In order to understand why parents who lose a baby desire to create a legacy on behalf of that baby, you first have to understand what a legacy is. A legacy is something handed down from the past. Essentially, it is what is left after someone passes away. When parents lose a baby during pregnancy or in infancy, what is left?
The baby did not have a life long enough to create what people normally associate with a legacy. When a life is lost so soon after it began, parents often feel like the legacy they are left with is one of grief, loss, and emptiness. It can be daunting to feel as though that is the only legacy available to them, so many parents strive to create a legacy that helps them feel connected to the baby and ensure that the baby's presence will always be known.
The loss of a baby is the loss of a future, and the idea of a lifetime devoid of getting to know and parent that child is devastating. What parents are left with is a lifelong grief where the intensity ebbs and flows as the years pass. Many parents seek to find new meaning in the loss and create a sense of purpose as a result of what they have been through. This desire for meaning coupled with the desire to continue to make the baby's presence known is what spurs the need for a legacy. Through a legacy, parents find ways to keep memories alive while also making new memories in the baby's honor as life continues.
The death of a baby informs the lives of the parents, and a loss of this magnitude comes with relationship changes and even shifts in values. Many parents have vocalized the fact that losing their child has made them acutely more aware of how precious life and the fact that life can change in an instant. As a result, grieving parents often live their lives with a deeper sense of empathy, generosity, and focus on the present. They tend to take less for granted and have a deeper sense of gratitude for the good in their lives.
This shift in perspective often creates a desire to share those feelings with others. Many parents find comfort, peace, and the legacy they desire by helping other grieving parents, lessening their isolation, and seeking to make the experience a little more survivable.
Creating a legacy is a difficult yet healing part of the grieving process, and it looks different for every family facing the loss of their baby to a life-limiting condition. A legacy brings parents face-to-face with the conflicting emotions of wanting to never feel this pain again while also knowing that the pain is a connection to their baby. The lifelong grief is one of the few things left after the loss, and that reminder is not something easily let go of. As a parent, you never truly stop grieving, but you find ways to live in the present while holding space for the past and making room for the future.
Whether you are a parent or part of a parent's support network, I want to provide insight into what a legacy can look like and why it is so important to parents. There is often a misconception that a legacy for a child lost has to be something profound, huge, or revolutionary, but the truth is a legacy can look however a family needs it to. Not every legacy has to be curated with the purpose of change, awareness, or connection on a nationwide or global scale. A legacy has value, beauty, and profound impact whether it touches the baby's family, one other person outside their network, or a vast amount of people.
In the same way that there is no guide or rulebook for grieving, there are no set rules regarding a legacy. Before diving into why a legacy is important and why you should honor that desire as a parent or member of a parent's support network, it is important to understand what a legacy can look like.
What does a legacy look like?
Every grieving parent has their own unique style and characteristics that will determine the type of legacy he or she is drawn to. Some parents find that the right legacy for them is something as simple and profound as keeping the baby's memory alive within their home and family. Other parents find that the entire course of their life is altered by the legacy they seek to create. No matter what legacy you choose as parent or are watching a parent create, there is no legacy so small that it does not have profound impact in this life.
Some of the ways I have seen parents create legacies are:
Speaking and Writing
Some grieving parents find comfort by telling their stories, whether through speaking or writing. Journaling, whether on social media or privately at home, can be a powerful way to honor a baby and document grief. I have seen families start social media pages or accounts to update families on their journey, their grief, and their future. I have seen parents write blogs and even publish books. Some parents share their stories by speaking on podcasts, at seminars, or at fundraising events. Words, whether spoken or written, are a beautiful legacy.
Traditions are the most common ways that grieving parents curate a legacy in honor of their babies. Creating new family traditions that incorporate the baby on holidays is a sentimental way to include family members and any siblings. Speaking from personal experience, this was the first way my husband and I began to carve out a legacy for our babies. We have traditions for their birthday like baking a cake and blowing out candles. At Christmas, we plan to include our daughter as we honor our babies by buying gifts for two girls and a boy that are the age our babies would have been each year. We plan to then donate those toys in their memory. Some families pick out a new ornament every year. Others make a point to visit the gravesite or light a candle on holidays or anniversaries. On birthdays, some families share memories and look at pictures of the baby as a way to keep their memory alive in their home. Traditions are a unique and profoundly sentimental way to create a legacy.
