I don’t even know where to begin.

In 1987, when I was 20, I was in a bad car accident. My 3-year-old daughter, who was with me, was shaken up and had two black eyes, but otherwise seemed all right. Someone called my parents and my mom took me to the hospital. I was 38 weeks pregnant.

The hospital staff did a cursory exam and told me everything was fine, in spite of the bruise developing across my large belly. Go home. Rest. You’re fine, they advised. I did as I was told. But the next morning, I knew everything was not okay. I called my doctor, who had me come in immediately. He examined me and said the baby no longer had a heartbeat. I was sent to the hospital for an ultrasound, which confirmed the worst. My full-term son, Jonathon, who was perfectly healthy the day before, was dead.

The decision was made to induce labor. I was in shock, not understanding what was happening. Was I really going to have to endure labor and delivery to bear a child who would never take a breath? I was sobbing and in great pain. I kept telling the nurses that the baby was coming now—I could feel it—but they said it was just pressure and that I needed to relax. I’m sure they thought I was just young and hysterical, which I was, but I knew my body, and I knew the baby’s arrival was imminent.

Within minutes the doctor delivered my son and the nurses took him. They weighed him and cleaned him and did all the things they do with a brand new baby. It would have seemed totally normal if not for the deafening silence in the room. Unable to comprehend what was happening, I couldn’t stop shaking. The nurses piled heated blankets on me, gave me some medicine and told me everything would be fine. They wrapped my son in a blanket and laid him in my arms. He was beautiful, with dark hair and a round face. He was perfect, in fact, except he wasn’t breathing and never would. I would never know what color his eyes were, what his voice would sound like, how tall he would be and so many other things.

I couldn’t understand why a loving God let this happen. Why this baby boy would not get to grow up, and why I had to suffer such excruciating pain. I wouldn’t understand for years.

The nurses said they needed to take my son to the morgue. So I did as I was told and handed him over. They repeated the litany of intended comfort that grieving parents routinely hear: that everything is going to be okay, that things happen for a reason, that my baby was in a better place, and that God never gives us more than we can handle. So I went home and picked out a casket and an outfit to bury my son in. And after the funeral, I changed my clothes and moved on like I was expected to do.

Just a few minutes ago, while typing this, I realized that this is the first time I have told this story in any detail. And it all came back to me as if it happened yesterday. There are people who know I lost a son, and I have discussed some of this with my daughters, but I never walked through it in my mind the way I’ve done just now.

Looking back, I never questioned what I was told to do or how I was “supposed” to feel. I just did what people said I should and I thought it was okay. But now, this very minute, I realize it was not.

I had thought I didn’t deserve to grieve, that I wasn’t permitted to feel great loss. Maybe because my pregnancy was an accident, maybe because I was going to give the baby up for adoption? I had chosen a lovely couple to raise him and we had discussed how he would grow up and what kind of relationship we wanted to maintain. Because of that, I felt I didn’t have the right to grieve my son’s death. But I didn’t want to share the loss with them either. I felt guilty for not being able to give them the child they wanted, and selfish for wanting to keep the pain all to myself.

I have lived with these feelings for 28 years.

Thirteen months after my son’s death, I gave birth to my second daughter. I needed her, longed for her. She soothed my soul. Later on, I had twins—in all, four daughters who brought love and joy into the world. They were my breath and the beat of my heart. I raised them by myself for the most part and watched them grow into beautiful young women with children of their own.

One day, when my second daughter was about five months pregnant with her first child, I got a phone call. Something was wrong with the baby. The doctors weren’t sure what, and my daughter was understandably scared. She lived in another state, so I cut short a business trip and flew there that day. There was a series of tests and an excruciating wait for answers, none of which were encouraging. My daughter and her husband decided to continue the pregnancy, knowing their son would have complications, but not sure to what extent.

Two months later I got a call saying the baby was coming. It was too soon! I hoped for the best but anticipated the worst as I again flew to her bedside. As she struggled to breath, I prayed that she and the baby could hold out a bit longer to give him a better chance at life.

But it was time. They rushed her to the operating room and I called my oldest daughter. We waited together on the phone in silence, praying that we’d hear a baby cry or that a nurse would come out and calm our fears. “Wait! Wait!” I cried out at one point. “I heard a cry. Maybe everything will be okay.” When a nurse did emerge, I asked if that was our baby and was he all right. “No ma’am,” she replied. “He has been delivered but he didn’t cry. He is on a ventilator. He was having trouble breathing and the parents requested all measures be taken to save his life.”

So while my daughter was brought to recovery, my grandson was taken to the NICU, without much hope of survival. I went to be with her. She smiled bravely and talked about how beautiful he was, and we cried a little. Eventually she was moved to a room on “the quiet side” of the maternity ward. The side where you didn’t hear babies cry 24/7 and the hall wasn’t filled with flowers, balloons and beaming parents. The side where no one ever wanted to be because doctors spoke in terms of feeding tubes, ventilators and hours, not coos, swaddling blankets and years. The side where nurses’ faces conveyed compassion, not joy.

Over the next 48 hours, we learned that the baby had a rare genetic disorder and would never breathe on his own. I realized then that because God had taken my son all those years ago, I could help my daughter now, making sure that she was allowed to feel and do whatever she needed to feel and do. So she would never have to feel the way I did.

