Merry Christmas

One year ago today we were supposed to go to New Orleans for an unchristmas trip, just our little family of three. It was our first Christmas since Eli's death. Instead, we woke up to Jerry having a terrible stomach virus and a phone call from my dad alerting us that my grandmother had died unexpectedly.  Merry Friggin' Christmas, right?
Here we are. It's been a year. My uncle died in June. A new nephew joined the family in August. It's our second Christmas without Eli. I have not even started grieving for my grandma or my uncle. But nobody gets away scot-free from grief. I know it's there, waiting until I am able to feel a pain besides the loss of Eli. I'm not exactly looking forward to it, but grief is a part of life because love is a part of life. It is what it is.
A few weeks ago my friend Amy took me toy shopping for Eli. After she had reached out to me and I shared my grief-of-the-season (it's hard to see the "big kid toys" in stores and realize Eli would have been the right age for them, and wondering what he would like, what he would be into), she offered to shop for Eli with me and donate the gifts.
Sometimes you are given a choice to keep things surface level or to dive deep and risk vulnerability. As much as you can bear it, dive deep. It is rich and beautiful and hard and worth it down there in the depths.
Amy and I went shopping on what turned out to be her birthday. That is such a testament to her heart, that she would spend her day loving and giving. It was good and hard, but I had more peace driving home than I have felt all year. Truly. What a gift.
The toys were donated to local church who took them to a rough apartment complex for their Christmas celebration. I wanted to go, but I ended up bowing out. Diving deep was too much that day, too early in the morning. I just didn't have it in me. But I know some little 5 year old boys felt loved and cherished that day. That makes me happy.
While Amy and I were shopping we got to talking. More accurately we got to shopping while talking. ;) We lamented some things as mothers and women do, and somehow we made a plan to go Christmas caroling at a nursing home. Not just that it sounded like a nice idea, but that we both had passion for making it happen. Caroling in a nursing home is something I have wanted to do for several years, but I hadn't ever gotten around to planning it with all the other hubbub that arises in December. With Amy and I working as a team we could make it happen.
This morning, facing my second Christmas without Eli, on the one year anniversary of my grandmother's death,
Amy, myself, a few friends, and all of our kids sang Christmas carols to other people's grandmothers and grandfathers. We were perfectly imperfect. It was beautiful.
I didn't put the dates together when we were planning our caroling. This is the day that worked for the nursing home. It could not have been a more perfect way to remember and honor my grandma, who simply adored Christmas and singing.
I am deeply grateful to Amy for listening, responding, and acting with her heart. I am thankful to our friends who joined us and completed our choir of sorts. Some of the friends don't even celebrate Christmas but were all in at the opportunity to show love to people who may be lonely. That is beautiful.
I don't know what tomorrow and the next day will be like. But I had my Christmas this morning.

The art line (a memory)

I am laying on my left hip next to Eli in his hospital bed. My hip aches from always laying on that side so I can face him. We are in PICU. We have a blue quilt over our heads. There are no covers over our legs. After weeks of use, Eli's arterial line has gone bad in his ankle. It's in an artery and it continuously monitors his blood pressure. We have two choices. The doctor can try to rethread the catheter, which will not hurt but is not guaranteed to work. Or the doctor can place a new art line. For a number of reasons based on Eli's medications and his present health, he can have no pain medicine for a new art line placement. It's not like a regular IV; it has to go into a main artery.
We decide rethreading the catheter in the current art line is the best place to start. But you can cut the tension in the PICU room with a knife. This has to work, but there's a reasonable chance it doesn't. I crawl into bed next to Eli and put the covers over our heads. I tell him that the doctor is not going to hurt him but he is going to adjust the art line. At 4, Eli knows what that is. I tell Eli his job is to not move his legs at all. That the doctor and the nurse and mommy and daddy are trying to keep from doing any pokes on him. And then I create a little world under the covers just for us. The bed is being adjusted higher and higher so it is a nice comfortable height for the doctor to get to work. Every light in the room is on. A small tray of tools and equipment is set down on my legs, so now I don't move a millimeter either. I start singing to Eli and it's just the two of us under the covers. It feels like the bottom half of our bodies are detached from the upper half, where it's just the two of us. At least to me. I sing one song after another so that we have something to focus on besides what is happening outside of the covers. Eli lays perfectly still. He doesn't talk or join me in singing. But he cooperates. He doesn't move. We hear the doctor and the nurse communicating quietly as they work, trying desperately to retain this line. I sing every song that I have ever sung to Eli and I start back at the beginning because it's not over yet. I keep us in this world, calm and far away from what is happening at the other end of Eli's body. I don't care what my voice sounds like or who hears it. This is the most serious task of my life. If we want the best for Eli-and the best is to re-thread this line-then my only choice is to make him feel as safe as he has ever felt, while in this cave of a room hooked up to beeping machines with a doctor working on him.
Eventually I hear the sounds of success: The release of breaths no one knew they were holding, jubilant conversing, and a few chuckles of relief. It may have been five minutes or it may have been five light years. My only awareness of time in the world under the quilt was the amount of songs I sang.
The bed is lowered, the instruments and supplies are picked up and my legs are no longer a table. I slowly pull back the covers and Eli and I reenter into his room in PICU.
It was a nice world while it lasted. We have succeeded in providing the very best for Eli. It could have gone the other way. We could be facing a traumatic fully awake and aware procedure. Tonight we exchange smiles, congratulations, and handshakes. We will revel in this victory, at least until tomorrow.

