Episode 11 Grieving the Future: What Never Got to Happen After Child Loss

In this episode of Beyond the Loss, I dive deep into an invisible layer of parental grief: the aching loss of an unlived future. When a child dies, we don't just miss past memories; we grieve forward into the years that never came - the weddings, the milestones, the ordinary daily routines, and the next versions of our children we never got to meet.

I openly reflect on the unique shapes this grief takes, drawing from my own experience with my medically fragile son, Michael, as well as the devastating realities of sudden losses and losses before birth. This episode serves as an honest, compassionate permission slip to acknowledge that what never got to happen is a completely real and valid part of your loss.

In this episode, I discuss:
Grieving Forward: Why parental grief naturally reaches into the years and milestones that never arrived.
The Diverse Shapes of Loss: How the grief of a sudden loss compares to the pre-grieved dreams of a medically fragile child.
The Power of Physical Reminders: I share a deeply personal encounter in a boutique that triggered the tactile memory of mothering Michael.
Misunderstood Losses: Why losses in utero or early in life hold a vast, unlived future that society often fails to see.
Pattern-to-Practice: A gentle somatic reflection to help you notice, validate, and honor the unexpected waves of unlived grief without judgment.

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Website: https://sharonspano.com
Podcast: https://sharonspano.com/podcast/podcast-beyond-the-loss/
YouTube: youtube.com/@SharonSpano-BeyondtheLoss-Host
Substack: substack.com/@drsharon


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About the Show
Beyond the Loss: Life and Identity After a Child Dies is a podcast dedicated to helping grieving parents, bereaved families, and professionals navigate the emotional, relational, and identity shifts that follow the death of a child. Through compassionate conversations and clinical insight, we create space for healing, understanding, and honest reflection after profound grief.

