As parents facing the loss of your baby to a life-limiting condition, you have a story wholly unique and worthy of being told. From the moment of diagnosis, your lives have been upended, and the path you will navigate in the months following will grow you in ways you never expected. Grief is a powerful experience that changes you, your relationships, and the way you interact with the world around you. Any grief has impact, and the greater the love, the greater the grief. Truly, there is no love greater than the love a parent has for their child, so it makes sense that the greatest grief a person can face is that which follows the loss of a child.
As you have begun to grieve and prepare for the loss of your baby, or as you have begun to navigate living in a world without your baby, you may have experienced a sense of isolation. A loss of this magnitude can often leave parents feeling utterly alone, as though no one else can understand or empathize with their grief. People cannot truly know what they have not experienced themselves, so many parents seek out connection with people who have been through a similar loss. In cases where a parent does not know anyone who has lost a baby, it can feel impossible to find that connection.
This was true in my experience. I did not know anyone who had been through a loss that was willing to connect with me, so I scoured the internet, looking for a sense of connection and proof that I was not alone. I needed to read someone's story and be able to say, "me too." I needed to find a story that I resonated with and made me feel less alone in this life after loss.
Each story I read gave me pieces of what I needed. Some stories simply reminded me that I was not the only grieving mother on the planet. Other stories validated my feelings or normalized my thoughts and behaviors. I read blogs, online magazines, and social media posts, desperately trying to find a story that looked exactly like mine. I wanted a roadmap that perfectly laid out the trajectory of my grief and all the landmines I would hit. I never found a story that looked exactly like mine, and it felt isolating at times.
I realized later that I was looking for my babies in other people's stories. I was looking for my words buried in theirs. I was looking for something that I could not and would not find because I needed to share my own story. There is never going to be a story that looks exactly like mine just like there is never going to be a story that looks exactly like yours. Every single pregnancy and every single precious life born and lost too soon is unique and worthy of being known.
Although I wish that no parent ever knew this grief, I do believe that when we, the grieving parents, share our stories, we can be a piece of another grieving parent's puzzle. We can be a marker on their roadmap: a sign that someone walked that point of their path before them. These little markers remind us that we are not alone and that there is wisdom, comfort, and even hope to be found in the stories of other bereaved parents.
Your words have power. Your particular story is important. It can be tempting to think that because there are so many stories written or spoken on the internet or in front of crowds of people or published in books that there is not a place for your story. That could not be further from the truth. Every story helps change the landscape of grief for the parents who walk it after us. Every story helps change the standard of care. Every story builds community and connection.
When you share your story, you build resiliency. I do not believe that some people are just born stronger or more adaptable or better equipped to handle life's tragedies. You did not receive a prenatal diagnosis of a life-limiting condition for your baby because you are somehow a super human, capable of bearing the weight of the death of your baby. You chose to continue the pregnancy and face the loss of your child because it felt like most loving, parental thing you could do. You wake up every day and put one foot in front of the other because you have to, not because you are preternaturally strong.
Every single day, you build resiliency. When you embrace the weight of your grief and feel your feelings, you build resiliency. When you let yourself laugh for the first time or experience a twinge of hope for the future, that is resiliency. Resiliency looks like learning through the process, being open to all that it brings, practicing self-care, and finding connection in the midst of heartbreak. Sharing your story is a testament to your resiliency.
Sharing your story is a natural desire buried deep in your parental instincts. The desire to share about your pregnancy experience and the life you created is no different than any parent who shares pictures, details, or anecdotes about their children. We have an instinctual desire for connection, and that desire does not die simply because your baby will or did. Your story is your connection to your child. It is a valid and beautiful legacy of much loved and wanted baby.
Sharing your story is a powerful part of the grieving process. There are countless reasons why giving words- whether spoken or written- to your experience is so tangibly effective, but the main reasons are because it allows you to control the narrative, vulnerability breeds intimacy, words are transformative, and your story helps others.
You control the narrative
Since receiving the diagnosis, so much of your life has been out of your control. There have been moments where you have made decisions or felt like you had a voice in this process, but at the end of the day, you are simply unable to change or control the outcome that follows the diagnosis. That lack of control is a loss. It is a terrifying, unfair, and downright cruel part of this experience, and I think most of us struggle with the weight of it.
As a result, we, parents, often grasp at any semblance of control. Seeking a sense of control is not always a bad thing. We look for ways to make memories, squeeze a lifetime of parenting into fleeting moments, and grapple to create a legacy that allows us to live in a world that feels less vivid, carefree, and complete. Those attempts for control are valid, good, and a part of building resiliency.
