Old problems in the new year

Wherever you go, there you are. 

This is not just geographical. It applies to time, too. You are never going to escape your problems. Some problems can be solved, some can be celebrated, some can just be carried with you. But none are going to magically go away. Yes, we'd all love to have an easier year with more of the good times and less of the hard. Wishing will not make that happen. I daresay praying will not, either. So what are you going to do with the problems that all followed you into the new year? Can they be solved? Can you celebrate them? Or are you just going to have to carry them? For now I'll be the one you see with their arms full. 

I don't know what is going to happen this year. Neither do you. 

A Christmas Story

I have a friend who is all the best things: funny, kind, generous, smart. She has also led a medically complicated life. That's not the most important thing about her, but for this story it's a detail that I will include. 

My friend has sent me money for the last few years to do something for a charity for her. She gives me some parameters and I go to work doing whatever she said. This year she sent me $300. She told me to sponsor a foster child for Christmas with $100 and to do something amazing with the rest. The sponsoring a kid part was easy. I tried to figure out what to do with the rest with my friend in mind. What is the beat of her heart?

I spent $50 on socks for homeless people, donated to a church that I know is dear to her that does monthly brown bags of food and supplies for homeless folks. Great. Perfect. I still had $150 left. I tried to figure out what group of people is overlooked and could use a little extra. The answer to that is young adults who have aged out of foster care. The outcome for these young people is not great. The cards are stacked against them and they have no resources. So I decided to do food baskets for local emancipated youth to help stretch their food stamps and budget this month. A friend helped me organize a food collection. My plan was to use the $150 to finish up the 20 baskets the Independent Living Supervisor told me they'd need. Except the response to the food collection was absolutely outrageous. People signed up and gave tons of non-perishable foods. The baskets were breaking they were so stuffed. And I hadn't spent a penny of my friend's money. Amazing. 

I still had $150 left and Christmas was days away. A child in foster care had their Christmas wish granted, 50 homeless (more like houseless) people would have fresh, clean, dry socks, and 20 young adults had baskets of food. I can't tell you that I prayed about the rest of the money because I'm not doing much praying these days. But I know a mom of a medically complicated young adult who has had a rough go of things over the last few years. She's weathered all of the bumps and curveballs, most of which she never ever expected. And it seemed like just the right thing to give the rest to her to let her know that she and her family have not been forgotten. So I did. 

And that is a Christmas story that happened this Christmas season. Because a funny, kind, generous, smart friend of mine told me to "do something amazing" with some money. I didn't really do a whole lot, except for having big feelings about it all. But amazing things happened. 

Thank you to my friend for giving me the opportunity to see the goodness in others, and thank you to friends that helped make all those things happen. 

Christmas

Not surprisingly this is the most rotten Christmas of my life. My most fervent wish was to not be home for Christmas, but between jerry getting sick and my grandmother passing away suddenly two days ago, we cancelled our Christmas avoidance trip. So I got wake up in my own house, in my own bed, without my little man. We haven't opened presents or even eaten. You can only watch so many episodes of downton abbey in a row before you get a headache. For me it was seven. 

I went to my favorite Christmas Eve service yesterday, put on by three churches, in a parking lot downtown. One church is Lutheran. One church is non-denominational. And one church is sponsored by the Episcopal diocese, but made up of homeless folks who meet for worship and fellowship as often as any other faith community. So the Christmas Eve service in a parking lot is fairly barebones and a hodgepodge mix of people. To me it's much more representative of the body of Christ than any one church I've been to. 

I was challenged by a story the pastor told about the worst Christmas ever. The worst Christmas ever was when nothing looked like it should- the decorations, the presents, the people. But that worst Christmas ended up being the most like the very first Christmas. Fear, humiliation, exhaustion, pain. 

********

This is my worst Christmas. Every single moment is excruciating. Also, some good things have happened. I have received some incredibly thoughtful gifts that have also made the world a better place for someone. A friend made a donation in Eli's honor to provide medical help for mothers and babies in developing countries. This is especially dear to me because so many times I thought to myself and said that the only reason Eli made it into the world and then through babyhood was due to modern medical advancements. Had we lived somewhere with no resources he would have probably died during birth. If not then, then as a baby. I am so thankful I got to have him long enough to get to know him. 

Eli's aunt and uncle made a donation to Samaritan's Purse to provide sports balls and equipment to a school in a developing area. It makes me so happy that there are some kids who get to run and play the way Eli always loved to. 

My parents made a donation to World Vision to provide soccer balls and to give a family three ducks for eggs to eat and sell. Eli loved the soccer league he did. He loved going to feed the ducks. These were things he did with pure joy. They are now painful, but precious memories.

I'm so glad the love we have for Eli is fueling joy and hope for other people around the world. 

Today is still completely rotten. My sentiments can be summed up with eff you. I pretty much hate everyone and everything. And also I'm thankful Eli's love continues to go on and is changing the world little by little. 

Reality of suffering

Eventually someone you absolutely cannot live without will die. And you will keep living. We like to banish the thought from our minds because it is so terrifying. When we see someone suffer the loss of one they cannot live without we say to each other, "I can't imagine!" and "It's so awful, I can't even think about it." And yet it will happen. You will not have to imagine it. You will not have a choice to banish the thought from your head because it will be constant. It will be your life. The knowledge that your person is gone will not leave your mind. I don't forget Eli is dead because there is not a single moment I am not thinking about him. No matter what I'm doing- watching a movie, trying to read, walking the dog, running errands, having a conversation- it is always in addition to thinking about Eli. 

I read something recently, intended for bereaved parents, that said, "We are not here to suffer." As in we are not on earth to suffer. I've been thinking a lot about that. Because I do kind of think we are here to suffer. Suffering is a constant in the lives of humans. Some of it is obviously brought on by our fellow man. Some of it is less clear as to its source. But it is suffering all the same. If you don't have much suffering in your life, congratulations, you win the modern civilization lottery. But just keep living and suffering will come, I promise. 

I was recently accused by someone I'm very close to of "trying to save the world". We were cross with each other so my immediate response was along the lines of, "Somebody has to, we're surrounded by assholes." Not my best moment. But I knew then and I know now I'm not trying to save the world. Some suffering can be put off, but none of it is altogether avoidable. No one can be saved from it. Loving people in their struggles and suffering is maybe the best we can do. We're going to suffer. We're going to face things we think we can't survive. What helps is a hand reaching out to hold onto when you can't see through. It doesn't fix anything, it doesn't make anything better, it just reminds you you're not alone, that someone cares. 

Don't be so afraid of suffering that you can't reach your hand out to someone who needs it. 

I was the one

I was the first one to know he was coming, the first to see the test result, "pregnant", the first to feel the ice of fear shoot down my spine. I was the one who felt his gymnastics and his hiccups as he grew and played in my belly. I was the one who labored with him for 17 hours and pushed him, launched him, like a man out of a cannon, from my body. I was the one who fed him, in seemingly a million different ways, just to get something, anything into his tiny tummy. I was the one who cried when he cried and laughed when he laughed. I was the one who gently covered his little bottom in balm when he had a rash. I was the one who sang songs, who paced and bounced for hours, to try to calm his discomfort. I was the one who made food from scratch and calculated calories and fat of every single bite, trying to get just a little more in him. I was the one who got up every night, over and over, to feed him and comfort him. I was the one who bathed him, washed his hair, kissed his feet, and made raspberries with him. I was the one he feel asleep on in the grocery store, strapped to my chest. I was the one who cheered endlessly at his every attempt to take a step and another step, as though he was discovering a new scientific element. I was the one who took his temperature, even though I already knew he had a fever. I was the one who begged him to just watch TV for 10 minutes so I could shower or eat or think. I was the one who drove him to swimming lessons every day for 8 weeks so he wouldn't drown. I was the one who read him bedtime stories. I was the one who planned his birthday parties. I was the one who took pictures endlessly (though now I would say not nearly enough).
I was the one who held him in the ER. I was the one who slept in the hospital bed with him. I was the one who took him to clinic appointments and at home cared for the line they put in his arm. I was the one who gave his medical history over and over and over and over and over again. I was the one who told him what would happen at the next procedure. I was the one who watched his spirit crumble when he realized he wasn't strong enough to run and play with his brother anymore. I was the one who told him the doctors were going to take his teeth out. I was the one who planned the tooth fairy party for after the surgery. I was the one who saw his tears for the frustration they were when he couldn't say words correctly without teeth. I was the one who cried and screamed in my car until my voice was hoarse, so he wouldn't have to know how angry and scared I was. I was the one who held his hand, who hid under the covers with him so we didn't have to see our reality. I was the one who lost my mind at doctors and nurses and policies that weren't helping him. I was the one who told him how much I loved him and how happy he made me. I was the one who told him he won the battle, but his body was tired and needed to rest. I was the one who kissed him and wiped his tears. So I was the one who laid next to him when his heart slowed to a stop.

