Green for Redemption

My heart will be green on Tuesday. Green with love. Green with gratefulness. Green with redemption. Green for a bone marrow transplant.
As the first anniversary of Eli's death approached in 2016 I set my sights on a bone marrow registration drive. I set my sights HIGH. I contacted the regional rep for Be The Match and explained what I wanted to do. He said he would send me a registration drive box, a box complete with 25 registration kits. 25? Did this dude not know what I was about to do and the hundreds of people who were about to be added to the bone marrow registry? I asked him for more and he obligingly sent me a few more boxes.
Well, he knew way more than me, namely how challenging it is to get anyone to sign up as a bone marrow donor. It takes an unbelievable amount of education along with an open-ended ask, which makes it a very hard sell.
For our very proper drive we had a table and a tent set up at a food truck rally with thousands of people. I had friends there to help talk to people. Probably a couple dozen folks I knew in real life came to the rally just to register. That was wonderful! However, I don't think a single person who came to that food truck rally to eat decided to register.
Reality slammed into my expectations and combined with my big feelings of the anniversary of Eli's death, it wasn't pretty. I was frustrated and disheartened.
But I wasn't done trying. I called a couple church people from a few different churches and got all set to bring my big story and my big ask to church. And I did, and people were much more responsive. That is likely due to the fact that most of those people had followed Eli and prayed for us. They already had a connection. I ended up with about 50 registrations that I sent in, and decided that was close enough to call a success. But still my frustration with the general public on the matter was damage that had been done.
Since I sent those boxes back I haven't thought too much about the bone marrow registration drive. Until this weekend.
A close acquaintance from years ago sent me a message Sunday morning. She had registered when I spoke at church, but mostly swabbed her cheek and prayed she'd never match. She wasn't one for needles. But a few months ago she was contacted by Be The Match. She was a preliminary match for someone needing a bone marrow transplant. She learned the recipient was the same age as her brother. That's a hard thing to shake. So she agreed to more testing and it turns out she's a 10/10 match for this person. She's allowed her body to be poked and prodded and pumped with drugs to stimulate her bone marrow and now she's going to donate stem cells to save someone's life. Someone who has no other option, no familial match. Someone's person gets a second chance at life. Because my friend saw her brother in the description of the donor. Because my friend decided Eli was worth joining the registry. Because I was frustrated with people not caring and wouldn't give up until I had more registrations. Because I didn't want the first anniversary of Eli's death to pass without doing something that would spread love and life. Because Eli died in the first place.

When I think of that bone marrow registration drive I think about being out in the July heat and  nobody giving a crap about saving a life. I think of it as a very marginal success, thanks to the churches that let me come share and give people an opportunity to register. That's not fair to all of the people who selflessly signed up to be poked and prodded, should they match anyone needing a second chance to live. I'm incredibly grateful to my friend for saying yes that day, and saying yes again when she was called on for real. I'm grateful to every single person that registered, and to every person that was willing but didn't meet the criteria. Your generosity is hope for hundreds of thousands of people.
For me? My friend's bone marrow donation is something akin to redemption.

Death penalty drugs break my PTSD heart

The death penalty exists in 31 states. In all 31 states lethal injection is the method used. However, there has been much debate on the drugs used over the last few years, at least if you read the headlines.
The concern has been that certain drugs cause pain that could be categorized as "cruel and unusual punishment" and certain drugs in combination have not been studied. I'm sure you are already forming an opinion on whether or not a person sentenced to death should undergo cruel or unusual punishment. I'm not here for that today. What I am here for is the drugs that make the headlines, namely fentanyl.
Do all of the talking heads have a real understanding of this drug, or do they just know the talking points they are fed by producers? Fentanyl has been in the news as the opioid crisis has exploded because it is an opioid generally used in hospital settings to control pain. I know because Eli was on fentanyl.
He had a pain pump attached to his IV when he was in the pediatric bone marrow transplant unit, but I honestly don't remember what drug he was getting. When he was in PICU he had fentanyl a lot of the time, especially as his health roller coastered and he was intubated and kept sedated three different times over three months. Adjusting his fentanyl dose so he was getting relief but was not overly drugged was a daily conversation at times. We worked on weaning down the fentanyl a number of times. Fentanyl is not a perfect drug. As an opioid it is powerful, especially initially, but has real side effects. It can be hard to tell when your child is hooked up to multiple machines and is sedated, or is awake and can't even sit up unassisted, but they are there.
I want you to know that fentanyl was a good and useful tool when my child was suffering. I want you to know that his doctors and nurses took this drug deadly seriously and did not want him to have one milliliter more than he needed. I want you to know that when it became clear there was nothing else that could be done for him medically and he was slipping away, I looked at the doctor dead in the eye and told him that Eli was done suffering and I wanted there to be no doubt that he was out of pain. The doctor nodded and told the nurse to increase Eli's fentanyl dose by 50%. That is not a dosage change any doctor would ever make. I only asked for more because I knew we were always tiptoeing the line between just enough fentanyl to give Eli relief and too much. The doctor granted this much because we all understood the remainder of Eli's life would be measured in tens of minutes, not hours or days. He was intubated and sedated so it would not interfere with any interactions we might have at the end. That part was already done. This drug is something I utilized as a mother to help my son. I wasn't afraid of it. I had asked questions along the way. I respected the seriousness of it and the concern for drug dependence until the moment that drug dependence no longer mattered. The fentanyl gave me peace that Eli could have peace, despite his dropping oxygen level, and then blood pressure, and finally heartbeat.
So I don't have any solutions to the opioid epidemic or the issues facing states attempting to acquire drugs for lethal injections. I only have this: this drug that is so abhorred and politicized by people who have no experience with it was a precious gift when my son was suffering and dying. Seeing it in headlines and having "experts" discuss it hurts my heart and awakens my PTSD. It puts me right back in that dark room full of machines with the doctor telling me there was no other support they could give Eli. In the end, the use of it gave me peace about my four year old son's death experience.