Sharing your story is another avenue for gaining a sense of control. From the moment of diagnosis, you have been given an overwhelming amount of information. You have consumed every piece of knowledge the internet can offer you on the diagnosis and what to expect. You have agonizingly researched before making every decision. Yet, all of this information still does not paint a full picture because it is missing the personal piece that makes your, your significant other, and your precious baby's story so unique.
It can be difficult to navigate the desire for information the people in your life have. They want to know what is happening, sometimes requesting more details than you wish to give. They want to know how you feel and how you are coping. They want to know how to help. These desires are good at their core, but they can feel like expectations or demands when you are drowning in information and unknown.
When you put words to your experience, you get to choose what information you share. You get to set the tone. You get to paint the picture. You get to control the narrative. It is your story, and yours alone. You get to share it on your terms. Choose the platform that works best for you. Is it individual texts? Is it assigning a point person to disseminate information? Is it regular social media posts or an online journal? Over time, it might even become public speaking, maintaining a blog, or seeing your story published on websites or in a book.
The beauty in controlling the narrative and choosing the platform is that you can share your story as many times as you want, in as many forms as you choose, at any point in the process. Stories are ever-evolving. You can share it as frequently or infrequently as you need to. There is no timeline for grieving a loss of this magnitude, so your story always has a place in the world. Share it however, with whomever, whenever you choose.
Vulnerability breeds intimacy
For those of you who feel alone as a result of your grief and loss, sharing your story has the power to lessen that sense of isolation. Putting words to your experience is an act of vulnerability. To be vulnerable is truly one of the most courageous things a person can do. It is easy to buy into the lie that you have to be strong or stoic in your grief. The world will tell you that you are broken for needing to share or for still grieving years down the road, but let me tell you, the world is broken for believing that. You are not broken. You are human, and you are beautiful in your vulnerability.
The gift of vulnerability is that it breeds intimacy. When you give words to your loss, you are inviting others in. You are letting them see what they otherwise would be blind to. People cannot know what they have not experienced for themselves, so they cannot know how to best help or comfort you if you do not let them see the reality of this life.
To be clear, you do not owe anyone your story. No one has a right to hear it unless you choose to share it, but I want to encourage you to consider sharing vulnerably with those closest to you. Lessen your own isolation by letting them in. Lessen their trepidation of entering in by giving them insight.
This connection is so incredibly powerful. It allows you to connect deeply with those in your life who are also grieving and with those in your life who are genuinely willing to hold your hand through this. You need this connection. You were never meant to walk the path of grieving your baby alone. Do not fear vulnerability and the intimacy it can bring. Lean into the initial discomfort of laying bare your heart and soul. You may encounter people who do not deserve the gift of your vulnerability, but I can all but guarantee there will be people who lean into your story rather than lean away.
Words are Transformative
Words are powerful, more so than we often give them credit for. Our words have the power to build someone up or hinder them. I can imagine that you know this all too well. I can imagine that you, like me, could share stories of people who said the exact thing you needed to hear. I can imagine that you, like me, also have stories of people who said something painful, damaging, and even anger-inducing. I am sure that you remember how your doctor delivered the news of your baby's diagnosis and the options available to you. People's words resonate and stay with us long after the conversation has ended.
In the same way, the words you speak to yourself and to those closest to you have power and impact. Your words have the ability to transform the way you feel about your story, how you grieve, and what you believe is true about your future.
When you put words to the hard realities of receiving a life-limiting prenatal diagnosis and the journey of carrying to term, you are validating your own experience and that of others. When you speak about the moments of joy, the memories made, and the beautiful time you had with your baby, you are providing yourself with a sense of peace, and you are giving hope to other parents. Your words are a legacy for your baby. Sharing your story can help you find your voice as well as a path or sense of purpose following the loss.
As grieving parents, we never really get a sense of closure. Rather, we get to the point of grief integration. We never get over it, but we do learn to live with the grief in a way that allows us to continue living, not just surviving. Every single time you tell your story, whether it is coupled with sobs or smiles, you are reframing your experience. You are taking something so broken, devastating, and terrifying, and focusing it through the lens of love, beautiful heartbreak, and normalcy.
For those who have not lived this experience, it is easy to feel removed from it. It is easy to apply their own values or beliefs about how they would have handled it if it had been them. When someone shares intimate insights into their experience, they can no longer see it through their own lens. They begin to see it through the eyes of a grieving parent, and they are able to empathize more with what these parents have been through and who they have become as a result.