Many families find that volunteering at hospitals or with organizations that supported them during their grief is the best way to honor their baby. Volunteering can be a powerful way to include the baby's siblings as well as the family's network of support. Many parents find peace and comfort in giving back and making the grief experience more manageable for other grieving parents.
Similar to volunteering, service projects can be a chance to involve the whole family and community in honoring a baby. The beauty of a legacy of service projects is that it can look different every year. Services projects can take the form of planting trees, community outreach, being a part of another grieving parent's network of support, or donating items in honor of a baby.
Service projects are the legacy that my family has chosen in honor of our Bridget, Vivian, and Liam. For their third birthday, we wanted to donate something in their honor to the neonatal intensive care unit where they would have spent time if they lived. We owe our living daughter's life to that same NICU, so it felt fitting for us to donate to them. Our community rallied around us, and we were able to donate infant swings to the NICU. Knowing that our babies helped bring comfort to little babies in the hospital is a legacy that I am proud of as a mother.
Many parents opt to fundraise on behalf of an organization that means a lot to them. As a member of a parent's support network, this is an incredible way to help create a legacy for their baby. Even the smallest of donation made in remembrance and love for their child has tremendous impact for families. If you opt to support a family in this way, be sure to ask the family which organization or non-profit is dearest to their heart.
In lieu of flowers at the memorial for our triplets, my husband and I asked people make donations to a non-profit in memory of our babies. We were blown away by the number of people who honored our request. To this day, the remembrance cards mailed to us by the non-profit are some of my favorite keepsake items. To know that our babies helped a non-profit support other families facing loss gave me a sense of peace in a time when I never thought I would feel peace again. Some of our family members still ask us every year if there is a non-profit that we want them to donate to in honor of our babies.
If Carrying To Term is a non-profit dear to your heart as a parent or as a member of their support network, know that we see each donation made in memory of a baby. We honor that gift of remembrance by sending a handwritten note to the grieving parents. Donations made to Carrying To Term help us continue to provide personal support and resources like this blog to families who chose to carry to term despite a prenatal diagnosis of a life-limiting condition. For more information about giving to Carrying To Term, please visit our page found here.
Some parents have been so profoundly changed by the professionals they interacted with in their carrying to term experience that they change their own careers to create a legacy of giving back. I have met parents who have gone back to school and become nurses or doctors. I have met parents who became researchers, writers, public speakers, and policy changers. I have friends who created a foundation in their baby's honor. The foundation's sole purpose is raising money for organizations and non-profits who serve families facing perinatal loss.
I was given the opportunity and humbling privilege to experience this type of legacy. I now get to create a legacy for my babies by working for the incredible people who created Carrying To Term. Their vision is to ensure that no parent feels alone following a diagnosis, during pregnancy, and in life after loss. We work tirelessly to change the standard of care for families facing a life-limiting prenatal diagnosis, and we are here to help parents fit a lifetime of parenting into the precious time they have with their baby.
A legacy does not have to just be one of these examples. A legacy can be an ever-evolving mixture of one or all of them. For some families, creating a legacy like this is not helpful or comforting so they find their own ways to grieve, process, and look to the future. There is no right or wrong way to integrate grief, so long as the parent is processing their grief and not avoiding it.
Why is a legacy important?
The examples above are in no way a comprehensive look at what a legacy can look like. The very fact that legacies are unique and specific to the families creating them means that there will be legacies created that I cannot even begin to imagine. Grieving people have been known to drive innovation, change standards of care, and create new avenues for connection. The power that lies in the love left behind after a loss is limitless. Parents are incredible agents for change, whether that change has impact on the world around them or if that change simply means that they learn how to live again a world without their child.
If you are a grieving parent reading this, and you can identify with the feeling of needing to do something, make meaning out of, or simply reframe what has happened to you, you are not alone. What you are feeling is common, normal, and valid. That feeling is what I mean when I say that parents often feel drawn to the idea of a legacy. If you feel that pull, honor it. Do what feels right for you and your family in memory of your precious baby.
