Grief Journal: From Death Springs Life

One of my Facebook memories today was about the notification our family received after my sister donated her organs. She was that unicorn among donors—a young, healthy person who was taken off life support due to brain death, but not organ damage. Because of her blood type, she was considered a universal donor. 

Once we knew her spirit was gone and only her body remained, our family made the decision to donate her organs. Her dying was planned accordingly. My mother, sisters, her daughter and I accompanied her from the ICU to the surgical ward. Her life support was removed, and we stood by her bed, telling her how much we loved her. It didn’t take long for her vital signs to stop; it was obvious what made Becci my sister was long gone.

Then, she was moved into the OR while we walked out of the hospital, bowed by grief.

About a month later, we got the official notification from Carolina Donor Services. Her lungs were transplanted to a male in his forties; her left kidney went to a female in her sixties and her right kidney went to a female in her fifties who has children and grandchildren. Her eyes, her ligaments, and other tissues were all donated. In all, she helped over 50 people. 

Knowing that didn’t make her loss any easier to bear. But it is comforting to know that her death meant life for so many others. People are alive, or have a better quality of life, because my sister was an organ donor.

Charlie was an organ donor, too. He was too young to make that choice, so we did it for him. But I know he would have wanted to do it. He would have thought it was pretty cool, and asked all about how it worked. Because his corneas were donated, he would have wondered if it meant he could see out of the recipient’s eyes. That’s just the way his mind worked.

Because sometimes you get back from the universe what you put into it, last year, our family benefited from organ donation. It’s a humbling experience when you realize that someone you love is alive and healthy because of someone’s else’s death, and that family’s sorrow. It’s a sorrow we know well, but knowing that loss has made us appreciate the gift that was given even more. 

Tomorrow will be one year and two months since we lost my Charlie. I opened one of the four boxes I have left—the one with everything related to his funeral—and reread the letter the American Tissue Services Foundation sent us. It says: “We hope that you will be comforted knowing that the gift of heart valves is one of the most precious any child can give to another. The gift of heart valves saves lives and improves the quality of life for infants and children born with congenital heart defects or heart damage caused by infection. This generous act not only transforms the lives of recipients, it touches the lives of all who love them and shares a legacy of the life you treasure.”

The Lion’s Eye Bank of Wisconsin also sent us a letter, which reads, “To see beyond one’s grief in hopes of helping another is a tremendous act of generosity and true compassion. Because of this compassion, a second chance for sight has been given to a woman in Alameda, California and someone in New York City, who are in need of corneal transplants. The restoration of sight can change a life forever, as Charlie’s precious gift has done.”

When I first got those letters, all I could think is how I hated that we had had to make that gift, and how I resented the thanks that just reminded me of how much we lost. Now, re-reading these letters makes looking at the envelope filed right next to them—the one that contains his death certificate—a little bit easier. I still would give anything to have my Charlie back, but knowing that other children are alive because of him, and other parents don’t have to feel this same grief, does help a little, as does knowing that two people are looking at the world through his eyes.

I only wish he could have passed on the way he saw the world, and how much he loved being in it. 

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The beautiful tear drop sent by the Lion’s Eye Bank of Wisconsin, along with a memorial card from the American Services Tissue Foundation. It took me a long time to take them out of their box, but now they are on my shelf, next to a beautiful tribute sent by my sister, where I can see them. Please consider registering as an organ and tissue donor. 

Grief Journal: Ignoring the Anvil the Universe Has Dropped on Your Head

I ran across an article talking about a pair of viral posts (here and here ) from a couple who lost their sweet eight-year-old boy when he died in his sleep. My heart aches for them, as I know very well the loss they are experiencing; they’ve joined this terrible club that no one should have to be a member of.

The very eloquent and heartbreaking posts were about how these parents regret their work schedules, and that they often pushed off planning things their children wanted to do if it meant time away from work. They wish now they had spent more time with their kids, and less time on meetings and emails. These are important and true insights.

I’m writing this at my desk at 8:00 pm. I just finished all the urgent tasks planned for today—at least as many as I could finish. My brain is dead, my back hurts and I am tired. I just got four more emails, on top of the couple of hundred I already processed today. 

I’ve spent a grand total of 15 minutes with my kids today, as I heated up a frozen pizza before heading back to my office.

See, the thing is, I’ve already learned this lesson. I wish I had spent more time with my sister before she died. I wish I had visited my mom more often before she passed. And oh, how I deeply and bitterly regret every single business trip, meeting and deadline that made me say more often than I liked, “Not now, Charlie sweetie, I have to work.”

The universe has already dropped an anvil on my head to get me to pay attention to what’s truly important…and yet, here I sit.

Because right now, my job requires this kind of commitment. I need my job to put a roof over your head and food on my table. Despite my best efforts, I can’t control my work/life balance right now.