As the grieving parent, it is not your job to transform anyone through your experience. I simply share that result with you as an encouragement. Your story is beautiful, impactful, and worthy of words. People respond to personal stories with heightened empathy and emotional engagement because vulnerable words are powerful and transformative. We become immersed in and changed by narratives that we connect with.
When you immerse yourself in your own story long enough to put words to it, you are allowing yourself to connect with what you have been through. You are holding space for processing, grieving, and learning. You are reframing what has happened, and you are transforming yourself into someone who can live with a critical piece of their heart missing.
Your Story Helps Others
If there is one thing that grieving parents have in common beyond the deep love they have for their babies, it is a desire to make some sort of impact, improvement, or connection for other grieving parents. Not everyone desires to start a foundation, write a book, or speak in front of a room full of people, but almost every single parent I speak with expresses the desire that no other parent feel as alone, scared, or powerless as they did. I have had parents share with me how beautiful and supported their experience was, and they have shared that they wish every parent had the kind of support, connection, and understanding that they did.
Whether your desire stems from a positive or negative aspect of your experience, the desire to help other grieving parents is valid and so normal. Sharing your story is the easiest and often the most powerful way to speak into the lives of other grieving parents. When you put words to your experience and give a face to child loss, you are not alone, and neither are the people who read or hear your story. You are placing a flag on a landmine, warning a parent that it is coming and providing both coping skills and comfort when they feel the impact of the blast. You are giving words to a grief so big that it is virtually indescribable, and by doing so, you are validating the feelings that accompany that grief. This is a powerful experience for both you and the people who read or hear your story.
One of the most beautiful byproducts of sharing your story is that it opens space for others to share theirs. I once had the privilege to meet a woman who told me that when she shared about her miscarriage, her grandmother shared for the first time that she had had one, too. Her grandmother had never felt like she had the right to share her story or publicly grieve. Her granddaughter's story gave her the permission and the freedom to put words to her own experience.
Sharing your story gives other people permission to share their own. As people, we crave connection on a deep level, and so when someone shares vulnerably, we resonate. We believe them to be trustworthy and safe, so we begin to open the door to our own vulnerabilities.
Not every grieving parent will feel drawn to sharing their story publicly. That is perfectly okay and valid. There is no right or wrong way to share your story. Whether your story reaches one person or millions, your words have impact and value. If sharing your experience and perception brings you closer to your significant other, your story accomplished something tremendous. If you journal your story and the only person who reads it is your future self, your story accomplished something worthwhile.
There is no rule that says you have to share your story. These words in this post are simply here to give you permission and encouragement to share if you choose to do so. This is your story. You get to share it or not. It is entirely up to you. If and when you choose to put words to your experience and your baby's life, do so with freedom and the belief that your story matters.
There are no rules to govern when or how you share. You do not have to share publicly. You do not have to have a platform. Your words have impact if they only reach you. Your words have impact if they are heard or read by every grieving parent in the world. I can attest to the validity that words have impact no matter who hears them. For years, I shared some of my words for the sake of other people, and I also saved some of my words for my own sake.
I have stood behind podiums in rooms full of people and shared my story. I have hugged women who found themselves in my words, and I have grieved every precious name they have shared with me. I have written social media posts, and I write for this blog. As a result, I have connected with more grieving parents than my heart ever thought it could handle. Yes, my story and my words have reached them, but their stories have also reached me.
Equally as important as the words I have shared publicly are the words I kept private. The journals I keep personal have served as a beautiful map of the depths of my love and breadth of my grief. Those words let me revisit who I was then and see how I have been bent and reshaped into a person I never knew could exist. I revisit my words often when I feel like I cannot see my way out of my grief, even three years down the road. That is the power of the stories we grieving parents carry.
It is a distinct and humbling privilege to get to the chance to write for this blog every week. It is also a true honor to have my story published on the Carrying To Term website. We believe so much in the power of stories, and for that reason, we have an entire space on our site dedicated to stories. Every story on our site is written by grieving parents in their own words. They put words to their experience and have shared vulnerably so that other grieving parents might find support, connection, and comfort.
I invite you to spend some time reading the words of these parents. My hope is that your will find pieces of your puzzle in their stories. They were written with each of you in mind. You can find these beautiful stories here.
I also invite you to share your story with us and the families who come to Carrying To Term for support, resources, and connection. If you are ready to share your story, we want to help you. We want to be your platform. We want your experience and the life of your precious baby to be known to us and to the families we care for. Your story matters, and we would be honored to publish it. The offer always stands, and when you are ready to share your story, you can begin that process here.