the human brain: making sense of reality since the beginning of human history

On Friday Tyrell got a concussion during his football game. It was technically a clean hit, but my heart didn't feel that way when my baby went down. You know the law of physics that says, "an object in motion stays in motion until an equal or opposite force acts upon it"? That's pretty much what happened. Ty went down hard. But he got up and trotted off the field. Initially I thought he was okay. But shortly afterward I was summoned to the sideline and the athletic trainer started explaining the concussion tests she put Ty through, which parts he failed, and the protocol going forward. Ty finished the game sitting on the trainer's table with ice on the back of his neck for nausea.
On the way home he started feeling worse and was having sharp pains when he breathed. So we went to the ER to get him looked at. All the X-rays and scans came back perfect. A concussion doesn't show up in a ct scan, but the hospital did verify that Ty had no bleeding or fractures in his skull, and that he had no rib fractures or lung collapse. *Just* a concussion. A traumatic brain injury.
When your brain is injured it requires rest in order to heal. How does one rest a brain? Basically, sleep a lot and lay on the couch without doing anything. No screens- cell phones, tablets, TVs, video games, computers, etc. No reading or schoolwork. (Really!) No physical activity that raises the heart rate at all. Rest, rest, and rest some more. That is HARD for anyone, but especially an active and social teenager.
Tyrell woke up Saturday morning feeling and acting like himself. His chest was bruised, but otherwise he felt fine. He slept a lot of the day. By Sunday he was getting stir crazy. I felt bad that he couldn't watch any football at all. He decided to go fishing with a friend in the neighborhood ponds. I figured fishing was about as mindless of an activity as any. I did send him out with a hat and sunglasses to protect his eyes and brain from sunlight. I likely let him fish too long, but I was grateful that he was doing something he enjoyed and not moping at me that he couldn't have his phone.
On Sunday evening Ty heard me talking to my dad about hurricane Matthew and the imminent effects it would have on Haiti. He asked a couple questions, thought for a minute, and said, "I'm going to fish this week and for every fish I catch I'll donate $1 to help Haiti." What a kid. Then it was my turn to ask questions. I asked him to clarify his plan a bit and if he was interested in letting people know who might want to sponsor him. He agreed and I put it out on social media. So far if he catches 100 fish he'll raise over $850 for hurricane relief in Haiti*.
Stay tuned!
As I think through all of these events I am tempted to connect the concussion to the fishing sponsorships. Ty only went fishing (for the first time in many months) because he got concussed and had no other choices he liked. If he hadn't gone fishing, due to the concussion, he may never have thought about how he can help. The human brain wants so badly to say, "this is why this thing happened", to explain away and reason out reality, apply meaning to the meaningless. Just because our brains are inclined to do that doesn't make it true. Ty didn't get a concussion just so he would go fishing and then have a bright idea to use fishing as a motivation to help people. He got a concussion because he took a hard hit in his football game on Friday.
I will say this until I die: not everything happens for a reason.
There is a better way, though. Instead of attempting to pull reason out of unreasonable circumstances, we have the opportunity and the brain function to respond well when we are faced with hard things. We can fully acknowledge our disappointments and tragedies alike and say, "This will not end me. I will respond with grace and goodness." That's not easy and it doesn't make life's hard realities any less hard. It does make life worthwhile. It does make the world a better place. Whether or not you can tell in the trenches, it's a positive move.
The lessons, the personal changes, and the relationship changes are not the reasons that things happen. They are just our human responses to disappointments and crises.



*If you are moved to sponsor Ty as well, pick whatever formula or method works for you: a dollar a fish, a quarter a fish, a dime a fish, or a flat amount. I'll post on Sunday night with how many fish he caught and where he would like anyone to donate. It's the honor system around here. ;)

Eli's tablet

Shortly before we left for NC, Eli was gifted a nook tablet. I had no idea what a saving grace it would be. He always wanted new sports games on it. Everyday. We watched the Cubs games on it. We played music on it. We watched silly videos on it. When Eli was in PICU and not sedated we would hold it for him and he would play games that just involved tapping the screen. He was so weak it was all he could do. His tablet was always hiding in the hospital bed somewhere.
After Eli died I threw the tablet in a shoulder bag. That particular bag has been sitting in the corner of my room ever since we got home. I've been avoiding it for nearly 14 months now.
When I heard this summer that J.K. Rowling was coming out with three new books in September, ebook format only, I knew I would need to get out the nook. Look at it. Touch it. It's taken me months, and all day today, but I dug it out and plugged it in. I turned it on and there were all of Eli's little games. I could almost hear his little voice, asking for the football kicker game.
This is the part of grief that threatens to take you under. The big stuff is hard too, things like holidays, but there is plenty of warning and prep and strategies. The little stuff- turning on this tablet for the first time, and all the memories flooding back at once- that's the stuff you have to face that hurts the most.
I'm going to survive it. I'm going to figure out how to download some ebooks tonight. I'm going to let J.K. Rowling's words and the wizarding world comfort some small part of my soul.
It just hurts. And I just miss you, baby.

Time and change and "normal" life

School is in full swing. High school football season officially starts tonight. Today is two years since Eli's disease manifested as a bleeding disorder and we landed in the hospital. It's also our friend Maxwell's birthday. He would be 2 years old. He was our neighbor at Duke, both in the bone marrow transplant unit and in the pediatric intensive care unit. He died at 9 months of age.
All of these things trigger my grief in different ways, causing a swirling grief storm inside of me. The weather is changing, which is weird. It's still hot, but there are subtle changes. Does this always happen? Have I just not noticed it? It's gotten much windier. We have two memorial wind chimes on our back porch, one was given to us by Pediatric Cancer Family Foundation when Eli died. The other was delivered at the one year anniversary of Eli's death, from Duke Pediatric BMT Family Support. My bedroom is on the backside of the house, looking over the porch. I always hear Eli's wind chimes the best from my bedroom. It's been a calm summer and I have only heard the wind chimes a few times. But this week I've heard them several times. It's always slightly haunting and bittersweet. I love it, but I hate that it's all I have.
I'm mostly looking forward to Ty's game tonight, but part of me is dreading it. Last year Ty wasn't playing, but we were supposed to go cheer the team on at their first game. It ended up pouring rain so we didn't. However we did go to a postgame hangout at a friend's house and I cried in the bathroom.
There was a period of about six to eight months where I re-entered life after being in a hospital for seven months and losing Eli. It was scary and hard. A year ago now I was deep in it. I'm not all the way there, but I'm much more able to participate in life now.
Two years ago today my nightmare began. Today is Maxwell's birthday, but he's not here for it. Today is just another "new normal" day. Except it's not.