Sucker punch

Today I'm angry. I like to think I'm angry at dumb people, but I'm not. I'm angry at grief. 

The last few weeks had been a tiny bit better. Not better, really. But I was more functional. Not spending as much time in bed, unable to get up and do the things that needed doing. It didn't feel particularly good or enjoyable or even like hope, but it was some minuscule movement in that direction. 

Connor died this week. Much the same way Eli did. And that deep grief that I had been given a small reprieve of came back to sucker punch me and hold me under. I sort of saw it coming and that didn't even help. 

I try to under commit to things. Expectations are the kryptonite of the grieving. But life has just happened this week and I have failed at all of it. I haven't been accountable in my parenting at all. I have just plain not showed up for several things. I have summoned the energy for things that it turns out I had wrong on my calendar. All this failing is pissing me off. 

I was talking with a fellow grief friend today. We were talking about this notion that "it's never too late to start over". I would like to start this day, this week, over. But grief has me so far down I can't even reach the surface to try once, much less again. My friend wisely shared that the whole "starting over" thing doesn't apply to death or grief. You just do what you can do. That's it. 

She's right. I just wish I could feel more like a person right now. 

Thankfulness and pain

I'm going to share a little bit of truth.
I've already heard this message a few times this week- "Be grateful in spite of your pain/grief and you will feel better". It seems to be the American way.
It is also patently untrue.
I AM thankful for some things. I am thankful for my kids. I am incredible thankful for my marriage, and how hard we are trying, even though every day is terrible. I am thankful I got to be Eli's mom. I'm NOT thankful to be a mom of a dead kid. I am not thankful to be alive.
My thankfulness does not alleviate my pain. It's both/and, not either/or.
Also, grief and pain and sadness are not complications or things to avoid or 'fix'. Although they are supremely sucky, they are natural processes and a part of being a human being. And while I am not thankful for it, suffering tends to make us better humans. All the best people I know, and the ones I only know through their story or teachings, have suffered greatly. They didn't claim joy everyday. They sat in their pain until they were able to stand in it, until they were able to walk in it, until they were able to shake some of it. Sometimes it's two steps forward, three steps back. Sometimes it's helpful to be grateful. Sometimes nothing is helpful.
I don't say any of this for pity. Please. I've had enough pity for five lifetimes. As Eli would say, "DisgUSting!"
I say it because so many people are hooked on positivity. Even many Christians who call it Christianity. Positivity is good and helpful, but it is not 100% of the equation. Some feelings demand to be felt before they will begin to fade into the fabric of who we are. Even if it's Thanksgiving. Even if it's Christmas. Even if it's a random Tuesday.
It's good to be thankful. It's also okay if your thankfulness doesn't take away your pain right now.

Four months

Four months

Today has been four months since Eli died. Four months since I held his lifeless body. It mostly feels like emptiness. And surprise. I don't know how I'm still alive and how I keep waking up every day. I'm surprised every time I look in my rearview mirror and I don't see him in his car seat looking back at me. I am surprised every time the milk goes bad before we finish it. Even though Eli was sick for a very long time I'm so surprised that he's dead. It's still really weird that he's not here. 

Some people seem to hear from their dead person on a regular basis. They see beautiful signs that their person has sent to comfort them, they see the silhouette of their person in the crowd for a moment, they sense them nearby. None of that has been my experience so far. I don't know if it's my doubting faith or my skepticism at finding meaning in everything, but my companion is emptiness.

There is an author by the name of Nadia Bolz-Weber whose thoughts on faith and God have been relatable and comforting to me. (Here is her blog: http://www.patheos.com/blogs/nadiabolzweber/) She talks about this idea of 'casseroles from God'. Casseroles from God are when you are strung out and something seemingly coincidental happens and it brings you comfort or keeps you going a little bit longer. A lot of times these casseroles from God come from people. 

I was talking with a friend yesterday about this concept and basically said it sounded great, but I didn't really buy it. 

Today I took Ty to school and came home and went back to bed. I stayed in bed for several hours and even though I had something pressing I just couldn't get myself up. Eventually I did get up and shower. The weather is terrible here. It is dreary and rainy and while it fits my mood it probably doesn't exactly help. I got in my car without noticing anything amiss. But as I pulled away from the house I noticed the grass lot across the street was absolutely covered in ducks and geese. There were at least 25 waddling around looking for food in the wet ground. It made me catch my breath. I immediately knew it was a casserole from God, or perhaps from Eli. 

If Eli was here he would have seen the ducks and the geese before we even got in the car. We would've had to walk across the street to get a closer look. He would have squatted down and just watched them for as long as I would let him. He would tell me about them and what they were doing. "Did you see that one, mama? He's lookin for somethin in the grass. He's so cute! He's with his family...." Eli would tell me all about it. It's so weird that he's not here to tell me about the ducks. 

It's hard to know.

It's hard to know. This is my favorite answer to things I should know, but my brain just flakes out on me. It's sort of a light-hearted, half-joking, but truthful response when my brain is worthless.

I had coffee recently with a grief sister and we were laughing about all of the inopportune times our brains go to mush and leave us feeling like complete morons.

Go to target and end up being unable to pay for your goods because you have no idea what your debit pin is? It's okay. It's hard to know these things.

Doctor's office asks for your address? Wow. It's hard to know.

Give exact change to a cashier, expect it's the completely wrong amount on the screen in front of your face? It's hard to know.

Last month I worked the pumpkin patch at Ty's school and I couldn't add 16+18. It's hard to know. (Even though I taught two digit addition to 8-year-olds for years as a teacher.)

My mom and I recently met up at a park to walk the loop trail there. As we finished up and were heading to our cars, we noticed her car door was wide open. Oh my gosh, did someone break in?? No. Her purse was still inside the car. We both just didn't realize her car door was open before hitting the trail. It's hard to remember these things.

So the next time someone inquires something of you and your brain turns to applesauce, just give a shrug and tell them it's hard to know.

Thank you

I have some real doozies of topics rattling around in my brain that I'm working on putting into words, but I also wanted to spend some time thanking old friends, new friends, and relative strangers for all of their love and support for our family over the last year-ish.

Here is what people have done for us: cooked meals, helped us pack and move (the bulk of it), painted our house, delivered chocolate to me at the hospital :), sat with us at hospitals, played with Eli at the hospital, sent countless care packages to Eli, sent letters and cards, sent pictures their kids drew, traveled to NC to be a friend, gave me pep talks, listened, sent money and gift cards, donated, fundraised, made tshirts, bought tshirts, made lunch for Ty all spring, included Ty in their family outings all spring/summer, completely made Eli's birthday by sending videos and pictures, prayed, told Eli's story, asked others to pray, cleaned out our Ronald McDonald room, towed our car home from NC, brought me coffee, fixed our TV, helped me sort through much of Eli's stuff, took stuff to be donated, cried with me, allowed me to be a little bit insane, sent memorial gifts, continued saying Eli's name.

I know there's more. This is everything I can think of right now.

I feel like I'm drowning. But I haven't gone completely under because you all keep pulling me up with your love and kindness. I don't think we could have made it through everything without you behind us. It has meant so much. At the same time, it's overwhelming and humbling. We don't deserve this much support. We're just a few people in the gigantic world of families with kids who have "rare" or life threatening diseases.

But Eli did deserve all of the love and care and kindness and prayer that you sent. It made a difference in his life. He LOVED getting packages. He was so limited in what he could do, but he loved opening boxes and exploring the contents. It was like Christmas, but more often. :) Eli loved notes and cards and pictures, especially from other kids. We would tape them up on the walls of his hospital room. He loved watching videos and seeing pictures you sent on Facebook. His 4th birthday was on a Sunday and I don't think he stopped grinning that entire weekend. He was so excited. Between all of the wishes/videos you sent and the party BMT threw for him, he felt so special.

