I hide when I cry. I don’t want to people think I’m weak. I feel like I’m putting on a show because everyone is watching. If I fall apart if even for a moment will people shake their head, feel sorry for me and talk about me in whispered conversations? And if I admit that I’m hurting, will I make them uncomfortable? But I don’t always want to pretend that my world isn’t shattered. It is exhausting.
I don’t even feel like me sometimes. The me I’d known for 37 years died that day too. And now I’m trying to figure out who I am again. A mom without my daughter. A broken-hearted passenger on the hot mess express. Maybe the difference doesn’t seem obvious to the outside world, but there are moments I feel like I’m completely losing it. I don’t think my memory is the same. My thoughts are often disjointed. My tolerance for bullshit is lower. Groups of people and parties give me anxiety. Meeting new people makes me uncomfortable—because I know “the” question is going to come up. “Do you have children?” My views on life changed. My views on death changed. I’d like to say that the changes have all been positive, but I’d be lying.
I’m jealous. Jealous of the ones that still have their kids. Jealous of the mom walking with her daughter in the park. Of other women’s pregnancies and everyone else’s happy little families. I wonder why it seems like everyone else has what I dreamed about. And then I beat myself up for thinking about myself instead of focusing on the memory of my daughter. And worry that she’ll think I regret the time I had with her.
And I feel guilty. Guilty for the jealousy. Guilty for not being able to keep her alive. Guilty for failing her. Guilty for failing my husband. My family. Guilty for not wanting to go to holiday celebrations with our families because they are just so damn hard. Guilty for feeling like I don’t do enough for her now. Or for not being able to remember if I told her (picture) that I loved her before leaving the house. Guilty for not taking flowers to the cemetery more often. And for feeling like the arrangements I put together aren’t good enough.
I think about death often. I imagine getting the next phone call. The next one that changes my life again. I tell myself that if I imagine every scenario, then it won’t actually happen. Because I never imagined I’d lose my daughter, but I did. So surely the opposite is true.
And I notice myself laughing at inappropriate times. Making dark jokes with the other moms who do the same. And then worry that I’ve become calloused and angry. That one day you’ll find me alone on the front porch, wearing a bathrobe with a coffee cup of vodka in my hand screaming at the neighborhood kids to get off my lawn (might as well throw in about 20 cats while we’re at it).
And I often wonder as I write these and put them out there for the world to see, if you’ll look at me differently. And wonder why I never learned just to shut up and leave some of it unspoken.
Everyone is there the first few days. But then people go home and back to life. Their normal life full of work and soccer games and grocery shopping. And the truth is you don’t really need anyone but your closest circle there the first few days. Because you don’t even really know they are. You can’t see them through the fog. It’s later. When your broken heart is bleeding but you feel like no one is there to apply pressure. I am lucky. I have strong circles of support. Joe. Family. An amazing set of friends, including my FUT18 moms and other “club” moms. These people hold me up, check on me, send their love and most importantly love and remember Zoey. But grief can still be a very isolating experience. No matter how many people surround you and how wonderful they are, at some point you will look around and think everyone has forgotten you. I think it’s just part of the process.
It can be difficult to seek support even when you desperately need it. You don’t want to seem weak. You don’t want to feel judged. But this is a hard path and sometimes you should not travel it alone. If you, or someone you know, needs support after the loss of a baby, seek out a Share support group. I’ve heard good things about the Compassionate Friends, but do not have firsthand knowledge. You can also check with your local churches and hospitals. I am actively involved with BJC Hospice and they offer a variety of healing retreats, workshops and programs for moms, couples, siblings and communities affected by loss. I’ve appreciated some of the blogs/stories I’ve found at Still Standing. However, my word of warning: I have found on-line support groups to be more damaging than healing. Maybe they are right for someone else. But they were not the right choice for me. If you go that route, be cautious and be okay with leaving them if you feel it isn’t the right place for you.
It might take a few tries, but you’ll find your way to a place that feels supportive and healing.
The light and joy of my life. The person I love the most. The person I miss the most. Tiny human with the most beautiful eyes. Baby girl filled with wonder. The little girl who would throw her fist in the air, and scrunch her forehead. Who made the sweetest baby noises. And who hated bath time. But loved cuddling.
I picture her often, but I have a hard time imagining what she’d look like by now. Would she look more like Joe? Or me? Would those beautiful eyes stayed just as blue? Would her little feet always have been soft as bunnies? Yet I see her in the little girls we pass at the zoo, at the grocery store.
