Trisomy 18.  Had you ever heard of it before learning about our journey?  I hadn’t.  I’d probably run across it when reading about genetic testing early in my pregnancy. I’m almost sure they mentioned it in passing during our pre-testing conversations, but I didn’t really know about it.  And then.  Then I quickly learned more about it than I ever wanted to know.  But we were alone.  It was something nobody I knew had ever experienced. Nothing like this.  When word got out, a friend of mine said he knew someone.  Knew someone who had recently lost their little girl to Trisomy 18.  And that she’d be open to talking to us.  And just as suddenly as we found ourselves lost in a dark wood that we didn’t understand, we saw a glow. Joe was terrified to meet them.  I didn’t feel that way—somehow I just knew it would work out.  And sure enough, when we met them in that dark wood, they held out a light to us and have walked with us ever since.  Along the way, we’ve come across some others wandering in the woods and we walk with them too.  It’s the stupidest club.  We’re the worst.  But I am so grateful for their love and support.  And inappropriate jokes.  And them letting us know that it’s ok to laugh.  And to cry.  And to eat brownies.

Websites I’ve found helpful:

carlymarieprojectheal.com (where I get the prompts for the Capture Your Grief project)

stillstandingmag.com

Writing has been my release for as long as I can remember.  I wrote in a journal when I was much younger.  I found it a few years ago and laughed at the over-dramatic non-sense of it.  I hope what I write now has more meaning, more authenticity.

When we first learned of Zoey’s diagnosis, I began writing a blog just to keep everyone up-to-date.  I knew there were many questions and I wanted to control the conversation. I didn’t want misinformation spread like happens so easily.  But I found it very therapeutic.  Yes, some days it was exhausting recounting a day of tough conversations or more news, but it allowed me to express just a hint of my inner turmoil.

I’ve continued because it is still healing to me.  I know I’m not saying anything remarkable, or anything that hasn’t said before. I’ve just tried to express myself honestly, without too much reservation, in the hope that if another mom who is hurting should stumble upon it, she’d feel comfortable—like I was a friend.  And that I wasn’t trying to push an agenda or tell her how she should feel. Just an honest conversation about immense pain—but also about the even greater love we have for our little ones.

For many years after getting married, it was just Joe and me.  And we were good—really good.  But Zoey made us better.  Our little family grew to three and it’s still three even without her physically present.

Joe and I went to a couple’s grief retreat last weekend and one of the expressive therapy exercises had you create your “world” as it is now.  We had representations of each of us and of Zoey.  But I also included an anchor—and next to it a symbol for another child.  What most of you don’t know (but I’m sure you were wondering—trust me I’ve heard the question enough to know that some of you are) is that Joe and I have been trying to add to our family of three.  But it hasn’t been easy.  It is emotionally taxing and there is a good chance that there will come a time when I say enough.  A time when we decide that our family of three is enough.

It is not a decision we made lightly.  It took us three years to get Zoey and anyone else who has dealt with infertility knows it isn’t always a pleasant path.  The thought of adding another child also opens up a world of questions.  Would it change our relationship with Zoey?  Will it look like we’re just trying to replace her (we’re not).  Will people think another child fixes the wound losing her caused us (it doesn’t).  And there’s just the fear of it happening again.  What if we lost another child? Now I know too much– I know too many people who have lost their children to so many different conditions.  But I also know the love I have for her.  And know that it is worth the risk.  I know what being a mom is about.  What growing our family is about. And the love outweighs the fear.  Love always wins. Hope wins.

Pictures from my grandmother’s 90th birthday in 2014.  The bottom photo has her granddaughters, great-granddaughter and great-great-granddaughter!!  I am in awe of this woman.  She’s now 91.  Not only is she in remarkable physical condition for her age, but she’s also one of the strongest, most loving people I know.  She’s lost so much but keeps giving her heart over to love.  If I have any strength, any grace, it’s because of the example she and my mother have set for me.

Our “world”. 

I’ve often worried over the last year that I will start to forget the memories I have of Zoey.  And honestly, there are things that slip.  I will of course remember her and the love I have for her, but those small things that made day to day life what it was for us: will I lose that?

I remember seeing that little beauty for the first time.  Joe brought her to me and I still can’t believe it—we’d created this tiny human.  When I finally got to hold her I think I was still in shock. I’d prepared myself for the worst—but holding her—alive– was better than anything I could have imagined.

When she was hungry, she’d punch her little clenched fist in the air.  We called it baby power.  When she would look around, she’d scrunch her forehead.  And when she looked at Joe, you could just see that she adored her daddy.  She would give us “looks” when we tried to feed her—I’ll always marvel at how a little 6 pound baby can express so much without a word.  She had a soft little coo and even her cry was cute.  I loved how she’d stretch her legs and her bunny feet.

