their inspiration to keep going.  That she gave them strength.  These are some of the most determined people I know.  To think my daughter made a difference to them is overwhelming.  I also know they’ll support me as I train for Zoey’s race.

I’m very lucky to have very understanding and loving people in my life.  The ones that know when I need to talk about Zoey and when I need to talk about nothing.  Their support, their love, gives me strength. I lean on them more than they know. I treasure my time with them–whether it be via text, call or dinner.

I know I’ve mentioned him before, but the greatest support is my husband.  Who knew when we met that we’d end up here?  I wouldn’t change a thing.  Twice in my life he’s had to pick me up off the ground and help me stand.  He really took those vows “for better or for worse” to heart.  He’s an amazing father to our daughter.  Seeing the way he looked at her melted me every time.  And I know he’ll stay by me for every moment of heartbreak and every moment of joy in the coming years. I’m beyond lucky. Beyond blessed.

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Day 9: In Memory

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I have countless photographs of Zoey. I created one album with at least one picture from each day of her life.  We have amazing videos our friends put together of both her life and her memorial service.  Immediately after Zoey’s death, these projects gave me a direction, a focus when I had nothing else.  Organizing her memorial service also gave me a purpose.  I worried more about it being perfect than I ever worried about our wedding ceremony and reception.  While getting the anchor tattoo and designing my “Zoey ring” provide me with permanent reminders of Zoey, the actual process didn’t last long.  I was again left with no real direction.  I need to keep moving– that’s my coping mechanism.  Going back to work helped some, but it didn’t mean anything to Zoey. It didn’t honor her in any way.  It doesn’t keep her close to me.

My friends have been running races in her honor (again, I’ll talk more about them another day).  I need to run one for her too. I set my mind to do another half marathon.  The others have been for me.  This one would be for her.  But the only one I could really see as the perfect fit is the Disney Princess at Disney World.  We took Zoey to Disney while I was pregnant with her.  I needed her to feel the magic.  Meet Mickey Mouse.  Meet the princesses.  And after all, Zoey is our little princess.  So on February 22, I will run it for Zoey.

As part of the race, I will be fundraising for Children’s Miracle Network.  They provide funds to both hospitals that provided us with support through my pregnancy and Zoey’s life.  My sweet friend, Nicol, who is crazy for doing this– but is even more amazing– has agreed to run and fundraise with me.  I didn’t even have to talk her into it.  I sent her the link and she registered.

Please consider helping us reach our goal.  Both by cheering us on when you see us out on the road in the middle of winter logging our training miles to supporting our fundraising efforts.

I do this in memory of my daughter.  My princess– the most beautiful one of them all.  Every step, every drop of sweat, every mile will help me feel close to Zoey, help me heal and help me honor my daughter.

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

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

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(I’m pretty sure this photo was taken right after Cinderella asked when we’d be bringing Zoey back to see her…)

Day 8: Resource

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When we first received Zoey’s diagnosis, I turned to the internet.  As you can imagine, it provided mixed results.  From the first time we heard mention of Trisomy 18 and read the words “incompatible with life”, internet searches provided little hope.  Support organizations are out there too, but I didn’t find them helpful.  There is a divide even within the Trisomy community over how much intervention to pursue.  While I believe you need to do what you honestly feel is best for your child, it seems that some people don’t support other’s choices.  Message boards are not for me either.  If you’ve ever read the comment sections on web stories, you can imagine why.

My best resource: other moms and families in similar situations to ours. The ones that open up their hearts and their lives to you.  Women like Janet who started Allison’s Angel Gowns in honor of her daughter.  She’s a great mom to all her daughters: the ones here and her little angel.  She inspired the idea to make Zoey a dress out of my wedding gown and provided the opportunity to take her pictures in my other dress.  These are some of my favorite photos and favorite memories. She’s making a difference in the lives of other bereaved moms.  Providing them not only a beautiful gown for their precious babies, but also comfort and friendship.  She’s honoring the life of her daughter every day by sharing her story and sharing the gowns.

I also want to tell you about another family who lost their daughter to Trisomy 18.  They gave their daughter a beautiful life for the 31 days she spent with them.  They continue to honor her memory and cherish her life. I wish I’d known them then, been able to hold their sweet baby, but we met around Christmas last year just a few months after Hattie passed away.  Andrea has become my safe place– the one I can say anything to without judgment. We belong to the crappiest club in the world, but if you’re going to suffer you might as well suffer with someone who can make you laugh through it.  She’s always there to share the pain.  And share the joy.  And most often, to share the prayer that our girls are together and watching over us.  I think she’s really “stupid”, but I love her (along with Kevin, Miles, Hattie and Matilda!).