Transcript Here

Transcript

SPEAKER_00 0:09

Welcome to Beyond the Lost. This is a space for parents who have lost a child in any way at any age, where no grief is ranked, explained, or excluded. I'm Dr. Sharon Spano, developmental coach, systems thinker, and a parent whose life was forever changed by the death of my own son Michael. Sometimes grief is not only about what happened, it's also about everything that never had the chance to happen. Welcome back to Beyond the Loss. After a child dies, we don't only miss who they were, we miss who they might have become. And that's what I want to talk about in today's episode of Beyond the Loss: Life and Identity After a Child Dies. We miss those conversations that we never had. We miss the moments we never got to witness. And we miss the ordinary experiences we assumed would be there someday, even if we had never fully imagined them. And then sometimes years later, grief rises up, not because of a memory, but because of a future that never arrived. And again, today I want to speak about the different layers of grief, this being one of them that we don't often talk about. The grief over what never got to happen. And I want to be clear from the very beginning. This is not about dwelling on what could have been. And it's not about tormenting ourselves with a life that we cannot live. It's about acknowledging a part of the loss that is very real, even when others cannot see it. Because when a child dies, something in the future dies also. Not the love, certainly not the bond, but the future relationship that we might have had with our son or daughter, the next version of them, the shared life that would have kept changing. And that's a different kind of ache, a different kind of loss. Sometimes people assume that grief is mostly connected to the past, to memories and to the life that we had and to what we remember, and maybe even what we're afraid of forgetting over time. This is one I hear a lot from parents. They're afraid they're going to forget what their voice sounded like, or their laugh, or the way their hair smelled. And of course, memory is part of grief. But parents also grieve forward. We grieve into the years that never came. And that's what makes our grief a little bit more complex. Here's an example. I have a friend who lost her daughter some years ago. And sometimes I think about how different the shape of her grief must be from my own. Her daughter was young, beautiful, healthy, vibrant, and full of possibility. And then in a matter of seconds, literally, the future they had imagined was gone. There would be no wedding, no baby showers, no grandchildren, no watching their daughter grow into the many versions of herself that she might have become. That kind of loss carries its own particular ache. It reaches into future occasions where this daughter might have been present. And I think this is true for many of you. And it reminds me that what never got to happen is not abstract. Even if your child was older when they passed away, there's still this longing for what could have been. And it's specific and it's personal. It is tied to your child, the family, the circumstances, and the future that had already begun to form around this life. My grief around Michael has its own shape, although it's different, because Michael was physically disabled and medically fragile. And the future I imagined for him had already changed many times before he died. In fact, it changed the moment he was born. And we were told that there was something wrong with the baby. So we did not live with the same assumptions that other parents may have. And that fact is not lost on me. I was not imagining in the same way a wedding or children or grandchildren or a long independent life for our son. From the time he was very young, much of my parenting was shaped by the reality of his illness, his limitations, and the uncertainty of his future. So the grief of what never got to happen was already present in some ways while he was still alive. I had already grieved certain dreams. I had already given those dreams up. I had already released the idea of the child I thought I would raise. And I'm often heard to talk about the loss of the dream child when I speak to parents who have other children with disabilities. I had already learned to love and care for the son who was actually in front of me with all the complexity and the beauty of who he was. But that doesn't mean that there was nothing more to lose because Michael kept living and he kept surprising us. So even with all the medical realities, there was still a life. There was still joy and there was still a relationship. There was still his presence in our home and in our family and in the rhythm of my days. And when he died, what ended was not only the caregiving, it was the possibility of anything more, of future vacations, future birthday parties, no more moments of joy with Michael. No more watching his face respond to something he loved, and no more wondering what might still surprise us, and no more chance to witness how his life might continue to reveal itself or to impact others. That kind of finality is different. And even years later, I don't only miss what was, I miss what can no longer be. I remember being in a small boutique one day when I heard a sound behind me, and it was not really anything dramatic, but something in my bones told me it was familiar. Something in me recognized it before I even turned around. And when I did, there was a young woman sitting in a wheelchair, and her parents were standing beside her. I found myself really just standing there in awe, looking at her longer than I knew I should have, really peeking through the many racks of clothes. Not because I was judging her, but because something about her physical presence reminded me of Michael in a very visceral way. I can't really even say what it was, the way she held her head, the way her hands rested on her lap, the way her body sat in the chair. There are so many similarities in the way people with disabilities who are wheelchair bound actually sit within that environment. It's hard to describe. But when you have loved and cared for a child with a disability, the body remembers certain things. And in that moment, I was not only seeing her, I was missing Michael. And I was missing the physical presence of my son in his chair. I was missing that daily reality of being near him and being able to just lean over and hug him at will. And I was aware that I couldn't approach the parents, I couldn't explain any of this to them. To say I once had a son in a wheelchair and he died would have been cruel, simply too much, would have been intrusive. And I didn't want to put that upon them because I know that in many ways, I represent any parent who has a child with a disability. I represent their worst fear that they too will lose their child. So I turned away, I walked out of the store, but the ache stayed with me for much of the day. And what I felt in that moment was not only memory, it was the recognition that I no longer have those ordinary moments with my son. I no longer have the routines, the sounds, the physical reminders, the presence of him in the world. And I know again, and I name this explicitly for those of you out there who have these moments and sometimes wonder: is there something wrong with me? Should I be getting, quote, over it by now? That too is part of what never got to happen. And again, it's not just about the weddings or the career or the grandchildren. We all feel these things in our own way. But the ordinary continuation of life for each of us as a parent who's lost a child is life will never be as it once was. And the chance to keep being a mother in the daily embodied way or a father in the daily embodied way that you were in the past. This is where I think we need more honest language. This is the point of this podcast is to open up these kinds of conversations. Because what hurts in these moments is not only absence, it is the awareness of a relationship that never had the chance to keep becoming, to keep evolving. So we often talk about missing someone, but