Hand to Hold's Official Blog: Written by Parents for Parents

Learning the Language of Grief: Telling a Twinless Twin About Their Twin

My son woke up tonight from a nightmare. He told me his best friend was dead. As a parent of a twinless twin, the symbolism was very difficult for me. A best friend. Dead. Could the image in his nightmare have been his brother? How do you go about telling a little boy that there actually was a death in the family? That his dreams could have to do with someone that very really is missing? That every day you imagine what it might feel like calling out your dead son’s name? That you imagine the bliss it might bring to be able just to hear his voice?

Since my son William died I’ve struggled with how to tell his twin Elliott about it.

As much as I can speak to depression, PTSD, anxiety, or the other struggles that come with trauma, the hard part is grief. Because there isn’t anything to hold on to. There are no words. It’s an abyss, and there is nothing recognizable there. The image in my mind is of dark blue waters without foliage, without light. Dark blue. Language fails you. It is heavy and thick with water. Thusly, at least for me, it’s really hard to invite sweet Elliott into that abyss to swim with us.

For us, Bastille Day (the French revolution’s anniversary- July 14) was when everything stopped. We had thought from the first ultrasound that we’d had some crazy twin life coming. We prepared for them. When we found out they were both boys we thought it would be wild. Then I went into preterm labor. Then they were born too early. Then William got sick. We held him. They kept coming in to check him. We stayed with him, he was in our arms. We languished, staring at this beautiful tiny boy in our embrace, in disbelief that so soon after meeting him we would have to say goodbye, but forced by the very nature of our momentary experience to acknowledge that it would happen within hours. We loved him with every molecule in our bodies. We were breathless with grief and attachment. He died. I kissed him. They took him away. My memory of the night plays back in this incredible slow motion, each moment permanently burned into my memory. Then, Elliott spent the next three months in NICU.

It was unworldly.

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A walk at Salvation Mountain. Photo credit: John McGibbon

When you become a parent, you don’t expect that one of the lessons you’ll have to impart is that of how to grieve. Even though you know that your child will have their own pains, their own struggles, their own sense of groundlessness at times as they grow, it’s your hope that at least there will be a break, a reprieve, a pause before they have to learn how to navigate something so utterly difficult, a time where they can bask in unconditional love without the notion of pain. But sometimes that’s not the case.

I had thought that there was some way I could make myself into an “expert” about death and loss. I had thought that by reading numerous books on the subject, at some point it would dawn on me that there were steps: that there would be some kind of clear sense of understanding or path that grief forged. The “right” way of mourning would become apparent. These rumored “stages” I hear about that seem like they might have the power to neatly organize the miasma of emotions and feelings that swarm when meditating on this experience. That I would *know* it was time to tell Elliott, and that he would be ready for it. But no, unfortunately the ways of talking about it are almost as mesmerizing and confusing as the event itself. There is no right, there is no wrong. As parents, you often end up navigating the world of grief alone, and hope for the best. The destabilization of the loss of a twin at birth has it’s own twin, that of the telling your survivor and how to know when and how to do it.

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Soul collage® card representing the shifts that come with grief. Artwork: Kara Wahlin

And then the further you settle into this new world, this world without your beloved child, you realize that their presence is there, silently, in most of what you do. Their memory is what inspires you to move forward. You realize, too, what you missed in going through your own grief, when most people turned away from it. You realize that you, too, might have tried to turn away from it were it not for the love of your surviving twin. You realize that pain is one of the few things that connects humans to each other, and that in this very humbling way, your grief opens your heart to the plight of so many others going through loss, because there’s something about that unspeakable nature of suffering that binds you to others in that same place. You realize that talking about death isn’t necessarily terrible, that the culture around you is just so scared to speak of it because it is the unknown. You realize that by standing with your surviving child through grief, you can show them what it feels like to not be alone inside of it. That even if it isn’t predictable, even if it does make them “different”, even if it is confusing and disconcerting and heartbreaking, that they are not alone: they are loved, and they are in community.

In thinking of this I started to forgive myself, and I began to see the ways my husband and I had resisted the silence around our grief for William. That in not explicitly “telling the story”, we haven’t left our missing family member out of our lives; in fact, he’s with us every day, and he will be forever.