Thank you for loving our family so fiercely and consistently. You made Eli's life better, and you're helping us survive.

Scarcity

One of my deepest held tenets is that I believe in abundance, not scarcity. I really do believe there is enough to go around. When I operate in scarcity there is never enough. Not enough for me alone, much less anyone else. When I operate in abundance, there is always enough. So I make it a point to turn back to abundance anytime I find myself off track.

I had an experience a number of weeks back that challenged that tenet, but in the end I think abundance served me well. Jerry heard me talking to my mom about having some kind of memorial jewelry made with a little bit of Eli's ashes. He thought I was offering for her to have some ashes for a piece of memorial jewelry for herself. So then he mentioned to his mom that she could have some ashes too. When he later told me this, my immediate reaction was scarcity. Crap! No! I'm not just giving my kid's ashes out! I was going to take just a little bit for me and leave the rest.

But when I thought about it in terms of abundance, it went a little different. Eli is dead. Nothing is going to change that. We're just going to bury his ashes, and then they'll be completely inaccessible. What happens if I give some ashes to the grandmas? What harm could come with that? And you know, I couldn't think of anything. These are women who love Eli fiercely. They were with him for a good bit of the bad times, too. And plenty of the good times. If some ashes bring them comfort or help them feel closer to Eli, then so be it. There's no reason for me to keep the ashes locked away. That would be of use to absolutely no one.

Everyone hasn't gotten their ashes yet. It's a tough decision, picking out memorial jewelry. But Eli's ashes are in my closet, ready to go. My hand is open. And while Eli's death is as shitty as ever, he's still teaching me.

All Saints' Day

The night Eli died I stopped being afraid of death. My baby is waiting for me, so anytime I go is fine with me. I'm also not afraid of suffering. I watched some of the most terrible suffering within our first world bubble, living in pediatric oncology and bone marrow transplant units for months. I even had my own very small dose of it when I got my central line in my chest and they gave me shots to stimulate my bone marrow to kick out more cells, and then hooked me up to machines for hours to pull the extra cells from my body. It was freaking terrible. One time Eli's doctor walked into the treatment room to see me while I was hooked up and I burst into tears. Not my proudest moment. But I was in a surprising amount of pain from the drugs, plus the stress of Eli's transplant and basically being a science experiment to try to save my kid. So yep, I cried. But I'm not afraid to suffer. I've seen so many kids do it.

Now the only thing I have left to be afraid of is awkward social situations. But death and what we call the afterlife are real parts of my life that I am living right now. They are much more real than we like to think in our first world bubble, but as a certain pastor I know is fond of reminding people, "We're all going to die. Nobody is getting out of here alive." 

The cool thing is that I know some pretty awesome dead people. I know hilarious, fun, make-you-feel-alive kids who happen to be dead. 

The other cool thing is All Saint's Day is in a few days.(Halloween actually came from All Saint's Day, but you're going to have to google that yourself.)  All Saint's Day is a day in the church (most Christian faiths and traditions) to remember people of faith who have died. Your people who have died. I have people who died. 

(The concept of "saints" is just the body of Christ, Christians. Both alive and dead. Hebrews 12 talks about being surrounded by a "great cloud of witnesses". The great cloud of witnesses are the people of faith who have gone before us and led the way for us.)

So this Sunday I'm going to celebrate my dead people. I'm going to light a candle to remember each of them and to celebrate the ways in which they paved the way for us. . They've been so generous to me. I've received joy, laughter, wisdom, understanding, and most of all love from them. 

If you think about it, remember a dead person or two on Sunday.

Happy All Saint's Day, Eli, Bryant, Wyatt, Maxwell, Nick, Megan, Brendan, Matt, Jeanne, Ray, Daphne, Ransom, Albertina, Mabry Kate, Katrina, John, Kevin

The kids are alright

One of the things I've discussed with my grief counselor is the discomfort I have when I interact with someone new who doesn't know about Eli. I struggle with the appropriateness of introducing myself, "Hi, I'm Lisa and my son died." I would feel better if I did that; it would take some of this invisible pressure off me, but it's not exactly appropriate. My grief counselor told me that it's common for kids who lose someone to walk into a room full of people and announce, "My mom died!" and run out. Then a few minutes later they can go back in and it's no big deal. To them. To the people? Well, they don't know what to do because death is so awkward in our society. Anyway, I get these kids. I would like permission to be them. ;)

One of the (many many many) difficult aspects of Eli's death, was there were all these kids who knew Eli and were praying for him. Then he died. As a parent, how do you explain something you can't understand, something that is going to break your child's heart? I'm sorry to all of the parents who had to do that when Eli died. When our buddy Bryant died last November, I couldn't bring myself to tell Eli. He was 3 1/2, how was he going to understand that his friend, who we had played with and prayed for, died? I did tell him several days later that Bryant went to live in heaven with Jesus. Eli asked me several different times about Bryant and I always said the same thing- that he didn't live here anymore, that he lived in heaven with Jesus now. I have no idea what Eli even made of that. I should have done better, but I was heartbroken and scared. Eli probably gets it now. ;)

I'm not sorry that so many kids had to face the hard reality that God doesn't always grant us what we want, or had to experience loss so early in life. In fact, I think as hard as it is to help them navigate it, it's good for them. Life is full of loss. Feeling all those feelings now will help them the next time tragedy comes to visit. Because it always does. It's almost like strengthening a muscle. If they never experience loss or are always shielded from it, what happens when someday they can't be protected anymore? They have no experience to help them wade through.

Beyond just experiencing loss, kids can be so pure and compassionate in their pain.

A friend of mine had to put her dog down recently. She and her family, especially her daughter, have been so loving to my family, despite having never met Eli. When their dog became sick and was suffering, they were heartbroken to have to say goodbye, even though it was the right thing to do for him. Her daughter told their dog that Eli would be waiting for him and would take care of him and she showed her dog pictures of Eli. The sweetness and the love and the faith of that just overwhelms me. I am humbled that this little girl would love and trust Eli enough to take care of her dog in heaven for her.

Another little person has touched me deeply. My friend's niece had a heart transplant some time ago. Through the magic of technology and social media, I followed along her journey and prayed for her while she waited and held my breath when her family announced a heart was on the way. The fragility of life and the unfairness of it all- the donor family, the recipient's family, will affect you deeply. This little girl's mom (my friend's sister in law), then followed Eli's story through social media. When I shared recently that I was struggling with nightmares, I guess this little girl's mom shared that with her daughter. Her little girl was also struggling with bad dreams (it's unfortunately part of life for most medical kids and their parents). When this sweet girl goes to bed she says a special prayer to not have bad dreams. And she started including me in her nightly prayer. The kindness and love that she shares by praying for me not to have bad dreams is almost more than I can take. I don't even know how prayer works and I can't do it right now, but this little one offers what she has wholeheartedly- prayers for sleep free from bad dreams.

Kids are capable of understanding so much more and loving so much more than we ever consider. I have been loved so well by two precious girls who live states away from me. They have made me cry big, fat, grateful, unworthy, healing tears. So many other kids have made me cards or pictures, have prayed for me and my family, have talked about Eli. The kids know what they're doing, if we just let them lead and tell us their truth.

Hope

I mentioned recently that I have hope I won't always be in the grips of grief, that it won't always be this bad. I don't have hope because I'm strong (I don't feel strong, ever, I mostly feel like I'm barely hanging on). I don't have hope because I have great faith (I have hardly any faith most days. I have just enough to not be able to deny God's existence, even if I wanted to, which, honestly, I wish I could, but not enough faith to trust God). Before you freak out at me, again, please know that I'm not having a crisis of faith. My kid died and I'm pretty beat down. Just like I have hope that I won't always feel this bad, I have hope that someday I'll like Jesus again.***

These days what gives me hope are people who have survived incredible loss and somehow continued to live. One of the hardest things is the fact that Eli isn't here today, and he's not going to be here tomorrow, and he's not going to be here next week, next month, or next year. How am I supposed to keep living like this? How will I not just fall over and die one day from the weight and pain of it all? One day at a time is a great idea and all, but do you live that way? It is terrible for life to be so overwhelming that you can't even consider tomorrow. How many tomorrows do I have? I don't really want very many. Please.