Zoey was not a fan of bath time.  She seemed to enjoy the first time we washed her hair in the hospital.  And the first time I moved her bathtub to the kitchen sink she enjoyed looking at the lights above the sink, but every other time she was fussy.  I loved how her hair was dark and tame until her bath and then it would be fine, light and wild.  She looked like a different baby.  I remember when she’d open her fist just a little bit and how she couldn’t suck her thumb but could find her index finger and put it in her mouth.  If I didn’t feed her quickly enough after she threw her fist in the air, she’d start hitting herself in the cheek.

One day, my mom was holding her and I came across the room to kiss her on the forehead.  Apparently I’d managed to build up static electricity so when my lips touched her, I gave her a shock.  Her eyes got so big!  And of course I was terrified that I’d caused her heart to stop.  But she just looked at me and then went back to looking around.

I was always worried that Zoey was bored because we spent so much time in the same room. I thought sure she was tired of looking at the living room ceiling fan so we’d take walks around the house.  One night I had her outside to explore the front yard and a mosquito landed on her nose—we came back inside.  And then we toured the bathroom, the kitchen and our bedroom.

We only made a few trips away from the house.  The first time, we went to a friend’s house and she stopped breathing.  I just held her, begging her to come back to me.  And she did.  I don’t think I put her down the rest of the day.

Once we settled in again after that adventure, we would take short trips to the park.  We made it to a few in the area and she got to see geese, ducks and goats.  Our biggest fieldtrip was to the baseball game. She was wide awake on the way there—in her car bed and just watching everything.  Once we got to the game, her eyes were huge.  It was a lot for someone so little to take in!  The noise, the colors, the crowd—but she did great.  I really wanted her to meet Fredbird, so we waited out a rain delay and tracked him down.  As soon as Fredbird saw her, he grabbed her from me and we took tons of pictures.  I thought she’d be freaked out by a giant red bird holding her, but it didn’t phase her.  In fact, she yawned.  After I finally got her back from him, we took her to Build a Bear and we made a stuffed Clydesdale.  I kissed a little heart and held it against her before placing it inside.

I have a million memories and could go on, but the most important memories– the ones I never want to lose– are the ones about how she made me feel.  How in awe I was to be her mom.  The capacity of my heart to love her. I know her life was short, and it hurts tremendously now.  But I wouldn’t give her back. I wouldn’t trade those moments.  We had 120 days of memories with her. I don’t want to imagine my life without her.  Sure, the memories of losing her hurt.  I will never forget feeling the last beat of her heart.  Handing her over for the last time.  But it’s worth it.  Every single one of those painful moments is worth it.  Because the ones of me just being her mom and watching Joe be her dad and the sparkle in her grandparent’s eyes outweigh the pain.  We started making memories with her the moment I knew I was pregnant: telling Joe I was pregnant, feeling her kick the first time, seeing her squirm on the ultrasound.  And if that was all I was given, I still would have taken it.  Why we were blessed with longer when others are not, I don’t know.  Why we only had 120 days, I don’t know.  I don’t understand any of that—but I understand love. And I understand that she is my best memory.

 

 

Unless you’ve lost a child, you cannot understand the pain.  You hear that often.  And sitting from this side, I will tell you that it is true.  My family was not immune to loss—I experienced it at a young age, but this is different.  Unlike anything.  Unlike the loss of my pets, my cousin, my grandparents, my dad.  All of those things hurt.  And they still do. I still miss people. I still wish they were here, but there’s a different ache when it’s your child.

I understand the heartache of another mom even though our losses are so very different.  There’s a common thread.  And I easily slip back to the first days.  And the feelings of being crazy.  Irrational. Depressed.  So while we all may grieve differently and we all may have a different relationship with our children and our grief, we all are in the same club.

If you’re not in our club, first let me say I hope you never join it.  We don’t want anyone else.  We’re all full.  If you could outlive all your children, that would be fantastic.  If you’re not in our club please don’t feel like we’re trying to exclude you.  I often gravitate towards my other club members more than my old friends.  I worry that if I let you in on too much of my crazy, you’ll get scared or back away. I still love you and appreciate the bond we have—it’s just different now.  And some of the things you worry about make me roll my eyes (I need to work on my empathy too!).  We’re just in different places.  But we can still be friends.  We just may serve a different need for each other now.

Those of us in this club need a little more grace than usual.  We feel anger, guilt, and jealousy just like you but they are often heightened.  We have irrational fears.  And until we can learn to control our reactions to those emotions, they can get a little out of hand.  If we’re raging about something, give us a little space.  Understand that this will pass and we’ll probably be crying in a minute. The waves of emotions can knock the wind out of you—please give us time to catch our breath.  We often have no control over what emotion boils up.  And we can’t always avoid the triggers.  And while I believe we can work to improve our reactions to things, that path is windy and muddy and not easily traveled.  And we won’t be perfect.  We won’t always be able to see the light.  We’ll just need you to give us a little understanding.  And maybe a hand to hold while we trudge through.

If we’re talking, please listen.  No need to fix us.  Just listen.  Like I said, it’s often easier for us to open up to our fellow club members so if you hear us talking to you, it means we trust you with our heart.  When you open up but someone responds by turning away or if they try to explain away your feelings, it puts another ding in our already broken heart.

