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.