Still Escaping Public Displays of Music

High on the long list of "No thanks, I'll pass" is music. Sad, I know, but not more sad than having a dead kid, so here I am. Yes, pretty much all music. Some musicals are okay. Some instrumental music is okay. Yeah, I think that's it. 

I thought I was done running out of shops and restaurants because of the music, but I've now done it twice in the last week, so apparently not. It's just a reminder that grief isn't linear. It ebbs and flows and always will for me. 

At the beginning of the week we had dinner with family on the patio at a local seafood place. It was a beautiful Florida evening. All was well and then this guy settles in with his guitar behind a microphone that I hadn't seen. Honestly I'm generally not a fan of live music at restaurants to begin with because it's always SO LOUD you can't have a conversation. But this guy was singing all the corny, sappy country hits. <Cue eye roll> When he started playing Garth Brooks' The Dance I looked at Ty and said, "Naw, I am not sitting here for this" and got up and went inside to the front of the restaurant until it was over. "I'm glad I didn't know the way it all would end, the way it all would go. My life is better left to chance. I could have missed the pain, but I'd have had to miss the dance" is not pleasant music for me to eat my fresh catch to. Thanks, I'll pass. Mercifully that ended the guy's set.

Tonight I had plans with a friend to try a new to me sushi place that has quite a cult following. We got there early because we had tickets for a behind the scenes museum tour that we needed to get to. When we walked in the Frozen soundtrack was playing LOUDLY and initially I assumed it was being played by the restaurant. I cannot adequately communicate how ridiculously loud it was in this small restaurant with maybe a dozen tables. We were one of two occupied tables in the restaurant and I realized the vocal stylings of Anna of Arendelle were coming from the other table. There was a toddler watching scenes from Frozen on a phone and the sound must have been on maximum. I put my head in my hands and sighed, hearing Anna sing about coronation day practically in my ear. Like pretty much every kid in 2014, Eli watched Frozen over and over and ran around the living room singing the songs. 

We ordered drinks, but it was so loud. I set my jaw to just grin and bear it, but it was impossible to ignore. It was difficult to have a conversation, much less a complete thought. My friend asked if I wanted to leave. Yes! So much yes! So we left a few bucks on the table for our waitress's time and got out of there. I have all the sympathy for appeasing toddlers in restaurants, but also perhaps a little awareness that toddlers aren't the only ones in the restaurant. There's about a 99% chance that phone could have been turned down about halfway and still kept the kid's attention. I'm sure I could have said something nicely, but it was easier to leave. 

It's been the better part of a year or more since music has driven me from an establishment. I thought I was done, but I guess not. I don't know if music will always be too much. Maybe. Maybe not. In the meantime, long live podcasts! 

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.

Why can't I just accept it?

I don't know why belief and faith are so hard for me. I'm not talking about a specific faith or belief. Just any faith, any belief, any anything.

I've been experiencing an extended existential crisis for about 20 months. (What a coincidence...) It's not for fun and it's not a release and it's not cathartic. It's not comforting or exciting or soothing. I just don't know if I really know anything. And while my brain can say, "Yes, I'm fully aware that there is no bottom to the well of faith, that there is nothing concrete to find" the rest of me is fully compelled to keep digging, keep looking, keep finding out more. It's much more of a compulsion than a hobby in religious history and beliefs.

It started after Eli died. I told a friend, "I don't want to be angry or sad. I've been both of those things for so long and I'm sick of it." My friend gently replied, "Don't worry, you will be." It didn't really matter how sick I was of being sad and angry. I had no idea what was coming.

Briefly, I was able to hold my faith close. I prayed. I showed up to worship. I tried to engage. And on a Sunday morning three weeks after Eli died, when everyone around me was singing about God moving mountains, I sat down. I didn't decide to sit down, my body sat down for me. My heart asked plainly, "But why didn't you move my mountain?"

That was August 2015. It's March 2017. My question remains. I thought I would be further along by now. I for sure thought I would be done treading water in an existential ocean by now. I'm not. Sometimes I wonder if I've still only just begun. I'm not in a panic over this lack of faith, though. I'm as comfortable as one can be with a bucket of doubt. I'm taking all the time I need to process, and it looks like it will be a while, still. I'm okay with it.

Except I'm so freaking frustrated. All of the exploring and listening and considering has gotten me exactly nowhere but farther down the well and I'm tired. I want to accept something, anything, so I don't have to continue all this striving.

Looking at the contributing factors to my current state I can say I got here through the combination of an extended traumatic life event and subsequent life-altering loss which my faith was not created to withstand. What I mean is the faith I learned got it wrong. My faith was great as long as I still had hope, as long as I was the one who could do the helping and fixing for others. It was meaningful. I was all in. I'm not saying I was taught wrong. I'm saying the very faith I shared with my nearest and dearest was wrong.

Look, before you get worked up, please know this is not an attack or a dis on any faith. This is my faith falling apart. Despite the terrible things done in the name of religion throughout human history, faith itself is good for humans. It is good for people to have faith, and with it a community, a sense of meaning, hope. Those are wonderful things and I want them for others and for my own family, I just can't get there myself right now.

Yesterday and everyday before that for several months, I would have told you that I don't believe in an afterlife of any kind. So yes, that means I have been of the opinion that I will never see my son again. Yes that is as shitty as it sounds, maybe more. Today I'm not so sure, though.

I've been pretty doubtful that God even exists. He's certainly not a "good, good Father" if he does. Who can know? I've been wondering if maybe God is more energy than anything.

