• Rylea's Mom

Achy Arms

How has it been almost two weeks since my last blog post? To say that I have no concept of time is a colossal understatement. The days are long and they are hard, but at the same time they move so fast. Each day I desperately try to plant my feet in the ground so I can stay closer to her. Yet, I just can't seem to keep time from forcibly dragging me forward, head first and heels in the sand. One day, I hope to transition from 'a day further from her' to 'a day closer to seeing her again.' But these past nearly 7 weeks, it has been at the forefront of my mind that I am still supposed to be pregnant. Until this week. January 20, 2019 (or somewhere near here) all of my dreams were supposed to come true.

They didn't.

I shouldn't be surprised, but it has still taken me by surprise nonetheless that while her due date approaching makes me miss her fiercely, it also brings up so much sadness at the loss of my pregnancy. I never thought I'd miss being pregnant and I never thought that I would often be my own worst trigger. I was our home.

I've struggled with chronic illness for most of my life - eventually being diagnosed with Sjogren's Syndrome, Ehlers-Danlos Syndrome (EDS), and Polycystic Ovarian Syndrome (PCOS). All of which can make pregnancy unlikely, risky, and difficult. I have often struggled with my relationship to this body that isn't always a fun place to be. In the world we live in, it isn't difficult for women to struggle with a poor body image anyway. My biggest fear was always that these conditions might interfere with my ability to carry and birth a child. What I've wanted more than anything. Then, I got the best surprise I've ever had when we found out I was pregnant with our sweet Rylea.

I was shocked in the best of ways. My body could actually do something good?! I instantly found so much respect for it. For her. I took it easy since I was high risk, but I started going on walks, eating healthy, drinking a ton of water. I was in a lot of pain with my illnesses, but it was the first pain I'd ever experienced that had a purpose and it was 100% worth it. But mentally, I did not always take to pregnancy well. I lacked confidence that this broken body was a safe place for my baby. In hindsight, I think my severe anxiety was mother's intuition. Despite that, my body and I - we were starting to get things figured out. It was like my body was just as in love with her as I was. I was finally starting to love my body because it gave me her.

Fast-forward to November 29.

I woke up so incredibly sick. Even though she was still moving, Rylea's previously consistent kicks and punches slowed down. I had my weekly OB appointment scheduled for that afternoon, and though I genuinely thought I had the jitters of a first time mom and was maybe getting sick and she was maybe running out of room, something told me to call the nurse line anyway. Thankfully, they instructed me to go to triage at the hospital "just to make sure." Once I arrived at the hospital, my worst fears were confirmed when my OB rushed to the hospital and rushed me straight into an emergency c-section. Although the hemorrhage happened too suddenly to completely save Rylea's life, we did get those 30 hours with her that I will treasure until my own last breaths.

They took Rylea to the NICU and me to recovery. Every 30 seconds, I'd ask when I could go see her - I wanted my daughter and I wanted my body to stop getting in the way. I could care less that I just had a c-section. I got myself out of recovery and to the NICU to see her - more in love with her than ever. When they transferred her to Children's, I was going. And when I got there on her birthday and the following day when I came back to say goodbye and help her transition to heaven, all I could do was weep. Through some of the saddest tears I have ever cried, I kept shaking my head and saying "I'm so sorry." To Rylea, to Ryan, to myself, to God, to anyone who would listen. People would hear me and say I had nothing to be sorry for, but I'd just respond with another soaked "I'm so sorry." The mom guilt runs incredibly deep.

Just hours earlier, I'd been marveling at how I must've really been wrong about this old vessel all along. Now it was cut open, bleeding... I felt like it had failed me. The confidence I had that I could keep her safe was gone. I couldn't keep her safe in my womb and I just as soon realized that I couldn't protect her out here either. Why didn't I call my OB sooner? I had so much anxiety all along, I could have prevented this! I am the worst - what kind of mother can't even keep their own baby alive? I must have done something terrible to deserve this. Did you just eat? Too pretentious! Laugh? Too happy! This was all my fault. That's what it feels like, right?

Then, they find substantial amounts of Rylea's blood in me and gave this terrible nightmare a name: massive, spontaneous fetomaternal hemorrhage (FMH). Random, rare, and for no reason at all. Not a known complication of any of my medical conditions whatsoever. Absolutely nothing we did or didn't do. Nothing we could have done. You're kidding me, right? I think of it like climbing up a mountain my whole pregnancy, fighting off a bunch of mountain lions - all to get hit by a bus right before the finish line. Despite my OB (the best one ever) telling me dozens of times that I had no blame in this story - I couldn't even comprehend those words.

After almost 5 days, we got discharged from the hospital and came home. I looked in the mirror for the first time and I saw dozens of stretch marks, a changed figure, a c-section scar, a broken momma, empty arms, and no Rylea. I felt pain, sadness, and so much anxiety in having to live in this body. I could hear my own heart beating loudly and dauntingly and I hated it. I wanted to wiggle out of my own skin. My body didn't know Rylea was gone, so my breasts still made milk to feed her with. Maddening.

I've never experienced a feeling quite like the yearning my arms have felt to hold my baby. It's like someone injected hot lava in my veins and she is the only cool relief. In my heart and in my stomach, I have a gaping, Rylea-sized hole. Early on, I kept trying to hug pillows, our dog, a blanket, her blanket, anything - it would all just go right through me. It's not her.

I picture a kid falling in a room full of moms. You hear them all audibly gasp and rush to the child's side. This feeling is the culmination of that sound. The emptiest of nests. I look at myself in the mirror and see one hundred reminders of my body's failures. The physical reminders of Rylea's presence leaving my body saddened me just as much. Milk drying up, scars healing, stretch marks lightening. The FMH meant her blood was literally coursing through me - is that still here?

Then, the stigma. The perceived misconceptions that pregnancy loss has anything to do with what a woman does or doesn't do (when the majority of the time it doesn't). The discomfort people feel when they don't know what to say so they don't say anything at all. The stinging pain when someone means well but says the wrong thing. Me the unspoken reminder of Rylea's absence. It was easy to use these as fuel for this hatred of my body. Maybe you can relate to these pressures to be perfect, even if you've never lost a child.

Losing a pregnancy means that you have to directly confront who you are going to be after your loss and how to reconnect with your own skin. Physically and emotionally. Loss momma (& dad!): for me and for you, I want to hold your shoulders, look you in the eye, and just shout at the top of my lungs that "IT IS NOT YOUR FAULT." I am not going to sit here and pretend that I don't ever feel this way, that it's not something I still struggle with, or that I have it all figured out. I don't. The journey I'm in of loving myself, finding reasons to take care of myself even though she's not physically here anymore, and finding who I am now after loss continues. My head knows that I would have traded Rylea places in an instant and a million times over. That there was nothing more that I could have done. That we had the best possible outcome despite some of the worst possible circumstances. And that maybe this not being related to my disease and being an isolated event means that perhaps we will someday get to have a little rainbow we get to take home with us. My body still did the best and most wonderful thing - it nurtured my beautiful firstborn daughter. My actual angel. I decide that the beauty of that supersedes it all.

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