Yet I know people who have lost children and eventually were able to function and even thrive in life. There are even more people in history and currently alive well known folks who have lived well on the other side of disaster. There's not a clear path there, and these people still grieve for the ones they've lost, but they found a way to live and find joy. Their stories encourage me and give me hope, that someday I can be in that place. At least as long as I have to keep waking up and breathing.

I was watching a documentary about President Abraham Lincoln the other day. Did you know he had a 4 year old son that died? And then over a decade later, while he was president, he had a 12 year old son that died. I think that's why he was able to bring our country through the civil war. He was a grieving dad and masculine grievers tend to be task-oriented and therefore work a lot. (Feminine grievers seek out support.) There's a determination unlike any other that comes with controlling something when you know that ultimately you can't control anything. That's my opinion at least. On the flip side of Abe's grief was his wife, Mary Todd's grief. She was not well. She and Abe became a bit estranged. Then after Abe was assassinated she really wasn't well. She holed her herself up in a room. She didn't go to Abe's funeral. Then their youngest son died when he was 18. After that she was institutionalized for the remainder of her life. Seriously. Poor Mary. So much loss.

Vice President Joe Biden is another famous griever. His wife and daughter were killed in a car accident decades ago. I'm sure it was terrible for a long time, but he's been able to build a life after loss. Now his son died from brain cancer a few months ago. He just announced that he's not running for president and part of his reasoning is that he doesn't think he has enough emotional reserve for a presidential campaign (I'm paraphrasing). And you know? God bless him. It's a subtle statement on grief, but it's an important one. Losing someone you love takes a lot out of you and you don't just get over it or go on with your life.

Someday I might feel like living and experience joy. It won't be anytime soon. But I am thankful for the hope of grievers who have walked through the pain and made it to somewhere better, closer to whole. I'm not the first grief-stricken parent and I won't be the last. But man, humans can bear a shocking amount of pain and not die.


***When I say things like this, a lot of Christians and even friends get very threatened and/or have a crisis about it for me. This looks a lot like trying to convince me to think or feel differently. Even though I hate that with every part of me, I'm not going to let it stop me from being honest about my grief. I am not the only one that has had, is having, or will have this experience. There are so many people who in their grief are told their feelings are wrong, are told their faith isn't enough, that they should just pray and trust and they'd be better. That is a lie. Grief is a natural part of life. While soul-crushing, there is nothing extraordinary about my grief. If God is love, and grief is love with nowhere to go, then I think God knows a thing or two about grief. Also, the bible is filled with people who questioned God and expressed anger and sadness toward God, and they are our examples of faith. But when a currently living human who also tries to have faith expresses the same laments, it's somehow wrong. Let me gently suggest that some unconditional love will move me along in my journey far better than trying to convince me (or another grieving person) of something I'm not sure of.

Community

I would like to run away. I would like to be somewhere people don't know me and I can just be. I don't think that place really exists. I don't think I can really just be right now, but it's a nice escapist thought.

I have known people who tend to run away from things that get hard. It's just the way they cope. I would very very much like to be one of them. I know myself though. I would always end up with the same problems because I could never run away from me. You know, where ever you go there you are. What a pain in the ass truth.

I really want to run away from my faith community. A lot. I have enough issues with God right now, I don't want issues with his people. It's complicated because it seems like some weird things are happening simultaneously in my community. Eli died. There was so much prayer, love, and support from our church throughout Eli's illness and death. I understand that Eli's death really did break peoples' hearts and leave them scratching their heads at God. Only a couple weeks after Eli died, Abigail was born. She was supposed to be born and die. But she lived. And recently she had brain surgery and it turns out she really is going to live. So there's a lot of praising going on about that. Which, of course there is. As people of faith it is a natural and fitting reaction. I just don't really want to be a part of it. Not that I don't love Abigail's family or that I'm not happy for them. They are wonderful, gracious people. Of course I'm glad they get to keep their daughter. Everyone should get to keep their kids. I just don't understand how God works or how prayer works, and I'm not feeling particularly celebratory.

It would be easy to run away. I know exactly which faith community I would (eventually) plant myself in. I love a good plan. But is that the best thing for me?

Is it the best thing for my community?

Jesus was pretty big on community. Nadia Bolz-Weber points out in Accidental Saints that over and over Jesus heals people and then sends them back to their community. I think it's an important detail of God's character and intention for us.

It would be easy for me to leave my community. But I have this lurking thought that won't leave me, that perhaps if I left, both myself and my community would miss out on something bigger than either one of us. That this weird, unwanted tension is somehow holy.

There must be something otherworldly that can happen in a community when they deal with the hard stuff and wade through it together. It's fairly nauseating to me that in my community we have the depths of Eli's suffering and death and the height of Abigail's miracle. (I'm not entirely sure it's a miracle, but I'm probably the wrong person to decide that. It was definitely an amazing turn of events.)

I guess what I'm saying is we have these two contrasting events involving innocent children and real lives. People have been engaged in prayer and service to our two families. And they went so differently. So what do we do with that? Where does that leave us with God? If I left, like I want to, it would be easier to brush Eli's story under the rug and move on. I know many people wouldn't, but as a whole that would be likely to happen eventually.

But what if I stay, like I feel nudged to? I get to be the physical reminder all the time that we do not understand how God works. I get to be the one whose simple presence reminds others that God will not move mountains just because you prayed for him to do so. Sounds so great, right? Just peachy.

Truthfully, I feel exposed. And scared. I don't want to face this hideous holiness. It's too much to bear. It hurts.

There's something about the humanity in my life that always makes me think of women just like me in developing countries. Thinking through my situations in terms of how they might deal with it always brings me back to earth and often reveals wisdom to me. Not because I think I have it so much better, but because I think we're really all the same. A woman whose child died in a developing country does not have the opportunity to run away and find a new community. She has to stay in her community. I'm sure much of her experience is similar to mine- her grief, having friends who hold her up, having awkward interactions, dreading going to certain places, trying to avoid certain people. But if she can't leave her community and she has to let them walk through her pain with her, does something powerful happen? Is there growth that happens in her and in her community that is greater than any growth that might take place if she escaped her community in her grief? I kind of think so.

If I'm called to anything right now, it's to be true to my experience and to stay put. That probably means I should show up on Sunday sometime. No promises this week. But I'll think about it.

As far as Abigail's mom and I....we're trying. We have real love for one another, but there's almost a pit of pain between us. We didn't sign up for this. We don't know how to do this. It's just hard. We communicate a little bit. We're honest. I think there is enough grace for us. We're trying.

The unfixable

How hard it is to sit and watch a loved one suffer.

In the unenviable position of having a dead kid, it turns out there are all these other, secondary and tertiary losses and pains. Some are more obvious, like I don't get to watch my kid open presents this Christmas, and one hundred million other similar scenarios that I guarantee you can construct in your head without me. Another one of them is watching people I love try (or sometimes not) with various levels of success to comfort me. I hate that we even have to have that interaction, that we even find ourselves and our friendship in this place. No matter how well or how poorly it goes, no matter how unresponsive or bratty I seem, thank you for being brave enough to try. Thank you for being brave enough to say Eli's name. Thank you for risking awkwardness and pain to reach into my pain.

(BTW- there is a level of awkwardness at least 95% of the time when someone talks to me about Eli. So don't feel bad. Thanks death, for being so awkward.)

I am sorry if/when I don't respond appropriately to your engaging me. I have no idea what I'm doing, either. But I can promise that even if I'm distant/bratty/awkward/whatever, I appreciate your effort, your intention, your kindness. Thank you for thinking of me and for remembering Eli.

Remembering Eli is the very best thing anyone can do for me. You wouldn't believe how a quick "Thinking about you right now" text or a note "Saw _________ today and it made me think of Eli" can keep me going just a little bit longer.

Recently a dear friend of mine had a bit of a crisis within her family. I would probably commit a crime for this friend, my love is so fierce. (I am terrible at breaking the rules, so I hope she doesn't ask. We'd never get away with it.) I felt real pain for her, and I had extra anxiety just for her. ;) When things somewhat resolved, at least for the time being, I realized I had been almost holding my breath for her for over a week.

Believe it or not, during this time all I wanted was to fix things for my friend. Me, the one who is intimately acquainted with the understanding that many problems cannot be fixed (and no one really wants their problems fixed anyway). I just wanted to fix it. Because I love my friend.

