Grief Journal: Haunted by Hindsight

When you lose a child the way we did, you come to understand that ghosts are real—they’re just not what you thought.

You aren’t haunted by your dead child’s spirit, like in the movies. There are no voices in the night, floating white phantasms or morse code rappings. But you are haunted by his memory. Driving past his school and seeing his friends playing outside at recess, you remember his tales of recesses past. Turning off the lights in what used to be his bedroom, you see the glow-in-the-dark stars he saw every night. Cleaning the house, you still find abandoned LEGOs and scraps of drawings. Kissing his beloved Beary Bear (who now lives by your bed), you catch the faintest hint of little boy smell. 

Everywhere you look or go, there are memories and reminders of the son you loved. Sometimes, it’s comforting. Sometimes, it’s torture. Often, it is both. 

But the true haunting is “what if.” 

What if we had gone to different doctors? What if it hadn’t taken a year just to get wait-listed for the crucial pediatric psychiatric evaluation? What if we had changed his meds? What if we had pulled him out school? What if we had been stricter about his internet access? What if we had listened more, focused more, loved more? 

I could list a thousand “what ifs.” Sometimes I torture myself with them. Losing a child this way is a fundamental failure as a parent. Parents are supposed to keep their children safe. With this particular child, our job was to keep him safe until his more-immature-than-most brain and impulse control matured and caught up—while still helping him grow and feel competent. 

It was a balancing act that crashed. I failed at the only thing that ever truly mattered. 

They say hindsight is 20/20, but not in a situation like ours. No matter how we look back, we can’t gain “understanding of a situation or event only after it has happened or developed,” like the dictionary promises. Because all of the “what ifs” don’t help. 

In my rational moments, I know that we made the absolute best choices we could with the information we had. I know how much we loved him, supported him, fought for him, listened to him. I know that what happened was almost surely the result of an impulse his brain was too immature to understand or manage. 

Yet, hindsight haunts me, wrapping me in heavy chains. I walk through this world haunted by the thought of “what if.”

Grief Journal: Inside the Box

Someone sent me a description of grief that’s making the rounds. Maybe you’ve seen it.  It describes grief as a ball in a box with a button that triggers pain. At first, the ball takes up most of the space in the box, and the pain button is constantly pushed. But eventually, over time, the ball gets smaller, and only occasionally triggers the pain button. 

It’s a good analogy. I mean, grief is a really hard thing to describe, and so individual. But this captures the kind of grief that is initially overwhelming and sad, but that gradually, over time, takes up less space in your daily existence (if not your heart).

It describes how I feel about the loss of my sister, and my mother. Sometimes something will remind me of them, and I’ll feel an intensity of grief, often out of the blue. But even though I think of them every day, most of the time the grief is manageable. I’ve learned to live with it. I can cherish the many good, wonderful memories and those have come to outweigh the loss I feel.

It doesn’t describe how I feel about the loss of my son. The closest analogy I can come up with is one I’ve used before—the grief is like a suit made out of razor blades. I never take off that suit. Over time, I’ve learned to hold myself so that every tiny movement doesn’t cut, but the fact is, that suit cuts me and causes pain over and over and over again, every day, nonstop.

Another analogy is that somehow, I don’t get the air that I used to, and that I need. I can still function and live, but I’m crippled by the fact that there’s just not enough air for me to breathe and no one can give me more air. 

The fact is, something in me is irretrievably broken. I get up every morning. I work hard, every day, to keep a roof over our heads and give my kids a good life. I’m still a wife, mother, friend and colleague. I can laugh, and be silly with the kids, and dance in the kitchen while we cook dinner. 

But. Every day it is a choice to get out of bed. I have to choose to be present. The ball of grief bouncing around my head isn’t smaller; it still hits that button all the damn time. I just make the choice to go on. Because that is what you do.

You just find a way to go on, even when it hurts. Even when you can’t breathe. Even when you’re broken. Because you just do.

Grief Journal: Unexpected Grace

I opened a letter from our local library today. They outlined all of the contributions that have been made in my son’s honor. It’s a pretty substantial—and humbling—list, one that covers books, games and even kid- and teen-oriented programming.

This would have made Charlie happy. He adored our library and was super excited about the fact that he was old enough last summer to walk or bike there himself. Our library is a small-town gem with big city amenities, and in our view, a real selling point for our town. It makes me happy that the library—a place my son loved so much and spent many happy hours in—is benefiting as people honor his memory.

