Crib Rail

Last week, I posted the story that inspired Grief Landscapes—my friend Lindsay's account of losing her young son. This week, her husband Adam shares his perspective.

Name: Adam J. Fleischhacker

Age: 40

Tell me about the person who died:

Miles was my boy. He was exactly sixteen months old when he died. He went to sleep at day care, and basically never woke up. I’m so thankful that his passing was peaceful. He spent about 24 hours on life support but we believe he was already gone. When we turned off the machines, I held his little body in my arms until his heart stopped. It was the most painful thing I’ve ever done, but so very important to me to have done it.

Miles was a joy. My favorite thing to do was to hold him face-to-face while we just shouted with each other. A joyous, life-affirming shout-off. He had crazy good dance moves, the most charming smile, and the brightest eyes you could imagine. Of course he could be a real crab too. He loved his bottles, and demanded them all night long. He didn’t have very many words but he said “Dada.” He was just starting to walk. Miles was a colicky little guy in the first six to eight months or so, and I always believed it was because he wanted to move. He wanted to get up and go, crawl around, explore, do stuff! So when he first started standing on his own and taking steps, he would get this amazing delighted look on his face like “Holy shit, I am walking! Can you believe this?!” It was magical to witness. That was Miles.

Tell me about an object that reminds you of the person who died, and why?

Miles used to stand at the foot of his crib and bite the rail, then shift his weight and rock side to side, sliding his bottom teeth back and forth. He left these nice big scratches in the white finish. People assume it’s sad to talk about your lost loved ones, but I love to talk about Miles. However, one of the things that’s hard about losing him at only sixteen months is that not very many people knew him, so there are fewer opportunities to recollect him with others. What I love about these scratches in the crib rail is that he quite literally left his mark. He really was a guy that wanted to take a bite out of life (distinct from his brother who was more cautious and laid back), and along the way he added some nice texture to his crib rail. 

What was your experience of grief like after your loss? How did it change over time?

At first I felt shock and numbness. That sort of became a fog that lasted probably a year. At the same time, I felt mentally clear and focused as far as what needed to be done for our surviving son, Miles’ twin brother Reed. I was open to accepting help, even ready to ask for it, which is normally very difficult for me. I didn’t want to be alone. I was so grateful for the family and friends who descended on us and I was scared for them to leave, so I spaced out the visits from all the people who offered to travel to see us.

Then there was the anger. There was no one to blame but I was (and sometimes still am) just furious at the world. If life were a game, I didn’t want to play anymore. I wanted to quit. Not hurt myself, I wasn’t suicidal. I just didn’t want to do anything or be anywhere. I wanted not to exist. I was tired, and slept a lot. Found it hard to focus or do any kind of work. But slowly I became more and more focused on what I wanted my life to look like moving forward. 

If you had to describe your grief as a literal landscape you've been passing through, what would it look like and feel like?

It’s empty and dark. Endless, yet also impossibly confining.

Did anything surprise you about your experience with grief?

I was surprised to be able to communicate and share. I didn’t feel the need to protect others from my grief. The profound darkness was surprising in a way—I guess that I could have the will to continue in the face of such horror was surprising. Also it’s surprising that it can open you up in a way. Open you up to accepting the love that you feel pouring in from others. Open you up to be more patient with your fellow human beings—especially strangers you encounter who might otherwise have frustrated you with bad driving or inconsiderate grocery store etiquette for example.

How did the people in your life support you in your grief? What was helpful? What was frustrating?

Just being there is the number one thing people can do. Be with you. Then of course there’s helping with the logistics and all the administrative BS. People from work were bringing food constantly. That was amazing, the volume of support and the number of people who wanted to pitch in. It was frustrating when people shied away. Or worse, when they tried to bring up their grief as a way to relate. I think my number one pet peeve is anyone who tries to talk about a miscarriage as a way to relate. It’s apples and oranges. I can’t comment on or judge anyone else’s pain, but losing a child that you knew and spent time with who had a personality is much worse than a miscarriage. It just is. 

How did people who were grieving the same person respond to the death compared to you? What similarities and differences did you notice?

My wife took it very hard, of course. She spent the first three days or so sleeping almost the entire day. She couldn’t eat at all. She just shut down completely. We were both just devastated obviously. But we were also grateful, right from the beginning, that he did not suffer, that no one missed anything, or was neglectful. That we truly felt nothing could have been done. My parents and siblings were devastated but I didn’t notice much beyond that, I was too consumed by my own grief. I didn’t feel much obligation to notice anything about what they were going through.

How did your private grieving relate to your public mourning?

They were pretty closely linked I think. I probably tried to keep the public mourning more shiny than the private mourning. Show my resolve to go on. Be strong and all that stuff. But I have many close friends that I was very comfortable being open with; and I knew, maybe instinctively, that it would ultimately be good for me and for them if I tried to be as open as possible.

Was there anything about your cultural or religious background that affected the grieving process for you?