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Soul collage® card depicting my boys embracing, the world around us breaking open. Artwork: Kara Wahlin

We have adapted. We have grown. We’ve taken in what others do or have done to mourn. We’ve found and integrated what resonates with our family. I’ve tried to take on different ideas of how to practice grief, to make it visible, tangible. I really like the concept of creating art for those you’ve lost. I really like the idea of giving things away to strangers, in an anonymous form of shared suffering and remembering (the Kindness project through the Miss Foundation organizes this wonderfully). I really like the idea of breathing in and out, consciously, for everyone else in pain going through their own losses (the concept of “tonglen”, detailed in the beautiful book When Things Fall Apart by Pema Chodron). I’ve mentioned William to Elliott in different contexts and so has his dad.  We have memory objects and go to the annual memorial for all the babies that died at his NICU. Each year on Bastille Day I look through William’s photos, his things. I re-member his story, his strength, I imagine what he would have wanted for us as a family. And as foreign as this language is, I’m trying to learn it so there’s a chance it will be more accessible to Elliott, and provide comfort as he grapples with this huge unknown at some point in his life, as he takes in more of the story.

I watch as Elliott grows. I imagine his brother beside him. I think. I remember. I wish. “My best friend is dead” as a nightmare, maybe it’s random? Maybe it’s different than I think. But I’m fairly certain he remembers too, that he recognizes the symbols around him, the gentle ways his dad and I let him know (or remind him) he didn’t come into this world alone. I would give my life to be able to see them playing together. To hear their stories and find out what interests they have in common, to be able to embrace them, breathe them in together. Unfortunately that isn’t the world that we live in. However, I can show Elliott the ways that death is an innate part of life, show him how to simply be with someone while going through a loss, how to love when even a most critical person is missing.

Loss resources: The Miss Foundation

The Compassionate Friends

Loss of multiples: Center for Loss in Multiple Birth (CLIMB)

Kara Wahlin About Kara Wahlin

Kara (CA) is a marriage and family therapist/art therapist located in southern California. Since the preterm birth of her twin sons Elliott and William at 26 weeks and the loss of William at six days old, she's made it her mission to try and use her skills as a therapist to reach out to help, empower, and nurture other families going through the NICU experience. She loves art, exploring, literature, music and doing wild and wooly projects with her son and husband. You can learn more about her on her website, NICUHealing, as well as her personal website. You can follow her on Facebook or Twitter.

Comments

  1. Lara Kitchens says:

    Beautiful! I felt like I had written this. My twin boys, Evan and Blake were born at 24 weeks 3.5 years ago. Blake passed away at 10 days old and Evan survived. I’ve often wondered if Evan knows that Blake is missing. We have not yet gone into any details about his brother with him, but we make sure to keep his memory alive in our home. Thank you for sharing!

    • Thank you for your comment, Lara. I am so sorry to hear about your loss of sweet Blake. I think for parents of twinless twins the experience is very unique; since the babies had that time together in the womb, do they have a sense that someone is missing? I ask myself that question all the time.

      It took a long time for us to take away the pressure that comes from “knowing how to do it right” with regards to talking to Elliott, and I think that keeping William’s memory close to us shows Elliott that William is a part of our every day life, but it’s not necessarily important to “sit down and have a talk”, especially considering Elliott’s young age. We realized that we had to gauge things based on when Elliott was ready, and that there was never going to be that perfect moment when it made sense to tell the whole story. It’s like we realized the story was all around us, regardless of whether we spoke to it in a specific way or not.

      So many hugs to you and Evan and your family, and with Blake in my heart… Thanks again for commenting here. x

  2. Just the read I needed. I gave birth to twin girls at 25 weeks. Sweet Kensi was with us for 48 minutes and Kylie is growing stronger each day in the NICU.

    I find myself thinking about how to tell her when that time comes, and if she feels that a part of her is missing.

    Always helpful to hear from others who are on this same journey. Thanks for sharing

    • Hi Tara~ I’m so glad to hear that this post was helpful for you. I am so sorry to hear about your sweet Kensi, and my heart is with you and your family as you accompany Kylie on her journey through the NICU.

      I identify strongly with the notion of having so much on your mind when your survivor is still struggling in the hospital. We thought of William every day too; and how everything would look years later.

