Grief Journal: Pictures of the Future

One year, four months. Time is ticking by.

I dreamt of Charlie last night. Not a true dream, just a dream with him in it. I knew that time had passed, so in the dream he was a head taller than me. But he still had his same beloved 10-year-old face, because my subconscious doesn’t know how to age him.

There are services that do age progression. It started with kids who had been missing for quite a while, so parents could share pictures of what they would look like in the present day, as opposed to when they were lost. Now, these services will progressively age pictures of dead children, for the grieving parents.

Experts are of two minds about this. Some think it’s a comfort for grieving parents, so they don’t have to wonder what their child would have grown up to look like. Others think it’s a crutch that can get in the way of real healing, keeping parents stuck in the past rather than moving on.

And, it’s not cheap. One service I found in Michigan starts at $200 for one picture.

Unless Charlie decides to visit me in a true dream again (and as I’ve said, I don’t think he will), I’m thinking about getting one of these images. Not one for every year, just one of what he would have looked like as a young adult. It will be sad, of course, because he never got to be a young adult, but also comforting in a way I can’t quite explain. Something to look at when I want to smile. Something to blow a kiss to as I think of him, out on his great adventure in the universe.

Grief Journal: Depression’s Magnifying Glass

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There’s a saying that “depression lies.”

In my experience, that’s not the case. Depression is sneakier than that. It doesn’t lie; it’s just selectively truthful. It puts a magnifying glass on the hard or ugly things, while making the good things blurry and indistinct. The tough part of depression is shifting that magnifying glass on to what really matters, or what the real challenge is. Here are four of the biggest lies depression is whispering into my ear these days.

“Your work is garbage.”

When you’re depressed, it can be very difficult to produce quality work. Personally, I find my brain is slow and sluggish. I don’t retain information like I used to. My creativity is zapped. I can’t cope with stressful deadlines, and it’s hard to hear constructive criticism. 

The reality is, my work isn’t up to my usual incredibly high standards. It’s been mostly good enough (although honestly, the last few weeks it hasn’t). I just don’t care about my work in the same way. I’ve struggled for years to work to live, not live to work. Losing Charlie has made that even more crystal clear. I regret every single concert and bedtime story I missed because of work. My job demands a lot, and I’m not sure I can continue to deliver it. 

The magnifying glass needs to be less on me, and more on what is being demanded of me and if I should/want to deliver—60 hour work weeks are neither desirable not sustainable for anyone, and definitely not when you can barely get out of bed most days.

“You’re a terrible friend/colleague/spouse/mother.”

When you lose a child like we lost Charlie, it’s nearly impossible not to blame yourself or to feel as if you failed. I hear everyone who has told me I didn’t. I intellectually agree with my therapist, who tells me grief is a useless emotion. That’s how I’ve lived my life—regret is only helpful if you use that to fuel change so you don’t repeat the behavior. 

But I know my depression has made me less of a person. I’m letting down colleagues, causing them more work. I’m not as available for my friends. I drop the ball on stuff for the kids, and can’t fully participate in their activities. I’m not as present or loving a spouse as I want to be. Depression has dug an unimaginably deep trench between me and other people, one I’m finding myself less able to leap over. This failure causes shame and guilt and fear, which weigh me down even more. 

“Your family would be better off without you.”

By some measures, this is objectively true. But of course, it depends on how you define “better off.” I know the pain of losing someone you love and would never, ever inflict that on my family, especially not my children. So the challenge becomes how can I be more present? Because right now, I’m so far underwater that I’m not really able to be there for the ones I love. I’m here, but absent in very important ways. 

“You could do it if you really wanted to.”

For someone who has always lived a rational, goal-drive life—as my therapist has put it, I live in my head, not my heart—one of the worst lies depression tells me is that my inability to function is a personal failing, in my control. That I can’t work or function because I’m lazy and incompetent, not because my brain chemicals are completely out of whack right now. I compare myself to those less fortunate, who are living through war or personal violence, and wonder why I can’t be resilient. Why my stupid brain and body just won’t do what I tell them to. This has never happened to me before, where I couldn’t make myself get through by sheer force of will. I don’t really know what to do.