Culturally I think we have a completely warped view of death and grief. We try to ignore or bury it. I did that too before this happened. It’s ridiculous. We are all going to the same place, so why do we pretend that something’s gone wrong when someone dies? We all die, we are supposed to die. I’m not saying it’s not tragic, and that loss is not painful. But the idea that life should be free of pain and grief seems to be a cornerstone of our culture; the idea that loss and death are an aberration - it just makes no sense.

Were there any personal or public rituals or structures that helped you in your grief?

We held a super small memorial service with just close family a few days after he died, and it felt essential to set aside that time to gather and commemorate. At the one-year anniversary of his death we travelled to New York and had a memorial with our closest friends, most of whom we had not seen since he died. That was extremely helpful to me. To have everyone come together, acknowledge his life, acknowledge our loss, and have our friends stand by us and say “Your loss is our loss too. We carry this burden with you.” To pass the one-year mark, to face all those people, to accept their support, and to remember Miles in that way, I felt as though I’d been through a portal on my grief journey.

How did your loss and your grief change you?

Losing Miles broke my heart, permanently. But it also broke my heart open. I think I’m more sensitive, more patient. I feel stronger (some of the time – there are still times when I am completely crushed, devastated beyond all reason). I feel more focused. I think the little worries in life bother me less. I’m no longer afraid of death. I want to be around to raise my other son, and there’s a lot of things I’d like to do in this lifetime, but I’ll be glad for the relief from this grief when I shuffle off. And although I don’t believe in heaven or any kind of afterlife that we can possibly understand—maybe I’ll be with Miles again, even if it’s just in oblivion. I guess the simple version of that is: either I’m wrong and there is an afterlife and we’ll be together, or I’m right and I’ll be gone so it won’t really matter. 

Adam Fleischhacker is a director, editor, writer and producer of film, television and video. He spent twenty years in New York producing and editing television, making independent films, and creating and hosting a web series for Food Network. He recently returned to his hometown, Cleveland OH, where he continues his work, karaokes with his wife, and plays with his son.

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This post is part of Grief Landscapes, an evolving art project documenting the unique terrain of people’s grief. Participants share an experience with bereavement, and I then photograph an object that evokes the person who died, transforming it into an abstract landscape inspired by the story. I’m looking for many more submissions and for a range of experiences, so please share widely! Learn more about the project and submit your story. - Mindy Stricke

Sneaker

Name: Lindsay F.

Age: 47

Tell me about the person who died:

Miles was one of my 16-month-old twin sons. Our struggle to conceive was a long one, and at 44, I was thrilled to be having twins, as I knew it was my last chance. My boys were both born big for twins, but Miles was bigger than Reed at 7lbs 8oz. He was always hungry, very colicky and seemed totally miserable until about 3 months, when he started to emerge from his alien-like infancy and grow into the bubbly, curious and fearless little boy whose barrel chest, stocky body, and cherubic face made it impossible to stay mad even after he’d destroyed all he could get his chubby fingers on. He was a terrible sleeper, but I got so used to his wake-ups that sometimes when he actually slept for a long stretch, I would secretly wish for him to wake up just so I could hold him and look at his long eyelashes and his face, round as the moon, while I fed him a bottle. He was joyful, bossy, and exuded a willful love and interest in life that was magnetic. He loved to be held and tickled, and was incredibly tuned into others’ reactions to him—he was 100 percent extrovert, and gazed into my eyes with all love and connection I could ever ask for.  

On the day that he died, in September 2014, I kissed him goodbye in the morning as he went off to daycare, and got a call just after lunch that he had became unresponsive during his nap. They eventually got a pulse, but had he survived he would have been brain-dead, and he died within 24 hours. The autopsy is unclear—he had a routine virus in his system—adeno virus C—and severe pneumonia. The lab lost the sample of his cerebral spinal fluid so were unable to determine whether the virus had spread to his brain or it was the pneumonia that killed him. There were no signs that he was sick—the daycare reported that he had a good morning and ate a full lunch. And then he just died, without a hint that there was anything wrong. I was told by several doctors that it was a perfect storm of catastrophic events in his body—a one-in-a-billion circumstance.

Tell me about an object that reminds you of the person who died, and why?

Though our boys couldn’t yet walk, they were required to wear shoes at daycare, so we bought them each their own sneakers when they were about a year old. Miles’ feet were a size larger than Reed’s, so this was one of the few things they didn’t share. To me, his sneakers represent the corporeal, which is so much of the way one relates to a baby—his pink feet that I squeezed and nibbled to no end. When he did start to walk, the sneakers represented his fearless will to move forward, to explore and delight in the world around him.  

What was your experience of grief like after your loss? How did it change over time?

At first I couldn't function at all—I couldn't eat or sleep. The shock and horror was unimaginable. I was so confused. My arms felt empty. Of course I still had Reed to hold, but my arms ached for Miles, and I imagined what a phantom limb ache might feel like.

