Capture Your Grief: Day 21. Sacred Space

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I feel at peace by the water. I feel close to her when I can walk along the waters edge. There’s something about the ocean air.  The sound of the waves.  And the water—the color of her eyes.  The wonder of a world you cannot fully see or understand. Joe and I often talk about picking up and moving to be closer to the ocean.  I don’t know if that’s the right decision or not.  I don’t know what it would be like to not live in this house—the only one Zoey ever lived with us.  Her room is the same.  It took us months to even unplug the wipes warmer (a gadget Joe insisted on having for his little princess).  And the truth is, she’s everywhere here.  I have her photos and reminders of her on our mantel, a have a bookshelf in the office with more gifts and photos. Clyde and Zoeybear sit on the back of the couch. There’s not a room in this house that does not have a reminder of Zoey.  I even carry a tiny Squirt plush with me in my purse.  I wonder what it would be like to pack up those things and move them.  And I wonder what we would do if we had another child.  Would that baby just slide into the room barely used, but still full of Zoey’s things?  I don’t dwell on the “what if” much. I can’t.  It’s not worth it worrying about something that may not happen.  And if it does, we’ll find our way then.  But it has crossed my mind how we integrate Zoey into our home and into our lives moving forward.  She will always be a part of us.  Always be our daughter, but I don’t know what that will look like years from now.  For now, I take comfort in having reminders of her all around me.

Capture Your Grief: Day 20. Forgiveness + Humanity

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Kauai, Hawaii 2012

For a long time I believed that forgiving someone meant I had to release everything about what they did or said to me and let them back into my life. I’m slowly realizing that I can forgive someone for whatever they’ve done—insensitive remarks, hurtful behavior, but that does not mean I have to subject myself to their repeated transgressions.  Releasing the hurt and anger frees up room for better things in life. I can give up the power they had over me without making room for them in my life again. I realize that I opened up my life pretty wide on this blog.  And yes, to some degree it means I also open myself to criticism and judgement from others who do not understand my journey or who refuse to just listen.  I’m sorry they never learned empathy.  But I can forgive them.  Try to understand their humanity.

Forgiveness has not been an easy part of this path. Especially when you’re just trying to keep yourself from drowning.  You expect everyone to be loving and supportive.  And it’s disappointing to learn that some people are not.  But the hardest part is forgiving myself.  Your mind tells you many things when you’ve lost a child.  And one of the biggest lies is that you were responsible for their death.  Deep down I truly believe we did everything right for Zoey.  Joe and I made tough decisions and all were made from love, but there’s still that nagging thought: “could I have done more?”  There’s still guilt.  Should we have pursued other options?  Did I miss something? Was she ever in pain?  I don’t read most of the stories about kids with Trisomy 18 that defy the odds. I can’t subject myself to it because it always makes me wonder.  It always ties my stomach in knots.

I remember back when we tried to get pregnant the first time.  And I felt so much guilt over repeatedly failing.  And I feel that way again.  Because I know it is me—it’s my body that has the problem.  And you can’t listen to people give you advice (no matter how uninformed or ridiculous it is) over and over without it eating at you a little bit.  I know I’m not doing anything wrong. And I know that I did what was best for Zoey.  But knowing that and shutting up those little voices are two different things.

I wrote a letter to Joe at the grief retreat.  It was based on a Hawaiian practice of healing.

“Hoʻoponopono” is defined in the Hawaiian Dictionary as “mental cleansing: family conferences in which relationships were set right through prayer, discussion, confession, repentance, and mutual restitution and forgiveness.”

The letter and Ho’oponopono are based on a couple prompts: I’m sorry. I forgive you. Thank you. I love you. I hope. I had nothing to forgive him for.  He is an amazing father to our child.  A wonderful husband.  I am slowly learning to offer myself the same belief.  If I want to change my world, it comes from within.  Be thankful for the amazing gifts Zoey gives us.  Forgive myself. Love myself and the mother that I am.  And always hope.

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Swimming with sea turtles in Kauai.

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Capture Your Grief: Day 19. Music

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I was in Pilates one morning, and heard this song. I sat there, crying.  It was so perfect to how I was feeling.  Looking for signs to tell me she’s with me.  Tired of being strong.  Wishing for just one more minute…

Beam Me Up- Pink!