The truth is, if *I* of all people could have fixed things for my friend, she never would have experienced that situation to begin with. What I mean is, if SHE and her family couldn't fix it, what in the world would MY 'fixing' do? How could I possibly make it better? More than likely, it would hurt her, or show her that I couldn't handle her pain.

But that human urge we have to 'fix' things when we see suffering, that is strong, huh? I think that surprised me more than anything. That it was so strong, I had to continuously redirect myself in order to love my friend better. Me, who knows exactly what it's like when someone wants to fix this unfixable thing.

I don't know that I did a good job. I checked in with her daily-ish. Together with another friend, we reached out to a friend who was more of an expert with that pain. Kind of a, "We love you and have never lived your pain, but here is a trustworthy friend who has." I didn't judge any decision that she made or give her any guidance ( I hope. I tried not to). One day when she was feeling overwhelmed and said she had to do something later, I offered to do it for her immediately. That seemed to help.

All the things that I did (or didn't do) for my friend were a reflection of the things that people have done and are doing for me. Sitting in someone's pain with them and not trying to make it better is maybe one of the hardest things to do. But it's also one of the most important.

This is grief- am I sick?

I've only come to realize in the last couple of weeks what an impact grief has, physically. I am frequently nauseous and I am exhausted all of the time. Because grief is kind of an asshole, I'll forget to eat for many hours. Not long enough to suffer malnutrition, but long enough to feel completely sick, like I suddenly just can't go on. My whole body aches, the thought of food is nauseating. It's tricky because I'll have never felt hungry and food will sound revolting. So I start wondering if I'm pregnant? (Nope.) Do I have cancer? (Nope.) Is it the flu? (Nope.) Oh, I haven't eaten in nine hours, maybe I should just try a cracker. I do this at least a couple times a week. I guess it just always surprises me because I am generally an emotional/stress eater. There are no rules with grief, though. It is so overwhelming and inescapable, you may or may not respond to it the way you have other stressors throughout your life.
Speaking of stressors, do you know what has been a super fun and new grief symptom? Headaches. Headaches for days. I don't typically get a lot of headaches (I know, I have counted my blessings on that many times.), so usually there's a reason- minor dehydration, illness, etc. I've tried all the things- more water, nutrient-dense food, less junk, I'm not addicted to caffeine or fake sugar, so it's not that, it's not allergy-related. Then I wonder am I pregnant? (Nope.) Is this the lead up to a brain aneurysm? (Not yet and probably nope.) It turns out it's due to the stress of grief. Ugh.
My physical symptoms of grief are exhaustion, nausea, sensitivity to noises, and headaches. And the brain fog. Is that a physical symptom? It's hard to know. There might be a few more, but those are the main ones. How fun for me that most of those coincide with pregnancy symptoms. Right? (Dude, we are not about to have a baby. The end.) It's super annoying, but when I think about it, it kind of makes sense. When you're pregnant, there is another living thing attached to you, basically draining you of life, not all the way, just enough for it to grow. When you're grieving, your grief is like a parasite, sucking the life right out of you. I mean, one is a good thing and the other is soul-crushing, but they have a similar effect.
Other quasi-physical effects are the ways anxiety manifests itself. For me, that's anxiety or grief attacks. Anxiety attacks and what I call grief attacks feel similar, but one is my brain focused on something present or in the imminent future that I cannot handle (anxiety attack), the other is the direct response to pain of the past (Eli's suffering and death). Sometimes I can practice grounding strategies and sometimes I'm just sobbing on the floor, trying to breathe. Grounding strategies are using your senses to basically prove to your brain that even though you feel swallowed up, you are physically okay. I know there are specific recommendations on what to do, but it's hard to remember that when you feel like you are swirling in a tornado, so I just name one thing I can identify in my surroundings with each of my senses. Example: I see the blue sky, I hear the a/c blasting air, I smell old food someone left in the car, I feel the bumpy road under my tires, I taste the coffee I drank an hour ago (wow, I should probably brush my teeth). See, it doesn't even have to be good stuff. And yep, it happens a lot in the car. But not always.
For the record, all of this sucks. Every time. And it's not getting better. Actually, it's gotten worse in the last month. There's no avoiding or escaping it. It doesn't let up or go away. I do have hope that it won't always be like this. But I still ask my grief counselor every time, if it will always be like this and if it's going to keep getting worse. It really might get worse. That has been the trend since Eli died. I have hope that someday I will wake up and be glad that I'm alive. I have hope that I won't always feel like a home to a parasite. I do know that in some way grief will always be with me because I will always have love for Eli. And that's all grief is, is a response to love with nowhere to go.

Seashells

We went to the beach this morning to avoid life. Or maybe we were embracing life, I don't know. 

The tide happened to be out and the shell lines were huge. It was a satisfying sight. (Shell lines are the swaths of shells left on the beach when the tide recedes.) Seashells are just evidence of where there once was life. I walked through the shell lines for awhile and was overwhelmed at the amount of life that no longer existed. 

I thought about how many human lives have ended this year, last year, in the last decade, in my lifetime, in the history of the world. It was actually comforting, the idea that Eli was in such good company. 

It has become evident that after a couple of months, a lot of people have moved on from Eli's life and death. That feels especially cruel, even though I know that's about them, not me. There are a number of friends who have not and their remembrance, their compassion, their gentleness is a hand pulling me out of the ocean I'm drowning in. 

I wish I could say it made me feel better, going to the beach. It was nice to get some sun, feel the sand and the water, watch the birds and the clouds, collect a few shells, watch Ty and his buddy play. I don't feel particularly better. I'm glad I went. 

Today was a terrible day

Today was a terrible day. In my early morning sleep I was having anxiety for a friend whose daughter was to have surgery today. I got up to get Ty dropped off. I was so exhausted. I came home and crawled back in bed, only to have multiple nightmares of Eli being sick and me not being able to do anything to help him. I woke up screaming a few times. (Geez, that doesn't sound familiar at all, I wonder why I would have nightmares about that.)
I was exhausted and rattled and sad all day. I did and have been doing a terrible job of taking care of myself. And everyone else.
My friend whose daughter had surgery got her miracle. She already had hospice care and it turns out hospice is no longer needed. My friend is no longer on a oneway train to my club of moms whose kids have died. That is so wonderful. This club does not need to get any bigger. I truly, truly am glad for my friend. But somehow it makes my lack of miracle echo even louder in my head. It leaves my inner six year old crying, "Why did she get ice cream and I got raisins?" I guess it just makes me human.
I cooked dinner for Ty and I, even if it was just frozen burritos. I spent almost an hour reading a book I've been carrying around with me for awhile.
I went to target to get an attachment for my garden hose. I've been preoccupied with how stinky my backyard is. Stinky like dog pee. Huge dog + tiny backyard = stink. It's not a complaint, just a fact. I've made lots of progress.
A weird thing happened at target. There were two women standing outside with a sign when I left and they said something to me in heavily accented (perhaps Eastern European-ish?) English. I didn't even pay attention because I've been in such a mood today. But when I drove out of the parking lot I had Ty read me their sign, "Help my for food". Not my typo, that's what their sign said. Ty and I talked about what to do. All of our experiences with folks asking for money for food end in the person turning down actual food. Every single one. But they have also all been men whose native language appeared to be English. We talked about what the chances were that these women were scammers or drug addicts. We have no actual idea. We do know that it is tough to be a foreign person in a foreign land. We know that regardless how we feel about God, Jesus welcomed foreigners in less than welcoming environments. So we decided to go back and give the women some money. Who knows if that was the right thing to do.
This evening I made my way through a few more boxes in my bedroom. After awhile they start to blend in as decor, so progress feels good.
I could have come home from picking up Ty this afternoon and gone to bed until tomorrow. I made myself do things. It did not make me feel better at all. That's how grief is. But I got a few things done, so I guess that's good.
Tomorrow is another day and all signs point to me waking up tomorrow. Hopefully it will be less miserable.

This is grief, getting lost

Yesterday I went to Walmart and when I got to the checkout I could not find my debit card. I could not remember the last time I used it. I had no other way to pay. I had no checkbook, no cash. I usually have at least one, if not both. I had to abandon my items at the checkout because I had no way to pay. Then I got in my car and I drove around the Walmart parking lot for a few minutes in circles and I could not figure out how to get from the parking lot to the road.