Trying to be Alive

I read this book, A Million Miles In A Thousand Years, this summer and it had an effect on me. It's basically about taking concepts of story and applying them to our lives to create more meaningful stories with our lives. Some of it I can't exactly do in the middle of my grief. Things having to do with greater purpose are just too much. I'm still upside down in an ocean, fighting to find the surface. But memorable moments are mostly within reach.
On our work/road trip/vacation in June Ty and I went whale watching. It was BREATHTAKING. I texted a friend, "It felt like being alive." I can mostly handle memorable moments, or the exciting staccato notes of life. Sometimes memorable moments happen on their own, but a lot of times we plan them.
One such memorable moment was Ty's birthday recently. It was the big 1-6 and I wanted it to be special, but also on a major budget. I hemmed and hawed, but we ended up going to Bob's River Place with friends, which is a privately owned swimming hole on the Suwanee River, way out past the cows and prisons and churches, as one nine-year-old observed. We spent the day there and despite my fear of brain amoebas, flesh eating bacteria, and season-ending injuries the week before football camp, we had a total blast. I got that feeling again, like being alive.
Since I don't have a little guy to take care of I have been challenging myself to actively participate in life. At Bob's that meant going down a water slide, swinging off a rope swing, and jumping off a platform. I screamed my head off, and I even needed to borrow some bravery for the platform (I made Ty do it with me), but I did it.
The platform was terrifying. It was about 25 feet above the water and felt twice as high looking down. The trick was not thinking, just doing. After stalling a couple times and asking Ty to come jump with me, my winning method turned out to be hold a hand, close your eyes, and walk off the edge. Also, scream.
I wonder if that could be a method for life. Hold a hand (community/support), close your eyes, and move forward. Screaming is 100% permissible.
I'm trying to do it. This is a heavy transition time of year, which can make grief and loss more intense. We have several family birthdays, school is starting, football season is starting (football is a big part of our family culture), and we're coming up to the anniversary of when Eli got sick. He should be here for all of it. He should be singing happy birthday to us and offering to blow out candles or open presents, he should be excited for school and meeting new friends and reporting to me all the things that happened in his classroom, he should be watching football in his daddy's lap, yelling when daddy yells and cheering when daddy cheers. We should be remembering together the day he started bleeding, and toasting together with sparkling apple cider that he is cured. But he's not here for any of it.
I'm trying to bear it. We took a leap and I started homeschooling Ty. I'm trying to be a good football mom and just keep moving forward, however long any progress takes. I'm doing much more with our restaurant marketing business, managing pieces of several accounts. The hardest part is caring enough to keep moving. Because truthfully I don't.
But if I want more memorable moments I need to show up for the mundane parts of life, too. Even if I can't make myself care, even if the days are mostly bad. I have to try to show up. Then it's just a matter of grabbing a hand, closing my eyes, and moving forward.
I'm trying. It seems like way more failure than success, but since I am strangely still alive I have to try to actually be alive.

Booby traps

I wish I could convey the shock that comes with the recurrent pangs of pain and grief. It's as though I am going about my day and everything is sort of fine, and then a regular thing happens and it sparks a memory that just hurts too much or a painful desire, "if only".
The other day I was on social media and I saw the chamber of commerce is hosting the annual painting of the paw prints on Bay Street. (Jacksonville=Jaguars=paw prints=paw prints painted on a street leading to the stadium) I somehow never realized this was a community thing, but it is and how cool is it? It's a family friendly event, early on a saturday morning. You just sign up online and meet at parking lot and are assigned to a team to go paint a paw print on the road. Then there's a shindig afterward.
And I just missed Eli so much. If he were here and well we would go paint some paw prints. He would be all about it. And then he would probably ask to drive to his paw print all the time.
But he's not and we won't.

This kind of thing happens all the time. It's what makes it so hard to be alive and participate in life. There are booby traps waiting for me everywhere. I can be wise and avoid difficult situations only to a certain degree. Grief comes for me all the time.
Last night we had the DNC on and they started playing that song "Fight Song". I hate that song. It's not a bad song, it just kills me. It was popular last summer and a number of people sent it to me for Eli. I did like it then. Now it makes me want to punch someone.
It is hard to participate in life when at any moment you feel like you need to evacuate from wherever you are and from whatever you are doing.

Elusive faith

Last fall my mom and I went on a weekend retreat at a camp. It was right around two months after Eli died. I did a lot of things in those early months that probably didn't make the most sense, but I felt crazy and also had been incredibly homesick in NC all those months. I was trying to do or find anything that might make me feel even the slightest bit normal.
The retreat was great. It was a small group of women and it was laid back. No pressure to be or do anything. I am going back this year. That kind of relaxation for your soul does not exist in regular life.
My mom and I went for a walk down to the lake the first evening around dusk. It was about a five minute walk. Towards the end with 200 yards or so left of the trail, straight ahead we saw a deer hop across the path. Except we did not see the entire deer. We were talking and not focused so far ahead. My mom saw movement and recognizing it as a deer, yelled. I looked up to see the hind quarter or so of the deer bounce into the woods.
The rest of the weekend we wanted to see more deer. We took walks at different times of the day and tried to be quiet in the woods. We only ever saw hoof prints in the sandy path.
On Sunday morning we decided it had been a great weekend, but we were done. We were just emotionally exhausted and ready to go. So we skipped out after breakfast. But between packing the car and leaving, we decided to find some deer. We were determined. We walked all over creation. Literally. And everywhere we walked we saw fresh deer tracks. No deer. The tracks crisscrossed the path so much we were absolutely certain we were dealing with a number of deer. And they were fresh! The deer had *JUST* been there. And there. And there. And there, there, and there. We never saw them.
It struck me as we finally gave up and headed home, this is so much like faith. I wanted to see the deer so badly, but all I got was evidence of the deer. The same way we want proof of our faith, but all we get is little bits of evidence that spur us on to keep searching.
My faith is as elusive as the deer that weekend. In the very best moments I get a blurry flash of what faith really is. It's gone almost before I can focus on it. Most of the time I'm looking for it and all I get is little morsels that tell me faith is near, it was just here.
It was just here, it can't be far.

But sometimes the impossible is simply impossible, Alice

Originally written June 3rd. Delayed posting. 