There’s a whole other conversation going on
In a parallel universe
Where nothing breaks and nothing hurts
There’s a waltz playing frozen in time
Blades of grass on tiny bare feet
I look at you and you’re looking at me

Could you beam me up,
Give me a minute, I don’t know what I’d say in it
Probably just stare, happy just to be there holding your face
Beam me up,
Let me be lighter, I’m tired of being a fighter, I think,
A minute’s enough,
Just beam me up.

Some black birds soaring in the sky,
Barely a breath like our one last sight
Tell me that was you, saying goodbye,
There are times I feel the shivering cold,
It only happens when I’m on my own,
That’s how you tell me, I’m not alone

Could you beam me up,
Give me a minute, I don’t know what I’d say in it
I’d Probably just stare, happy just to be there, holding your face
Beam me up,
Let me be lighter, I’m tired of being a fighter, I think,
A minute’s enough,
Just beam me up.

In my head, I see your baby blues
I hear your voice and I, I break in two and now there’s
One of me, with you

So when I need you can I send you a sign
I’ll burn a candle and turn off the lights
I’ll pick a star and watch you shine

Just beam me up,
Give me a minute, I don’t know what I’d say in it
Probably just stare, happy just to be there, holding your face
Beam me up,
Let me be lighter, I’m tired of being a fighter, I think,
A minute’s enough,
Beam me up
Beam me up
Beam me up
Could you beam me up

Capture Your Grief: Day 18. Seasons + Symbols

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Training for a race in February helped get me out of bed many cold, dark mornings. I would have much preferred to stay in bed. Hide from it all. But knowing I was doing that race for her pushed me.

Seasons

Summer is when I lost her, but it’s winter that gets to me.  Something about the seemingly unrelenting darkness.  The cold wind that nips at your bones—it amplifies the ache in your soul.  Winter is when the piercing pain of losing her set in.  When the reality of day to day life without her slapped us in the face.  I made a conscious effort to keep moving last winter. To get up and run.  To get out of bed. It would have been very easy to stay inside, tucked under the covers and hiding from the world.  But I knew I had to face it.  I’m doing the same this year.

Symbols

My mom went to Rome a few years after my dad died.  She came home and told me about anchors appearing in the catacombs.  The story resonated with her and then again with me.  I don’t remember choosing anchors as our symbol for Zoey—it just seemed to make sense.  “We have this hope as an anchor for the soul, firm and secure” Hebrews 6:19. Hope.  That’s what had for our little one.  It’s what we continue to have.  And as I’ve said before, what we hoped for has changed many times, but we’re still anchored in hope.  And the truth is, sometimes hope is all we have left.  We have to believe we’ll see her again, or this world just seems too long and too hard without her.

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Capture Your Grief: Day 17. Secondary Losses

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The pure excitement of pregnancy was lost the moment the ultrasound tech saw something was wrong.  And I know that even if we are able to have more children, the naive feeling that everything is fine is gone.  There will be fear.  Fear that it could happen again. That we could lose again.  I know it’s worth it—because I know the love I have for Zoey.  But I also know the pain.

Uncomplicated, unrestricted joy. It’s gone.  Yes, I still feel happiness. I still feel joy, but there’s always a catch. There’s always a little guilt.  At least a little sadness.  Knowing she should be here. Knowing things would be so different if she was here.  And knowing how quickly it all can be lost.

Capture Your Grief: Day 16. Creative Grief

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I have a tattoo for Zoey—an anchor on my wrist.  It’s a constant reminder of her.  And a starting point for me if someone asks what it means. I can explain. I can talk about her.

And I have a necklace. I can’t take credit for it—it was a gift, but it’s perfect.  An anchor, of course, with her name etched on one side and intertwined hearts on the other.  And it just reminds me of how she’d lay with me—heart to heart.

Another friend created a one of a kind piece of art for us and it’s amazing.  It features a set of three panels. One representing Joe, one for Zoey and one for me.  And on it is an anchor and a chain connecting us all.

Further proof that my friends are much more creative and talented than I am, is the stone we’re working on to place where my dad is buried.  When I saw the artwork the monument company created, I cried.  It just didn’t fit my sweet little girl. It was harsh and angry.  Thankfully, my friend stepped in and has worked to create something that I really love.  It’s perfect and sweet (as perfect and sweet as a piece of stone can be) and is everything I pictured.