If you are a friend or relative of a grieving parent reading this, I want you to know that the desire for a legacy is good, valid, and worthy of support. Desiring to find a way to have their baby be remembered or seeking to make a difference in their memory is neither being stuck in or avoiding grief. As a parent's network of support, your job is to simply support them as the navigate what it means to live in a world without their child.
Support them in their desire for a legacy by offering your help or expertise. Support them by listening, validating, and encouraging. Support them by not saying anything if you do not understand or agree with the legacy they are fighting for. It is not your job to change or influence how they grieve or find meaning in this life. You cannot possibly know what you have not experienced yourself, so I encourage you to be a support for them without judgment or expectation.
The legacy they seek may never come to be or it may fail, but the process is important and every bit as worthy as if a tangible, successful legacy came to be. The reason why this process is so important has nothing to do with the legacy itself. Rather, the importance lies in the meaning behind it.
Fighting for a legacy is a healthy expression of grief. It is a coping mechanism. It can provide a new sense of balance and equilibrium in a family thrown off-kilter.
A legacy, by nature, is future-focused and a part of grief integration. It is how parents engage in life in ways that reconcile their desire to parent their baby with the reality that they will grieve forever.
A legacy is an act of relationship. It is about honoring their relationship with their baby. It is about honoring the part of them that is a parent, grieving and celebrating the little life that changed theirs.
A legacy is community building. Every legacy, no matter how far-reaching the impact, fosters a sense of connection among people. It draws in the older siblings who were there to grieve and gives context to the siblings who came after. A legacy gives grieving parents a common goal that draws them together. A legacy invites the extended family and network of support into the experience and allows them to express their own grief in a way that honors the baby.
Creating a legacy for a baby as a grieving parent is really no different than being a proud parent to a living child. If you are a parent, I know you can relate to the desire to share your child with others. As parents, we delight in our children's accomplishments, funny anecdotes, and sweet moments. When asked about our kids, we do not hesitate to share details about their personality, and I would venture to guess that you have been known to show off a picture or two of your much loved little one.
For parents grieving the loss of their baby, they still have these desires. They had months to learn their little one's personality as they grew in utero. They counted kicks and felt somersaults. After delivery, they had the chance to meet and hold their baby. They studied their little features, marveling at which ones resembled each parent. In those moments, it did not matter what the diagnosis was or how it changed their baby's precious features. It did not matter whether their child was born living or still. All that matter was that a precious little person was placed in their arms. They fought to fit a lifetime of parenting into fleeting moments. What they saw in those moments was the most beautiful and perfect baby to ever be loved, and when they held their baby for the last time, they did not suddenly lose the desire to marvel in the person that was.
Finding solace, purpose, and meaning in a legacy allowed them to face the future with courage, determination, and strength. It helped them learn to carry their grief in a way that made space for all the future could offer them while never losing sight of what they have lost. They learned to channel unending love and unimaginable grief into something beautiful.
For all of you grieving parents, I see you in your search for purpose and meaning, and I validate your desire to create something beautiful out of something so broken. I encourage you to create the legacy that you feel drawn to. Honor your baby, and honor your parenthood.
For all of you standing beside grieving parents, help and support them in this endeavor. You may not understand it, and that is okay. No one expects you to understand the victory if you have never fought the war. I do believe, however, that you can appreciate the comfort, peace, and sense of purpose a legacy brings to grieving parents. Truly, I will put it to you this way: the greater the love, the greater the grief, and what is greater than a parent's love for their child?
When a parent wants to speak about their baby, honor that because the desire behind a legacy is pure and simple: to share that their baby existed, had impact, and will never be forgotten. So, when, days, weeks, months, and years after the loss, a parent shares their grief or stories about their baby, please do not underestimate the war that parent waged to have a future worth looking forward to. The future they have managed to create is something they thought they had lost forever, or at the very least, it was a future they could not fathom finding peace, comfort, and joy in. That is the importance of a legacy and why it is such a significant part of the grieving process.