When I lost my son, my family and friends didn’t talk about it. It was just something that happened, and you got over it and moved on. I never felt this was the right thing to do, but I was so young and traumatized that I never questioned it. It was simply what you did.

My daughter’s experience was very different, right from the start. Her doctors talked to her and her husband about their baby and what was going to happen, and they were asked how they wanted to proceed. My daughter was allowed to set her own timeline. She was able to hold her son and sing to him for as long as she wanted. No one insisted on taking him away. She got to dress him, whisper in his ear and rub his fingers and toes. We all rocked him and told him how much he was loved. Thanks to an incredible group called Now I Lay Me Down to Sleep, she now has the most beautiful pictures of him. And he hospital staff made her a memory box containing his bracelet and blanket.

After his death two days later, I helped with funeral arrangements. Once again, I was picking out a tiny casket. But I spoke with my daughter on the phone and described them to her could decide. I also bought several outfits so she could choose what her baby would be buried in.

Most importantly, I told her it was okay to be sad, even angry, and that she didn’t have to “get over it”—that she could talk about it as much and for as long as she wanted. I also shared with her that her arms would ache to hold her baby, and that the empty feeling was never going to go away. It would get easier to live with, but it would never disappear. And I said that even though she felt she couldn’t go on living, she could … and would.

I didn’t want my daughter to suffer as I had. And in trying to ease her pain, I gained insight into my own. I had always anguished over why my son was taken. There had to be a reason for such unimaginable tragedy. It was only with my grandson’s death that I could accept that there was no reason, no explaining the inexplicable. But in losing my own son, God had made me better able to love and support my daughter through the loss of hers. It wasn’t an explanation, but it was a great comfort.

One might think my story would stop here, but it doesn’t. Seventeen months ago, my 2½-year-old grandson died. His mom, the same daughter who lost her newborn, had put her toddler down for a nap, but he got up and somehow managed to pull a dresser over on himself, crushing his chest.

When I got to their house, five minutes away, paramedics were rushing in. My daughter was standing in the yard covered in her son’s blood, horror reflected in her eyes. This is where I have to stop because that loss is still too fresh and painful for me to go into detail about it.

But here is the takeaway for other families who have lost a child: You can’t stay in the dark place. It chews you up, swallows you, spits you out and then chews you up again. You have to know that there’s light on the other side, and that you can get there.

Yes, you’re overwhelmed, so deep in your grief that you can’t see outside of it. But it’s okay to talk about it. Don’t try to pretend that this never happened. People need to know that they can have a fulfilling life after experiencing the loss of a child. You don’t forget it. It never goes away. But you do survive.

Thank you for this opportunity to express myself. I hope my voice in some way can help others find theirs during a most difficult time.

Jen

Prairieville, LA

Matt and Roya Pilcher were among the millions of Americans who slogged dutifully through the process of filing their taxes in 2011. But that year they joined countless other bereaved parents in experiencing pain far beyond the inconvenience of paperwork. Not only had they lost their daughter Ava; the IRS subsequently informed them their claim had been denied because someone else had already claimed Ava – and the accompanying dependent tax credit – as their own. Now the Pilchers were burdened with proving to the IRS that their dead daughter was, in fact, their dead child.

“All we really have is her memory and her name. For someone to try to steal that, to appropriate that for themselves – it’s beyond reprehensible,” says Matt Pilcher.

How frequently bereaved parents face this form of secondary victimization is unknown, but identity theft presents a risk for all families who have experienced the death of a child. At greatest risk are those who have lost a dependent child, ages 0 to 18, because of the financial gain associated with the tax credit. The Centers for Disease Control and Prevention estimates as many as 40,000 children, between the ages of 0 to 18, die each year. In April of this year, parents who had lost their two-month old son, Nathan, more than 44 years ago discovered that his identity was stolen by a man who used it to escape from a halfway house in the mid-1990’s. And these are just two examples of this unthinkable crime.

While the scope of thefts have diminished in recent years, in May, IRS Treasury Inspector General Russell George testified before the House Ways and Means Committee that in cases of identity theft, innocent taxpayers often do not learn they are victims until their own filings are rejected, as was the case for the Pilchers. George attributed “significant financial and emotional hardships” to victims of this experience.

The Pilchers’ suffering did not end with the theft of their daughter’s identity nor the indignity of proving her loss. “One aspect of this ordeal that I found to be particularly maddening is that the IRS protects those individuals who steal the SSNs of deceased children, shielding them from both civil liability and criminal prosecution…When I wrote the IRS in 2011, providing proof that Ava was our daughter, and asking for copies of any returns that claimed Ava’s SSN… the IRS refused, stating that doing so would violate the privacy of those individual(s) who stole her SSN and filed the fraudulent return,” shared Mr. Pilcher.

Taking simple measures to protect families, and those they recently lost, from identity theft would appear to be a basic proactive step to protect not only the affected families, but also millions of hardworking taxpaying Americans. We have a responsibility, as a nation, to ensure the institutions established to serve our citizens and our national interests do not enable predators to victimize families who have experienced one of life’s most painful tragedies.