We saw Alice Through the Looking Glass last weekend at the IMAX theater. The real IMAX theater at World Golf Village, not the one they call an IMAX at AMC.
I never would have gone- it's too far away when there is a movie theater down the street, it's not my genre, it's too much $$, and if you give me 30 seconds I can come up with twelve more reasons. It's not actually that much money. But as it turned out I won tickets in a giveaway from Jax Moms Blog. (Thanks, JMB!) And since I couldn't excuse my way out of it in the name of not spending money, and because my counseling homework has been to do different things, we went together. A family outing. It took the pressure off that it wasn't on my dime and that my counselor said I didn't have to enjoy new things, just try something outside of our normal routine. I'm sure it sounds silly, but I truly was freed up to enjoy the evening, since it didn't matter if I did or not.
We had a great time! The real IMAX theater is impressive, it wasn't crowded, plus the movie was in 3D, and it's an incredible movie. It's remarkably well done, you should definitely see it.
The thing about Alice Through the Looking Glass is it's not actually about a trippy wonderland. The same way Harry Potter isn't actually about wizards. Alice is about life and loss and time and love and forgiveness and holding on and letting go. They just use wonderland and its characters to explore the things we struggle with in life. It is powerful art.
(Spoiler alert? I guess? Not really. I don't know. Look, it's disney and some variation of this plot point is in every movie they make, but I'm going to talk about the artistic portrayal of it, not the plot itself.)
There is a scene towards the end of Alice where everything seems ruined. The audio visual sequence is captivating as it gets more and more drawn out, as everything through space and time becomes ruined. It is all encompassing as it builds and builds and builds until you as a viewer feel the hopelessness that there is nothing left untouched by the ruins. Everything, everything that ever was in any reality or dimension has crumbled to rust. And there is no going forward from there. It's just done. Finished. Ruined.
And as I sat there taking it in, I thought, "That looks like what grief feels like." That is not the parallel the creators were drawing at that moment, but it is where loss leaves you. It is hopeless, it is finished, everything that ever was is ruined and nothing more will ever be. I'm not arguing that as a state of reality, just as the feeling of grief.
I am not a visual artist. I know words are insufficient to communicate so much of what we feel (though I may try). I have not had the experience of art being so powerful as I did while watching Alice. Nature being moving and powerful? Yes. The human spirit? Yes. Books? Yes. Visual or audio visual art? No.
You should definitely see Alice Through the Looking Glass. It has so much to say about life.

One year

It's strange that tomorrow is one year since Eli died. So much has happened because time just keeps going. I'm a different person than I was the last time I was with Eli. That hurts. Simple things like buying a new planner (I use a July-June planner), or looking for a picture on my phone and scrolling waaaaay back to the last time Eli was alive are simple things, but they are reminders of how long it's been and how ruthless time is. And they hurt.
I remember sitting at the funeral home and the funeral director asking me if Eli's death was sudden. (He then proceeded to use several "at least statement". What a schmo.) The thing was, I didn't know how to respond to his question. Eli was incredibly sick. His chances of survival were low. But the timing of his death felt quite surprising.
It's strange how our minds warp things over time. I have been thinking for some time recently that Eli's death had been imminent and his transplant was iffy. Only because I'm not in that world anymore. But this month I've been following along daily with the updates I posted last July. Man, Eli had really been making progress. And his transplant was kicking ass. I'm so proud of him. And I'm so sorry we couldn't save him.  
If I have to be alive, which it looks like I do, then part of me is grateful I've made it a year. Even though it sucks to be this far removed from my kid. I would go back to be with him if I could. But I'm glad the early weeks and months of missing him are behind me. They are so violent. They are full of anxiety attacks and muscle spasms and hysteria. Deep grief has a remarkable physical effect on your body. I had an eye twitch for six months. SIX MONTHS! It drove me insane. I would just put my hand over my eye with light pressure and will it to stop. It didn't. It would last for hours every day. Now I have a level anxiety all the time, but it doesn't peak in anxiety attacks anymore. My eyes don't twitch. My sleep is a bit more routine. Being in the world is a bit less exhausting. I am able to do things like run errands and cook dinner sometimes. Not that I do those things all the time, but I couldn't do any of that for awhile.
I read once that after the loss of a loved one the hole you feel doesn't close up, your life just grows larger around it. That has proven to be true. Although life growing larger and encompassing the hole is exceptionally painful. But it's the way of the world. There are not too many other choices, and none of them are good.
I don't want to face another year, or ten more, or fifty more. But I'll do it. I so want my life growing larger to be a gentle experience, but I know it won't be.

suffering and privilege

On suffering

This is going to be wildly unpopular. Usually I would express this to a close friend, but I feel at times that just makes both of us more miserable and heaven forbid anyone catch us being pessimistic. That's the ultimate sin, if you haven't heard. 

So I guess I'll just be publicly pessimistic. 

I saw this message on an Evans Syndrome group I'm in from a young woman from Venezuela. Evans Syndrome is a rare autoimmune disease where the body creates antibodies that attack red blood cells, white blood cells, and/or platelets. It is not well understood and can be difficult to treat (please see: Eli's entire physical demise). This message was posted in Spanish and automatically translated to English, so it is not perfect. 

"My husband takes 7 months dealing with this disease. Its values are going up and down. Looks like a roulette wheel that we don't know where you are going to stop. We live in Venezuela and we are in economic crisis. Political and social. You can't get meds. Now he's taking prednisone but we now have very few and in the whole country is not achieved. We are in the hand of God. All his words we provide guidance because we still don't understand this disease. A thousand thanks"

I watched a little boy die last week the same way Eli did, in the same place Eli did, from the distance of social media. 

A boy we met at Duke, who had a painfully long and bumpy journey through bone marrow transplant, had two seizures today very unexpectedly. He's back in the duke bmt unit tonight because he needs very specific and specialized care based on everything his body has already been through. 

And this woman is desperate for medical care she has no access to for her husband in the middle of chaos and unrest. 

There is no safety net. There is no plan or exit strategy. This is just the unfairness and suffering of life. This is why I can't pray and why I think healing is a response to medical care not supernatural intervention. This is why I think your #blessed life is mostly just your privilege to be born in a stable and developed country. Shit, I'm so privileged I took every opportunity to ruin my life in the pursuit of saving my son's life. I mean that sincerely. I had the opportunity to disrupt my family, quit my job, lose my certification, financially ruin my family, and drive myself to some level of insanity. I made most of those choices because I had the opportunity to do so. I'd do it all again. But this woman in Venezuela does not have any privilege to mortgage her life for better medical care for her husband. 

I cannot stand manufactured problems. I am also paralyzed in awareness of suffering and lack of reprieve from it. 

I'm less angry at God and more frustrated with people who believe God actually does anything. That's probably not fair. Neither is the real and endless suffering that people are enduring out of lack of privilege. 