I wish I could believe something. When Eli died and I asked to see his name in the clouds, and then most of my family saw the exact thing I had asked for (his name in the clouds ON CHRISTMAS) and all I got was a photo of it, I could only ask Why? Months later I talked to a fellow bereaved parent about it and he asked me if I would have been able to accept it if I saw it myself. I know you think the answer is Of Course, but it's not. The answer is probably not. And then this January my mom saw it again and called me, and I *happened* to be driving almost exactly parallel to her a few miles away at the exact same time and so I saw it too. You would think since this bizarre and specific thing I asked for has quite obviously happened I could accept at the very least that it is a sign of sorts. But you would again be wrong. Because all I can think is that Eli is a really short and linear name, it's not like I named the kid Mergatroid, which would be much more impressive in the clouds quite frankly.

I don't want to debate theology. I just want to be able to accept some kind of faith.

I thought I was going to hang my hat on science, but it turns out that takes too much faith, too.

German theoretical physicist, Werner Heisenberg, famously said, "The first gulp from the glass of natural sciences will turn you into an atheist, but at the bottom of the glass God is waiting for you."

First of all, that is beautiful. If God is real, then God is in everything that makes our world what it is. We don't have to be afraid of learning something that will disprove God.

I guess I'm just not to the bottom of the glass, yet. Or the well of faith and belief, which has no bottom anyway.

Dr. Joanne Cacciatore founded the MISS Foundation and the Center for Loss and Trauma in the years following her daughter's death. She has published peer reviewed research around the topic of child death and bereavement. Of the bereaved authors, bloggers, foundation-starters, artists, and parents I know, I don't identify closest with Dr. Cacciatore. But she does have thoughtful and well-developed ideas that make me think.

I read her most recent article, A Subatomic Connection to Our Dead, yesterday. It's short. Go read it. I'll wait. You have know it to understand the rest of what I have to say.

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I read about the invisible connection between entangled particles last night. I already knew about fetal microchimerism cells, the cells that babies leave behind in their mothers when they are born. I know I have some of Eli's cells inside of me. Which is the most brutiful thing.

But when I read, "We are one in the same, connected subatomically, in the visible and invisible realm" my body shook. Because I knew it was true. Not only did I know it was true, science was saying it was true, and I could feel it was true.

Today I don't think it's true.

I know, it's science in the process of being peer-reviewed, which is basically the rubber stamp of factual reality.

I just want to believe it. I just want to believe that Eli and I are still connected, somehow. Somehow besides memories and stories and pictures and ideas.

I don't know why I can't accept that it's possible there is a realm of consciousness after we die (oh you know, maybe like an afterlife), or that God or Eli could be communicating with me in some fashion, or that science shows quantum entanglement is real (um, which is did).

Maybe hope is still too painful.











If anyone happened by and is going through a deconstruction of their faith, hi there. Here are some of the books, blogs, and podcasts that have helped me examine faith in a healthy way and not just throw it all away.

The Liturgists podcast- I think starting at the beginning is a good idea because in the beginning it was more straightforward and topic based and frankly a bit easier to follow. Not that I don't love it now. It has just built on itself a lot.

Science Mike (podcast, blogs, and definitely read his book, Finding God in the Waves)

Rachel Held Evans' books A Year of Biblical Womanhood and Faith Unraveled

Pretty much all the things Richard Rohr has to say, especially his guest appearances on Episode 35 of The Liturgists podcast and Episode 86 of The Robcast with Rob Bell.

Why Everything Does Not Happen For a Reason, John Pavlovitz (blog)

Accidental Saints by Nadia Bolz-Weber

Any Poetry by Nayyirah Waheed

A Grief Observed by C.S. Lewis

What We Talk About When We Talk About God by Rob Bell

The entire Harry Potter series. I was a late comer to the Wizarding World, but it's so beautiful and comforting. JK Rowling wrote it as an allegory for the forces of good and evil in the world also the Gospel, so, basically just read it and cry and feel your feelings.

A Million Miles in a Thousand Years by Donald Miller

Aaron Burr

I don't know if you've ever heard of this musical called Hamilton about some of the U.S. founding fathers, but I quite enjoy the soundtrack. And because music is so very loaded for me, the Hamilton soundtrack is one that I can mostly enjoy without too many intense feelings. I mean, there is the whole part where Hamilton's son dies and they sing about it and I wish a train would hit me (sarcasm!), but mostly I stick to the first 3/4 of the musical. ;-) Music that I can enjoy is so sparse still that I listen to Hamilton at least five days a week. I still can't quite rap along with Lafayette, but I'm working on it.
Almost none of the characters are legit "good guys". Alexander Hamilton sends out all kinds of red flags for narcissism. And the antagonist Aaron Burr who shoots Hamilton in a duel is altogether unlikable.
Except I totally get Aaron Burr. Lin-Manuel Miranda said that if Hamilton's reaction to loss and tragedy is to go go go full speed ahead, Burr's reaction is to wait. Burr sings this song called "Wait For It" where he reflects on the loss of his parents, the pain of not really being wanted by any of his relatives throughout his childhood, his unlawful love affair with a woman married to a British officer, and he says if there was a reason for these things to happen to him, he's willing to wait to figure it out. Where Hamilton ignores the pieces of the puzzle and accelerates forward, Burr sits back and ponders the pieces of the puzzle, turns them over, reexamines them, considers them.
I get it. I feel frozen in place most of the time. What do I do now? I have no idea. I do things. I try things. But I have no idea what I'm doing. My sense of purpose has been highly modified and what do I do with that? I have yet to figure it out.
I had a meeting with the president of the local children's hospital last week. He met with me for two hours. I shared Eli's story with him. We talked about the future of healthcare for kids like Eli. It was challenging, but felt good to use the science and medical knowledge that is still floating around in my brain. He gave me so much to think about. It was a remarkable meeting.
But what do I do? I come home and I think. And I ponder. And I consider. And I think some more. I Wait For It.
I'm doing things. I'm working. I'm running. I'm raising more money for houses for Haiti. But I'm still mostly bobbing in an ocean of uncertainty with no land in sight.
Aaron Burr wasn't a great dude. He was political to a fault- I don't mean he was passionate, I mean he was a supreme manipulator. But I get LMM's version of Burr. He says, "I'm not falling behind or running late/I'm not standing still I am lying in wait"
Me too.