Slowly, I began to return to the tasks of daily living. Now, much of the time I try to stay distracted and busy. I’m helped by talking with friends and family about their lives, the mundane tasks of keeping up with a household, and the joys and stresses of taking care of my surviving son. At those times I think I'm ok, that I can live with this and am getting used to the new normal. At other times the intrusive thoughts of that day’s chain of events and the well of sadness and longing are unbearable.

I worry about my surviving son incessantly, and am full of fear when he gets as much as a sniffle. Did I miss something with Miles? I have to save Reed from the same fate. It’s totally irrational and yet persists. I sometimes question why I'm still here. For a long time, I felt that losing Miles made me less myself. I only knew him for 16 months, but he was such a part of who I’d become, I wasn’t sure who I was without him. Talking to my grief counselor and friends and family makes it easier. As does numbing out in front of the TV for hours on end. Sometimes it seems like a different life, I feel so far from him. Other times it feels like it happened yesterday and my heart breaks open again.

Reed is too young to understand but has had adjustment issues, not surprisingly. This will be something he grows up knowing, and I’m sure his feelings and reactions will change over the years, and we will need to learn how to discuss it with him at each stage.

If you had to describe your grief as a literal landscape you've been passing through, what would it look like and feel like?

At its worst, a post-apocalyptic or desert landscape—empty, barren and full of ugliness. At its best, a sidewalk in Anytown, USA.

Did anything surprise you about your experience with grief?

The way I can't predict it. It’s hard to know what will set me off, and also, what will help me get back on track. The most surprising is the depth of the loneliness. My husband and I sustained the exact same trauma and loss but are rarely on the same page in a given moment, nor do we often talk to each other about it. We mention Miles all the time, things he used to do, what he’d be doing now, but to grieve to and with each other feels like too much. To bear it oneself is hard enough; to fully expose the depth of suffering to one’s partner feels like an onslaught. So we protect each other.

How did your people in your life support you in your grief? What was helpful? What was frustrating?

Friends and family just being there, not afraid to go there with me, has been most helpful. We’ve had lots of visitors and being able to talk, or not talk, has been a godsend. Every card, every gesture toward Reed, every mention of Miles’ name, any type of remembrance means so much. Least helpful are people who've said nothing. 

We moved to a new city after it happened, to be near family, and so I’m meeting a lot of new people. I’ve stopped telling people that I lost a child. I find that their reactions are too much responsibility for me; the shock on people’s faces, as well as the quickness to change the subject, is too much to bear. Most of the people we do know here rarely mention it. When I bring up Miles’ name, they are often silent. But I know people are doing their best around a topic that is misunderstood and kept in the shadows. 

Miles inspired this project and I’m so grateful for that. It would be much better if we all could learn to communicate about grief and loss—it is so taboo, so unmentionable that the bereaved can often feel isolated and different. We are “that family” now and I sense from many people just how “other” we are. Not bringing up my son because you think it will upset me couldn’t be more misguided. I’m always thinking about Miles. When you don’t shy away from the topic, or you say his name, you are standing with me in remembering him; his life meant something. I regret all the times that I didn’t mention a loss to friends and family who were grieving because I didn’t want to upset them. I too didn’t understand.

How did your private grieving relate to your public mourning?

I don't publicly grieve. I feel a pressure to keep it together in front of others and also to protect them, and myself, from their reaction to our story. I only feel safe exposing my grief to those I think can handle this level of suffering.

Was there anything about your cultural or religious background that affected the grieving process for you?

I wish I had religion or spirituality to turn to. It would be helpful to believe in something—a rationale, heaven, an afterlife. Not having those things makes it harder.

Were there any personal or public rituals that helped you in your grief?

I’ve written a lot about it, and to Miles directly.  And I’ve shared emails with good friends about my grief. Talking on the phone was too much for me in the beginning. Email correspondence was a way to stay connected, be heard and understood.

How did your loss and your grief change you?

I feel an understanding of the human condition that I might someday appreciate, but I’m still too raw to assess that. I’m much more sensitive to the plight of humanity and human suffering. Things just never feel "right" anymore, even if on the outside everything seems ok. I do have tremendous gratitude and appreciation for the people in my life, and for others with whom I have a positive interaction. When I’m present, even in the most routine of interactions, I’m allowing the power of connection to enrich me. Even my errands are different now—a conversation with a cashier seems to take on a greater significance. I am a more authentic person now. It's easy to see what really matters.

In Crib Rail, the next Grief Landscapes installment, Lindsay’s husband Adam shares his experience with grief after Miles’ death.

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This post is part of Grief Landscapes, an evolving art project documenting the unique terrain of people’s grief. Participants share an experience with bereavement, and I then photograph an object that evokes the person who died, transforming it into an abstract landscape inspired by the story. I’m looking for many more submissions and for a range of experiences, so please share widely! Learn more about the project and submit your story. - Mindy Stricke