I think of her little personality starting to show. I think she’d be sweet, but mischievous. Giggly. She’d like princesses. But would be trying to kick a soccer ball. She’d have a crayon in hand scribbling artwork everywhere. And I hope she’d still love cuddling with her mommy.
She will always be my daughter. I will always ache for her. I will always want to say her name. I will always wish she was next to me. But she will always be mine. And I will always be thankful for the time I spent with her. I will always be grateful that I am Zoey’s mom.
Shortly after Zoey died, I found this project: Capture Your Grief. I’ve decided to participate again. I’ve appreciated the opportunity to reflect on my journey the past two years. I also know this will be a lifelong path to travel and this gives me time to revisit where I’ve been and continue moving forward.
October is Pregnancy and Infant Loss Awareness month. This morning I attended a ceremony dedicating an “Angel of Hope” statue near me. I joined with other moms, dads and family members in remembering and honoring our children. As I was sitting there listening to all the names, it once again occurred to me that this is what I get. I’ll never hear Zoey’s name called as she crosses the stage at her high school graduation. But I appreciate that I can join this group of other parents in remembering her. A place where it’s safe to say her name out loud without anyone changing the subject.
I missed the sunrise (something about a drizzly, cool fall morning made me sleep in), but I’ll share a photo of the Angel of Hope in honor of Zoey and all the children we miss every day. Thinking of you always my sweet girl.
Two years. It’s been two years since I saw those pretty blue eyes. Two years since I held her as her heart took its final pulse. And mine kept beating even while shattering. It sounds so trivial to say “I can’t believe it’s been two years”. But I can’t. Maybe because life looks much like it did in those days after. Same house. Same job. The same people living what looks from the outside to be the same life as it was before. Or maybe it’s because there are moments the pain seems just as fresh. Searing through my body. I’ve tried to keep moving. Because when you stop—when you stop, the pain washes back over you. In those still moments. In the shower. Trying to fall asleep at night.
At first I didn’t want to believe I was broken. Because that meant I needed to be fixed. But over the last two years, I’ve realized that yes, I am broken. My heart is. The life I dreamed is not what I have. The beautiful little girl that should be here is not. And that will always leave me shattered. But I don’t need to be fixed. I’m allowed to be broken. I’m allowed to walk around with part of my heart missing. It will continue to beat, although bruised, battered and with a hole. And the truth is, I don’t want to be fixed. I don’t ever want to fully heal. Because I don’t want to forget her. And I don’t want to forget the love I have for her. That hole in my heart needs to be there. And the brokenness drives me. Drives me to talk about her. To say her name. To remember her.
August has been hard. I think worse than last year. I’ve cried every day. I flashback to those final days. And it overtakes me again. Recently, I found myself in a room full of medical students telling our story. And in particular the story of her death. How in the final days we were at a pediatrician getting a referral so we could take Zoey to get a consultation on heart surgery. And then the emergency room. Placing a feeding tube. Zoey ripping it out as soon as we got home. A phone call. Removing the tube. Bathing her for the last time. Holding her tiny body and placing my hand around her little chest so I could feel when her heart stopped. Handing her stiff, cold body to a funeral home. Losing my ability to stand on my own. And then the fog. And I told them how the moment she left us was so peaceful and beautiful. As if I’d just handed her to my dad to hold for a little bit. Until I could again. But everything after is what haunts me.
And I told them how I had to believe I will see her again someday. I don’t have a choice. While I’ve struggled with faith and with understanding why this could happen, I try not to dwell there. Because to get through all of these days, I have to believe there is a purpose for the pain. And I have to believe that she’s somewhere so much more beautiful than earth. And I have to believe she sends us signs. It might be easier to brush these things off as coincidence. Because saying you believe in that can make you sound a little crazy sometimes. But it’s what I need. Because I have to believe that one night as I was looking at the sky and its double rainbow and our song came on the radio, it was Zoey saying hello.
I miss her.
Zoey, I love you. I miss you. But I hope you’re having an amazing time. Thank you and your friends for sending us rainbows, and flowers and songs on the radio. I’ll see you again soon, my love. Until then, I hope my love finds you wherever you are.