What to do for a family when a child dies

How to help someone who has lost a child

Pregnancy, infant, and child loss happens everyday. It happens to regular, unsuspecting people. And it's not going to stop.
I do believe that our job on this earth is to meet people in their suffering. Not make it better, not fix it. Just sit in the trenches, hold someone's hand, and witness their pain. Don't look away because it's uncomfortable.

The question is how do you provide support when you can't (and shouldn't try) to fix it?

I am in the unfortunate position to know and have written a list of dos/donts/ideas to a few people over the last several months. So here it is, more or less.
I'm posting this as a tribute to a little boy named Graham who died today.

This is from my perspective as a bereaved parent. A lot of it will apply to other very close losses. Keep in mind, what is comforting for one may be grating for another.


1. There are no magic words. You don't know what to say because there isn't anything to say that will communicate what you are feeling towards this person. That doesn't mean you shouldn't say anything. Recognize the loss. Say the deceased person's name. If you knew the person, say something you liked about them.
Example: "I was so sorry to hear about Eli. He is such a special little boy. I love when you would share pictures of him smiling. It always made me smile."

2. You can never make the bereaved person sadder or remind them of their loss by mentioning their child. They already know. It does not leave their heart or their brain for one second. They feel their loss all of the time. You bringing it up will let them know you haven't forgotten.

3. Set a reminder on your calendar every month on the anniversary of their person's death. Every month that date rolls around, send them a text or a message to say you're thinking about them, or praying for them, or you love them.

4. Food. This one is tricky. The immediate inclination when a person dies to cook meals for their family. That CAN be helpful. Or it can be overwhelming. For me, the idea of people stopping by my house was too much. Even over six months later I didn't feel up to having people in my home. It still felt intrusive. My home was my safe place. I know some people who in the face of losing their child wanted to do their own cooking because it felt like something they could control. So. Someone who is close to the bereaved person needs to find out what they are comfortable with. I had a small group of "safe" people who came over regularly to help me just sort through the boxes and boxes of stuff we had accumulated over seven months in the hospital. Those people brought me food, and they even became point people at times for others to drop off meals to be delivered to me.
Another option for food delivery with without intrusion is to put a cooler on someone's front porch and have food dropped off in the cooler at a certain time (ex. between 5-6pm). That way whether it's hot or cold and needing to be heated, it will stay the right temp in the cooler and the bereaved person can check the cooler after the appointed drop off time.
And if you've never tried it, takethemameal.com is great for organizing a meal schedule.

5. Offer specific help. They can't call you if they need anything because they have no idea what they need. And even if they did, they don't have the emotional energy to call.
Bring them toilet paper and paper towels. If they aren't expecting you, leave it on the doorstep.
Ask when garbage day is, then tell them you'd like to stop by each week to take the garbage out to the street. If they say okay, then actually do it.
Take care of their yard work.
Ask if you can do dishes/clean toilets/wash and fold laundry.
DONT DO THINGS THAT CANT BE UNDONE WITHOUT THEIR APPROVAL. Like laundry. You'd hate to be the one who washed the deceased person's smell off their clothes.
A gaggle of friends came and painted our house because we had moved in the middle of Eli's illness and I wanted our house to feel like a home. Such a gesture of big love.

6. Is there a sibling? Siblings get forgotten in child loss. Everyone is focused on the parent(s). If the sibling was already close to you before the loss, offer to take them to do something. Go bowling, go to an arcade, go out for donuts, anything. It's helpful for the whole family for the surviving sibling to receive some extra and focused attention on them. It takes a little pressure off the parent(s) and it helps the child(ren) have some moments to just be kids.
If you didn't have a relationship with the child before the loss, it is not entirely appropriate for you to start one in the midst of this tragedy. But you can buy a toy/game/activity for the living child and drop it off. Remembering and showing love to the living child is one of the best ways to care for the parents.

7.
Go to the funeral. I know it sucks. I wrote and gave my 4-year-old son's eulogy. Don't talk the person's ear off. Go. Be brief in your visiting. Go home. It can be helpful to share a memory about the deceased person because words are generally inefficient and awkward. Awkwardness is okay. Grieving people get used to being awkward.

8.
Learn the Ring Theory of care and support. It's one diagram and you'll never forget it once you read it. It's also applicable to every serious illness, tragedy, and death you interact with for the rest of your life.
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

9.
Gifts. Gifts can be touchstones when there is nothing else to say. A friend got me a personalized necklace with Eli's name and birthstone and a sweet saying that I wore for months. Someone else had a star named for Eli. Another friend sent a window hanging with Forget-me-not flowers pressed inside. Someone else had Eli's name embroidered on a kid sized Georgia bulldogs jersey (Eli's fave). Another person made a quilt based on some art I had posted of Eli's online. A friend crocheted a blanket. A different friend sent me a necklace she saw that reminded her of my love for Eli. That same friend sent me a children's book she had been reading to her kids that made her think of Eli every time. I could go on and on. Eli had a huge effect on the world in his short life and people responded so lovingly to my family.
If it takes a village to raise a child, it also takes a village to grieve a child.

My personal recommendations are:

-A personalized piece of jewelry with the child's name. Etsy has incredible choices, a lot in the $30-$40 range. (www.etsy.com)

-It important to a grieving mom that all of her children are recognized. Especially in the situation of a stillbirth, consider personalized jewelry with all of her children included. Etsy again has the best choices. (www.etsy.com)

-name a star after the child. It's a crazy time after your child dies. I liked looking at the constellation where my son's star is from my driveway. The star wasn't him, but he wasn't here and the star was a thing I could see.

