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.
Monday, December 3, 2018
Tuesday, August 14, 2018
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.
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.
Saturday, June 9, 2018
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!
Sunday, June 3, 2018
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.
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.
Saturday, May 12, 2018
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.
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.
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