To the doctors

I went to a service at Christmas for those who were struggling with the season- due to loss, illness, what have you. There was a time of sharing and a doctor who worked in trauma spoke about the uptick he saw in suicides around the holidays every year. He talked about how grievous it is to him personally, to see a patient brought in by rescue, only for it to be too late. He continued that having to tell the family and witness their pain was especially hard. And it felt worse to him to have to do that during the holiday season.
I wanted to talk to him before he left that night, but I missed him after the service. What I would have told him is that it matters that it hurts. It matters to the family that you feel pain in the loss of a life. Not pity for their loss, but pain for the loss to humanity of this one life.
I have spent much time in hospitals, interacting with medical professionals. I am sure they are generally taught not to show emotion. I am also sure that for most people in that environment, you feel you have to operate a bit disconnected as a sort of self-preservation tactic. And as someone who has seen many fellow patients die, I get that it's hard to keep feeling and weathering death. But it's also noble.
Death in a hospital is ugly. They tape a handwritten sign with the family's name on a door of a cramped multi-use conference room. You hate that sign. You want to rip it down, as if that would change anything. Someone comes and discusses autopsy with you. Your head is spinning and you aren't sure what the right decision is for any question they ask you. I have a friend who says planning a funeral is exactly like planning a wedding, but the worst wedding ever. It starts with all those questions and decisions at the hospital.
Of all of my friends who have lost a loved one in a hospital, do you know what everyone says about their experience? There was a doctor who shed a tear, or whose face betrayed their pain briefly, and the family saw that their hurt was shared. And it comforted them. For us, it was the morning after Eli died. We were still at the hospital, and many doctors were coming in Monday morning after a couple days away. One doctor ran to see us as we were leaving. He had just heard Eli had died and he was surprised. After everything Eli had been through, surprise seemed to be the common reaction among his medical team. Another doctor was walking into PICU as we were heading out for the last time. He saw us and for a moment his face crumbled. Then he hugged me. I can still see his face breaking in my head. And it comforts me.
So to the doctors, I'm not telling you how to function. Just know that it matters that it hurts you. In the end, it matters more that it hurts you than that there was nothing else you could do for that patient. Words are cheap. Honest human emotion says everything.

Six months

Six months. 184 days. I can hardly believe I'm still alive. 

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In my daily routine I usually drive across a set of railroad tracks. Every day just before I do I wonder if today is the day I will get hit by a train. I am not trying to die or wishing for my own death, it's just hard to want to keep living.

I'm sure it's alarming to read that, especially in our sound-the-alarm culture. I've talked a lot about it with my counselor. There is a huge difference between "being suicidal" and just not really wanting to be alive. My counselor tells me that it's pretty common after an out of order death. (I'm safe.)

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The one thing I've been able to do for the last six months is sleep. Trouble sleeping is one of those things that everyone assumes is part of grief. It is extremely common. In some stroke of ironic dumb luck, I seem to have been the exception to that. I've been able to sleep even if sometimes it comes with unsettling dreams. Well, grief is a monster that leaves no part of your life untouched, so as of the last couple of days I've been having trouble getting much sleep. I'm hoping it's temporary. Usually every month I become agitated the week leading up to the 19th. Anticipation grief. Then after the 19th I have a couple of good days. Here's hoping. 

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I've been reading Harry Potter. I've never read any of the books before last month. It's not really my genre. But a friend bought me the whole series last summer. So last month I picked up the first book and started reading. It is oddly cathartic to read. I think it's because it's really just a story about pain and suffering and the humanity of living with that. Or at least that's my lens right now. I'd probably see the same thing if I read Jane Austen. 

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We had dinner with Eli's immunologist in North Carolina last week. He is an incredible doctor and an even better human being. He's been a pediatric immunologist for over three decades. He has seen a lot of suffering, and has had well more than his share of patients die. He treated kids who had HIV before there was much treatment for HIV. He fought for all those kids and he watched them all die. And I wonder what that must have felt like? But then he also saw treatments start to work. And he saw his patients live. And I wonder what THAT must have felt like for him. 

At one point this summer he and I were standing in the entryway of Eli's PICU room, discussing viral loads. I don't remember if Eli's adenovirus levels were going up or down at the time, but I remember asking this doctor if he had ever had a transplant patient with adenovirus survive. He looked directly at me and after the slightest of hesitations said plainly, "No." I wouldn't have guessed that would've been his answer. He always acted like Eli had a chance. He really did believe Eli had a chance. It wasn't just that he was confident in his abilities as a doctor. He does not give up. He seems to always have a shred of hope that if you keep at it and you try to look at the puzzle differently, eventually you'll get it. It's a remarkable quality in any person, much less a doctor who has seen so much suffering. 

At dinner he toasted to Eli. 