American society is not set up to honor work/life balance. We still believe that more hours results in increased productivity. Research shows Americans put in more hours a week than other, more productive countries.  There have been many articles written about how more hours does not equal more output—and certainly not quality output. Rivers of digital ink have been spilled about what the expectation for instant responses and being always on is doing to us.

These are white collar problems. I can’t imagine what dealing with loss and grief is like for people living in poverty, or a single parent. They, too, must ache to spend more time with their children and loved ones, but need to spend all of their energy and time just trying to keep their heads above water.

I know I have choices. I have a job, not a prison sentence. But I like where I work and what I do. I’m really good at it. I find deep satisfaction in the contributions I make. It’s great for my kids to know that work can be satisfying. 

And yet. A job doesn’t love you. A job won’t shriek with laughter when you throw an impromptu dance party. A job can’t hold your hand and confide secrets while you walk the dog. A job won’t light up when you help with homework, or teach how to make an omelette. 

You won’t lie on your death bed, sad because you didn’t send enough emails or hold enough meetings. Most importantly, your heart won’t break if you never get to see your job again.

The fact is, the world we live in doesn’t support work/life balance. You can’t go on disability because there’s a yawning hole in your soul where your son used to be, or because you’ve been flattened by the universe’s anvil. And like most people, I don’t have the financial luxury of quitting work, or working part-time.

Just because I learned my lesson doesn’t mean I get to apply it. I shouldn’t have to choose between my job and work/life balance. But when it comes down to it, the lesson is always to choose love. I just need to figure out how to do that. 

 

P.S. This is NOT about my place of employment; it’s about the industry I work in and specific job I have. I could not ask for more supportive and caring people to work with.

Grief Journal: Back to School

door

I saw an article where a woman posted a picture of her front door in honor of her son, who isn’t there to be in the back-to-school picture anymore. Like me, she has two other children and like me, she feels a mix of joy and sadness at this milestone.

I’m happy for my newly minted high schooler and second grader. The start of a new school year is always exciting. But back to school just isn’t the same without Charlie. There should be a trio of happy faces, dressed up and new backpacks in hand. I love my two, but on days like today I feel the loss of the one in the middle very keenly.

It’s the second back to school without him, and the grief is as fresh as it was the first time. I miss him so.

He should be in this picture.

Grief Journal: Always3

tattoo

I’ve never been a tattoo person. Not that I object to them, I just could never think of anything I wanted permanently etched on to my skin. I get passionately interested in something, then it burns out or fades away. I know this about myself, which is why I don’t have an Enterprise or TARDIS or mocking jay or chef’s hat–or any of the other 99 things I’ve been really into and still like, but don’t love. You could say I have a commitment issue.

Except when it comes to my kids. They are the one constant in my life. Ever since I saw my first son’s heartbeat flickering on that ultrasound monitor, being a mom has been my highest, best purpose.

And as much as I failed that purpose, I am and always will be, a mom of three amazing children whom I love fiercely, if not always well. 

#alwaysloveCharlie #always3 #missingtheoneinthemiddle

Thanks to Beth at Art & Soul Tattoo in New Glarus for her creativity, patience and giving me the perfect tattoo—one that will always remind me of the light we lost. 

Grief Journal: The Hollowness

It’s been nearly a month since I posted. I didn’t know if I wanted to, or needed to, keep writing. After all, after a year what more can I say?

Our family went on a trip out west so we wouldn’t be home on the one-year anniversary of Chariie’s death; we could not be in the house. It was a trip we had planned last summer, and didn’t get to take. It was good to spend time together as a family, but I’m not going to lie—it was a hard, sad week.

I brought Charlie’s beloved Beary Bear with us. Usually, Bear sits by my bed. I say “good morning” and give him a kiss good night. If I’m really missing Charlie, I’ll hold it. I hate that Bear doesn’t smell like Charlie any more, but it’s still a tangible connection to him—Charlie slept with, hung out with, and loved on that Bear every day of his life. 

Bear

I thought that bringing Bear would maybe be a bit like having a part of Charlie on the trip. But it wasn’t. Instead, it just reminded me keenly that Charlie is gone.

A year on, and I just don’t feel him any more. My heart tells me whatever part of his energy and bright light lives on is far, far away. And that’s okay. I don’t like the idea of him hanging around, worrying about us. He should be on to the next adventure. Maybe I can catch up one day.

But in the meantime, I’m left here, missing him. One year on and the grief is so heavy it weighs me down. And that’s a good thing, because the absence of Charlie has left me hollow. Without the grief—that terrible enormous love and pain—I might just float away. 

Grief Journal: Not an Anniversary

It’s almost the one-year anniversary of my son’s death. There needs to be another word for this. “Anniversary” is usually accompanied by “happy,” and there’s nothing happy about this. 

In Yiddish, they say “yahrzeit.” I found this explanation: “The yahrzeit is a time for study, charity, kindness and reflection in honor of the loved one. Observed every year, the kindling of a yahrzeit candle and the recitation of the Kaddish serve to honor the memory of a loved one now and for generations to come.” 