-books are hard because when you're deep in grief concentration is nil. She may get to that book and she may not. It took me a couple months to be able to read a paragraph and know what I had read. Books aren't bad, they're just tricky.
Sometimes books are meant with love but the message in the pages can cause more pain, not peace. For example, I walked into lifeway christian store several months after Eli's death. I spent about an hour perusing books and do you know there was one single book in that whole store that didn't feel uncomfortable like an itchy sweater? That book is A Grief Observed by C.S. Lewis. Lewis writes the truth- that it hurts, that the shear weight of the loss is impenetrable by hope at times. Lewis is raw and lays it out there. It was like a balm because it was real. It wasn't another author trying to wash over my pain with platitudes. Platitudes are for people who are afraid of suffering, not people who are suffering. When I read words such as, "She could not mourn....She wished only to cease, to be no more, as if sunk in some profound sleep devoid of wakening" (-Tanith Lee) I don't feel worse or suicidal. I feel understood. I feel less alone.

-memorial gifts. Often a family will designate where they would like gifts given in lieu of flowers. Do this. Even if it's $5. The organization will send a letter to the family letting them know the gifts that were given and by who (unless it is given anonymously). This is a means of silent support. The family will know you care and be touched that others were helped because of their child.

-other memorial gifts. Plant a tree in the child's honor- either at the family's house and with their permission (and be prepared to go take care of it yourself until it's self sustaining because the family has zero ability to handle that. If you can't or won't take care of the tree don't plant it) or with an organization where a tree can be planted in a person's honor. Google it.
If there is a certain activity the child liked you can give in their memory through World Vision or other relief organizations. My parents buy soccer balls and a family of ducks for children and families in abject poverty through World Vision in Eli's memory every year because he loved playing soccer and he loved feeding the ducks. Generally when you give in someone's honor or memory you are emailed a card to print out and give to the person or family.

10.
An open ended weekend getaway. If you have connections or means it can be nice to gift the bereaved parents a weekend stay at a hotel or bed and breakfast. If you are planning on doing this I would mention it to the family and let them know you will follow up with them in a few weeks. And then maybe a month or so after the funeral mention it again and ask them if they're open to it and if so to give you a couple weekends that would work for 1-2 months out. Losing a child takes an enormous toll on a marriage. We are over 18 months out and still spinning our wheels and trying to love each other well and failing hard (much harder than we ever used to with much more regularity). Men and women, mothers and fathers just grieve differently. It can feel like banging your head against the wall. Some time away won't solve everything, but it will be a nice reprieve.

11.
Just say the child's name. Any chance you get, use the child's name in a sentence to the parents. I remember crying to a friend and asking her to promise me she'll always talk about Eli and say his name to me. I didn't want people to stop saying his name. But they do, and that's life. As time goes on people say less and less about the child, much less their name. It is a gift to hear someone use Eli's name.


This is a work in progress. Some of these I wrote a year ago and some I wrote tonight. I suspect there may be more that I add over time.

The House That #LoveForEli Built

Right around the new year I woke up to find several notifications from paypal telling me that my friends had sent me money. My groggy brain had no idea why, and at first I thought it was a mistake. Then I realized it wasn't one friend, it was several. What in the world was going on?
I also had about a thousand facebook notifications. Which after taking about a month off of social media at the end of 2016 was pretty fishy.
What could possibly be making my phone blow up like this?
I discovered the intervention of the one and only Jennifer Richardson. She had posted the following on facebook and had gotten quite a reply in a short period of time:

You might have heard of my friend, Lisa Watterson. If you have, you know that she's chosen love in the face of horrible tragedy again and again. This is a beautiful, life-affirming choice, and I always want to be the kind of friend who cheers this on.

She has partnered up with the amazing Rebecca Akridge to do some fundraising for a children's home and school in Haiti, and she now has the opportunity to go there!

However, as I'm sure you are aware, going anywhere and doing anything costs money, and guess what? The Wattersons will have massive hospital bills for life. So let's help Lisa raise $800 in less than a month. If 16 people can offer $50, we're done here (post your name and pledge amount on this thread or in a private message). I know Lisa is also going to make some crochet earrings and crafts to sell if you're interested.

Finally, I have posted this without consulting her or asking her permission at all. 😂 So if you happen to be offended or annoyed, feel free to direct that at me.

Such sweet words, and so typical of her to just do something without asking. ;)
What ended up happening was this: somewhere in the comments someone had the idea to try to get the trip funded before I woke up. Since I am not a morning person and make my own schedule, they had a little bit of leeway...but they did it! By the time I was up and trying to figure out why people were sending me money my trip was fully funded! Simply incredible and incredibly humbling.

What Rebecca and I had done in the fall was organize an online auction to raise money to finish funding a home for a little girl in the scholarship program through The Mission Haiti, whose home had been damaged beyond repair in Hurricane Matthew. There are 53 students in total from the scholarship program who truly need new homes. Many had been sent to be restaveks, child servants, in other people's homes in exchange for food and shelter. Most of them are still serving as restaveks until a home can be sponsored for $4400 for them. There are no safety nets in Haiti.

What happened next was even crazier. More money was pledged than I even needed to go to Haiti, so another friend, Amy, suggested the fundraising keep going and a house be built in Eli's honor. People got behind this idea immediately. Amy and Rebecca connected with the people who run The Mission Haiti to match the idea of Eli's House with one of the student's families. They picked a little boy named Jolixson. He is 5 years old, which is how old Eli would be now. Jolixson's mom died last year. It's been hard for his dad and sister. Their home is now uninhabitable just months after losing their wife and mother. So now we have a little 5 year old boy without his mom, and a mom without her 5 year old boy (me). My son isn't here for me to care for, but I still have this love and I will use it for the rest of my life. We are building a house for Jolixson!

The cost of a small, concrete block home in Haiti is $4400. There is a difference between raising $800 and $4400. We are most of the way to funding Jolixson's house. The permitting process has already begun. It is really happening! But we need to raise the rest of the money.

