Coincidence of Grand Proportions

So much of the time I feel as though I am carrying Eli's light alone. It's not exactly true, but as his mom and based on the amount of brain power he takes up every moment, I am sort of the default keeper of his memory. It doesn't help that I'm always -ALWAYS- deciding whether to keep my thoughts about him to myself, even with my own family. It's not anyone's fault, really. The place I live in my mind is sad and the bitterest of bittersweet, and most of the time it feels ill-timed and crazy to talk about all the things that make me think of Eli (pretty much everything, all the time, everyday). It's accurate to say that if we're talking I am also thinking about Eli. Sometimes it's not anything specific, a lot of times it is super specific and of no significance to anyone but me. Sometimes it doesn't even make sense. While I do feel crazy at times, I know enough bereaved moms to know that this is just part of After. We pretty much all operate this way.

This weekend the hubs and I went to Charleston. The point of the trip was to go to a specific restaurant with friends and have an amazing dinner, which we did. We also did some sightseeing and exploring. I started keeping track of all the things that reminded me of Eli, but it was literally everything, so I stopped. Right after I decided stop focusing on all the things that made me think of him we drove past a restaurant called Eli's.

The brain is a powerful meaning making machine. In a past version of life I may have seen that as a sign or God-ordained or whatever you want to call it. Now it's just a weird outlier. What are the chances I would pass a restaurant named Eli's in a small tourist town that has a restaurant named Eli's while we're driving around to see some sights? When you frame it that way, not terrible, I suppose. But it can feel like a message or more than coincidence when filtered through our meaning making brains.

Perhaps one of the biggest challenges for me is that I don't find meaning in Eli's death. I staunchly refuse to find meaning in it, actually. There is no meaning or reason in the universe that is worthy of his death, to me. There is no reconciling it. If there's no meaning in the biggest, most painful thing in my life, how can there be meaning in the smaller things? So I actively make space instead of meaning.

We enjoyed quite a magical meal with friends on Saturday night and made plans for brunch downtown the next morning before we all headed home. Sunday morning came and two of our friends had some things come up at home they had to attend to, so they left early. This left us with plans that no longer made sense. The rest of us who were still in town were staying in North Charleston and going downtown would be the wrong direction for heading home after we ate. We looked online at some nearby restaurants and Jerry texted everyone a new, closer place to go. It was well off the beaten path in a more rundown area, but it was nearby and the food looked fantastic. We went and had a relaxed meal of Dutch Baby pancakes, biscuits, grits, chicken fried steak, and the like. When we went up to the counter afterward to pay I wasn't paying attention to the rest of the smallish restaurant. And then one of Eli's nurses from his time in PICU at Duke appeared. She and her husband were having brunch on the other side of the restaurant and saw us come up to the counter to pay our bill. We hugged and talked for a few minutes. It was amazing to see her, and even more amazing that we were both in Charleston for the weekend and happened to go to the same out of the way brunch spot at the same time. I was so shocked I felt like I could hardly get a sentence out. I later messaged her to say how nice it was to see her and to explain how crazy it was that we ended up there. Well, she, too, had plans for brunch somewhere else but ended up at that diner.

Happenstance isn't the right word, but I'm still overwhelmed by our crossed paths. When we left for home I cried in the car for the better part of an hour. Not out of sadness. Out of being overwhelmed, out of the reminder that I'm not the only one who remembers Eli, out of the love, kindness, compassion, care that Leah always had for Eli, and for me, out of the bittersweet connections that make up our humanity, out of the most unlikely of chance meetings ever happening, and the fragility of life, and a million other things there just aren't words for.

Part of me wants to believe it was orchestrated. How could it not be? All of the things that had to go a certain way....it's unfathomable. And yet, I can't make sense of it because I can't make sense of Eli's death. I can either reconcile everything, including Eli's death, or I can reconcile nothing. And I can reconcile nothing.

I know a lot of people attribute certain things to a lost loved one, and say they can feel their person with them. Maybe they really can. Maybe they're making meaning out of things. Either way isn't wrong. The life of After is about survival. But Eli feels gone, light years away from me. I wish I felt him, but I don't. I'm the keeper of his memory.

Maybe it's easy to look at all this and wonder why I just can't believe something, anything, about this chance meeting, which is still the wrong word for it. Would it hurt less if I did? I have no idea.

If you think you know, I hope you don't live long enough to find out that you don't.