Writing his name in the sky

When Eli turned 4 last spring while in bone marrow transplant, I felt lament that he couldn't write his name. It doesn't need to be rational, I was just emotionally exhausted from living in the hospital and watching my kid get worse and I hated that he couldn't write his name. 

After Eli died in July I was desperate for assurance that he was okay and that I was going to be okay, eventually. I asked (God? Eli? I don't know) to see Eli's name in the sky. I wanted to see it clearly, so I would know for sure that Eli was okay and he could write his name. This would give me peace. This is what I thought. Again, it wasn't and didn't need to be rational. It was just how I felt and what I desired. So I looked for Eli's name in the sky for a month or two as I became more and more cynical. 

Then I stopped looking. What did I really think I was going to see? It was dumb anyway. 

My mom started a tradition/ritual of releasing a floating lantern each holiday in honor of Eli and now my grandma who passed away suddenly before Christmas. She has my complete blessing to grieve Eli however is comforting. But I won't participate. It's too much for me. 

So on Christmas late afternoon my entire extended family set out for a park to release two lanterns. On their way they saw Eli's name in the clouds: ELi. 

I wasn't there. I was at the beach with what seemed to be most of the rest of Jacksonville. The weather was weird and foggy. When I got back in my car I had a text from my mom that they had seen Eli's name in the clouds. She didn't know I had asked for that. No one did. 

How am I supposed to feel about this? This one bizarre thing I asked for actually happened, but not for me to see. There is a picture. That is not much consolation. 

I have a lot of questions. What am I supposed to do with this? Accept it because that's how life goes- you might get what you want, but rarely in the manner you wanted? Be grateful that it happened at all and there is a picture I can see? What if I had been there? Would I have been able to receive it or would I have found a way to discount it like I do everything else? Mostly, why did it happen this way? 

Here is what I either know or presume: This thing that happened has not strengthened my faith or brought me comfort. It pisses me off. I do think I would have discounted it somehow because Christmas was terrible and I was so angry and generally on the warpath that day. But I don't know what to do with it now. Look, if it was God or Eli that put Eli's name in the sky, then why was it somewhere I wouldn't see it. What is that about? 

I really don't think there is a simple answer, or an answer that would make sense to me here and now. But I do wish I understood what that was all about. 

I'm not sure I wish I was there, because like I said I don't think it would have been the comforting experience I desired. But maybe that's all I really want is some true comfort. I don't know.

ELi

Miracles

It seems like nearly everything is considered a miracle these days. Every good test result, every good medical appointment, every passed exam, every new employment, and on and on. Maybe humans have always been like that.

I have no idea how it really works, but I have a certain bit of confidence that God does not reach his hand down into our lives and fiddle with every circumstance whose outcome we approve, while keeping away from the  circumstances whose outcomes we dislike. That appears to be what many many people believe, but I suspect they just aren't following those beliefs all the way through; they just haven't had those beliefs tested by life yet. 

I am incredibly skeptical of anything that is deemed a "miracle" or "work of God" or "answer to prayer". However, I have a couple of "miracles"/"works of God" from Eli's death that I hold deep in my heart. I would call them bits of grace. 

The night Eli died, no one expected him to die. I am thankful beyond reason for this. I'm thankful the doctors thought he had as good a chance as ever to survive another intubation, and I'm thankful our corner of the world wasn't on high alert. If they were, I would have heard from many people who claimed to have seen Eli in their dreams, or claimed to have known in their spirit when they were praying, the moment he passed. These are generous and would-be comforting things, but out-of-order death is so complicated, I'm not sure I could have beared it, or believed it. 

As it happened, no one really knew Eli was dying that night, except for the few of us who were there. 

Eli died just before midnight. When just his body was left, the nurse and respiratory therapist disconnected him from all the tubes and wires and Jerry and I spent a couple hours holding him. Around maybe 2am we decided it was time to make some phone calls to family. We had to leave the room because we got no cellular service in the back of the PICU where Eli's room was. I had lost track of my phone and found it in the blankets at the end of the hospital bed. When I pressed the home button, the screen lit up with a message. It had come through shortly after midnight. It was from a dear friend who had no way of knowing what had just happened when she hit send. She had texted to tell me she had been reading scripture and praying and had fallen asleep, but woke up and felt like she needed to keep praying and that she loved us so much. I messaged her back, "Eli died just before midnight. I think you were praying for him when he died." In the morning I got a reply, "I woke up and knew to keep praying. I had an overwhelming sense to tell you that Eli wasn't afraid and for you to not be afraid for him. But I thought you'd think I was crazy." 

I can't explain that. I also have absolutely no need to, which is unusual for me. I can tell you that when Eli's heart was slowing, I wasn't afraid. In that moment, I was glad for him. My gladness was greater than my pain. It has been quite the opposite since, but I'm glad I was able to be present in Eli's final moments. 