I put together a T-Shirt campaign because it is a fun and accessible way for people to be involved, and also because I have been asked over the course of months about doing more #LoveForEli shirts. This new design is completely adorable. Jennifer's husband did this design to include the E that my sister-in-law created originally. I think you'll love it. The campaign closes on Sunday, February 5th, so you have until then to order a shirt if you are interested.

If you want to give directly to Eli's House, you can do that here.

To order shirts with a % going to fund Jolixson's house, go here.

Here are photos of Jolixson, graduating from PreK, and Eli with his big brother Ty about a month before he got sick, age 3 1/2.

Thank you for your always and forever #LoveForEli

Child death delegate

My club grew today. My club is always growing. But this time I knew the parents before they crossed the threshold into the life of "after". 

We run in some of the same circles, our kids have been in youth together, we have volunteered together. I know this family; I know their daughter. 

It just sucks, plain and simple. And I have all the complicated feelings. Thanks, grief. 

I got to see my new club members at the hospital yesterday before they were officially club members. I got to see their daughter while she still had blood pumping through her veins, while there was still air in her lungs. She had been declared brain dead the day before. But her body was still alive. She was warm and soft. And just as precious as every other day of the 15 years she spent on this earth. 

Visiting a family whose child is critically ill or on death's door can be sticky for me. I often feel I am a representation of death and therefore hesitate to make contact. As though I am a delegate for the angel of death. While this is untrue, the fact remains that I do represent child death. It would be completely understandable for a family facing the worst to not want to see or hear from me. So I struggle to say or do anything until after. 

These friends were gracious. I happened to have a meeting at the hospital and before I left I inquired with the chaplain to see if this family was open to me coming by. I didn't want to miss an opportunity to connect, but I also didn't want to force myself into anyone's private space. They were incredibly generous and welcoming. Sharing hugs and being in their daughter's room was sacred. Seeing all of the IV pumps, tubes, and machines, hearing the beeping alarm of a finicky pump and the loud whooshing of air forcing pressure into her lungs was familiar. It was a different place than I had spent the last few months of Eli's life, but the scenery was the same. 

It would be expected for me to be uncomfortable or emotional in a children's hospital. It is a common experience for bereaved parents. I'm really not. I feel confident in a hospital. I know how it works. It's familiar and predictable as far as processes and procedures. Hospitals are serious, but not upsetting for me. 

The grocery store that is near the house we lived in for most of Eli's life? Oh my that place is so sad. It's alive with memories of my little guy. I went there yesterday for the first time in a long time. I was just in the area and needed to pick up a few things. I didn't think anything of it. But once inside, every department and aisle made me moan with heartache. I remembered opening the dairy case to get milk with Eli in the cart. I remembered taking him to the bakery to pick out a cookie- "Chocolate chip or sprinkles today?" "Chawkwit chip" That store is filled with echos of Eli and I didn't realize it until I went in. 

Grief is different for everyone. 

I know these new sojourners will receive an abundance of love and support. But they'll still have to find their own way. We all do. 

If you are a praying person, please pray for the Armga family. 

_______________________________________________________________

I was thinking about this picture this morning and I had to find it. I dislike it for so many reasons: it's horribly back-lit, the angle is unflattering, I hadn't washed (or brushed?) my hair in days, you can see how short my chewed up nails are. But even the moment I took it I knew it was a keeper, if just for me. Eli had been sick for days. We were filthy and sick of being sick. But we were on the couch playing my ukulele and the kids' toy guitar, just randomly strumming and making faces. It was a moment in time where Eli and I were perfectly tuned into each other. It was fun and funny and fleeting. I love Eli's face. He's purposely being so serious. :)

I remember the feel of his little arms around my neck and his sticky sweat where his head rested on my chest. 

Play the toy guitar. Take the picture. Even if you haven't showered in days and all evidence points to you not even owning a hairbrush. 

I still am not thrilled with the composition of this picture. But I love the moment it captured.

Real life is so precious. 

The ugly truth. And also love.

There is a child who it looks like will be joining Eli in the after, and whose family will be joining my club. He has an immunodeficiency, had a bone marrow transplant at Duke several months ago, and was very recently transferred from the bone marrow unit to PICU with breathing issues. It's not said and done, but they are very nearly out of options. Mostly they are waiting. Waiting for a test result, waiting for their child to either have a better day or a worse day so decisions can be made. Waiting for the doctors to come up with something. Waiting for God to perform a miracle. Waiting.
God dammit.
It is heartbreaking to know that another family is going through every bit of trauma we did and will leave Duke with neverending heartache.
It is also complicated. I have so many conflicting feelings.
I hate that this child is dying. I hate that he and his family have gone through so much- being uprooted, away from their community and support system, financially decimated, and suffering, so very much suffering.
I am deeply sad for this family.
Like a switch, it triggers anxiety and the hopelessness of depression. I can see, hear, and feel every detail (even the ones not shared. Especially those.) because I KNOW what it's like to watch the agonizingly slow trainwreck of your child dying in that very place. Of watching the machines and WILLING them to display better numbers, and nothing happening.
My brain is so foggy today. I'm having a hard time typing sentences. I keep retyping the same words and deleting them because I forgot I already wrote them. It feels like trying to move inside a jar of molasses.
I am numb because I cannot possibly take in more pain.
There is a sliver of envy as well. I wish I was still with my son. I wish I could touch him and sing to him and read to him and give reports on his progress.
I don't really want to be back in that PICU room. It was a brand of hell. But at least Eli was there.
I have mentioned before that one of my grief responses has been self-righteousness. I know it's ugly. It feels good, man. Like a drug. Since starting antidepressants along with ongoing therapy I have had the brain space and energy to work on that particular crutch. But a low blow like this pummels me back to the trenches. And my old survival tactics emerge. And here I am, in my ugliness, thinking, "I knew it. I knew this would happen. I've been waiting to see when it would." I mean, what the hell is wrong with me? That's disgusting. I reject it. But it's still there, just a hint. There is a fine line between feeling self-righteous about this and just plain being a pessimist. I am guilty of both. My experience absolutely has a hold on my outlook for pediatric immunology and oncology patients. But I confess it's not simply that. I don't think. It feels like there is a shred of self-righteousness mixed in the pessimism.
This makes me think about our doctor at Duke, whom I will always adore. The man never gives up, never counts his patients out. He goes down swinging. What a slap in the face my attitude is to his eternal hope and effort that this kid and this kid and that kid and that one could make it. They could, you never know. His approach is to be as proactive as possible until there is nothing left to do, and then you provide as much support as makes sense and see what happens. Sometimes they make it. This little guy whose future has my brain in a tumble today could pull through. I don't see it happening, but it could. I see. "Oh my god, he's dying the same way Eli did."
I'm so sorry for this boy's family that it has come to this. I wish none of us knew all those medical words and what the numbers mean, or this level of pain. I know no matter what happens they will survive, somehow. It's such a long road, though. No one deserves this.