It takes a strong family to open up your grief journey to another family facing similar circumstances.  It’s scary.  You take a risk not knowing if the other family shares your beliefs about how to care for your child.  Wounds are re-opened.  A path already survived is traveled again.  But these families give others hope.  They confirmed that our decision to carry Zoey was the right one.  They showed us that we’d be able to laugh again– even if it hurt.  They showed us that life will go on, forever changed but worth living.

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Day 7: Sacred Place

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I don’t yet have a place I go to be with Zoey– to feel her presence, her love.  We decided to have her cremated so there’s no grave to visit.  I feel this was the right decision. We won’t have the guilt of not visiting her grave enough.  Of not putting flowers out every holiday.  The kind of guilt I have for not visiting my dad.  But he’s not really there and she wouldn’t be either.  Zoey is getting a brick in her honor at the Zoo. It isn’t there yet, but maybe we’ll visit there someday so we can see her name written.  She spent most of her life at home, but we never really used her bedroom and other than the first few nights without her, I haven’t even been able to sit in “our” chair.  I suspect the place I’ll feel closest to her is where we spread her ashes.  I’ve always felt most at peace near a beach anyway.  I’ll use the same words I used at her service:  We’re going to spread her ashes somewhere beautiful.  We’ll take her to the ocean that Joe and I love so much so that when I picture her, I can imagine the sun kissing her little cheeks and that sweet dimple.  Where she can chase a sea turtle around the cove.  Where she can watch dolphins dancing on the horizon.  And where she can let the sound of the waves meeting the sand gently ease her to sleep.

And when I return to the islands, I will feel her there.  In the wind, in the sun, in the water.

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Day 6: Books

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just a reminder: my daily prompts are from http://carlymarieprojectheal.com  Visit the site for more information

Day 6: Books

After Zoey’s diagnosis, I came across the song “I Will Carry You”.  It led me to the book by the same name.  I felt connected to the author as we shared similar journeys.  She also knew her child would have a shortened life expectancy.  She also hoped the doctors were wrong.  She also chose to carry her child despite the diagnosis.  She also made memories with her unborn child.  I was not alone.  Someone else took their unborn child to Disney World.  Read to her.  Told her stories.  I wasn’t crazy after all.

I just downloaded “Grieving Parents: Surviving Loss as a Couple”.  I’m not far in, but it’s already helped me realize a few things.  One being that the suspicion my memory and mind are not functioning properly is completely valid.  I’m forgetful, cloudy,  and disjointed at times.  This is normal. Or at least my new normal.  I also see that Joe and I grieve differently.  I knew this but I need to work on just accepting it.  We’re in this together but may deal with it very differently.  I need to let him find his way– not force him into mine.  We need to be accepting of the other’s path.

The most important books, though, are the one ones we read to Zoey while I was pregnant and after she was born.  That was our time together–just the three of us (and sometimes a cat).  Almost every night Joe and I would sit on the couch, his hand on my belly, and we’d read to Zoey.  We asked people to send us books- and they did.  Everything from cute stories about the day the crayons quit to stories about a special little lamb to original stories people wrote for her.  We laughed with some.  We marveled at how some made it to publication.  And we cried at more than a few.

We read “God Gave Us You” to Zoey before she arrived, at the hospital and once she was home.  I have her tiny footprints inked inside the cover.  The last book we read to her was “Wherever You Are My Love Will Find You”. As I said at her memorial service, the last line is “you are my angel, my darling my star…and my love will find you wherever you are”.  Zoey is my angel.  And I continue to pray that my love is finding her now.

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Day 5: Journal

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I write because sometimes it’s the only way to express how I’m feeling without my thoughts wandering too far.  When I try to talk, I get distracted or sad or scared and I stop.  When I write it down, I can walk away. I can come back.  I feel more open when I write.  I’m not worried about being judged on what I’m saying.  I can put on paper what I don’t have the words to say out loud.  Today my thoughts are in a million places. They are with my amazing friends who honored Zoey today on their runs– but I want to save them for another day.  They’re with Joe who just left on a work trip again.  Leaving me in the house alone and leaving him alone in a hotel room.  And alone feels different now.  And my thoughts, as always, are with Zoey. With how much I miss her. How I ache for her.  But it’s a beautiful day and I’m going for a walk so I can feel the sun on my face and the breeze on my cheek and wonder if it’s her sending me a kiss.