I am an adult human being of at least average intelligence. I have been navigating parking lots for 16 years. I have a keen sense of direction. I always know where I am going and exactly how to get there. Except not these days.

I am a person who knows how to navigate. If not life, at least spatially. I can find my way anywhere and I can tell you three ways to get to a given destination. Except not these days. 

It is hard for me to even understand how I spend so much time trying to find my way, turning around, doubling back because I missed my turn, changing course because I am not on the path I thought I was. I am constantly losing my way. Of course I have lost my way in life. But on the road? I have been driving these specific roads in this specific city for 14 years. And yet every day I get turned around, lost, unsure of how to get from where I am to where I am supposed to be.

I did not expect this out of grief. It is surprising and disorienting.

Now that I am writing about this aspect of my grief I am shocked at what a metaphor it is for grief itself.

I'm lost, I'm disoriented, I feel like I'm going in circles. I can sometimes see where I want to go, but I do not know how to get there.

Sometimes I don't want to live, but since I'm still alive there are some things I know I want to do. How do I get to those things? It's so confusing, it doesn't make sense. I'm in the Walmart parking lot and I'm driving in circles and I know where the road is but I can't seem to find the path to the road.

Besides being disorienting, this is maddening. I'm so frustrated that I can't do simple things. That I can't see where I'm going. Both in the Walmart parking lot and in life.

These days and Ruth

I've been reading and re-reading the book of Ruth. I'm feeling much more Old Testament these days and I love strong women. 

I've also been hearing the song "Drag Me Down" on the radio all the dadgum time. It seems no one can drag One Direction down. I'm always surprised when a catchy song that I like turns out to be by One Direction. Oh well. 

Drag Me Down keeps making me think of Ruth and Naomi. Sure there is a level of self-importance that I think Naomi doesn't share with these modern boys, but really it's a song about the loyalty of one person. 

Here is the chorus:

All my life
You stood by me
When no one else was ever behind me
All these lights
They can't blind me
With your love, nobody can drag me down

It's not perfect. But Naomi had no one, except Ruth. Ruth abandoned everything (which wasn't much, but still) in order to be Naomi's person, with no reward or outside influence that we can see. She decided to be loyal to her mother in law in the face of tragedy. Eventually something grand came of that loyalty, through Ruth's marriage to Boaz (which probably saved Ruth's and Naomi's lives), and generations later meant Ruth was part of the genealogy of David and then of Jesus. Oh, BTW, Ruth was a foreigner. So there's a lot going on in those 4 chapters in the middle of the Old Testament. 

Today I stopped by a bookstore because I was going to be a couple of minutes early to pick up Ty, and well, books. I picked up a copy of A Grief Observed by CS Lewis. The guy at the cash register asked me how my day was going. I avoided eye contact and stammered, "Umm, not great." Dude, I'm buying THE book on grief. Small talk is not an option. It's like if I'm buying monistat or immodium or whatever at Walgreens, I really don't want to have a conversation with the cashier. However, I don't think my grief is a reason to be indiscriminately rude to people, so I did look him in the eye and give him a straight faced "thank you" when he handed me my receipt and my book. 

Conveniently, A Grief Observed is a short book of four chapters. After I got home I took my book to bed and fell asleep after the first chapter. Grief is exhausting. Reading a book that mirrors your entire experience of grief is also exhausting. I don't know how long I slept...an hour or two. I was awake by dinner time. 

I figured I'd be up all night, or at least for all of Monday night football, so I could witness my middle school fantasy football opponent drive a nail in my coffin with his kicker. (UGH! Seriously, UGH!) But then a friend texted me and needed me to stay with one of her kids while she takes the other to the ER. I'm happy to do it. If Eli was here I wouldn't be as able to. That doesn't make it okay or give me some magical purpose, but it is an opportunity to do the next right thing. I care about my friend and of course I will be part of her village. 

I guess now I know if I have a hard time sleeping I can just read A Grief Observed and be worn out almost immediately. 

Darkness

(Subtitle: Is God Good?)
(I don't have an answer to that question and I am distrustful of people who do. But you do you.)

Here's what Christians do. They decide what they want, usually it's something at least somewhat altruistic, and then they pray for it and they get all their friends to pray for it. If they get that thing they prayed for, that "miracle", then they declare "God is good!!!" Obviously I am not above or beyond or outside of doing this because I asked perfect strangers to pray for my kid. And speaking of praying for my kid, what happens when that miracle is illusive? Do you hear anyone proclaiming how good God is when the miracle doesn't happen? When a kid dies? Nope. I was talking about this with a friend who said, "So God gets all of the credit for the good stuff and none of the blame for the bad stuff. I want THAT job!" Yeah, sign me up. Sounds like a sweet gig.
I don't know how it works, but I do think we have it framed wrong in our understanding. The good stuff might not be as good as we think it is, and the bad stuff might not be as bad. (I mean, it seems pretty bad, but I'm still pretty close to it, so while it IS totally terrible, I have the worst perspective possible to be providing answers.)
Here is what I don't appreciate. I don't appreciate people insinuating that I or we didn't pray enough or have enough faith. I tend to think people who are of that belief are the ones that don't have enough faith. A couple of our facebook updates on Eli's page were viewed over 120,000 times. Some of those people shared Eli's story and the need for prayer with others who didn't even see the posts. So I feel comfortable estimating that HUNDREDS OF THOUSANDS of people prayed in good faith for my son. Apparently that wasn't enough for the miracle we all wanted. So I'm not sure there was an amount of faith or prayer that could have swayed God's heart. Whatever he had for Eli must have been accomplished, no matter how much I rail against his death.
I also don't appreciate people using the phrase "God is good" or any variation of that. Because I'm not convinced that he is. I'm just not. Please see above where hundreds of thousands of prayers weren't enough. I mean, what the hell?
On the other side of the coin is the fact that there was NO exit strategy for Eli. He was SO sick. So so so sick. He had been on continuous dialysis, stuck in bed, for months. It was going to be a very long time until he was healthy enough for peritoneal dialysis, and an even longer time until he could get a kidney transplant. And in the meantime we had to keep the adenovirus from killing him, which is tricky with no immune system. Viruses are b!&%#$. Also, in the weeks before he died he was throwing up blood and no one knew why. Plus his immune system was growing so very very slowly. Slower than is typical. If Eli was still alive, barring a divine miracle, he would still be profoundly sick and suffering and in a bed and miserable with a million tubes. And our family would still be separated, which let me tell you was so much harder on each of us than I anticipated. So maybe death was a relief for Eli? I don't feel like that for myself at all, but I recognize that it's a possibility.
I've talked to people who have experienced great losses and it seems this is just something I'm going to have to wrestle with until I'm done wrestling with it. What encourages me currently is Mother Teresa's story. Early in her life she felt very close to God. He spoke to her all the time, she was incredibly happy to give her life in service as a nun. She started her ministry in Calcutta well into her 40s and somewhere along the way she stopped hearing from God. Where she once had experienced a deep relationship, she felt emptiness, cut off. She wasn't sure where God was or who was, and at times if he even existed. She struggled with this for the rest of her life. This is a concept called "the dark night of the soul". The name comes from a mystic in the 17th century who wrote a poem of that name. What encourages me about Mother Teresa is that she struggled deeply with her faith at a time when the world looked at her as the holiest and the sum of goodness. Despite her struggles she never gave up on her faith or on her life's work. She still contributed to the world and had a meaningful life. I don't know if she looked at it that way. It was terribly hard for her. But she brought Love to a place that needed it. I have no idea who is counting, but that counts for something.
Aside from flashbacks and anxiety attacks, one of the things I've been battling in my mind is this idea of getting stuck in my grief. I know I have to walk through it. I know I will never be the same as I was before. But I don't want to get stuck in it and I don't want to be profoundly sad for the rest of my life. (Eli would hate that.) I can relate to Mother Teresa feeling an emptiness and absence where God once was in her life. The bible says God is near to the brokenhearted. I'm not saying he's not, but a nearness to God isn't exactly a common experience of the brokenhearted.
I listened to "Better Days" by the GooGoo Dolls the other day and I really dug it. I know this is the dark part. I know there is no way around it. But all I want is "just a chance that maybe we'll find better days". Are they coming? I don't know. I've seen it go both ways for people.
Is God good? I don't know. Are we even giving him credit and blame for the right things? Does it even matter?


