My daughter Charlie’s story begins in May of 2012. Due to severe early onset preeclampsia, Charlie was delivered ten hours into her twenty sixth week of gestation. She weighed one pound twelve ounces (790 g).

My c section surgery was under general anesthesia and I was taken to the ICU immediately afterwards. I did not get to meet Charlie until she was two days old. She was ten days old the first time I held her. My constant NICU bedside vigil started because I did not want her to die alone. It was all I could do for her at the time.

I wish someone would have told me about the flood of emotions I would feel. During her first month, I mourned the perfect pregnancy I didn’t have, grieved the baby experience I pictured and planned, was terrified my baby would die, was angry at fate, was heartbroken, was deeply sad, was overwhelmed, and lived in a desperate world. I wish someone would have told me it was OK to cry. It felt so wrong to cry because of my baby’s birth. Most of all, rather than all the platitudes and trite sayings, I wish someone had said, “This is going to suck. But, you can do it.”

Charlie was so small and sick that I only got to hold her a few times during her first month. When I did, she often stopped breathing and had to be returned to her isolette. I was unable to produce breast milk. I felt like I failed as a parent.

Charlie was tough and a fighter. Despite being delivered so small and so early, her course went as well as we could have hoped for. She did the typical preemie dance of two steps forward, one step back. The entire time, I held my breath, watched, waited, and hoped. I talked to her, sung to her, and read to her. Mostly, I wanted her to know that I was there with her. She was not fighting alone.

At two months old, she was able to have her CPAP removed. It was the first time we saw her face.

Shortly afterwards, she was well enough to be transferred to a hospital closer to our home. She was officially what was called a “feeder-grower”. For her first two months, I had been traveling an hour each way to see her every day. I was excited because the new hospital would have a NICU with private rooms.

Charlie’s first two months of life were spent in an open bay NICU. This meant that everything, from the first time I met Charlie, the first time I held Charlie, when bad news delivered, when good news delivered, kangaroo care, every tear I shed, and anything else, had occured in the presence of and in front of many other strangers. There are not words to describe the indignity of suffering heart break in front of people you don’t know. I looked forward to the private room NICU. I had yet to spend a second alone with my baby.

The transfer to the private room NICU went well. There, she started to feel like my baby. I could hold her when I wanted to, was able to feed her most of her feeds, and bathe her. Also of importance, there was a place for me to sleep so I did not have to leave her every night like I had to in the other NICU. Charlie and I had a sleepover her first night there. We watched the opening ceremonies of the Olympics together.

When she was nearly three months old, her doctor told me that she would be ready to go home in a few days. I cried as soon as he said the words. I had become accustomed to simply hoping for survival each day. I didn’t dare hope for something like home. At the end of August, we brought Charlie home. It was ten days prior to her due date.

Charlie was discharged without monitors, a feeding tube, or oxygen. Her head scans were clear of brain damage. We were told she would catch up by two. We had no reason to expect anything less.

Two months later, she was readmitted to the hospital with gastrointestinal issues. It was a minor issue. However, it was the beginning of things to come.

By Christmas, I knew there were motor development issues. I started to read anything I could get my hands on about development. The two most important things I learned were that I needed to get her help as soon as possible and how critical the first three years were in brain growth and development.

At Charlie’s next well visit, I talked to her pediatrician about referrals to specialists. The specialist later noted that there were sensory issues, an oral aversion, and a speech delay as well.

Charlie was enrolled in early intervention. Desperate to help her, I tried everything and anything I could think of. We stuck with what worked.

Charlie liked and responded to sound. I found a music therapist to work with her. A friend taught mommy and me swim classes, we enrolled in those too. We spent countless hours in Chuck E Cheese to work on sensory, feeding, and motor skills because she liked it there. We played outside, hiked, splashed in the river, dug in the mud, played with shells on a beach, sat on a blanket in the shade, and climbed stumps. She preferred playing outside to the EI suggested exercises. In Charlie’s first three years, we visited all 37 Virginia State Parks.

Charlie did her part. She willed uncooperative muscles to move, she pushed her sensory threshold to the limit, she gagged on food, and she never gave up. At the age of one, she was able to sit independently. At twenty months, she took her first steps (with the assistance of ankle foot orthotics).

Later, she needed more speech therapy than Early Intervention could offer. I drove her twice a week to therapy an hour away. It was what I could afford. OT was added shortly thereafter. We made the trip three times a week.

Charlie and I gave her first three years everything we had. It paid off… Except in feeding. At three and a half years old, Charlie’s weight was at 21 pounds. My husband and I made the decision to have a g tube placed.

As difficult as it was, it turned out to be a good thing. It allowed Charlie to grow well. My little girl was thriving. It wouldn’t be by two but we now had hopes of Charlie catching up eventually.

In between all the therapies and specialists, we did fun things. We went camping, visited Hershey’s Chocolate World, and saw her favorite musicians.

At the beginning of this year, we faced another fight. It wasn’t directly due to prematurity. Charlie’s access to healthcare was threatened by talk of ACA repeals and Medicaid cuts. The circumstances of Charlie’s birth is considered a pre existing condition. Without the protections of the ACA, she will become uninsurable. Additionally, lifetime caps will threaten her coverage as well. Even though Charlie has insurance through my husband’s employer, she has a Medicaid waiver. In our state, Medicaid waivers are how children with disabilities receive many of their services.

Without access to services, Charlie loses out on her chance to catch up. For her, it’s the difference between an independent adulthood or a lifetime with permanent disability. We had no choice but to do the only thing we know to do when facing impossible odds… fight like hell.

We started by attending our first healthcare rally early in January. I wanted everyone to see who would lose access to healthcare. By February, our rally and march attendance was in the double digits. I was standing outside of the Capitol when the House voted to pass AHCA. The heartbreak of that day resulted in my fight becoming more fierce. We added lobbying to our routine of writing our representatives, calling our representatives, and protesting.

We fought all summer. I had never been arrested in my life. Yet, I was arrested twice this summer at healthcare protests.

During the same week as the anniversary of her NICU discharge, Charlie started school. It was a big day for us. It was a milestone that we had worked towards. It was the beginning of her independence.

Over the course of the summer, I decided to join the fight for single payer universal health care. In September, Charlie and I spoke at the press conference in which Bernie Sanders announced his plan.

Our prematurity story isn’t what I hoped for nor wanted. But, it’s mine and I love it nonetheless. Being a preemie parent is the journey of a thousand losses. Yet, there is so much for which to be thankful. That is what stands out to me most about this journey. As tough as it’s been, as much as we had to fight every bit of the way, beyond those feelings of loss and pain, I feel an overwhelming sense of gratitude for it all. I have no idea how this will all play out for us. I’m simply grateful for every little minute of it. I wouldn’t have chosen this path. However, I’m glad that I’m on it. I'm humbled by the incredible people we meet along the way.