Name: Lindsay F.
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.