The 20th of July is Matthew's 11th birthday, but he died more than 10 hours before his birth. He died the day before he was born. That isn't the story of his loss though. That isn't the complete history of grief.

With weeks of complications piling up, I went into preterm labor. My placenta abrupted, and I began to hemorrhage. I was white as a sheet and couldn't hold my head up. His nursery was nearly ready, his car seat purchased, and his crib was on the way. It didn't matter though, because he had been deprived of oxygen and died.No one tells you that life continues whether you agree with the direction or not. No one tells you that you may survive the unthinkable. My life was a train barreling down the tracks when it derailed.

Living with PTSD means I can remember horrific details. It means I relive it over and over and over again. I was alone and lost, but my husband found me deep in my grief and propped me up. My saving grace was the loss support group we attended, and the women of “The Dead Baby Club”. With their similar stories, they normalized the very taboo subject of miscarriage, stillbirth, and infant loss.

So many people think it ends there. I was alive, my relationship intact, I had a group of people who knew what I was going through, and the support of a therapist. Most people believed that I'd go back to being who I was before. Some believed that I would be fine as soon as I had another baby.

People are uncomfortable with the subject of infant death. If it happened to me, it could happen to them. It was unlike any death most people have been around. There could be no words about the kind of person he was, the life he had led, or stories about joy and laughter. So friends and family dropped off, unable to process what I needed. As I grieved the loss of my son, I also grieved the loss of other relationships, the career that I no longer wanted, and the innocence I had once had. It wasn't just my baby who died, it was the person I had once been. "You only have to be different if you want to be." a family member told me that first Christmas like I was somehow able to just choose to forget.

Matthew by NILMDTS Photographer Greg Karl

On my living room wall are about 25 photographs. Five are of my daughter, a few from my wedding, a handful of pictures with extended family, and five of my favorite photos of our son. The pictures of Matthew never change, they never get switched out for an updated version like some of the others on the wall. No updated pictures can ever be taken. My son is gone, but I have beautiful photographs to remember him by. Those photos were taken by a volunteer photographer who came to our hospital room the morning our son passed away. I'm so grateful that NILMDTS exists and has given our family such a precious gift.

The one year anniversary was excruciating. Shortly after, I found out I was pregnant with Charlie. I was overjoyed but also living in fear. Death happened once, so it could happen again. I was in a constant fight or flight response. I hid my pregnancy until I was past 28 weeks. Just days after we made the announcement, the other shoe dropped. I was faced with the possibility of losing another baby when our little 4 pound preemie arrived more than a month before she was due. Tiny but mighty.

Everything after that was a mixture of grief and joy. Every moment, every milestone a reminder of what I never got with Matthew. "You're fine now, right?" were a family member's words less than a month after Charlie was born. I had a live baby now, so to them I should have been magically healed. The rest of the world told me to move on. They told me I posted too much on social media. I made them uncomfortable with my grief. It's hard to find a balance between what the world is telling you to do, your own needs, and the support you can give others through advocacy.

I became very vocal about loss and people in my life came out of the woodwork to tell their stories of loss. People came to me for support when they lost a pregnancy because they knew I could relate. Others reached out to ask for resources for their family, friends, or coworkers who had just experienced a loss.

Grief comes in waves, slowing a bit over the years, but still prevalent. In the early years, questions about whether I had any children or if Charlie was my only child threw me for a loop. Do I acknowledge him and make the situation awkward or do I deny him for the comfort of others? A simple "she's my only living child" was a good way to get people to stop asking questions and scurry away.

Seeing little boys who were a similar age to Matthew at the time or who looked like I thought Matthew would have felt like something slamming into my chest. Seeing siblings of similar ages to Matthew and Charlie also made me stumble. What would my life have looked like if Matthew had been born healthy and whole? Seeing Charlie taking her first steps, watching her grow into a person, having a personality, seeing her interests all made me wonder about who Matthew would have been.

Other grief is expected. Grief surrounding his due date, and grief leading up to, and over, the anniversary of his death and birth. I've been sad and weepy for days now. It's my normal in July. It's why we leave Seattle. It's why I hide away after the 4th of July. I'm less patient. I'm easily overwhelmed. I regret making commitments so I normally don't.

Each year is different but I generally know what to expect. It doesn't end. My heart has expanded with the love I have for my little girl but it didn't fix me. There is still a black hole because my son isn't here. I have continued to grieve whether I let the world see it or not. One doesn't move on or forget. That is the longevity of grief.

Now I Lay Me Down to Sleep, a dedicated 501(c)(3) non-profit, offers families experiencing pregnancy and infant loss with complimentary remembrance portraits, capturing precious moments with their babies. Your generous donation can help us extend this heartfelt service to more families in need. Please consider supporting us here.