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.
Day 3: Trying to conceive.
It’s been 13 months. I remember thinking when we decided we would try again that it would be easy . How the hell was I still so naive after everything we’ve been through? But I thought my body would know what to do (that’s what you hear, isn’t it?). After a few months went by, I decided to go back on fertility medication and undergo further testing. Everything looks fine. But still nothing. Every month I continue to take medication and track and get blood work and hope. We were prepared to undergo IUI in March. On the way to the appointment, they called and basically (and more delicately) said “Don’t bother”. And now we wait again. It’s incredibly frustrating. It’s exhausting. I feel like a complete failure. And honestly, I wonder if these are the signs the universe is sending me and I’m just ignoring them. We’ll try IUI for a few rounds. If it doesn’t work, I’m not sure we will pursue other options. IVF is expensive and it isn’t a guarantee.
People have asked if we’ve considered adoption. We’ve had brief discussions about it. We respect each other enough to understand and appreciate that we might not be on the same page about it and would never pursue anything that we both are not completely committed to. Because it’s not like you go to Target and pick out a baby. There are plenty of horror stories about failed adoptions. I know there are also plenty of success stories. But there are plenty of success stories about IUI and IVF—that doesn’t mean it’s OUR story. It’s also expensive and while you hate to even make that part of the discussion, it is reality. It would be irresponsible not to take all factors into consideration. Right now I feel like we’ll have to cross that bridge at another time. For right now, we’re still pursuing a pregnancy. I fear I will get completely overwhelmed if I try to walk down too many paths at one time.
And honestly: I’m tired. Everything has a financial, physical and emotional price. We’ve had enough. Everyone agrees that losing our child is the most we should have been put through, right? You can argue these trials are meant to make you stronger. That they show how tough you are. That they show how much you want it. But that’s total bullshit. If we decide to stop all of this, it won’t be because we didn’t want another child badly enough. We carry the grief of losing Zoey with us daily. And it’s heavy. Sure, some days we feel stronger. But we have to carry it forever. And I can’t help but know that even if we do get pregnant or adopt, we could lose that child as well. There comes a time when you realize that you are completely exhausting yourself emotionally. We both realize that there’s a possibility that we will not get to raise any living children. If that’s the path meant for us, we will feel the loss of that dream. But we will find joy in other ways. I know that. But it doesn’t make the process any easier.
Day 4: Today I feel….defeated. Month after month of disappointment. I know I’m in one of those “dark” places right now. And I’m having trouble shaking it. It’s difficult to make decisions. And it’s difficult to feel like you are putting the rest of your life on hold until you know what’s going to happen. And I don’t understand it. None of it. I don’t understand why we lost Zoey. I don’t understand why it’s so hard for us. Why do terrible people get to have children when they will abuse, neglect or kill them? Why are there so many unintended pregnancies? I don’t think you can look at our story and doubt our dedication or our love. So I’m giving myself permission to just feel crappy. I try so hard to stay positive. To always look to hope. But that’s exhausting too. And frankly, I should be allowed to be honest about the bad days (or weeks). And I don’t want to pretend just so people think I’m healing or coping like I “should”. All of this sucks. That’s my reality.
Apparently March brings us both Trisomy Awareness month and Pregnancy After Loss Awareness week (PAL).
I believe I’ve discussed my awareness of Trisomy 18 before. Got it. I’m aware. It sucks. And there’s not one thing you can do to prevent it from happening to your child. I suppose that’s not the point exactly. I suppose people could become aware that some children do live past their first birthday. I’m sure awareness is also important in knowing that you do have choices in whether or not to proceed with your pregnancy after diagnosis. Here’s where things get tough to discuss. We chose to continue our pregnancy. It actually wasn’t a choice. I never considered termination. But I understand those who do. Many are pressured by doctors. Many are told that’s what they should do. Many think that’s their only option. Many believe that is the most loving thing they can do for their child. I empathize with the place they are coming from when they make that decision. I know we made the right choice for our family. And I will tell our story a million times and hope that it makes a difference to someone. Which then leads to the choices that are made after your child is born. We chose hospice for Zoey. I fear that others will look upon us and think we didn’t do enough for our daughter. Because what is that saying that goes around “your one job is to keep your child alive”? Well that makes me feel like a complete failure. I have to remind myself that our story was not one of failure. Zoey was loved every minute of her life. Of course I would do anything for my child. But sometimes that means letting go. It is a decision I will wrestle with for all of my life. But in my heart I know we chose what was best for our daughter. And every other family does the same. I understand they may make different choices for their child. If that means they intervene more. If that means their child has surgery. If that means they spend time in the hospital. If that means they just hold them for whatever precious moments they have. Parents are making decisions out of love. Only they know everything about their child’s condition. Only they know what choices they can live with.
Now on to Pregnancy After Loss Awareness Week. No, I am not making an announcement. But I am choosing to participate in one of their photo/writing projects. Because even “trying” after our loss is different from when we tried to get Zoey. I decided to participate because we’ve made it known that we are trying to get pregnant again.
Day 1: Loss/Baby that Died.
