Grief Journal: Caught Between a Rock and a Hard Place

Grief is the rock. Life is the hard place. I am the speck being ground into dust between them. 

Here’s the really awful thing about mourning a kid like my son: Some things are not as hard. 

Yes, he was creative and funny and sweet and amazing. He was also challenging to parent, with a hair-trigger temper, zero impulse control and intense mood swings. 

His brain wasn’t wired like the rest of ours are. He hated the way he felt sometimes—hated acting out, hated losing control, hated hurting others’ feelings. I spent so much time trying to help him feel worthwhile, and let him know that *he* wasn’t bad even when he made bad choices. Trying to help him learn to make good choices, to just take a breath before he exploded. Trying to help him understand that you can always start fresh. It was a long, slow process and it required a level of energy and attention that honestly, I didn’t have every single day, every single minute. Being his parent was exhausting, despite how fiercely I loved him.

Whatever he felt, he felt intensely. So when he was angry or upset, he let you know and sometimes, it was, if I’m being really honest, a bit scary. All kids tell you they hate you at some point or another (even if it’s just muttered under their breath), but when he hated you, he meant it, with every fiber of his being. Of course, the flip side is that he loved just as intensely. But those bad times were really hard. He couldn’t be consoled or jollied out of it; you just had to ride it out and then deal with the fallout with love. If nothing else, I tried hard to make sure he knew that no matter what he did or said, I loved him the same. Because it wasn’t his fault. He didn’t ask to be born different.

I spent so much energy and time focused on him. Supporting all of his good and positive and worthy characteristics. Worrying about school. Worrying about his peer and friend relationships. Managing his relationships with his siblings. Working with his teachers and mental health professionals and doctors. Reading about the latest treatments and therapies and parenting approaches, so afraid this was more than “just” ADHD. Focused on his future, because the idea that he wouldn’t have one never entered my head.

And now, that’s gone. The house is quieter, calmer. My two other children are just easier. Of course I worry about them, but the worries are smaller in scale, more “normal.” We can just go out to dinner. I can ask them to turn off their devices without WWIII erupting. They rarely argue about doing chores. Transitions aren’t a problem and don’t require hours of advance planning. We can go places and do things, without drama or tears or incidents. 

They’re not perfect, of course—and they are also grieving the loss of their brother—but the hard truth is that our lives are objectively better in some ways. And that makes the rock that is my grief so much harder and larger, with guilt and anger adding sharp edges. 

I’m just caught between, being ground to nothing, sometimes thinking that I deserve it. 

Grief Journal: Nine Months

Nine months.

The grief is no better. I haven’t gestated some relief for the pain I feel every day. I haven’t given birth to a new way of feeling the weight of his loss. Every morning I still take my first waking breath and feel that razor blade armor cutting fresh wounds. Bright and shiny on the outside, torture on the inside; that’s how I start my days. 

Because that’s the thing about losing your child. You never stop loving them, so you never stop grieving them. Your love for them is big—as wide as the sea, as deep as your soul, as bright as the sun. You love for them is endless, and so is your grief. 

You have to get up every day, and function. But inside, you’re still curled up in a ball, crying. 

In my Facebook memories today, this post from my husband came up:

On his way out the door to school, the C-in-C* pulled me aside.
The C-in-C: (quietly) I need to tell you something.
Me: Okay.
The C-in-C: (even more softly) Your hair’s getting thin.
Me: I know.
The C-in-C: Well, are you going to, like…do anything about it?
Me: No. At my age, it’s normal.
The C-in-C: There are things you can do, on TV. Or do they not really work?
Me: They don’t, but it wouldn’t matter. I’m okay with it.
The C-in-C: (hand on my shoulder) I just don’t want your head getting cold.

This kid. This sweet, loving, caring kid. I read this, and don’t understand how he could be dead in three months. 

Saying I miss him doesn’t even begin to cover it.

 

*As a writer, most of my husband’s page and posts are public, so he always used pseudonyms to protect our kids.

Grief Journal: 270 Squares of Love

The ripples from my son’s death still reverberate. It didn’t affect just us; so many people knew and loved him, including his classmates and friends. 

In addition to ongoing grief counseling, his school wanted to find a way to honor Charlie’s memory. They suggested a “Creativity Day,” where 5th graders could participate in a variety of stations designed to spark innovation and creativity—LEGOs, drawing, reading, and more—all the things my son loved best about school. It was a wonderful way to honor him (I posted about it before, including the cool buttons that his beloved teacher and close friends made for all of the kids to wear), and I think it helped many of his classmates put a bit of closure on his loss. 

As part of that event, the kids had the opportunity to color and decorate a square. Most chose some version of a heart. Kids who knew him well chose to illustrate something he really liked, or an interest they shared. The talented team at the school compiled all of those squares into a single image, lovingly placing each square into a rainbow mosaic titled “Let Your True Colors Shine.” 

(True Colors was one of the songs we played at the funeral, and part of the eulogy his fourth grade teacher delivered. My son was nothing if not uniquely himself, and that song reflects the idea that it’s okay to let your true self—your true colors—shine, because it makes this world is a better place when we have all of the colors around us.) 

The staff invited my husband and me to the school so they could present this beautiful artwork:

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It was a bittersweet moment. I have to confess, I was both looking forward to it and dreading it. I was so grateful for the artwork, but it’s still really hard to be in that building; I avoid driving past it on school days, when the kids might be out at recess, because it’s just too damn sad. 

The teachers and staff were wonderful as always, sharing cute stories about our son. Because of the timing, our youngest daughter was with us. She sat quietly, listening to all they had to say. After, she said, “Charlie was pretty cool, right?”  I think it’s a good memory that will help our shy, change-averse child when it’s her turn in another year to go to the Intermediate Center; she knows that the teachers loved her brother and that he had fun there. 

But I’m not going to lie, I cried. In fact, it was four days ago, and I haven’t really stopped crying. 

I hung the picture on our wall once I got home. I spent time looking at each of the beautiful 270 squares, hand drawn by the best bunch of 5th graders on the planet, guided by our amazing and caring school district staff. I wonder how we ever got so lucky as to live here, in this community, surrounded by such love and support. 

And as always, I wish I didn’t have to know just how amazing our town is.

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.