***I have 0% interest in 'answers'. I find questions and wonderings much more realistic.

The Poor Mom's Reese's

I've been struggling a lot recently with flashbacks of times when Eli was especially suffering (there is no shortage of those) and also times when I just made parenting decisions that I now regret (also no shortage there). I could make a joke here about the combination of trauma and mom guilt, but instead I will tell you the truth. It is debilitating. I am having anxiety attacks. One minute I'm sort of normal and the next minute I'm seeing Eli in the PICU bed with the BiPap mask on trying to breathe and I'm sobbing and forcing myself to keep taking breaths through the pain. Sometimes it's almost like my brain gets stuck in a loop where I see or think some terrible memory or thought over and over and over.
I called a counselor, but while I wait for my appointment I have relied on the goodness and understanding of friends. They have been so kind and so wise. They remind me that I believe in truth and the truth is Eli isn't suffering now. He's so happy. He's happier than he's ever been. It is normal for me to feel upset about his suffering, but there is no requirement that I do. One of my friends gave me a homework assignment to think about one happy Eli memory every day, so that I don't believe the lies that tell me all he ever did was suffer. I realized he did have a lot of joy and love in his life. Today I thought about the way he put slices of black olives on his fingers before he ate them, and also how after eating hummus or bean dip he would stick his tongue out of the side of his mouth to lick his lips. Adorable.
Somewhat unrelated, I was also thinking about how I have, on occasion, gotten sucked into a mom forum on the internet. Let me tell you the truth about that. The mom forums (the ones where somebody asks a question about their baby that they should really be asking their pediatrician, and then 80,000 moms respond with their own assumptions and are total jerks, also known as sanctimommies) are a giant waste of time. This is how I know. Of ALL of the things that were wrong with Eli, the best information I ever got is called the Poor Mom's Reese's. Here's how it works: instead of eating a scoop of peanut butter out of the jar, sprinkle a small handful of chocolate chips in the jar and then scoop them out and eat them. Voila! Poor Mom's Reese's. Seeing as how, as genius as the poor mom's reese's is, that is the best information I found, that means there aren't good answers on the internet for taking care of your baby or toddler (or adopted child or teenager, for that matter).
The lesson here is to listen to your gut, to do what you know is best for your kid, because you really do know better than anyone. Don't ask the internet. The internet is good for things like the poor mom's reese's and cat videos.

right-to-die

Last fall there was a ton of news reports about Brittany Maynard, a young woman with terminal brain cancer whose family moved with her to Oregon to support her quest for the right to die. SO MANY WORDS were written in support or defense of her, and in opposition of her, trying to convince her not to take her life.
I do not have a "side" on right to die laws. I do think that regardless of your position (if you have one), it would be eye opening to watch someone suffer for weeks or months and ultimately die. It doesn't go the way you think it's going to go. It frequently doesn't go the way doctors think it's going to go. I'm not just speaking about Eli's final months; people defy medical expectations for better or worse, everyday. I have a theory about that. I believe we know as much about the human body as we do about the universe. Only what we can observe, which isn't much. It's easy to think we know SO MUCH. Modern medicine is fancy and impressive. But it is only good so far as we understand what the problem is and have a way to fix it. There is so much more that we don't understand about the human body in comparison to what we do understand.
Right to die. Right. (Deep breath) I'm glad there were no right to die laws in North Carolina. Of course they are very specific anyway and who knows if we even would have been presented with the decision to humanly end our child's life. Oh wait, except we were.
Some helpful information: We were told to expect Eli's death twice. The second time it went on for days. It was a week of waiting for him to die and praying he wouldn't. When Eli started to do better the doctors were flummoxed, but had renewed hope. When Eli actually did die, no one prepared us for it because no one really knew to expect it. He had beaten the very dismal odds multiple times and he had been doing better, so even though Eli was in a bad way, it just wasn't expected until a couple hours ahead of time.
Okay, so that second time where we took turns laying in the bed with him for a week straight? Multiple times doctors asked us if we wanted to turn the machines off and let nature take its course. Pause. Can I just share that for the past 9 years I thought the hardest decision I would have to make was when it was time to put my DOG down? Now they're asking me to decide if it's time for my KID to go??? (Deep breath) If they turned the machines off, specifically the dialysis machine, Eli would continue to retain more and more water (since he had zero kidney function for the last 3 months), which would eventually affect his breathing and he'd drift off and die, heavily medicated for comfort, of course. In my head I said to the doctors, "That sounds fucking terrible, so you can go jump off a cliff." Out loud I said that we would talk about it. And we did.
When you are deciding whether or not to end a life in a medical situation such as we were, you have to know that you know that you know you are making the right decision. We didn't know that it was the right decision. It didn't seem peaceful or kind, it just seemed fucking terrible for everyone involved. Then again, the current situation was pretty fucking terrible as well. To me, that meant turning off machines wasn't the right decision.
When Eli did die, it was gradual failure of the lungs. He had needed more and more respiratory support, they had turned the settings up higher and higher on the CPAP machine, until they couldn't turn them up anymore. We decided to intubate because again, everyone at least somewhat expected Eli to make it, and really we were buying time for the antibiotics to work on the pneumonia. Once Eli was intubated they had to switch from the ventilator to the oscillator (not a good direction to go), and then they had to keep messing with the settings. Over a period of several hours Eli's vitals continued to decline and they got to the point that they couldn't turn the machine up any higher without blowing a hole in his lungs (which is death, BTW). Eli had plenty of sedation and pain meds during this time and was comfortable. When the doctor finally said there was nothing else they could do and Eli was slipping away, I asked him to give Eli more pain medicine for comfort. If he was going to die, there wasn't going to be any chance that he felt even a twinge of discomfort anymore. He had felt all the pain he would ever feel and was done. At least I could give him that.
Eli's oxygen saturation dropped over a period of time, and once it got below 50% it started affecting his blood pressure, which eventually affected his heart, which gradually stopped beating. How long did it take Eli to die? I don't know, when did he start dying? Umm, maybe a couple hours, I guess.
I hate that Eli died. I hate that we still don't have a real diagnosis and for a lot of his illness and especially the last few months, there was a lot of guessing in his treatment. I fought for his life and his comfort. But if he had to die, I'm glad there was not a damn thing anyone could do about it. I'm glad I didn't turn the machines off and "let nature take its course". I will never wonder if we made the right decisions in his death. I will never wonder, what if we had given him a chance?
There's more to this than just death. I believe that God declares life where sometimes we think no life can be supported. For whatever reason, Eli didn't die the first two times. Even when they completely stopped treating him with his necessary meds and transfusions for several days and told us death was imminent, hours away. We said, "Okay, but he's still talking to us when he wakes up. So we're going to keep holding on. Giving up doesn't feel right." So we kept the machines on. I'm so glad we did.
I may be brought to my knees daily in the grips of grief, but I have no regrets in NOT ending Eli's life when given the choice. God declared life for a time. When the time was over, Eli went peacefully.
Maybe after all this it sounds like I am against right to die laws? No. I can't begin to take a side, because I have been there, more or less. It wasn't right for us in our situation.
I hope you never, ever have to make a decision about a loved one's life.

A guiding star inside my grief

This post is part of my writing course. The prompt was about a guiding star inside your grief- are there people who live their own grief in a way that gives you encouragement, inspiration, or direction?

Yes. I have a guiding star. I have several I can talk to about different aspects of this bullshit that is losing a child. That's the thing about living in a hospital, especially a bone marrow transplant unit. You meet other parents with about the same odds as you of coming out of this thing with their kid, who are just as desperate as you. 

My main guiding star is farthest from her loss. I think that's important. She knows how much it hurts, how impossible it feels to live it. But she also knows that life can be sweet again, someday, in a different way. She is a living version of the hope I have for my future. 

As much as I want to die sometimes, I can see all of the gifts my guiding star has received in her life because she chose to keep living after her loss. So I tell myself I will receive gifts in my life if I keep waking up everyday and leave my heart open to those possibilities. I have a deep understanding that it will not be any time soon. That I have to keep moving, however slow it might be, for a long time before anything resembling joy shows up again. But my guiding star shows me that it's real.

When they thought Eli was going to die, I sent a message to my friend. "I can't do this. It hurts too much." She sent a message back. "Yes, you can. I'm so sorry you have to." They were maybe the kindest words I have ever been given. They were kind because they were true and they were given with the pain of experience. I have since heard her say them to other people facing loss. I have said them to other people. They are a gift each time they are spoken. You can do this. I'm so sorry you have to. 