Our little princess Zoey. Blue eyes. Soft little bunny feet. The most amazing little person. I am grateful for every moment I spent with that perfect little child. There are moments I think my heart will cease to function from a broken heart. I ache for her. But I’ve never regretted having her. I am on this path of “after loss” because of her. And I so wish I wasn’t for so very many reasons. If she was here we likely would not be trying for another child. I only wanted one. I only wanted her. It’s something I struggle with. Because it makes me feel like we’re trying to replace her. And as much as the rational side tries to beat that into me, it still slips in. In the end, if it is not meant to be and we just have Zoey—she is enough. I will always have her.
Day 2: Courageous Mama.
I’ve never felt courageous. Not while I was pregnant and not now. I’m terrified. I am scared of what getting pregnant would mean—the anxiety. We tried so long for Zoey only to have her ripped away from us. We found out so early in pregnancy that I don’t know what it’s like to just be pregnant. Because every moment of my pregnancy I was scared I was losing her. Every appointment with my doctor I thought that would be the one when they told me she was gone. Going in for my induction was not the normal anxiety I’m sure other moms have. The possibility was so very real for us that we could be coming home with empty arms. And there are moments I think we are absolutely insane for wanting to go through this again. The fear of losing again. I know that’s a real possibility. So no I don’t feel courageous. I’m scared of getting pregnant. And I’m also scared of not being able to.
But this prompt was supposed to be about why I am a courageous mama. If I really look at it, I suppose courage doesn’t have to display itself with a roar. It can come when I don’t think I have the strength to keep going, but take a step anyway. In the dark moments when I don’t understand any of this. But believe in hope anyway. And I do still believe in hope. And I believe in love. And I believe both are worth the risk.
We had to let one of our furry companions go. Holly had been with us for about 11 years. She found her way to my grandma’s house one afternoon and I just had to let her move in with me. She was a very sweet cat and loved people (especially our pet sitter who would always brush her and give her extra attention).
It was a further reminder that nothing will ever be the same after losing Zoey. We’ve had to let pets go before. I’m an animal person, adore my critters and it’s always been extremely difficult to say goodbye. And I’m not comparing the loss of my pets to the loss of my child– it’s not even close. But the experience at the vet took me back to the day we lost Zoey. Holding what you love as they take their last breath. Heart-breaking. And where I needed to be.
We knew our time with Zoey was limited so I just held her that day. I wanted the sound of my heart beating to comfort her. It was one of the first things she heard. It felt right that it should also be the last.
I held Holly the same way as she left us.
They told us we could stay with her as long as we wanted. But I had to give her to the vet almost right away. Because I couldn’t do it again. I was holding my cat, but remembering holding my daughter after she died. I’m tortured by the memories of holding her body. Cold. Stiff. Gone. I’m tortured by the memory of handing her body over.
I try so hard not to focus on those parts. On the last day. I choose to remember the sparkle in those bright blue eyes. And the little coos. And her fists punching the air. But you can’t stop grief. And you can’t stop memories. And losing Holly forced me back there.
And then the house. When we moved here we were supposed to fill it. But instead we lost another. Another bedroom (yes, Holly had her own bedroom) will sit empty. All of this space for just the two of us (and our two remaining cats). This isn’t how things were supposed to be.
I spent the weekend feeling like the universe is against us. I’ve really struggled lately with our infertility issues. I feel like we’re getting close to the end of the road. I know there are still things left to try, but I’m growing tired. I’m spent. Physically. Mentally. Emotionally. Wondering if it just isn’t meant to be. I’ve often wished for a giant sign. One that either says “Hang in there, more is yet to come” or “Stop. Go rest your weary soul by the sea”. But that isn’t how life works. We plug along. Take it day by day. Try to make the best decisions. And grapple with so many unknowns.
I know I will get through. I know we will eventually find our way to whatever life is meant to look like for us. Some days are just harder than others.
I made it through 19.3 official miles at Disney (and about 100 more unofficial miles wandering the parks)!
One of my dearest friends set off on the adventure with me. Anna and I have known each other since we were kids. I won’t go into details about all of our past trips together–including a spring break trip to New Orleans in college–because we’re so much more mature now…). It was so amazing to have her there on this journey with me. Having one of those friends who has just always been a part of the big and little moments of your life is really incredible. The kind where you just slip back into the more carefree days. And the kind who will deal with you at 3am when you’re sick, cranky and a little pathetic. And do it cheerfully.
My training for the Glass Slipper Challenge really went off the rails in January. Bronchitis. Then another condition that sent me to the ER (I don’t even know how to spell it—but I’m fine. It just made training properly a challenge). And then when we arrived at Disney, I came down with another cold. Anna and I spent a few days exploring the parks, eating and picking up our race gear. We woke up really early on Saturday. Dressed in our best Lilo and Stich tutus and headed to the race. I definitely was not feeling the best. But she stuck with me. I tried running a bit, but it just wasn’t my day. I didn’t want to ruin Anna’s race—but as she kept saying in true Disney spirit—Ohana. Ohana means family. And family means nobody gets left behind or forgotten. The 6.2 miles passed amazingly quickly considering I felt terrible. Having someone with a ridiculous amount of energy and spirit beside you helps pass the time! Anna completed her first 10k! I’m so proud of her. Ask our high school gym teacher about our time in gym class together. I’m sure she’s as shocked as we are that we ran through Disney! And I made it through Race 1.