The gift of assurance through a supernatural message that Eli was and is well is such grace I can hardly think about it. I feel unworthy to have received it. But it is also the most precious bit I hold onto.

The other bit of grace came a week or so later. A young woman (now a dear friend) who used to babysit Eli, lost her sister last January. It was sudden and traumatic. A few days after Eli died in July, she was talking to her mom and told her about Eli's death. Her mom listened and then seemed to be putting something together. She asked again when Eli died and my friend said Sunday night. Her mom explained that on Sunday night she had dreamed of her daughter, my friend's sister. She had been driving her to the hospital for an appointment and was in a hurry when she got in a car accident. She got out of the car and was surveying the damage when she couldn't find her daughter. She looked down the street and her daughter was dressed in all white, holding hands with a little boy with blond hair, walking down the street away from her. 

I can't explain this either. My friend's mom didn't really follow Eli's progress, except for what my friend told her. Her dream could be a coincidence, but I, the skeptic of everything, just think it's a little too much of a coincidence. 

I'm grateful that Eli's death itself was private and unanticipated. Grief and loss and pain and life are complex and confusing without projecting clairvoyance onto them. I'm thankful for these two nuggets of grace that I am able to just receive and treasure. 

A Grief Paradox

I don't think happiness is the goal. I have suspected so for a long time, but since having my children I have become more and more sure of it. Happiness is the cheaper version of what makes us tick. It ultimately is not fulfilling.

I think connection is what ultimately fulfills us in life. But connection is expensive. It requires us to be vulnerable with each other, to be our true selves, without the assurance that we will be met with acceptance. Connection is when our deepest, truest selves come out and interact with another's deepest, truest self.

Neither connection nor happiness are static states of being. They are moments we carry with us. They feed us. Happiness makes us smile. Connection makes us feel whole. 

I was talking to the husband about this the other day, in relation to my grief. Really, in relation to the fact that I am hiding in a hole and I cannot, will not connect openly over my grief. I lay in my bed and watch an ungodly amount of TV and no thank you, I would not like to talk about it or share pictures or memories. It's just too much. 

The husband thinks that's part of my problem. He thinks I'm a connector by nature, so keeping all this pain to myself is keeping me in deep grief. I can see where he's coming from. But I don't totally agree. I'm in deep grief because my kid is dead. Connecting over this grief is too much. It's too big, too red hot, too scary. Connecting over this grief isn't safe. I am confident that I would end up unresponsive on the floor and someone would need to call rescue. And the last thing we need is more medical bills. 

So what do I do with that? 

I think the husband is wrong. I think he hates seeing me like this. I think he wishes the collateral damage of having a dead kid, which is having a non-functional wife, is something he could fix or solve. I think seeing a grief counselor and going to grief club is the most connecting I can do right now. I don't know if I'll ever be able to connect more openly over this pain. I think if there is any hope of that, it will be a long time.

It's a paradox for sure, that connection is what we need and yet I can connect only limitedly over my grief. 

I could be completely wrong about all of it. I know almost nothing for sure. But I am pretty sure about happiness. I refuse to cheapen my life by chasing happiness. And that's not the grief talking. 

**While I have searched myself over the years and come to some of my own conclusions, connection and vulnerability can be explored in depth through the work of Brené Brown. Seriously, go read her books.**

To my parents, on forty years

Today my parents celebrate forty years of marriage. Their anniversary always sneaks up on me because it is immediately after Christmas and the New Year. But it seems appropriate that as each new year begins, they begin a new year of marriage. A new year of opportunities to love more graciously and selflessly is stretched out before them in a way that is more natural than my own summer anniversary. 

So what can two people accomplish and weather in four decades? They have lived in two different states, six different cities/towns, raised three children, traveled to at least 45 of the fifty states, not quite a dozen countries, held at least 13 jobs between them, owned five houses, an unknowable number of vehicles, been a part of at least five churches, buried three parents, a sister-in-law, one grandchild, and a few dear friends. 

I don't believe my parents have ever taken the easy way out of anything. They pretty much set up camp on the road less traveled by forty years ago and have not been swayed to a different path. They have had times of struggle and hardship- in faith, marriage, and finances. And they have had times when it all has worked out; where trust and faith and getting bills paid has come easy. 

Through it all they have done the hardest thing. They have stayed constant to each other and to their values and to the people in their lives. They have loved when love felt impossible. When trust has felt foreign they have remained steady until it returned. They have wrestled through faith and found their way together. They have taught my brothers and I how to love and how to parent. They have done all these things that have brought them to this day, four decades after they made promises they had no idea about, because they have consistently chosen love and presence in each other's life. 

Happy Anniversary, Mom and Dad. We are so blessed by your love and your example.