This blog post is a good example. I write these posts as part of my therapeutic process. It helps me to process my feelings if I write them down. I also feel as if I don’t have to burden any one unnecessarily; they can read if they want to. And if reading about my experience helps anyone else who is grieving, then I’m glad. 

Normally, I write posts as a stream of conscious, in one burst. I don’t really edit or revise (as I’m sure the occasional grammatical error attests to). But this one I had to keep coming back to, haltingly putting the words down almost one by one. My brain is just…broken right now. About that, depression isn’t lying. 

And I don’t know what to do.

Grief Journal: It Doesn’t Always Get Better

My therapist recently said something that really resonated. “The second year is often much harder than the first.”

For me, that is true.

The first year, every little event or anniversary was painful because it was the first without him. So many big events, made even bigger by his absence. First day of school with just two kids. First Halloween, Thanksgiving, Christmas, New Year…all of the holidays and he wasn’t there. First birthday he didn’t celebrate. 

So many other little firsts, too. First time I saw all of the neighborhood kids playing, without him. First time I automatically put something in my shopping cart for Charlie, then had to put it back. First time I worked in my new office, his old bedroom. First time I switched out seasonal clothes, and realized my older son’s hand-me-downs needed to go to friends. 

But the second year is worse. Because you realize it’s not just that first time, it’s the rest of your life. He will never, ever go back to school, celebrate a holiday, or play with his friends.

Worse, all of the rest of the years are about the firsts he is going to miss.  Everyone else grows up and on, but he will never go to middle school, or high school, or college. He’s never going to make that first pay check. He’s never going to go through puberty, much less have his first kiss, first date or fall in love. He’s never going to become who he was meant to be.

I didn’t think anything could be worse than that first year without him. I was wrong. 

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First birthday. 

Grief Journal: Scar Tissue

Many years ago, I ruptured one of my ankle ligaments. At the time, the doctor told me it would have been better to actually break the bone. “Bones can essentially heal,” he said. “Your ligament will never be the same; our goal is to create the strongest scar tissue possible to retain the most function.”

When I was in high school, I injured the synovial tissue in my knee (and people say cheerleading isn’t a contact sport). It too has never been the same; to this day, my knee swells if I try to run.

I could go on and on but there is little as boring as other people’s medical problems. The point is, sometimes an injury occurs and the best we can hope for is that the scar tissue allows us to still function. We will never be as we were before, and shouldn’t expect the same level of performance.

I think that happens emotionally and spiritually, too. 

For whatever reason, a lot of us have been thinking of Charlie lately. I don’t know if it’s because the weather has finally turned to fall so we’re more conscious of the dying of the year, or what, but he’s been weighing on so many hearts. School friends of his miss him keenly as they adjust to middle school. His sister and brother feel his absence like a lost tooth, poking at the sore spot. Yesterday, his father and I sat on a park bench and cried while watching some kids play, because he should have been there.

None of us who loved him will ever be the same. We’ve been injured too deeply by what we lost. We can heal, we can go on, but we won’t be the same as before. 

For me, one of the things that’s been affected most is my emotional resilience. Stuff doesn’t just bounce off the way it used to. My hard protective shell is just a thin candy veneer, liable to crack at any moment. Mind over matter doesn’t work. My will is no longer a V8 engine powering me forward. Instead, I’m pushing a lawnmower through waist-high grass.

But I keep pushing. I keep getting up every day. I keep trying, stretching the scar tissue that’s barely holding me together.

Grief Journal: Love is a Verb

I’ve often wondered if our language shapes our perceptions of the world, or if our perception of the world around us shapes the language we use to express it. So Eskimos have dozens of words to describe snow, and Germans have a special word to describe taking pleasure in the misfortunes of others, and English speakers have nearly 3,000 synonyms at their disposal to describe being drunk. Yet there are words we use over and over to describe a vastly different range of feelings and experiences.

