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.