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".