Healing and not healing and being on fire

Is God in the healing business? People say this, but I'm just not sure. I don't know if you can watch the number of kids I have watched suffer and die and still believe that declaring healing in the name of Jesus is a real thing that has any bearing on reality at all. Maybe you can. I cannot. 

Praying seems a lot like wishing. Wishes aren't in the habit of coming true. 

I think rather than the business of healing, God might be in the business of loving. I'm not completely sold on this either, but it certainly seems more likely. I saw a quote from Bob Goff today that said, "sometimes instead of an answer God sends us a friend." That's a pretty accurate version of the life I got. I will give Bob the benefit of the doubt since he said sometimes. Some people get both-the answer and the friend. Some people probably get neither. That's freaking terrible. 

I told a friend today who also has a dead kid that this is the absolute worst club in the whole entire world, made up of the best people in the whole entire world. It's hard to live in a world where such deep, deep sorrow and such utter beauty coexist. It feels like calmly watching the most breathtaking sunset while being on fire. How is everyone walking around like business as usual? And how am I supposed to? I mean, the sunset was truly beautiful, but I am on fire here. How am I even still alive? And will I never not be on fire or will this consume me? 

Please refrain from telling me I will not be consumed on the basis that you'd rather I not be. It could go either way at this point. I just doubled the amount of counseling I'm receiving on my counselor's observation that the current schedule is not cutting the mustard. History is chock full of people who were ultimately consumed by their loss. Mary Todd Lincoln and Horatio Spafford (yep, the guy that wrote "It Is Well With My Soul") for starters. (Spafford wrote It Is Well while he was in shock. Shock comes first and says, "It Will Be Okay! We will survive this! It's not so bad." Grief comes later, takes up residence, and says, "Um no, it's bad. It Will Definitely Not Be Okay. You Are Not Okay. You Will Not Be Okay." And then you just walk around on fire. Spafford's shining moment did not last and he went a little crazy later. This should probably be an entirely separate post.) 

If you are a person who needs healing in some way I truly hope you are met with healing. Be it science, or a miracle, or a miracle of science. Any are entirely possible. But if you don't experience the healing you are looking for, I hope you have or are given a friend. It helps with the being on fire. 

Mother's Day

I'm in Durham. And I wish I had brought my laptop. But here I am typing on my phone.
Tomorrow is the Rainbow of Heroes walk honoring past and present Duke Pediatric Bone Marrow Transplant patients, and raising money for the Duke PBMT Family Support Program. It's always the first Saturday in May. So basically once every seven years it happens on Mother's Day weekend, like it is this year. And really, I can't think of a better way to spend Mother's Day weekend than honoring the son who isn't here to kiss my cheek and put his little arms around my neck.
I hate this. But I love him more. I have had the opportunity to say his name and hear his name spoken more times today than I have maybe in this entire year. What a gift.
It is entirely possible that I'll feel differently in the future, but the chance to talk about Eli and see people that knew him, even if only when he was sick, sounds like the sweetest Mother's Day gift available to me.

Driving into Durham, it truly felt like I was going to the hospital to see Eli. As if I could head to the fifth floor and there he would be, exactly as I left him, asking me to tuck his feet in and snuggle him. If only. It was completely surreal.
Being in Durham is complicated because I simultaneously feel a little at home- there's the chick-fil-a where my car broke down, there's the craft store where I bought yarn, there's the baseball stadium where we were going to go when Eli got better, and here is the complete lack of a Walmart or target within a close proximity to the hospital- and I also hate this place so much.
Tomorrow is the big day, the big walk. I haven't seen any of these people since last July. But they cared about Eli, and about me, and about our family. So I don't care how much I cry or even if jealousy attempts to rear its ugly head when I see the kids who are doing well. They were all my home away from home, my support system when I was so far from my community. They will always hold Eli precious in their hearts and I will always hold them precious in my heart. The doctors, nurses, support staff, BMT families, these are people I will never let go. We have witnessed the most terrible things and soared on the most promising of hopes. We are both better and more broken for knowing each other.

Day 366

Today is one year since Eli's transplant. It would be day 366.

I just keep thinking about last year. How we were so damn hopeful. It felt like we had been treading water for so long and FINALLY we were doing something proactive. Something that could/would heal my baby.

It was our only hope. Of course we were hopeful.

Bone marrow transplants typically have a 90%-91% success rate. Eli's bone marrow doctor told us he thought there was somewhere between 50%-80% chance it would work. Eli' immunologist thought it was in the ballpark of 60%-70%. But a bone marrow transplant not working could mean death or it could mean the cells fail to grow and another transplant is needed. A second transplant is always more risky.

The day after Eli's transplant, Jerry and I went out to eat. I think I was eating mussels, but it may have been oysters. I took a bite and my molar came down on something hard. I was temporarily horrified. I fished the hard thing out of my mouth and it was a pearl. A true pearl that had formed in my mollusk from a grain of sand under immense pressure. And it felt significant. It felt meaningful. It felt rare. So I kept it.
I've had my pearl in a baggie in my purse for nearly a year. This week I received a silver charm imprinted with Eli's fingerprint, which I had ordered a couple of months ago. The Duke BMT Family Support Program provides one fingerprint charm for every child that goes through bone marrow transplant. You can order more through them as they receive a reduced rate through the company they use. We were finally able to get Eli's fingerprint on a piece of cardstock when he died. He hated feeling messy so we kept putting it off. I finally ordered my charm of his fingerprint in February. When it came I knew I needed to put it in a chain with my pearl. I now have a charm of Eli's condensed ashes (about the size of a pencil eraser), a charm of his fingerprint (about the size of a dime), and my pearl in a pearl cage, all on a chain. And I love it.
Just because what I hoped for didn't come to be doesn't mean my hope was unfounded, and it doesn't make my pearl meaningless. Of course we had hope. We had hope so powerful you could practically touch it. It felt contagious. Even though it hurts to remember that hope now, it was right and true at the time. And even though I thought my pearl symbolized the struggle of Eli's health and moving toward a beautiful life with him, I'm glad I kept it. It doesn't symbolize any particular struggle or hardship for me anymore. It symbolizes a moment. A particularly hopeful moment. That hope is good and hope exists, even if I don't have any of my own.