grief is also about missing the life you would have shared with this person, missing the future shape of your love and your relationship together, missing the ordinary continuation of being a parent to this person, and sometimes missing the very version of yourself that would have existed, would have evolved if they had lived. That part can be very hard to admit because it's parents, we are so focused on our children, right? But when our son or daughter dies, our future changes dramatically. There is a self you were becoming in relationship to this person. And when that relationship can no longer unfold in the ways you expected, something in your own future changes as well. And this again is part of why we don't simply get over it. Even when the people around us hope and pray that we will. And it's not only that we're holding on to the past, it's that the future keeps revealing what's missing. That is why losses before birth or very early in a child's life can be so misunderstood. And I've often heard parents talk about this because people around them may assume that if there were fewer memories, if the child was not even fully formed yet or even born, there is less to grieve. But there's still the loss of the dreams. So any premise around that completely misses the nature of parental love because that love begins theoretically at the moment of conception or clearly when we know that we are pregnant with a child. The relationship does not begin only after the world has seen the child. The relationship begins with us at a very special and often referred to energetic level. It begins in the imagination of what this child can be, in the expectation of what this child can be, in the body, in the naming, in the space that opens up inside a family for this child, all the joyful moments of preparation. It begins in the future that starts forming around this baby. So when a baby dies in utero or shortly after birth, parents are not grieving less because there are fewer memories. They may be grieving a vast, unlived future that no one else ever fully saw. And that can be very isolating, very lonely. Because how do you explain the loss of what did not get to happen? How do you explain the ache of a relationship that was real, even if it was not visible to everyone else? I was made aware of this theme very clearly in my conversation with Dr. Tom Duda, who lost his son Tommy late in a pregnancy. And one of the things that struck me in the way Tommy described that loss was how much of the grief lived in what never got to happen, not only for him and his wife, but for other generations, his own parents. I'll be speaking with Dr. Duda next week about his experience of grief, identity, and the ways the loss of his son Tommy shaped their family across time, even up until now. This is why I think it matters to name this carefully. Not so we stay inside the imagined future forever. That wouldn't serve you as a parent, but so we don't dismiss it as though it isn't real. More importantly, we don't let others dismiss it on our behalf. There is a difference between being trapped in what never happened and acknowledging that what never happened is part of the loss. One pulls us away from life, the other allows us to tell the truth. And truth, when held gently, can sometimes soften something inside us. So there may be moments when you realize I miss who my child was, and I miss who I never got to see him or her become. I miss the memories we made, and I miss the ones we never had. I miss the relationship we live together, and I miss a relationship that never had time to emerge. Those are not separate griefs. They are different threads of the same love, of the same loss. And perhaps this is one of the most difficult parts of parental loss. The child, no matter the age, no matter the circumstances of their death, remains fully real to us. But the future with them becomes invisible to others. People may understand that we miss our child, but they may not understand that we also miss what the future might have held with this person. They may not understand that a parent can grieve someone at every age they never even became. That's a hard concept. It's abstract enough that it's hard to imagine. So if you have moments where grief rises around something that seems ordinary, I want to offer you this possibility. Maybe you're not going backward. Maybe you're not suddenly, quote, worse. Maybe something in that moment simply touched the future that did not happen. And maybe that future deserves to be recognized. For me, there's something so tender in being able to say, yes, this is part of my grief too. This particular ache, this imagined moment, this version of my son I will never know, this version of me that never came to be and will never come to be. This is also part of my story and it belongs. It doesn't have to consume me, but it does belong. As always, I want to offer you a pattern to practice for the week. I do these in the solo episodes, but I want to leave you today with something simple to notice this week. Again, not to intensify your grief. If it feels too intense, you don't need to do this, just put it down. And certainly not to pull you into pain, but hopefully to bring a little bit of awareness to something that may already exist and maybe you just haven't thought about in this way. Over the next few days, then, if grief rises up in a way that feels sudden or unexpected, see if you can pause and ask yourself gently. What is being touched here? Is there somewhere I feel this in my body? I'm always going to ask you to look at the somatic aspects of your journey. So what is being touched here? Is this about something I remember, or is it about something I never got to live? One is not better than the other. Just notice. And you might notice an unlived conversation, a milestone. Sometimes I imagine how tall my son would have been if he were not in a wheelchair. You know, would he have had the physical presence of my husband? Would he have been sinner, slighter? I think of those kind of things, but I don't dwell there. They've just passed through a moment. Maybe it's a role that your child never got to step into. What kind of profession would he have chosen if he had lived or if he had not been disabled? What is the version of your son or daughter that you never got to meet? And maybe just hold that version gently and love it gently. What is the version of yourself that you never got to see or witness? I'll never be a grandparent. But I live through that experience somewhat vicariously with my friends and their grandchildren. Again, you don't need to stay in this place long and you don't need to give it meaning. But if it feels right, you might quietly ask yourself or at least acknowledge this belongs to, this is part of what I carry, this is part of my story, this is part of what my love knows. And let that be enough. So to recap, when a child dies, we grieve their absence for certain, but we also grieve the future relationship that never had the chance to unfold. And sometimes I think that's the hardest part. We're still here, we're living these moments. What about the ages they never reached, the moments that never came, the ordinary life that might have been shared, the person they might have become, and the parent who might have become alongside them, who I might have become as a parent. What never got to happen, remember, is not outside the loss. It's part of the depth of your loss. And when we can acknowledge that with tenderness, again, we're not moving backward. We're allowing the full shape of the loss to be seen. Thank you for spending this time with me. If this conversation stirred something for you, you don't need to make sense of it right away. There's no timeline for understanding and no right way to carry what remains. Beyond the loss exists to honor parents who've lost a son or daughter and all the complexity that this implies, and to support the professionals who walk alongside them without comparison, judgment, or explanation. Wherever you are in the long after, you are not required to arrive anywhere else. Until next time, take gentle care.