As I got home from the gym this morning, I opened Facebook and another one those “here’s your memory from years ago” popped up. Another one from “before”. Before Zoey. This morning it was a run four years ago. Recently, I’ve seen memories of past vacations. And other races including a few sprint triathlons. When I was much thinner and faster. And clueless about what life was about to bring. I look at those pictures and sometimes it bothers me that I don’t look like that anymore. I’m heavier, more round in the middle. More grey in my hair. More wrinkles. My body is bruised and scarred. Much like my soul. But then I think about what it’s done in the last few years. It carried life. A beautiful, miraculous, amazing life. And I appreciate the scar I have to show for it. And it’s carried the weight of grief—which at moments has felt like a physical weight. I remember those early days where it took all of my energy just to get out of bed and to keep moving. But my body remembered how. So it did. And gradually the physical exhaustion became less apparent. Or my body got stronger and carried it more easily. And I remember those moments in my life when I wasn’t able to stand on my own—walking out of the doctor’s office the day we first heard the words Trisomy 18 and right after I handed her body over. But I did get up again. My heart kept beating despite its broken pieces. I want to look back on those pictures and appreciate where I was at that time. And I want to look at the pictures of me now and appreciate that I’m strong enough to make changes. Strong enough to keep moving forward. And strong enough to carry the pain and still manage to find joy and hope.
The shootings in Orlando have been weighing on my mind and my soul. Nothing I say is anything groundbreaking. But I still want to say it. My heart is broken again. It happens a lot these days. Because when I woke up and looked at my phone on Sunday morning, I saw the news that so many moms would be receiving a call telling her that her child is dead. And I’m all too familiar with the shock. The fear. The confusion. And I know it hurts many moms all over again. Sends them reeling back to a night when they got a call. I remember, although I was young so the details are murky, when my mom and grandma had to call my aunt who lived half a world a way to tell her that her son had been murdered. How do you make that call? How do you hear it? How do you keep breathing? The loss of my child happened under different circumstances, but I know suffocating pain—and I don’t wish it upon anyone.
And then I’m sickened that within hours people were on-line fighting about gun control and Muslims and mental illness and whether we should label it a hate crime or a terrorist attack. And all I can think is ‘who the fuck cares what you call it”? Another world has been ripped to shreds. Another family will always miss that face. That smile. That heartbeat.
I’m not getting into a political debate over it. I’m not saying we shouldn’t debate these things. We should. There is obviously a problem. But right now I just hurt for the moms and families and friends of those who died. And my heart hurts for all of us.
I have to admit that I cringe a little every time one of my friends makes a comment about wanting their children to stop growing up so fast. I understand the sentiment. I was like that before. When Zoey was here I wanted to freeze time. I wanted her to be nestled in my arms like that forever. As much as we tried to focus on making every day count, the little voice in my head that said “every day that passes is one day closer to goodbye” was persistent and nagging. I wish I could have stopped time.
But now. After. Time did stop for her. I will never have new photos to share. I only have the ones that stop at 120 days. I cried when I went to the cemetery today and saw the date etched on the stone. May 1, 2014. Two years.. Unbelievable. So I spent some time this evening looking back at the photos from the day of her birth and remembering those first moments with my daughter. Today we do celebrate her birthday. It’s day to celebrate her life.
I desperately miss my baby girl with the soft bunny feet and those beautiful eyes. And I wish she was here, posed behind a little cake with Mickey Mouse on it and a little candle of the number 2. I wonder what she’d look like now. And I wonder what life would be like.
Happy birthday my sweet girl. I’m sure you’re having an amazing party. You can have extra sprinkles today. I send my love to you wherever you are.
Joe and I are celebrating our 8th wedding anniversary. Thinking back to that day, we didn’t imagine this is the path our lives would take. With our friends and families looking on and the gentle crash of the ocean waves in the background, we vowed to each other “for better or for worse”. We didn’t think that the “worse” would include the death of our child. As we looked out over the water, we never would have thought that we’d return six years later to release our daughter’s ashes there. As we stood there and exchanged rings, we didn’t picture ourselves later standing at the site of the stone that bears her name, birth date and death date, holding on to each other. Holding each other up. And it’s strange to think that the spot where we celebrated with family and friends, would later become the place where we once again joined together to celebrate a beautiful life. In our lives, just as in our travels, the seas haven’t always been calm. There have been dark days. Rough waters. And there has been beauty—so much beauty. Sometimes intertwined. Our love remains as deep as it was that day on the beach when we promised we’d stay together no matter what life tossed our way. When doubt creeps in, we cling to each other. When I’ve been too weak to stand, he’s held me up. Some love stories seem to be the perfect fairy tale. Ours may not look that way on paper, but despite all the pain, all the hurt we face now, I think our love story is pretty remarkable. Our daughter was created out of our love. She was a beautiful child, a beautiful life, a beautiful soul. It’s certainly not the life we dreamed. But here we are.