And sometimes, especially in the darkest times, we just need you to be present.  Just be there.

Understand that if you mention our child, it is music to our ears.  You are not reminding us that they died.  Trust me.  We know.  Every moment.  And one of our fears now is that our child is forgotten by others.  Or that people don’t think they are important enough to mention.  So please, remember our child on her birthday, or Christmas, the anniversary of her death or when you know everyone else’s child is headed back to school.  We already know these things hurt, but a small gesture of kindness from a friend is healing.  And don’t just limit it to holidays, anniversaries and occasions.  I’m so thankful to my friends who just send me texts on a random day saying they saw an anchor and thought of Zoey or picked up a plastic turtle with big eyes that reminded them of her.  Or they had a dream and she was there in pink sparkly boots.

Our children will always be gone from this earth.  So please remember us long-term. It’s easy to be there until the memorial service is over. It’s much harder to stay throughout the rest of life.  We know we’re scary.  We are your worst nightmare. But we didn’t ask for this.  I so wish that Zoey was here and we were living a boring, but beautiful life together.  This is a life-long journey—no matter what else happens—and it will always hurt.  Please consider walking beside us as we make our way.

Zoey’s death changed everything.  All of us in this club need a little extra love.  We will forever.  Imagine what it would be like for you to be the one who lifted someone up one day?  I see a lot of talk about random acts of kindness.  You could be that for your lost friend.  You could be the one that gives their weary soul a moment of rest.  The stitch in their heart that heals them just a little more.

“hope is being able to see that there is light despite all of the darkness”

~Desmond Tutu

The last few years of our life have not been easy.  I wish it was all puppies and rainbows and unicorns.  But it’s not.  It has been at times absolutely crushing. The weight of our loss so deep and so penetrating.  This darkness will be with us forever.  You can not escape it anymore than you can escape the sun setting.  You can choose to fear the darkness. To let it overwhelm you.  Or you can look for the stars.  You can take what has happened and learn from it.  Let it force you into action.  You can choose hope. It’s always a delicate balance.  And I never want to minimize anyone else’s struggle—or my own for that matter– with finding the light. It is not easy.  But there are moments you have to make a choice as a matter of self-preservation.  To protect your heart, your soul.  Today I choose the light. I have to choose hope.

If you’d like to read more about my feelings on both dark and light, you can look back at last year’s project. I went into much more detail.  But I don’t have that in me today.

Zoey Tamsyn Waymire.  My tiny little blue eyed princess.  She was with us 120 days.  But began making an impact long before her first breath.  She was very much wanted.  And there was no decision to be made when we received her diagnosis: I knew I would carry her.  No doubts. No question.  I want to tell her story as often as I can. I want to talk about her. I want people to know she had a ton of hair. And blue eyes.  And soft little bunny feet.  I want people to know she tried to smile for us. And she had a sweet little cry.  And when she was eating, you could see a tiny little dimple on one cheek. And I think she would have been very inquisitive.  She always scrunched her forehead when she was looking around.

At the couples grief retreat we attended today, we were asked to describe our child in three words.

Cuddly.

Beautiful.

Inspiring.

Zoey liked to be held. I’ve said it a million times– she belonged next to me.  She did not like to be put down.  So we held her constantly.  We fit a million cuddles into her 120 days.

Those blue eyes were captivating.  Bright, but deep.  And knowing.  And those tiny little feet with itty bitty toes.  She’d point and stretch them like a little ballerina.  And her beauty radiated from her.  The beauty of a pure soul.

And Zoey inspired me more than anyone.  She inspired me to see meaning in everything.  To stop and soak in the moment. To see love in it’s purest form.  To love without reservation.  To have hope.

From running to raising money to sharing her story, everything I do in this life is to remember, celebrate and honor her life.  I am blessed to be her mom. I am blessed she chose me.  I am blessed to have memories with her.  Lucky to be Zoey’s mom.

I intend to live a more peaceful life in honor of my daughter.  The moments I had with Zoey were the best of my life.  I know that’s what everyone says.  But it’s true.  I felt at home with Zoey.  I felt at peace.  I felt like I was meant to be her mom and we were meant to spend those moments together.  I was always the most content when she was in my arms.  And I think she felt the same.  She could be fussy with someone else, but as soon as she settled next to me, she’d calm down.  When we took her out on our field trips, she wanted to stay nestled against me—willing to take in the world around her, but from the safety of her mom.  I wouldn’t have it any other way. And the moment she passed was so peaceful.  She wasn’t scared.  She knew here time here was beautiful, but that more was waiting for her.  And that’s I want that for my life here.  Beauty.  Peace. Calm. I don’t want to be anxious to get to the next thing. I want to soak in the time I have here and appreciate the moments of beauty like we focused on with Zoey.  I want to notice the flowers and the sunrise and the sunset.  I want to see the signs she sends to me.  I want to laugh and feel joy and feel pain. I want to breathe in this life.