We're going to the Suns game shortly in Eli's honor. I have mixed feelings about it. It will probably be a lot of socializing, which is hard, but I knowingly brought that on myself. I know a number of people will be there and it is so kind of them to give their Sunday afternoon in a gesture of love. We have the best people.
I am going to eat french fries with loads of ketchup and salt and that is going to be amazing.

Women's conference

This is a difficult story for me to communicate well because it is deeply troubling and emotional. 

Shortly after Eli died, within 2 months, I went to a women's conference taking place in my city. Several of my friends were going and had gone in the past. Some of these women had been mentors to me in the past half dozen years. They spoke highly of this conference and how much truth they always found there and how it was always a powerful spiritual experience. I was trying so hard to find "normalcy" after being separated from my family and community and support system and everything familiar to watch my kid suffer and die over seven months. So I went to the conference.
There was a well known male christian author and speaker as the keynote speaker. This was not exciting to me at a women's conference, because why was a dude there? I would have preferred to hear from a woman. But I figured the folks that put the conference on who are well respected knew something I didn't or just felt like this guy was the right fit. Fine, no biggie, I can get over myself (sometimes).
One evening of the conference this man was giving a talk and I was taking notes here and there. My perspective was he was dancing a little too close to the prosperity gospel, but again, I was with people I trusted. He never went full prosperity gospel so I pressed on in giving the whole thing a chance. Then he said something that made me freeze. My breath caught, my body froze, and a chill went down my spine. He said God only takes something away when He has something greater for us.
What? Hundreds of thousands of people had just prayed for my sick baby to be healed and God did not answer our pleadings. My baby died. Are you saying God took away my baby so that He could give me something more?
There are so very many reasons this is a crock of shit, I could fill an encyclopedia with them. Here are just a few: this is not in the bible; in what we know of the nature of God, God doesn't seem terribly linear, but this is a completely linear statement; what exactly is it that is so much greater that God will grant me now that I have buried my child? What has God granted other bereaved parents that is so much better than our kid we used to have?; and on and on. One thing that happens nearly across the board for bereaved parents is we use child loss as a sieve to sort out truth. If something is really true, it will be true in my situation of having a dead kid. If it doesn't stand up to child loss it's just not true. Spoiler: the vast majority of things people say and believe cannot be true.
Back to the conference. I didn't storm out, I didn't have a panic attack, I didn't stand up and start screaming at the guy. I waited until the end of his talk, which closed out the evening, and approached him. I wanted to give him a chance to explain himself. I wanted to hold up his statement to child loss and I wanted him to say, "No, that's not what I was saying. You misunderstood. It's like this...." I really, really wanted him to say that. I half expected he would.
I waited for several other women to speak with him and then he looked at me and I started crying. (I hate crying in front of people. I hated that I was crying, but I could do nothing about it.) I told him that my 4-year-old son had been very sick and in the hospital and had suffered greatly and ultimately died, and that what he said, that God only takes things away when God has something greater to give, doesn't add up for me. I hope you are picturing me FOR ONCE not being self-righteous, not being sassy, but being open and honest, asking instead of trying to prove something, laying it all out. Because this famous christian speaker/author looked at me in the face and said, "Perhaps God has another son out there for you, a son who doesn't have a family." It immediately became clear to me that he had no idea what he was talking about. None. Because I replied, "Oh, well, I already have a son who came to me that way, but thanks anyway." And I left.
WHAT IN THE ACTUAL FUCK. One child does not, will not, cannot replace another. Ever. What does it say about God if you believe that God took my son away so I'd adopt a child? If you think that, please don't adopt. Ever. Children who are adopted do not need that type of love and care. They need true, unconditional love. Also, if you are one that thinks that God lets kids die so their parent will adopt a "less fortunate" child, you should stop talking to people, especially with a microphone in front of your face, and also stop writing books. That is not a god that anyone wants to know or believe in. Who the hell says that to a person who is baring their soul about their dead child? What is wrong with that person?
I did not go to any other sessions this man was at, but I did go to the closing session, where a well known and respected woman who had basically developed the conference was speaking. She said she felt the Lord moving in her to address some things, but the cynic in me says she had to do some cleaning up after the keynote crapped out of his mouth. She started off by going off topic and talking about suffering and how God doesn't cause our suffering, and God doesn't give us suffering in order to teach us. That's not how it works. And I appreciated the hell out of her for saying that. She said some other things that seemed true enough and stood up to the sieve of child loss.
So that's my story. I'm not going back next year.

Some notes:
-In hindsight, that was bad timing to go to a women's conference. Two months is nothing. But my life was so weird after coming home, I could hardly feel gravity for awhile.
-I still love and treasure the women I went to the conference with. Just because it turned out bad for me doesn't mean they had anything to do with it.
-I push back against using the pronoun "he" in talking about God. God is neither male nor female, but using He gives us a picture of a wise grandpa or some such character, which is not God. I try to only use the word god for God when speaking for myself, and it can be repetitive. Sorry not sorry. I generally only use "He" when that is what someone else has said.

It doesn't really help

My grief counselor just came back from maternity leave, so we have been catching up on how things have been going since I last saw her in January. When I look at the last three months I can list all of the things I've been doing and working on for my health and my mental health. I started running (...again) and have been training for a 5k. I started weight watchers and it kind of makes me crazy, and I haven't exactly stuck to tracking every single thing I eat, but I have been eating really healthy, cutting sugar, drinking copious amounts of water. Progress is slow and steady. On my non-training days I either do a workout video or go for a hike. I've been getting outside. I've gone to the doctor and the dentist because it's been years... And I've been doing the things the doctor and dentist told me to do. For all of the celebrations that have come along I've done something good for someone (valentines for kids in the hospital, party for refugee kids for Eli's birthday). I have gone to a few social events. I see my friends. When I'm able to focus I read or crochet. I let myself rest a lot (and try not to feel guilty).

And none of it helps.

Sometimes I have a good day. Sometimes there are weeks and weeks where I can hardly get out of bed. There doesn't seem to be any rhyme or reason to any of it.

Sure, there are certain days that are just going to be hard no matter what. Birthdays, holidays, medical anniversaries, etc. But I've been down for the count since about mid-March. And today is the first day I'm not finding my way back to my bed. Yet.

My counselor told me that she's not surprised nothing is helping. That it's good for me to be doing these things, all the same. But there is no fix. And there never will be.

If you need me I'll probably be laying in bed, convincing myself over a two-hour period to go for a 30-minute run.