Like “love,” for example.

I can say “I love chocolate.” “I love fall and wearing cozy sweaters.” “I love my family.” “I love my son Charlie.”

These are all acceptable uses of the word, and anyone who hears me say them will understand that they represent different kids of love. No one expects that my feelings for chocolate are the same as my feelings for my family or my son. 

“I love my son Charlie.” Present tense. English offers me two options here to allow for the fact of his death—I can either change the tense of the verb or add an adjective. “I loved my son Charlie.” “I love my dead son Charlie.” Both are true. 

I choose, “I love my dead son Charlie.” Just because he is gone, doesn’t mean I have stopped loving him. I still love him as fiercely as ever. It’s just that I have no where to put that love any more. I cannot hug him, or laugh at his jokes, or listen to him tell me all about his latest game. I can’t make his favorite meal, or hold him when he’s frustrated. All of the endless, limitless love I have for my amazing son has no focus anymore. 

I know of other people who have recently lost someone they love. Some of them have started foundations designed to help grieving parents. Some hold fundraisers with the proceeds going to disease research. Others founded companies with a goal of making the world a more positive place. They all exist because of how much the founders loved the person they lost. They discovered that, as the saying goes, grief is just love with no place to go. So they chose to channel that grief, that love. They found a new focus. Many experts on grief say that this is the healthiest way to cope with enormous loss.

An enormous loss like losing a son. One of the hardest parts of loving Charlie after his death is the loss of possibility. I always thought he would do something amazing when he got older, with his fierce intelligence and enormous creativity. I never talked about it like that to him, of course–no kid needs that pressure—but I tried to encourage him to think about all the possibilities open to him. He, quite literally, could have done or been just about anything. It was exciting (and a bit daunting) as a parent to foster his gifts in a positive way.

Now, that’s gone. All that possibility is gone from this world.

In the wake of his death, so many people found special, meaningful ways to honor Charlie. Friends donated books to our library, planted trees, and sponsored children’s programs. Our family funded scholarships to Camp Invention, one of his favorite activities. Each of these was a way to keep the light that was Charlie burning a bit longer.

But I haven’t found a focus, try as I might. I still love my son, but he isn’t here any more. My love pours out of me and echoes through the universe, turning into waves of dark grief because his light is missing. And there isn’t a word for that in any language.

Grief Journal: Never the Same Again

Lately, I’ve been having dreams with Charlie in them. Not dreams like before, where he was visiting me. Just dreams that he is in. 

In these dreams, I’m searching for him. Once, he’d run away. Another time, we were in a public place and I couldn’t find him in the crowd. I’m always asking people where he is, and I have this overwhelming desire to find him and hug him, but I can’t because he doesn’t want to be found.

I’m not sure what my subconscious is trying to tell me. Every night, I go to sleep and long for him to visit me in my dreams. 

The new normal is life without him. A year and nearly three months on, and he isn’t always the first thing I think of when I wake up. I’ve packed away his loss, pushing it under the weight of an insane work load and the every day stresses of life. It’s the hot core of my being, covered by a smooth veneer of calm that is egg-shell thin. Life goes on, but it’s not the same. It never will be.

This weekend, I was solo parenting while my husband is away. And it was a calm, fun weekend. My 15 year old and 7 year old both pretty much go along with the flow. There was no screaming or yelling, and no melt downs. We ate, and shopped, and ran errands and it was all very nice. 

And I hate it. I hate that I like the new normal. I hate that we never have to start preparing to go somewhere an hour ahead of time. I hate that Charlie never had the chance to learn how to master his emotions.  It kills me that our family is so much more calm, so much more normal, without him.

And so I dream of the absence of him, of searching for him and not finding him. I guess I’m searching for the life we used to have, the life with him in it. Because while that life was calmer and less chaotic, it was also funnier and louder and brighter, full of light and energy. 

I miss that. I miss him. And I’m searching for it but never finding it, not ever again. 29570334_10215623738767384_1962558757798316759_n

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.