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

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

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.

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.

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.

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.

 

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.

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.

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.

As the sun rose this morning, my little girl should be turning five months. But we lost her five weeks ago. I miss her more each day. I think the shock wears off and the terrible reality hits.

Right now I’m angry. And I’m hoping that putting it out in the universe will allow me to tuck it away. I don’t want anger to be the overwhelming emotion I feel. The anger stems from not understanding. Not understanding why she had to leave us. Not understanding why our fairytale ended so sadly. Not understanding why my friends get happy, healthy babies but mine was taken away. Wondering why she deserved that fate. Wondering why I even got pregnant just to have her stolen away. Not understanding why I have friends that also lost babies. And why there are so many moms posting pictures of the sunrise this morning.

Of course I want my friends to have healthy babies– after themselves I’m probably praying the hardest for that because I know the other side. But moments of jealousy do boil up. I also wouldn’t give up the four months I had with Zoey. I’m so thankful I got to carry her, hold her and love her. That’s not the point.

Even if we choose to have more children, I’ll always miss her. I’ll always wonder who she would be. I’ll always look at children her age and wonder why. Maybe someday it will all make sense. But today it doesn’t. I need to be angry about that if only for a minute. If I’m raging or questioning or upset, don’t try to explain it away, justify anything or tell me it’s ok. Just let me be angry. Just for today. Just for this hour, this minute. It will pass. Tomorrow the sun will rise again and I may be in a different place. But my needs remain the same. You can’t fix me. I don’t need to be fixed. I need a safe place to just be. I’m on a journey– a long, twisty, sometimes dark journey. But I know there will be moments of light– like this morning when the sun started to peek over the horizon and the pink sky highlighted the clouds. Like the photo my friend sent with the purple dot– her little girl saying hello. I’ll breathe in those moments and won’t let myself drown in the darkness– so let me just sit in it for a minute. Just listen. Just love.

After our daughter, Zoey, was diagnosed with Trisomy 18 while I was pregnant, I started writing posts on Caring Bridge to keep everyone up to date. After she passed, I felt like I still wanted to keep writing, but that Caring Bridge was no longer the right place for me. I’ve decided to try this blog site. Writing keeps me slightly more sane and helps me work though the wide range of feelings and emotions that I’ve been feeling this past year. And maybe some other mom will stumble upon it and know that she’s not alone. That the roller coaster is normal. And more importantly, that it is worth it. Zoey was worth it. I may have only held her in my arms for 3 months and 27 days, but she holds my heart forever. She’s worth the pain.

I’ve also decided to take part in something called Capture Your Grief. The idea is to take a picture and write something every day during the month of October. October is a month of awareness and remembrance for infant and child loss. If you’re interested in learning more abut the project or seeing the 31 topics, please visit carlymarieprojectheal.com It seems like the right way for me to start writing in the blog and to give me a place to express how I feel over the next 31 days.

Day 1 is Sunrise. I’ll see you tomorrow.