Getting screwed

One thing that I continue to be tormented by is this idea that our decisions in Eli's treatment caused his suffering and death.
I can logically say we did not have a choice. We went to the very best doctors, we tried with little to no success to keep Eli as stable as possible, he certainly would have died without a bone marrow transplant, it was our only option. These things are all true, I think. But the medical treatment was brutal, inhuman, suffering. And I watched it. And I signed release after release, consenting to more, more, more interventions. So it feels like I did it to him. And he didn't deserve it, any of it.
But I am also able to recognize that there was nothing else we could have done. We were screwed, he was screwed, from the moment he was born. Florida started screening for immune deficiencies (T-cell related deficiencies) 17 months after Eli was born. Immune deficiencies are rare and difficult to diagnose outside of newborn screening, and even now Eli's has yet to be discovered. Even after all his treatment, even after $22,000 in genetic testing, we still don't know exactly what was wrong with his immune system. It's not understand and so there isn't a name for it. We just don't know. His DNA was supposed to have been sent to a researcher doing indepth immune studies on a specific gene, but I am not waiting for answers that will not come.
Yes, he had Evan's Syndrome. Yes, his body created antibodies that attacked his red blood cells, white blood cells, and platelets. Yes, it was severe and not well controlled and what led him to bone marrow transplant. But this is an autoimmune disease which in Eli's case manifested as a result of a malfunctioning or non-functioning immune system. The malfunctioning/non-functioning immune system could have been identified at birth. But not until September 2012 when Florida expanded newborn screenings to include immunodeficiencies. Too late for Eli, too late for us.
We have friends whose child was born one month prior to the implementation of immunodeficiency newborn screening in Florida. Their child is dead now. One month made the difference. One month of the governor (Rick Scott) playing political games. Really. It cost their family their child's life.
How do you live with the knowledge that no matter what you did, you were screwed from the beginning? That your child would likely die, you just didn't know it? That your child's best chance was a coin flip and it necessitated some of the worst suffering? That you agreed to put your child through all of that?
If I figure it out I'll let you know.

Spirit of fear

This is dedicated to a sweet friend. She knows who she is. This post is a result of lengthy conversations we have had on this subject. 

When death comes for a person, your person, your person you cannot live without, it changes everything. Everything. Who you are at your core is not who you were. It takes time to figure out this new person you are, and I am still in the middle of that unpleasant exploration.
One aspect of surviving a loss that the vast majority grievers experience is this awareness of the reality of death. It doesn't just happen to other people. It happens to you. It happened to you once and now you know how easily it could happen to you again. It's a hyperawareness that does not reflect reality, but does reflect the reality inside a griever's brain. In Harry Potter and the Deathly Hallows, Harry asks Dumbledore, "Is this real? Or has this been happening inside my head?" Dumbledore replies, "Of course it is happening inside your head, Harry, but why on earth should that mean that is is not real?" In the book, and in life, this is meant to be a reassuring statement of otherwordly experiences. But it's also true in grief. What is happening in my head and my friend's head in the swirling rapids of grief is very real. It is also very terrifying. It can lead to the dreaded "spirit of fear". (Please read that in a sarcasm font.)
If you have spent more than ten minutes with a group of American Christians, you will be familiar with the phrase "spirit of fear". A spirit of fear is when you have fears about certain things or many things, and it is generally believed that you are just holding onto that fear for no good reason and not "giving it to God". My real and only beef with the "spirit of fear" is that it is viewed and judged as one of the worst sins, something the person in question has invented and refuses to let go of.
So my friend has a spirit of fear, so I have a spirit of fear, so freaking what? Some people have a spirit of lust or greed. Some people have a spirit of anger. Some people have a spirit deceit. But heaven forbid anyone have a spirit of fear, that must mean they aren't a true believer. Who decided that a spirit of fear is the absolute worst attribute?
What is someone supposed to do about a spirit of fear anyway? My friend prays about it. And then she prays about it again. And then she prays about it again. But I guess she must not be praying right or not really believing she can be healed from her fear, otherwise that would have happened by now. (Again, that last sentence was sarcasm.) These are the things she is told.
You know, I've seen about 85,000 times on the internet that in the bible it says, "Do not be afraid" 365 times, once for each day of the year. So that must mean that we're really not supposed to be afraid (sarcasm). I have not checked to see if this is accurate and I care 0% how many times it says to not be afraid in the bible. I mostly find it irrelevant because I suspect in the original Greek/Hebrew/Aramaic texts it is likely a slightly different number due to the translations, and translations of translations, etc. But since it tells us or specifically a person in the bible to not be afraid or to have no fear so many times, I actually think that speaks to how human it is to have fear. To how real fear is. If God's gotta say it that many times, it must be pretty common to be afraid. It must be a human reaction to trauma and life experiences.
And what do you know? All these thousands of years later we're still just humans having human experiences. We still experience the weird, the horrifying, and the unknown. And we still react with fear. And God still tells us to not be afraid. And for some people it's still a struggle. I suspect it is for way more folks than will admit it.

I listened to a pastor speak once and even though she had been through some pretty rough stuff, she said that her faith was a gift from God, that she doesn't struggle with belief. I found this to be a beautiful acknowledgment of our differing spiritual experiences as humans. She did not claim that she had a great faith because she's a great believer or she just has this whole Christianity thing figured out. She said it was a gift she had been given. It makes me think of my friend who has the [dreaded] spirit of fear. She has not been gifted with peace in faith. It's a struggle. And God love her, she keeps wrestling. But she has been gifted with compassion, love, justice, caretaking, perseverance, and a great sense of humor to name a few of her gifts. I wish instead of directly or indirectly calling her out for her "spirit of fear", people would be inspired that she's not giving up, that she has so many gifts the world needs and she offers them to her corner of the world everyday.

Sunday check in/upcoming E(li)vents

I just wanted to lay out the plans and ideas I intend to make happen over the next couple of months.

-Eli shirts are available to order for ONE MORE DAY at www.booster.com/love4eli

 -Eli's 5th birthday is coming up, which is wonderful and terrible. I am (you are) throwing a party for local kids who are immigrants and former refugees. These are kids who don't often get the opportunity to let loose and just be kids. So we're having the party we'd have for Eli....except the party is on steroids and it's for kids who are still here and who deserve a chance to party. We are expecting over 100 kids. THANK YOU to everyone who has donated food and supplies! And special thanks to www.bouncearoundjax.com for donating bounce houses, slides, a trackless train, and all manner of fun!