Day 4:Now

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Now: Who am I now?  It’s hard to know. The loss is too fresh. The wounds too open.  I know I’ve changed– I am changing, but I don’t know where I’ll be tomorrow, next week or next year.  Bitter? Angry? Hopeful? At peace?  I want to be in a good place. For me, for my family and especially for Zoey.  I want to live a life she’d be proud of.  I want to honor her memory and her life.

I’m not sure where I belong right now.  My hold habits feel uncomfortable. Like I’ve slipped back into a life that doesn’t include Zoey.  But it does.  And it should. But instead of coming home to my sweet baby girl, I come home to an empty house.  It’s so quiet.  Friendships are changing.  I have new ones that are helping me on this path because we’re in the same crappy club.  But I have other friendships that I just don’t have the energy to nurture right now.  It’s nothing personal but social interactions can be really exhausting.  I’m not sure the support group world is where I belong either.   They all seem so sad.  Because they are.  They are filled with people who suffer unimaginable pain.  Or unimaginable for those who haven’t been there.  I do more than imagine it.  We attended an event this morning for those who have lost a child.  I’m part of them now.  My daughter’s name is on the shirt (though misspelled– maybe her little joke on us?)  We released a balloon– a symbol of releasing the grief.  Maybe there’s healing in shared pain, but it doesn’t feel right at the moment.

Now I’m a mother.  But without a baby to comfort in the middle of the night. Without a child to teach to tie her shoes.  Without my little girl to bake cookies with.  I’m feeling a bit lost right now navigating a world without my daughter.  We’re a family with a missing piece.  I’m a soul looking for comfort and peace.

Day 3: Before

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Before: you could divide “before” in so many ways.  Before Zoey left us.  Before she was born.  Before her diagnosis. Before I was pregnant.  It’s an ever evolving life story.  Where do you begin?  Before getting pregnant, Joe and I had a good, strong marriage.  For this I am thankful.  We traveled through the Caribbean and Hawaii.  We went where we wanted, when we wanted.  I’ve always felt the most peaceful at the beach so we found our way to one often.

Then we found out we were expecting.  And life changed.  But we planned on taking our new little one to the beach with us.  We even had a trip planned while I was pregnant.

Then we went to the ultrasound at 12 weeks and the tech saw something.  And life changed again. Priorities changed.  The world changed– even if just for us.  The last shred of naivety was gone.  My daughter would not survive.  I was not clueless to pain before this.  I’d suffered the sting of loss.  My great-grandmother who I adored.  My father who I was so close to.  But hearing those words stung in a way I never could imagine.  I want to take this moment to apologize to all my friends who had miscarriages.  I didn’t know.  I didn’t understand how attached you became to someone you hadn’t met.  But I understand now.  And I’m sorry if I was not there for you.  If I didn’t have enough empathy.  If I was one of those people that said something not at all comforting.  I love you all.  And I understand your pain now.

I feel like I’d always been fairly grounded and had a decent grasp on what really matters in life.  Zoey’s diagnosis solidified that.  Zoey mattered–very little else did.

Before becoming Zoey’s mom I was hesitant about the role of “mom”.  Would I like it? Would I be good at it? I didn’t really identify with the extreme anxiety infertility causes some women because I really thought I’d be okay if we didn’t have children.  But all that went away the moment I held her.  I adored being Zoey’s mom.  I loved who I became as soon as I earned the title “mom”.  The fierce loyalty to my child and husband– my little family.  The pride I felt  for her fighting spirit and her beautiful soul.  I loved being her guardian. Her protector.  The person that loved her in a way that no one else could.  She gave me more of a purpose.  She showed me true, unspoiled, unconditional love.  And I adored every part of her.  Those soft little feet.  Her little lips.  The sweet dimple. Those beautiful, piercing blue eyes.

I’m Zoey’s mom.  I will forever be her mom.  And I believe she is the best part of me.  I think I do a decent job at being a wife, daughter and friend.  But I’m most proud of the time I spent mothering her. And I continue to be her mom– even though she’s not here for me to raise.

We knew we were on borrowed time with Zoey.  We knew we’d have to give her back.  Maybe that’s why we loved her so strongly, so deeply.  Or maybe that’s just what being a mom is all about.

Day 2: Heart

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I carry my baby girl, Zoey Tamsyn, in my heart.  I will always hold her there, but I ache to hold her against my chest where we always were heart to heart.  Zoey’s heart was broken–it had a hole in it  Now mine in broken too.  When I felt her heart take its final beat, I thought mine would stop too.  There are times I swear it does.  Times I have to remind myself to breathe.  Times I actually think my heart is splitting.  But my love for her is stronger than the pain and stronger than the fear of living without her. I will carry her in my heart until I can hold her again.