I was not feeling good about the half. But we took the rest of the day and just hung out by the pool. Floated in the lazy river. And recovered. It was definitely what I needed. Sunday came (early again!) and I set off for the half. After a slight detour because of a lost bus, I made it to the start line and felt decent. I didn’t want to push it, though, so decided to mainly walk and reevaluate a few miles into the race. I wanted to finish. And I wanted to stay below 16 minute miles doing it. There’s something about turning onto Main Street in the Magic Kingdom with the streets lined with cheering spectators that gives you a boost of energy. The course heads you toward the castle, veers toward Tomorrowland and then loops through the castle. You run through the tunnel and out to the front. I’m not sure I’ll ever get tired of that section of the race. I felt reenergized and was able to pick up my pace a little bit. Anna met me at the Polynesian around mile 7. Seeing a friendly face gave me another boost. Miles 8-10 are pretty boring. You’re back on a highway. The sun has risen and is starting to beat down and you just want to be done. Finally you realize you’re close to Epcot, a little jaunt through the park and I crossed the finish line. 19.3 total miles in two days for my little princess. I once again carried with me the names of some of the children we’ve lost. Because this is for them.
I remember tearing up at the end of the race last year. Proud of my accomplishment and hoping Zoey would be proud of me too. But this year, I had many more moments where I felt like crying. I would think of all the moms—the ones in my club. The mommas of the names I carried with me. And there are too many. But they are amazing moms. And I wish I didn’t know them like this. But I’m so thankful for their friendship, love and support.
Hattie, Evey, Mackenzie, Caleb, David, Hope, Robert, Charlie, Allison, Baby Light, Ellis, Stan, Kaitlin, Colby, Teddy, Ezra, Baby Heinle, Caleb, Janet, Nicol, Marco, Jonah, Stevie, Dawson, Charlotte, Jackson, Kyrie, Todd Jr, Thomas, Natalie, Bell, Kuyper. Thank you for being with me. I felt you all.
I was acutely aware this year that things “should” be different. My daughter should be almost two. I should have been talking Joe into taking her to meet Mickey. Not running a race in her memory. It is not right. It is not fair. And I wish things were so much different. But they are not. And like all the other moms, I’m doing the best I can. Making the best of the life I have. Living this life and fighting through the pain. Continuing to love my daughter and do everything I can to make her proud.
Thank you again to all of you who supported Zoey’s Crew and who donated to Children’s Miracle Network. It’s amazing to be part of their team. I appreciate the opportunity to give back to the hospitals that helped Zoey on her journey. Thank you!!!
Oh, and the jewel in my half marathon medal fell out somewhere along the way back to the hotel. Seems a little fitting—this race didn’t go quite as I expected or wished. But there’s still a little magic left.
Happy Valentine’s Day my sweet, beautiful girl!
Before you were born a friend sent me a note. In it he said that as soon as you arrived, love would be completely redefined. He was correct. But it started long before you were born. Love changed the moment we knew I was carrying you. My love for you gives me hope. It gives me grace. It fills my life in ways I cannot fully explain.
Many great love stories have been told. But I would argue that the greatest love story is the one between a mom and the child she knows is leaving her. You will not see a fiercer loyalty. A stronger bond. A stronger fight. A more intense prayer. I experienced it with you. I’ve seen it with my friends who have also lost their children. But our story hasn’t ended just because you died. I’m still your mom. I feel you with me.
I am proud to be your mother. I am grateful for the time we had together. I will continue to honor your life. You are the greatest love of my life (I’m sure your dad will understand). You did redefine love. You redefined hope. And prayer. And joy. And heartbreak. But the amount of love I hold for you is worth every piece of my broken heart. I would shatter it in a million more pieces for a moment with you. One more breath. One more heartbeat.
I love it when people say your name. When they mention a memory of you. You see, it isn’t your life that brings me pain. No, your life brings me great joy. You filled me with wonder. I was always in awe of you. Your tiny nose, little fingers, that full head of hair. Your soft little bunny feet. The way you would coo and how you tried to smile. Looking in your eyes made me feel whole. So no, I do not grieve your life.
I hope my love continues to find you. You will always fill my life with love. My love for you did not end. And will not end.
I love you my baby bird,
On the way into work, the radio was airing a story on touch. One of the senses people often forget about and may not realize is so important. And I began to cry. The memory of my daughter’s soft little bunny feet. I could have rubbed my fingers against the bottom of her feet for hours. Sometimes I did. It seems that everyone who met her and touched those little feet said the same thing. So soft.
I felt that familiar ache. The one where I swear my heart is actually in pieces. The one where just for a heartbeat I can feel her again.
Her weight against my chest.
Her breath on my skin.
The tickle of her hair.
Her tiny fingers wrapped around mine.