Other cultures find ways to meaningfully manage death and loss. Americans tend to avoid talking about death or loss, as if it were catching. You’re just supposed to put it behind you and carry on, keeping your grief hidden away. We compliment people who do this, calling them “strong.” I’ve heard this a lot over the past year and while I appreciate the sentiment, I am not strong. 

When I got the news my son died, I went into shock. I never really understood what that meant until then. But it is a physical and mental reaction—your mind and body just sort of shut down and go on autopilot in self defense, because what has happened to you is so enormous, you literally cannot face or process it. People told me I was being strong then, because I was functioning. There’s a lot of planning and logistics that come with a funeral, and I managed it—mostly because my brain said, “Oh, I cannot deal with this thing, so I will control these other things that I can.” But that’s not strength, it’s self preservation.

I think for the first couple of days, I didn’t really believe it. Because I wasn’t home and didn’t see him, there was a part of me that thought it was all some sort of horrible nightmare. I remember bugging the funeral director about being able to see my son. That lovely man made sure that as soon as the body was released and he could prep it, he called me to come over, even though it was after hours.

When I walked in and saw my darling boy, and knew that he truly was dead, I fell to my knees and cried in a way I never have cried before. Heart-rending sobs filled with pain, because a part of me was dying and it hurt. Much about that first week, and even this last year, are hazy but that hour with my dead son is a memory that is seared into my very soul. I eventually stood up and walked out the door, but there is a part of me that is still on my knees in that room and always will be.

I am forever changed. I’m not the same person I was a year ago. Some of the changes are for the good. I’m a more patient parent, because I realize you really, really don’t need to sweat the small stuff. I’m a kinder person, because I know first-hand how much a kind act or word can mean, even to a stranger and that none of us can know what pain we each carry every day. 

What I am not is stronger. I don’t walk through this world with the same surety, content with my choices. I don’t feel safe, because I know bad things can happen and the world is cruel and random. I understand that love is not always enough. It’s not strength that keeps me going—it’s acceptance that there is no real alternative, and that while love may not be enough, it’s what I have to give to my husband, son and daughter.

While the metaphors I choose to talk about grief are usually about water, I’ve noticed that when people talk about my son, it’s often in terms of light. When we see a rainbow, we say, “Charlie is saying hi.” We think of him as a bright shining light…because he was. And our world is darker without his light in it.

On July 16, please light a candle for Charlie. Help bring back a little bit of the light we lost. Reflect on the lessons he had to teach us. Be kind to your family, your friends and even strangers. Just don’t be strong—because it’s okay to show your grief, to be sad and to mourn. He deserves it. 

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Grief Journal: The Last Picture

This is the last picture I took of my son alive, one year ago. He’s enjoying ice cream, which is something he really loved, as most kids do. And given the challenge we had keeping weight on him, we let him indulge.

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Here are other things he loved, in no particular order:

  • Creating his own LEGOs ideas
  • Drawing in black and white (not color), preferably pencil but black Sharpie was okay, too
  • Reading Minecraft guides
  • Reading the WARRIORS series
  • PACIFIC RIM (his favorite movie), but watching movies in general (especially all GODZILLA movies, THE HUNGER GAMES series and any Marvel movie)
  • Making videos for his YouTube channel
  • Stop-motion animation
  • Music he could dance to
  • “Rock n roll” songs
  • Musicals (we rewatched GALLIVANT a couple of times)
  • Babybel cheese rounds
  • Chips and hummus
  • Hot dogs
  • Candy, his preferred food group (I found a mountain of illicit treat wrappers under his bed)
  • Playing video games—Minecraft, Undertale & Overwatch in particular
  • Sans from Undertale (his last Halloween costume)
  • Being off school
  • Cuddling (he never outgrew cuddling)
  • Riding his bike
  • Hanging with his friends
  • Fashion and picking out new clothes
  • Getting to stay up late
  • The singing role in Rock Band
  • Hiding out in forts
  • NERF guns & battles
  • The Ren Faire/Medieval Times/jousting (he wanted to do this professionally)
  • Root beer
  • The color green
  • Camp Invention
  • Making jokes

I could go on and on. Such a prosaic list—things hundreds of other kids like as well—yet put all together, you get the one and only Charlie. He was so much more than the sum of his interests, but his passions (he loved or hated things, no middle ground) and the things he cared about certainly helped make him who he was. So when I write this list, it sounds dull and dry, yet it sparks a cascade of memories of him, alive with curiosity. He did everything, even sleeping, intensely–and he wanted you to feel intensely, too. Not one picture I have of him captures his sheer joy in living.

I miss him more than I can say. And I still can’t quite believe, nearly a year later, that he is gone. I’m not sure I ever will be able to fully accept a world without his light in it.