I’ve mentioned before the outpouring of support for our family in the wake of my son’s death. I never, ever expected to be the recipient of a GoFundMe, but the generosity expressed there really helped us when we needed that support. It made a difficult time a lot easier and wiped out most of the worry that comes with that extra financial burden; not just funeral expenses but time off work and therapy and so much more that helped our family cope. And, we were able to pay it forward in ways meaningful to our son. 

I’ve also spoken about the outpouring of support we received and continue to receive, from our friends, neighbors and community. Food, flowers, visits, hugs and love. Someone lit a candle outside our house on Christmas Day. So many remembered his birthday. And our cherished neighbor-family commissioned this sculpture that makes me smile every time I see it in my house:

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Beyond that, so many people have chosen to honor Charlie. We’ve gotten notices of donations made to plant trees (the kid loved trees), to sponsor Camp Invention scholarships for kids in our town (he loved that too), to support mental health groups focused on children, and so many more.

This outpouring of love and support is an unexpected source of grace; it helps make the unbearable something we can actually get through, day by day (or minute by minute). I don’t even know how to properly thank people, or let them know how much it means. I try really hard to send individual thank-you notes to everyone if I can, but I don’t always know names or addresses. 

Just know that we are truly and deeply humbled and grateful that our son touched your life, and that he inspired you to do something good in the world, in his honor. We don’t ask for it or expect it, but it is beyond lovely and so comforting. 

I like to think he would have made the world a much better place in some unique and totally Charlie way—he just never got the chance. But maybe he is still changing the world, one memorial at a time.

Thank you. Just…thank you. 

Grief Journal: It Can Always Be Worse

My first child was a preemie. Born at 30 weeks, he weighed 2 pounds, 10 ounces and was only 14 inches long. That’s pretty tiny for a 30 weeker, but I had HELLP syndrome that caused IUGR (intrauterine growth retardation). I’ve mentioned before that both he (and I) almost died; not an exaggeration or bid for attention, just a fact. He spent the first week of his life on a CPAP machine, bathed in blue light and dealing with a PDA that refused to close with the medicine they gave him because they were afraid to do the surgery.

I remember that time in the NICU well. Every March, when the March of Dimes does their fundraising, I read the stories of other preemie moms and I nod in recognition and thankfulness that my preemie is one of the lucky ones. It’s a club you never want to join, and you can only understand what it’s like if you’ve been there—the fear, the helplessness, snatching sleep and trying to pump enough milk when you don’t even know if your baby is going to be alive for the next feeding. Not knowing that if he does make it, will he face any of the permanent disabilities so many preemies deal with—blindness, brain damage, lung damage, feeding issues, and on and on. 

I thought those two weeks were the worst I would have to face in my life—recovering from near death, agonizing over whether or not my newborn little boy would live or thrive, and oh yeah, having my partner of 14 years dump me for another woman. 

But I got through, thanks to the support of family and friends. My preemie is happy and healthy and such a kind, smart kid. We were so, so lucky that he never suffered any serious side effects. I found the love of my life, and my ex found his; we’ve built a strong co-parenting relationship and are far happier than we would have been if we stayed together. 

I got through as you do—one step, one challenge, one day at a time. I thought this, surely this, was the Worst Thing That Could Ever Happen to Me. That I could handle anything because the worst thing had already occurred. What could possibly be worse?

Losing Charlie is worse. 

Never think the universe can’t throw more on top of you. Never say you only get what you can bear (seriously, NEVER say that to someone). Never tell me that bad things only happen to bad people. 

Because those are all lies. 

Grief Journal: Haunted by Digital Ghosts

I’m old enough to remember how, if someone died, all you had left were a few printed pictures and maybe a letter or two. Now, you likely have hundreds of photos and texts, emails, and even videos. 

It’s as if we’re creating digital ghosts who are haunting us across space and time. 

I’ve lost several loved ones in the last six years. My sister died in 2013. We’ve never deactivated her Facebook page or changed it to memorialized status. Every year on her birthday and death day, people post memories and pictures, or tag her in remembrance posts. It was really jarring and shocking the first year, seeing my dead sister popping up in my live feed. Now, it’s comforting to know people still remember her and that she touched so many lives.

On the opposite end of the spectrum is my mother-in-law. She was in her 90s when she died, and never had a social media presence. I do have emails and even texts from her, and plenty of pictures we took when we visited. But the bulk of memories for my husband are the printed pictures from his childhood. It’s not that we don’t remember her, but there are fewer unexpected reminders.

The situation with my own mother is different. She never had a Facebook page, although my dad does. She pops up frequently in my Facebook memories and in my camera roll, although she long ago disappeared from my photo stream. Nearly four years after her death, unexpectedly finding a picture of her (nearly always with one of her children or grandchildren), can still move me to tears. Her dates—birth and death—fall near Mother’s Day. As always, this year my family will repost some of those pictures on Facebook, and remind each other that although there is always a hole at the center of our family, we have and love each other. 

