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.