Mother's Day

A Message To My Fellow Bereaved Moms

also

How I Really Feel


And now this stupid weekend is upon us and there is nothing to do but ride this shit until it's over. You're going to keep breathing, whether you want to or not. You're going to hate everyone, whether you want to or not. You're going to grit your teeth at the asinine things people say to you and the cacophony of #blesseds that will find you no matter how well you insulate and isolate yourself from the world. They're like an airborne illness born of humblebrags. Your entire consolation will come from you. It is the love that bleeds out of you, yes, still, for your precious child. They were real. They were here. Their life mattered. Of course you feel slighted on this weekend of mothers. You were slighted. So when your pain feels like rage and pettiness and you want to punch someone in the face, know that I stand with you. Together we will keep our keep our hands to ourselves. Happy Effing Mother's Day.

Haiti- a composite

Haiti- a composite 

It’s December and the temperature was in the mid-90s everyday in Haiti. There is no air conditioning, there are few glass windows, and there are no screens. Most concrete construction homes and buildings have decorative-looking concrete blocks where we would expect windows that allow a breeze to blow through. 

There is so little infrastructure in Haiti it is alarming. There is trash everywhere you look. Piles and piles of trash line certain parts of the streets, but trash debris is ever present in Haiti. We stayed at the orphanage, where rainwater is collected in cisterns and then filtered for drinking and cooking, where there is a well that provides water for bathing and cleaning, where there is a generator powering lightbulbs and a refrigerator. But the power goes out a lot. They turn it off at night. Bugs fly in and out of the jalousie windows that are permanently open. Americans sleep under mosquito nets like princesses. Well, if they can sleep. Between the roosters and the dogs who loudly complain all night, and the announcements being made in kreyol by a man with a megaphone driving through the packed dirt roads of the community in the dead of night, sleep can be fleeting for our dainty overloaded senses. 

Despite all of this, Haiti is beautiful, not the least of which being stark contrasts of azul-blue coasts and red-brown hillsides, giant rubber trees growing from the dust, and children walking to school in perfectly pressed uniforms over the rocky terrain. One of the buzzwords around disaster relief currently is resilience. Haitians don’t need any patronizing lessons in resiliency; they are the most resourceful and resilient people living on a land with precious few resources. Where there is no way, they make do and keep surviving. Which is not to say they are thriving and don’t know any different. No, they know they are painfully poor, they feel it in their empty bellies regularly. They know there is better out there and they want it for their children and themselves. You see this through the pride in school uniforms. How mothers and children living in stick and mud huts with no running water can daily produce perfectly pressed school uniforms is beyond my comprehension, but it is the rule not the exception in Haiti. 

The vast majority of people in Haiti have no voice, no way of telling their story, no way of changing their lot in life. NGOs and missionaries come to Haiti to help and often waste money and resources, and force assistance that only hurts the communities and fledgling economy. So if you talk to adults in the community, if you ask them questions, if you ask if you can take their picture and share what they say, most jump at the chance. They want the world to know their story and the real Haiti. They want help. Because they are human and humans have an intrinsic need to be seen and heard and known. They are resilient, but only because they have to be all the time.

When Griefs Collide

It’s been three years since Bryant left this earth. Since I said the world was less bright without him in it. It still is. I feel for his mama and brothers today more than usual because I know their pain and I also had a front row seat for part of his last weeks here. It was terrible, and it wasn’t Bryant. Bryant was everything light and fun and imaginative and exciting. I’m so glad I knew him.

Today I crocheted a taco Christmas ornament for a 6-year-old boy in Georgia who is dying of DIPG. DIPG is a terminal childhood brain cancer. Not one person with DIPG has ever survived it. This little boy just loves Christmas and wants more ornaments to hang on a tree. He is in hospice care. He’s survived 20 months, twice the average, since his diagnosis. In pictures he is so swollen from treatment and steroids you would never ever recognize him. It reminded me so much of Eli. Like a knife in the heart. I hate the shit these kids go through. It kills me.

An ornament I ordered months ago came today. It’s a primitive looking mom with a baby strapped onto her in a carrier. I had the option to personalize it with limited hair colors and carrier colors, so it’s representative of the baby carrier I used for Eli. I got that maroon carrier when he was 3 months old and used it every single day until he was walking and would no longer be restrained. That thing soothed him and sometimes was the only way to get him to stop screaming or fall asleep. To receive the ornament in the mail today was emotional. 

My heart is aching for three little boys today. 