I told my friend that I didn't want to stop saying Eli's name. That once he was gone, I wouldn't have a reason to say his name anymore and people wouldn't say his name to me. She promised me we would still say his name. And we do. 

I'm exploring how to have a relationship with my son now that he's gone. Currently, it feels strikingly one-sided. But my guiding star has been at times an usher assisting me, and at times a model of continuing to publicly love and honor her son. 

I have several other guiding stars. They each grieve differently, but I take bits and pieces that feel right for me and use them in my grief. 

They help me answer the questions that linger. What do I do now? How do I keep honoring my son? I see what they have done with their questions. Some have gone back to work quickly. Some have taken some time. Most are still finding their way regardless of the immediate decisions they had to make. There are no right answers, but helps to see the array of real life options. 

I'm intensely grateful for my guiding stars. And I'm so sorry they are my guiding stars. 

Trying a little kindness.

This is part of my writing for a virtual writing class. The prompt had to do with showing kindness to yourself in the wake of grief. 


From the time Ty moved in until Eli died (2 weeks shy of 5 years), I did a poor job of taking care of myself. Everyone always needed something from me. And every regular thing is one hundred times harder when you have to do it while also looking after babies and children. The result of that was me doing the least things possible, which was essentially me cutting self care out of my life. (I don't include the year of illness and hospitals. That was pure survival mode. That's all it can be.)
I know, I know, you have to put your own oxygen mask on first. But it appeared I needed less oxygen, so it's fine, right?
It turns out I told a few people in the last few years to be kind to themselves or gentle with themselves as they were grieving, because grieving is hard work. I stand by that statement.
Recently my cousin used my own words against me. So I'm being kind to myself by putting myself first. Sometimes I come home from taking Ty to school and go back to bed because I'm tired. Almost every day I do something active because I know it's what I need, even if I whine internally about it. I make time to write because it's a thing just for me. Mostly I try to listen to myself, and lower my expectations. If there are five things on my to do list and I accomplish one, I tell myself I did great. The best part is, I actually believe me. That NEVER would have happened before grief.
Even when I let people down, I tell myself I did my best. Miraculously I accept that as truth. It is pure grace.
I like grace. It is maybe the best part of grief, which is a weird thing to say. That's like saying the oxygen mask at the hospital is the best part of getting struck by lightning. The whole thing is terrible and I am uncertain if I will survive it. But the grace is soft and it helps me hang on.

Scent memory.

This is from my writing course. The prompt today had to do with smells sparking a memory. 

The last 7 months were full of hospital smells. And dirty hair. Have you ever tried to bathe a flailing kid with a central line? It'll make you take all of your calming deep breaths  and counting backwards and singsong voice just to garner the energy. I just didn't bother more often than not. So I remember the smell of Eli's dirty hair. I want to smell it forever.
The other day I was looking for something under my sink and I found an old bottle of aveeno baby wash. I stared at it for a minute, and then mustered the courage to open the sticky top and take a whiff. It smelled nice, but it didn't smell like Eli. And that was actually better.
Eli had dirty hair because I always ascribed to the theory that letting your kids have a few extra germs was good for their immune system. Except Eli actually didn't have an immune system, so maybe I was just slowly killing him by not washing his hair enough. I didn't, couldn't have known it, but it's still true.
I do remember the smell of his unwashed hair and how long it got in the hospital. I finally couldn't take it anymore and I watched YouTube videos until I thought I could manage a little boys haircut. It wasn't a terrible cut. I touched it up for a couple of days, as I saw pieces sticking out. Until it started falling out from the pre-transplant chemo. Then we buzzed it.
I want to smell Eli, but all of his stuff just smells either clean or like a hospital. There was always bodily fluid getting on his shirts and blankies in the PICU, so we were always rotating both. One being worn or snuggled, one being washed. Now they just smell clean.

this new place

I'm currently participating in an online writing class. I get prompts to write from daily, and I interact with my fellow writers on the given topic. Some days I will post on the blog what I've written. Other days I won't. 


9/2/15 Today's prompt had to do with living in a landscape that has changed so vastly after loss.
______________________________________________________________________________

This place is different. Quiet. The old place was teeming with life. The new place has life, but I have to look to find it.
One of my favorite authors wrote about the spiritual practice of being still. She is not a still person by nature, so she makes herself be still for 20 minutes in the outdoors. She wrote about the strangest thing happening during her stillness, every time. She would think she was just in a regular, boring place. But after a few minutes she would notice some tiny movement, maybe along the crack in the sidewalk or along a leaf. She would see life happening- ants marching, bees buzzing. Life she would have missed while flitting about her daily routine.
Looking for life has become one of my touchstones when I am feeling especially untethered. It's not a spiritual practice for me, it's a survival strategy. When I can't breathe, I try to be still and observe that life still exists around me.
My son is dead. It feels like everything is dead. But I can stop and wait and look and listen. I always see birds flying when I look for life in the sky. If I really wait I'll see a bug crawling through the grass and I wonder where it is going, what it is doing. But I know it is living. It has life. It knows other bugs that are alive. There IS life happening. Even if it is small. Small life still counts as life. Which is good, because sometimes I feel small, or I feel like Eli's life was small.
The trick is not to go looking for life. The trick is to be still and let the life happening around you reveal itself to you. I have been sitting on a bench at night and watched a spider skitter across the pavement in front of me. I have stared at a rabbit, hopping out of the bushes, staring at me, curious. I would not have seen either of these creatures if I was not still, waiting to see the alive around me. Somehow this reins me in, coaxes me back from the edge, helps me breathe.
This new place is not great. It's not the raucous holiness of the raising of small children. It's a barren wasteland. Instead of the insanity of too much, it's the insanity of famine. It's easier to hide in plain sight in this place, and that is a relief at times. It can be deafeningly quiet. The life that is missing from my life leaves me numb while I navigate this new place. Sometimes I wonder if I have to live in this new place forever. I know there's no way back to the old place, but it's as though my brain won't accept that. My same mind that knows the old is completely gone also won't let go of the old frame of "normal".

Happy Birthday, Maxwell!

Today is Maxwell's first birthday! But he's celebrating in heaven and his parents and big sister celebrated here on earth. Ugh! I know. 

Maxwell was Eli's next door neighbor at Duke in BMT (bone marrow transplant unit) and also in PICU. He was born with leukemia and his parents found out when he was one month old. After that Maxwell fought every day of his life. He gifted the world nine extra months to know him and learn from him, because he kept fighting.

For Maxwell's birthday his parents asked friends to do random acts of kindness in his honor, but also to tell his story. I wanted to do something meaningful. I started the day making a small donation in Maxwell's honor to Bryant's team who will be participating in a cancer walk next month. 

I wanted to do more, but today is also the anniversary of when Eli got sick. Or rather, when the dam broke and his condition finally manifested itself. One year ago tonight I was holding a sleeping Eli in an ER triage room, while we waited to be transferred up to Weaver 4 for the first time (of many). Remembering that day without my little man to hold in my arms now sucks just as much as you think it does. So today I went to the beach with a friend. 

But I still thought about Maxwell. 

I have a friend who I knew years before either of us had kids. In the last year she has been dealt an exceptionally crummy hand in life. Last week I thought about bringing her dinner on what I knew would be an intense day for her. But I didn't. I went back to bed. Now that it was Maxwell's birthday and I had been charged with performing an act of kindness I had the perfect opportunity to try again to bless my old friend. 

My beach friend and I went to Costco and bought several meals and a variety of lunch box food and snacks. We came home and made PB&J sandwiches out of 2 loaves of bread and packed dozens of snack baggies with carrot sticks and ranch cups.

 I took a giant box of prepared meals and snacks to my old friend tonight. I told her about Maxwell and his fight. I told her that at Maxwell's funeral his mom said, "Maxwell fought so hard for life because life is worth fighting for." I told her that so often I say things don't matter, or nothing matters, because that's what it feels like right now. But I also told her that was wrong, that SHE matters, and her kids matter, and what she is doing in her life matters. This friend is fierce. She refuses to sink. She absolutely insists on rising from the ashes no matter how long it takes or how hard she has to work (she's doing pretty amazing at it). She is #MaxwellStrong.

Happy birthday in heaven, Maxwell!