I put a lot of pressure on myself when creating things for Zoey. I want everything to be perfect and as wonderful as she is.  I was more nervous planning her memorial service than I was our wedding.  But I’m proud of what I do for her.  I’m proud of my involvement with Wings and BJC’s Hospice House.  I’m proud that I’m running in her memory and raising money for Children’s Miracle Network in her honor.  I’m proud of this blog.  It definitely helps me express what our journey has felt like.  A good friend of mine recently opened up to me about her own loss and it overwhelmed me knowing I could help her even in a small way.  It has served its purpose.  She’s not alone. I am not alone.  We’re in this together and we’re allowed to talk about our babies and grieve them and love them and mother them.  For that I am so grateful.

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Capture Your Grief: Day 15. Wave of Light

  Tonight I lit a candle in memory of my beautiful blue eyed princess, Zoey Tamsyn Waymire and for all the babies who left us too soon. The ones who never got to take a breath and the ones who didn’t get to take enough.

Love to all the moms & dads who are hurting.  While all of our stories are different, we all ache for our sweet children–no matter how long we had them. We will all always wonder how things could have been.

We love you sweet ones. We miss you. And we hope you feel our love wherever you are.

Capture Your Grief: Day 14. Express Your Heart

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I had a hundred ideas on what to write today, but couldn’t focus on just one.  I’m very disjointed and disorganized right now (my thoughts, my life, my purse…). But when I got home today, I opened the mailbox to pull out a surprise little package that solidified what I wanted to tell you.  Today, I just want to express the extreme love, respect and admiration I have for the people at the hospitals we’ve been involved with on our journey.  The doctors, nurses, social workers and other staff made all the difference in our journey and in Zoey’s life.  There are too many to mention by name. And I don’t even know some of their names. But I want to tell you just a few stories.

At one ultrasound early on– before we even had an official diagnosis– I remember just crying.  I apologized to the doctor and said I didn’t know why I was crying like that.  She patted me on the hand and simply said “because that’s your baby”.

Our nurse, Jenny, who honored Zoey during her half-marathon a few days after Zoey was born.  From the moment she called me to introduce herself and set up our first appointment, I knew we were safe with her.

Our NICU nurse who stood by us through a seemingly endless wave of doctors and therapists during Zoey’s first few days, just to reassure us we were making the right decisions.  The same nurse who lovingly helped us bathe her and arranged for us to take her outside– when I still didn’t know if she’d ever get to leave the hospital and I desperately wanted her to feel the sun on her cheeks.

Our hospice nurses.  These people give their lives to pediatric hospice.  Let that sink in for a minute.  They go in to house after house to meet child after child.  They become part of their family.  And they say goodbye over and over.  But they just keep loving these kids and their families.

A few weeks ago I was able to attend a program put on by Cardinal Glennon where I toured the hospital, went on “rounds” and met with doctors, nurses and patients.  I toured the Bob Costas Cancer Center, watched a neurosurgery, met with the autism center and a plastic surgeon.  What they are doing medically is incredible. But what really stood out to me was the passion all of these people displayed for what they were doing.  Their eyes lit up when you asked them questions.  They were all so dedicated to helping our kids and to serving the whole family.  On the rounds, we were able to witness a team removing a tumor from a child.  Before we went in, one of the nurses was explaining that it can be very difficult to see– you’re seeing a child at their most vulnerable.  I pulled her aside and told her that I honestly didn’t know how I would handle it because I’d lost my daughter.  She grabbed me close to her, said “then you’re with me” and held my hand as we walked in and she explained what was happening.  She didn’t know me.  She didn’t know my story.  But she wanted to make sure I, a random person on this tour, was okay.  It was like that over and over that day.  I wish I could fully express what an incredible experience it was.

During the expressive therapy exercise at the grief retreat Joe and I attended, where we created “our world”, we had to choose things that represented our life now.  Joe and I immediately locked in on a figurine of Squirt the turtle.  It became a joke the rest of that afternoon that I was going to steal the turtle.  I showed one of the social workers the artwork my friend created for Zoey’s headstone featuring a similar little turtle.  And today in the mail, I opened a package with that little turtle inside.  And I laughed.  And then cried.  And was reminded once again just how much these people give and just how much they truly want to help.

One of the things that stuck out from my tour at Cardinal Glennon was a comment made that “we can’t cure every child, but we can care for every child”.  I witnessed this repeatedly during Zoey’s life and again since her death.  They knew they couldn’t save Zoey.  But they loved her anyway.  They respected her life.  And they do it again and again.  They see so much hurt, so much pain.  But they never looked at our story as a failure.  Because love is not failure.