Day of the Dead

November 1st is known in Christian circles as All Saints Day. It comes from the Mexican holiday Dia de los Muertos, the Day of the Dead. Popular culture has latched on to the colorful sugar skulls of Dia de los Muertas. The history around All Saints Day/Dia de los Muertos is interesting, but like much of history in the last several hundred years involves colonization and also taking a "pagan" celebration and making it into a Christian celebration. (Womp womp.) The Day of the Dead is a public holiday in Mexico and people of Mexican decent around the world celebrate it, often by decorating the graves of their loved ones, praying for them, and cooking and eating the favorite foods of their departed loved ones.
I never paid any attention to the Day of the Dead before Eli died. In fact, I didn't even know the colorful skeletons and sugar skulls had any meaning or what culture they were from. I once asked my grief counselor how people in other cultures survive child loss. Mostly I was talking about places where people live in abject poverty, where child loss is more common and where mothers likely don't have a picture of their child or mementos to physically hold on to. Or, you know, grief counseling and entire books and blogs on the topic. She said something along the lines of, "Every culture has rituals and things they do individually and communally to remember their loved ones."
I have learned a bit more about the Day of the Dead in the last couple years. I love the idea of it now that I understand it. Now that I have my own departed loved one. It feels fitting. I don't have any plans to participate in any celebrations because I want to be so careful appropriating someone else's culture. But it is comforting to have this day in my heart with Eli, where I am not carrying my memories and loss alone, but knowing that millions of people are remembering and celebrating their own special person today along with me.

Depression and digging

I'm not sure what I've shared here, but in my daily life I've been pretty open about my somewhat recent depression diagnosis and experiences with antidepressants. If you know anyone in your real life who struggles with depression give them a hug. What a maddening and misunderstood condition. 

I've tried a couple of medications, some more helpful than others, some with more side effects than others. It took darn near an entire month for my current medication to have any effect, but I am immensely proud of myself for sticking it out. I'm grateful for how helpful it's been since.

As far as I can tell I spent at least six weeks in a complete darkness, without a single positive emotion. It may have been closer to eight weeks. I did not feel any sort of goodness about anything for any length of time. It was not for lack of effort, it is just what depression can be. Even when I received some wonderful news one day and could intellectually say I was happy, I felt no happiness, joy, delight, or even a slight lessening of the pain, darkness, and frustration. That experience was a touchstone for me. Both grief and depression can make you feel awful crazy, but that day I knew it wasn't my doing. It was my brain being a real pain in the heart. 

I've been much more functional for a few weeks now. I make it to meetings. I get out of bed. I respond to work emails. I keep up with most things. Ty and I finished the school year. 

But...

You can't outrun your problems. You can't outwork your problems. It turns out you can't outmedicate your problems either. It's not as obvious as it sounds (especially considering the opiod epidemic in our country). 

I never expected an antidepressant to solve my problems. I hoped it could help me function. I hoped it could help me feel something besides the desperation of depression. It has done that and I'm massively grateful. I FELT hope when I had coffee with a friend this week. I don't take that for granted. 

But I realized the one thing the antidepressant doesn't do is provide any kind of relief to my discontent in life. I don't know why I'm here. Life seems to have very little purpose. I'm bobbing in an ocean, waiting for something to give. 

This is all wrapped up in my extended existential crisis. I joke about my EEC because what else am I going to do? Oh, besides devour articles, books, and podcasts... However, the tug holds fast. What is the point of all this? Why am I here? Why are any of us here? What is true? How am I supposed to keep living? 

There are no answers. Not in a pill or a bottle or a person or a job or a book or a song or an article or an author or a leader or in academia. Even though some of those are good places to look, meaning can be hard to come by. And yet I can't stop digging for answers. 

On doing "better"

I wrote this in February. It's now June. I found it tonight and it still is absolutely true.

"I don't want time to heal me. I want time to set me ugly and knotted with loss of you, marking me. I won't smooth you away." ― China Miéville

"So you're doing better, that's great, huh?"
::cringing:: "Um, yeah, I don't know. I guess. It's complicated."

This conversation has happened probably a dozen hundred times. I know it comes from a place of love, support, and encouragement. There is absolutely nothing wrong with wanting to be glad with me that I am functioning reasonably well.
Except I don't want to be doing better. I just don't. And I am in good company. (My fellow bereaved moms and I are doing our secret handshake now. Just kidding, we don't have a secret handshake, we just pass the tissues.)
Doing better means I'm farther from Eli emotionally. When I last held him I was shattered. In the days and weeks following I was such a wreck I could hardly leave my house. Any task was overwhelming. To be functioning at life now feels sort of good, but it also reveals how far away I am from the person I was the last time I saw Eli. That is a thorn in my side.
Doing better means I'm farther away from Eli in time. The fact that my pain has not lessened, but become familiar and easier to tuck away means I have had practice in dealing with it. Practice over time. So much time has passed since I was last with Eli. But then I'm really still in the beginning of this journey of survival. It just feels like it's been so long.
Everything is different. I am different. I hate it.
It's good that I'm doing better. But it hurts, too, to be doing better. My brokenness keeps me close to Eli. My brokenness proves to the world he was here; he lived. I'm not just letting that go.
I'm so proud he was mine.