      My only advice is to give yourself a lot of empathy and understanding. As you go through your journey, the ways of mourning that make sense for your family will come to you, and you will be able to incorporate them into your life in a way that feels meaningful.

      So many hugs to you and your family, and thanks for commenting here. x

  3. I had twins 11 years ago at 24 weeks.. we lost one after after 12 days. I’ve worried every day since then that my son will grow up feeling *incomplete*. And sometimes I think he seems so lonely.. but he has Aspergers, so it’s hard to tell. He has many issues he deals with being on the spectrum. But he’s happy, and mostly healthy, and he’s HERE.

    • Hi Sammie~ Thank you so much for commenting; and I’m so sorry for your loss.

      You bring up such an important point about respecting our survivors’ journeys and the immense gratitude a parent is granted after having gone through grief. Still having an incredible individual in our lives who most often had to fight to be here, is such a gift. Your son sounds like such a warrior.

      It’s also so crucial to hear from parents further down the road, who have seen the ups and downs of their surviving twins and yet can speak to it in such a way that reflects the growth that comes through going through grief. I really appreciate you speaking to that here.

      Thanks again for your comment, and hugs to you and your family. x

  4. My god… I could have written this too. I lost my own William 33 hours after he and his brother, Linus were born. Their birthday is in a couple of weeks. Every step is so bittersweet. Thank you for this. I needed to know someone out there understands the lingering grief, PTSD, depression and guilt that comes with this horrible journey.

    • Hi Jennifer~ Thank you so much for commenting here and speaking to your story. I’m so sorry for your loss of your beautiful William.

      Their first birthday was so hard for us too– in the months leading up to it I thought maybe we were out of the mire (I know now I was a bit in denial), but as soon as we got close, it was like all the memories came stumbling back all around us. For us, it helped to come up with deliberate ways of remembering him, so that we knew there was a space for that and we didn’t feel pressure or that we were silenced in our grief. I hope that as time goes on you find some reprieve– it brings a tear to my eye to read your post; it is so hard. So much love to Linus and you and your family.

      Unfortunately I think there are more families in our “group” than I ever had realized previously, but you’re so right in that it’s containing and reassuring and important to share our stories. There’s an Adrienne Rich quote I stumbled upon recently that says “There must be those among whom we can weep and still be counted as warriors.” It resonated with me so much when I think of all the moms and dads that I’ve met that have gone through the loss of their babies. Thank you so much for commenting here. x

  5. There is NO right or easy answer. We have always been open with our Daphne about her identical twin, Leah, whom we lost. Daphne is now 6 and sometimes articulates that she wishes she had her twin. We planted a tree in Leah’s memory and we visit it as a family (we also have a 9yo daughter ). As painful as it is for me to have lost a baby and then sit by her sister in the NICU for 5 months, it is even harder to see my kids expressing their grief.

    • “As painful as it is for me to have lost a baby and then sit by her sister in the NICU for 5 months, it is even harder to see my kids expressing their grief.” — So heartwrenching and so absolutely expressive, Melissa. Thank you so much for commenting here, and speaking to your family’s experience. I am so sorry for your loss of little Leah.

      Your post reminds me a bit of how much I used to take for granted how lucky things were in our lives, and how little I understood of what it might be like to live with loss. It stands as a reminder to how challenging family grief is, and that it isn’t something “resolvable” or subject to “passing over”.

      Hugs to you, your family and your sweet girls. x

  6. Isabella Tedesco says:

    I am 17 years old. I was born 2 months early. I had a twin who sadly passed away when we were six months old. Apparently I used to have one on one conversations with him when I was able to talk. I was wondering if this is even possible, or if I was just talking to myself every time that happened.

    Thank You,
    Isabella Tedesco

  7. Samantha Johnson says:

    Absolutely gorgeous word’s. It’s as though the hearts of the grieving families who’ve experienced the loss of a twin beat as one, hurt and grieve as one. Across the world.
    How someone can verbalize the thoughts in my head that I cannot say is only achieved through the commonality of grief, specifically twin loss.
    You are an amazing writer and a true inspiration.
    It was as though I was reading something I wrote but couldn’t remember writing.

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