From the bottom of my heart, thank you to the people at Cardinal Glennon, St. Mary’s BJC’s hospice, and Children’s Hospital. You cared for me and my child and you continue to do so more than a year later.  You are beautiful and remarkable. Thank you for honoring her life.  Thank you for being there at our darkest moments.  For helping us keep our head above water and stitching up our broken hearts.  And thank you for that little turtle– and everything it represents!

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Capture Your Grief: Day 13. Regrets + Triggers

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Regrets

Right after Zoey died, Joe and I got in the car and we just drove.  That evening, I posted to the blog that she’d left us and that we wished to have privacy.  I didn’t want people at my door. I didn’t want people thinking they needed to come sit watch over me.  The only problem: by the time I needed someone to be there, everyone seemed to move on.  And by then, nobody really wanted to talk about it.  Or at least that’s what it looked like from my perspective.  I dove into planning her memorial service.  And then I just kept moving.  I don’t remember stopping.  I’m not sure if I’ve really stopped since then.  Maybe that’s what I needed to do.  Maybe that’s what’s kept me sane.  But I wonder.  And I wonder if it made it look like I didn’t need anyone.  Or that I didn’t love her enough to grieve “properly”.  Not that it matters.  I loved my daughter—I LOVE my daughter– and someone else’s perception of how I handle the grief of losing her makes no difference.  And I regret not knowing that sooner.  And not recognizing it within my own marriage.  Joe and I grieve differently.  Talking about her, looking at pictures, mentioning her all have different reactions for us both.  And I wish I would have stopped sooner to check in with both of us.  I needed to ask more what he needed—or how what I was doing made him feel.  Because the fact is, there are some things you cannot compromise on—you have to learn to live with how the other person handles their grief when it’s not your way.  I’m thankful for a strong marriage.  Because these things could easily eat at you.  But my husband is forgiving and gracious—way more so than me.  He clearly loves Zoey and misses her deeply, just as I do.

Triggers

I hate Target.  Don’t get me wrong, I still go to Target, but it has knocked the wind out of me more than once.  Why? All those damn little outfits hanging on display that Zoey would have looked so cute in.  All of the things she’ll never get to wear.  Toys she won’t play with.

Sometimes you look through the photos and smile.  And sometimes you sob.  You can hear a baby cry and you want to collapse to the floor.  Or it can make your heart smile remembering how you could soothe your own baby girl.  A butterfly flitters across your path and you whisper “I Love You, Zoey”.  And then you’re driving down the highway and one flies into your windshield.  (Yes, I brake for butterflies.  And cats, dogs, frogs, a wayward leaf…)  Joe and I went to the baseball game the other night. And it all came back.  Carrying her through the concourse and watching her eyes grow bigger, meeting Fredbird, creating Clyde. Sweet memories, but it ripped at my heart.  Day to day, you never know if something will leave you weeping, or leave you smiling at the memory.  Often, both.

Capture Your Grief: Day 12. Normalizing Grief

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We took our daughter’s ashes to the same beach where Joe and I got married.  We’d placed them in biodegradable urns—one for each of us to kiss and then place in the water. I watched them slip under water.  And I still wonder if they washed up on shore somewhere. If a wayward snorkeler found them.  Would they have known just to let them be? That these were not just some craft someone tossed aside?   That these were the last physical remains of my daughter on this earth?  There was a little beach off to the side from the main beach at the resort.  A sweet little spot that once housed a sea turtle that had washed up during a hurricane and then lived the remainder of her life there.  Hours after we returned from the boat ride that took us out farther from shore to place her ashes, I made Joe walk to that beach with me—just to make sure the turtle urns had not washed up.  Yes, the rational side of me said they had disintegrated by that point and her ashes were in the sea.  Yes, it said that if they were to wash up, they certainly wouldn’t be at that small spot.  But that’s the thing with intense grief.  It isn’t always rational.  On Zoey’s first birthday, we went to be by the ocean.  As I stood in the water, tears streamed down my face.  I couldn’t stop myself from thinking: “I left her out here in this immense ocean all by herself. I abandoned her. What kind of mother does that?”  Irrational. I know that.  She was already gone.  But the urge to mother my child did not stop when she died.

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Looking out at the little beach we walked to after releasing Zoey’s ashes.
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The same little beach in 2008.

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