A friend of mine bought me this mug recently. I'm drinking tea out of it today. It's a nod to the musical, Rent. If you don't know what I'm talking about, here is the song.

It's a good reminder. As much pain and sorrow as we endured in Eli's sickness and death and in grief, we experienced so much more love with him, for him, from him, because of him. Love was with us and still is. Love will be as constant a companion as pain for this family facing the worst possible outcome.

It's just so complicated to have all these feelings and watch others experience the same brutal loss. 

Almost

I can almost feel his feathery soft hair, almost smell his toddler sweat that beaded up around his hairline and the nape of his neck, almost feel his skinny little body in my arms, sometimes kicking and screaming and sometime snuggling, almost feel the wells of his dimples on my lips when I used to kiss them. Almost.
I can almost sense all those familiar ways I knew him, know him, like how I remember the velvet soft fur of my dog's ear when I was growing up. A couple dozen puzzle pieces are what I hold onto of the thousands that made him up.
It's not him, though. It's who he was. When he was here. Who he is is no more. He wouldn't have that same wispy baby hair if he was here now, at five years old. It would have grown coarser. He wouldn't have that same Mickey Mouse voice. He wouldn't still be carrying around Thomas the Train.
The sensory memories are the closest things I have to him. They are better than photos, or videos, or any of his things we kept. Because I can almost feel him. They are precious, but they are almost. He is light years away.

Merry Christmas

One year ago today we were supposed to go to New Orleans for an unchristmas trip, just our little family of three. It was our first Christmas since Eli's death. Instead, we woke up to Jerry having a terrible stomach virus and a phone call from my dad alerting us that my grandmother had died unexpectedly.  Merry Friggin' Christmas, right?
Here we are. It's been a year. My uncle died in June. A new nephew joined the family in August. It's our second Christmas without Eli. I have not even started grieving for my grandma or my uncle. But nobody gets away scot-free from grief. I know it's there, waiting until I am able to feel a pain besides the loss of Eli. I'm not exactly looking forward to it, but grief is a part of life because love is a part of life. It is what it is.
A few weeks ago my friend Amy took me toy shopping for Eli. After she had reached out to me and I shared my grief-of-the-season (it's hard to see the "big kid toys" in stores and realize Eli would have been the right age for them, and wondering what he would like, what he would be into), she offered to shop for Eli with me and donate the gifts.
Sometimes you are given a choice to keep things surface level or to dive deep and risk vulnerability. As much as you can bear it, dive deep. It is rich and beautiful and hard and worth it down there in the depths.
Amy and I went shopping on what turned out to be her birthday. That is such a testament to her heart, that she would spend her day loving and giving. It was good and hard, but I had more peace driving home than I have felt all year. Truly. What a gift.
The toys were donated to local church who took them to a rough apartment complex for their Christmas celebration. I wanted to go, but I ended up bowing out. Diving deep was too much that day, too early in the morning. I just didn't have it in me. But I know some little 5 year old boys felt loved and cherished that day. That makes me happy.
While Amy and I were shopping we got to talking. More accurately we got to shopping while talking. ;) We lamented some things as mothers and women do, and somehow we made a plan to go Christmas caroling at a nursing home. Not just that it sounded like a nice idea, but that we both had passion for making it happen. Caroling in a nursing home is something I have wanted to do for several years, but I hadn't ever gotten around to planning it with all the other hubbub that arises in December. With Amy and I working as a team we could make it happen.
This morning, facing my second Christmas without Eli, on the one year anniversary of my grandmother's death,
Amy, myself, a few friends, and all of our kids sang Christmas carols to other people's grandmothers and grandfathers. We were perfectly imperfect. It was beautiful.
I didn't put the dates together when we were planning our caroling. This is the day that worked for the nursing home. It could not have been a more perfect way to remember and honor my grandma, who simply adored Christmas and singing.
I am deeply grateful to Amy for listening, responding, and acting with her heart. I am thankful to our friends who joined us and completed our choir of sorts. Some of the friends don't even celebrate Christmas but were all in at the opportunity to show love to people who may be lonely. That is beautiful.
I don't know what tomorrow and the next day will be like. But I had my Christmas this morning.