But my son. Oh, my darling boy. 

I’ve been on Facebook since 2009, and my posts have always included information about my children. I use Facebook as a way to share cute and funny stories and pictures with far-away friends and family. It functions almost as a diary, in way—a quick and easy way to capture a moment in time, because although you think you’ll always remember the adorable things your kids say and do, the reality is so many of the daily details from the past get lost in the parenting present. 

There are a lot of pictures and stories about my son. I post about all three of my children, but he had a knack for saying and doing things that made for great, quick anecdotes. He was a genuinely funny child, and had a unique perspective on life. Even before he died, Charlie posts were always a favorite with my tight circle.

Any time I choose, I can access hundreds of images of my dead son. My phone and iPad are full of pictures and video of him—and by him. He loved technology, and had a YouTube channel of his own where he posted a cappella versions of his favorite game’s theme songs, stop-motion movies, his latest LEGO builds, and musings on life. All of those videos are available for me to watch at a moment’s notice. Any time I want, I can open my phone and look at the Charlie album. 

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One of my favorite pictures of my favorite ghost.

Most of the time, it’s comforting. Some times, it’s unbearably sad because there will never, ever be a new picture. It’s like that with my Facebook Memories. I find that as I get closer to July 16 and the anniversary of his death, I’m keenly aware that what pops up after that will be memories I’ve already seen at least once. Nothing new, not ever. 

His entire life is captured online, in bits and pieces and slices of memory. But the real memory of him lives in my heart, and the hearts of those who loved him. That’s how I believe he lives on, in all of the lives he touched during his short 10 years with us. The pictures and video are just ones and zeros, but they are a way for me to remind the rest of the world that Charlie was here. He mattered. And I miss him. 

Grief Journal: Seven Months

I didn’t post on the seven-month anniversary.

It’s not that I forgot. One thing people don’t get is that as a parent, we don’t have the luxury of forgetting, not even for a minute. There are surges of emotion—of love, of longing, of guilt, of just missing him. But those are like waves on the shore of our grief. The water is always there; just different forms. 

The 17th of February was a cold, snowy day. We got dumped with snow. We didn’t leave the house. I, as I do essentially every day, worked. My brain may have been busy, but developing creative briefs and updating schedules isn’t exactly an anesthetic. There’s still plenty of room for the giant throbbing emptiness that fills my heart and soul. Plenty of brain power left over to sing the never-ending refrain, “He’s gone, he’s gone. Oh, my darling son is gone.”

Seven months and one day since I last held him breathing in my arms. It really isn’t any easier. Nothing makes it easier. The dirge that is the background music to my life just keeps playing. 

Worst ear worm ever.

Grief Journal: He’s Not a Statistic

Out of all the things my son should have been, a statistic is not one of them. 

Understanding that I don’t get to control the narrative around his death has been really difficult for me. There is what we believe and think about how he died, and then there’s what the community believes and thinks.

On the one hand, my son was such a bright light, that many people knew him—people I don’t even really know. His death was like a rock dropped into our little pond of a town, and it’s created ripples that go well beyond just our family. But the further out those ripples go, the less it’s about the loss of him—the fact that’s he’s gone—and more about how people think he died, and why, and what that represents. His death is lumped together with the loss of others, as a “symptom” of a problem—one that frightens other parents. 

Our community is loving, caring and inclusive, and trying very hard support its children. That’s an admirable and necessary thing, and I wish more communities would come together the way ours has. Yet, it’s really hard to read about programs, events, coalitions, and book readings around the topic of mental health and wellness. Not because I don’t support those things, but because in my son’s case, he HAD support from mental health professionals, his school, and his parents. 

I want to scream when he’s referred to (always in aggregate) as “one of four losses” or when the programs created are talked about as “in response to a time of tremendous loss.” 

Because none of these programs or readings or anything would have made any fucking difference. Sometimes, despite all the love and care and help in the world, terrible and tragic accidents happen to 10 year olds with zero impulse control or sense of finality.

Do I understand the impulse to do something? Oh, yes. Do I hope these efforts make a difference for others? Of course I do. That doesn’t mean it isn’t a knife to the heart every time my son is mentioned as a catalyst, even if it’s never by name. I rage that he’s become  a statistic, representative of a problem.

Would I feel the same if he had died from cancer, or in a car crash, or something similar? I don’t know.

All I know is, I’m not ready for his death to “be meaningful” or for people to say “at least something good has come of it.” I just want him. How will anything solve that?