The art line (a memory)

I am laying on my left hip next to Eli in his hospital bed. My hip aches from always laying on that side so I can face him. We are in PICU. We have a blue quilt over our heads. There are no covers over our legs. After weeks of use, Eli's arterial line has gone bad in his ankle. It's in an artery and it continuously monitors his blood pressure. We have two choices. The doctor can try to rethread the catheter, which will not hurt but is not guaranteed to work. Or the doctor can place a new art line. For a number of reasons based on Eli's medications and his present health, he can have no pain medicine for a new art line placement. It's not like a regular IV; it has to go into a main artery.
We decide rethreading the catheter in the current art line is the best place to start. But you can cut the tension in the PICU room with a knife. This has to work, but there's a reasonable chance it doesn't. I crawl into bed next to Eli and put the covers over our heads. I tell him that the doctor is not going to hurt him but he is going to adjust the art line. At 4, Eli knows what that is. I tell Eli his job is to not move his legs at all. That the doctor and the nurse and mommy and daddy are trying to keep from doing any pokes on him. And then I create a little world under the covers just for us. The bed is being adjusted higher and higher so it is a nice comfortable height for the doctor to get to work. Every light in the room is on. A small tray of tools and equipment is set down on my legs, so now I don't move a millimeter either. I start singing to Eli and it's just the two of us under the covers. It feels like the bottom half of our bodies are detached from the upper half, where it's just the two of us. At least to me. I sing one song after another so that we have something to focus on besides what is happening outside of the covers. Eli lays perfectly still. He doesn't talk or join me in singing. But he cooperates. He doesn't move. We hear the doctor and the nurse communicating quietly as they work, trying desperately to retain this line. I sing every song that I have ever sung to Eli and I start back at the beginning because it's not over yet. I keep us in this world, calm and far away from what is happening at the other end of Eli's body. I don't care what my voice sounds like or who hears it. This is the most serious task of my life. If we want the best for Eli-and the best is to re-thread this line-then my only choice is to make him feel as safe as he has ever felt, while in this cave of a room hooked up to beeping machines with a doctor working on him.
Eventually I hear the sounds of success: The release of breaths no one knew they were holding, jubilant conversing, and a few chuckles of relief. It may have been five minutes or it may have been five light years. My only awareness of time in the world under the quilt was the amount of songs I sang.
The bed is lowered, the instruments and supplies are picked up and my legs are no longer a table. I slowly pull back the covers and Eli and I reenter into his room in PICU.
It was a nice world while it lasted. We have succeeded in providing the very best for Eli. It could have gone the other way. We could be facing a traumatic fully awake and aware procedure. Tonight we exchange smiles, congratulations, and handshakes. We will revel in this victory, at least until tomorrow.

the human brain: making sense of reality since the beginning of human history

On Friday Tyrell got a concussion during his football game. It was technically a clean hit, but my heart didn't feel that way when my baby went down. You know the law of physics that says, "an object in motion stays in motion until an equal or opposite force acts upon it"? That's pretty much what happened. Ty went down hard. But he got up and trotted off the field. Initially I thought he was okay. But shortly afterward I was summoned to the sideline and the athletic trainer started explaining the concussion tests she put Ty through, which parts he failed, and the protocol going forward. Ty finished the game sitting on the trainer's table with ice on the back of his neck for nausea.
On the way home he started feeling worse and was having sharp pains when he breathed. So we went to the ER to get him looked at. All the X-rays and scans came back perfect. A concussion doesn't show up in a ct scan, but the hospital did verify that Ty had no bleeding or fractures in his skull, and that he had no rib fractures or lung collapse. *Just* a concussion. A traumatic brain injury.
When your brain is injured it requires rest in order to heal. How does one rest a brain? Basically, sleep a lot and lay on the couch without doing anything. No screens- cell phones, tablets, TVs, video games, computers, etc. No reading or schoolwork. (Really!) No physical activity that raises the heart rate at all. Rest, rest, and rest some more. That is HARD for anyone, but especially an active and social teenager.
Tyrell woke up Saturday morning feeling and acting like himself. His chest was bruised, but otherwise he felt fine. He slept a lot of the day. By Sunday he was getting stir crazy. I felt bad that he couldn't watch any football at all. He decided to go fishing with a friend in the neighborhood ponds. I figured fishing was about as mindless of an activity as any. I did send him out with a hat and sunglasses to protect his eyes and brain from sunlight. I likely let him fish too long, but I was grateful that he was doing something he enjoyed and not moping at me that he couldn't have his phone.
On Sunday evening Ty heard me talking to my dad about hurricane Matthew and the imminent effects it would have on Haiti. He asked a couple questions, thought for a minute, and said, "I'm going to fish this week and for every fish I catch I'll donate $1 to help Haiti." What a kid. Then it was my turn to ask questions. I asked him to clarify his plan a bit and if he was interested in letting people know who might want to sponsor him. He agreed and I put it out on social media. So far if he catches 100 fish he'll raise over $850 for hurricane relief in Haiti*.
Stay tuned!
As I think through all of these events I am tempted to connect the concussion to the fishing sponsorships. Ty only went fishing (for the first time in many months) because he got concussed and had no other choices he liked. If he hadn't gone fishing, due to the concussion, he may never have thought about how he can help. The human brain wants so badly to say, "this is why this thing happened", to explain away and reason out reality, apply meaning to the meaningless. Just because our brains are inclined to do that doesn't make it true. Ty didn't get a concussion just so he would go fishing and then have a bright idea to use fishing as a motivation to help people. He got a concussion because he took a hard hit in his football game on Friday.
I will say this until I die: not everything happens for a reason.
There is a better way, though. Instead of attempting to pull reason out of unreasonable circumstances, we have the opportunity and the brain function to respond well when we are faced with hard things. We can fully acknowledge our disappointments and tragedies alike and say, "This will not end me. I will respond with grace and goodness." That's not easy and it doesn't make life's hard realities any less hard. It does make life worthwhile. It does make the world a better place. Whether or not you can tell in the trenches, it's a positive move.
The lessons, the personal changes, and the relationship changes are not the reasons that things happen. They are just our human responses to disappointments and crises.



*If you are moved to sponsor Ty as well, pick whatever formula or method works for you: a dollar a fish, a quarter a fish, a dime a fish, or a flat amount. I'll post on Sunday night with how many fish he caught and where he would like anyone to donate. It's the honor system around here. ;)