-Eli's actual birthday is the 22nd. I'm hoping I'm up to making chocolate cupcakes that day. Eli's favorite. I"m dreading the actual day. The anticipation is probably worse than the actual day will be. I guess we'll find out.

-I would like to have an informal Eli day at a Jacksonville Suns baseball game in April. I'll just put it out there on facebook and the blog and if you want to come, please buy a ticket, wear an eli shirt if you have one, or wear green. Ideally I'm thinking a weekend in mid-April. The schedule is out, but tickets aren't available yet for the season so I'm kind of waiting on that......well, and to get through Eli's birthday and spring break.

-I'm looking to do a bone marrow registration drive this summer, hopefully in July. Another opportunity to wear Eli shirts! There are some things to work out, but I think we can make it happen. Again, gotta get through March before I can start organizing.

So those are the Eli things on the horizon. Thank you so much for sticking with me through this marathon of January-July. I'm constantly aware of what was happening a year ago and it pretty much sucked for these seven months, and then it sucked after those seven months ended. But somehow time marches on and here we are. We do the best we can. Sometimes the best we can is a huge party for some deserving kids. Sometimes the best we can is getting out of bed before it's time for school pick up in the afternoon.

I mentioned once before that Hospice offers grief counseling and support free of charge and how helpful it has been for our family. Our hospice here does grief retreats for kids ages 7-17 twice a year. We made Ty go, which is exactly how all parents/guardians of campers get their kids to go, haha. He was fine, but it was hard for me to leave him there to be vulnerable with strangers. When we picked him up at the close of the weekend, all the kids and teenagers were acting like they had known one another forever, they were smiling and joking. It was incredible. I cried all morning, feeling thankful the weekend had gone so well, proud of my big kid, and tender for all the losses that brought so many kids to grief camp.
The professional grief counselors that run the weekend know exactly what they are doing. The campers get a chance to feel a bit normal with peers who can understand their grief. I am beyond grateful to all those who support Hospice financially, so these types of events can be offered for kids who really need it.

Thanks for checking in!

The Other Side of the Miracle

One of the sanity-savers we employ in Grief Club is humor. Well, humor....morbid death jokes...potayto, potahto. It's called coping skills. But we often recognize and crudely acknowledge a great divide between the miracle-havers and the non-miracle-havers. We're the non-miracle-havers. We're death club. They, everyone not in death club, are miracle club. It's easy to spot who is in what camp as you interact with folks. Generally speaking, anyone who has not yet experienced death nor a miracle is in miracle club. I mean, isn't that the one you'd pick if you had a choice?
It's easy to say those people over there got exactly what they wanted and we're over here drowning in our sorrows, ignored by society. That isn't reality. The things that are dubbed "miracles" are often just the science working the way the medical trials said they would, the way the doctor hoped it would 30% or 50% or 90% of the time. The truth is, the "miracle" often leaves families nearly as shattered as death could have. I know because I know "miracle" families.
It's easy to think if Eli had just gotten past pneumonia he would be here now. But he had so much working against him. IF he hadn't died that Sunday in July and IF his new immune system kept growing steadily all these months and IF he didn't ever develop Graft Versus Host Disease while his immune system grew and IF the antiviral drug kept the adenovirus at bay for close to a year until he developed T cells and IF he got strong enough to withstand peritoneal dialysis and IF we were able to keep a handle on his steroid-induced diabetes and IF he started tolerating enough food in his stomach to be nourished and IF a million other things went exactly right and NONE of the bad options went too bad...we'd still be in Durham, North Carolina now, more than seven months later, waiting on a kidney transplant. Over a year since we first drove up, with 16 hour notice to pack for an unforseeable amount of time in a season we don't even have in Florida. That's a long time to have a wait-and-see plan.
Maybe you were hoping for the miracle for Eli's kidneys? Me too. But it turns out his kidneys shut down due to the toxicity of the chemo that prepped him for transplant, and then when his adenovirus counts were climbing over the summer the doctors switched him from a relatively safe, trial oral antiviral drug, to a highly nephrotoxic antiviral IV drug. Nephrotoxic=toxic to kidneys=kidney killer. So if his kidneys weren't already shot, they would be due to the drug change, which Eli needed in order to not die from adenovirus. The week or two before he died his doctors were already talking kidney transplant sometime next year. This wasn't their first rodeo. They've had a number of patients need kidney transplants after months of recovering from bone marrow transplant.
My point is, kids like Eli don't just wake up healed one day because someone prayed and believed for a miracle. Or even if hundreds of thousands of people did.
Sometimes kids that sick do get their miracle and do get better. But here is what it looks like: months and months (7, 10, 12, more?) isolated at home. Parents trying to work because they are already financially ruined from their child's illness, but having to work at different times so one is always home with their child, who could die from a common cold. Being absolutely insane about sibling germs, spouse germs, pizza delivery germs, bacteria from food that has been sitting out longer than 30 minutes, bacteria from the grocery bags which touched the germy grocery cart before they got home, basically every germ ever because they all have the capacity to kill your child. Not being able to run out to the store to pick up milk, eggs, whatever. 15-20 oral medications each day, many taken 2-3 times per day. Waking up in the middle of the night to give more of those meds. Never sleeping more than a few hours at a time. Feeding your child through a feeding tube. Changing the dressing on their central line (this is a medical procedure done by nurses in a hospital, but many times parents are trained as to avoid getting home health care involved). Taking your child to daily and weekly clinic appointments, physical therapy, occupational therapy, speech therapy, The constant struggle of trying to get your child to eat because their health actually does depend on it. Frequent ER visits for anytime something is a little out of whack with your kid. And a million other things that I am forgetting. All the while, knowing it could all come crashing down at any moment with any less than ideal blood test.
Does that sound like living the miracle life? You get to keep your kid, for the time being, but you get to lose your mind, your friends, possibly your marriage, some family members, any opportunity to take care of yourself, often your faith community, your financial stability, any kind of stability.
Would I choose that if I could keep Eli? In a heartbeat.
The parents that are in it, that KNOW how hard it is, they would choose it over death, too. Every single time.
It gets better for some kids after a year or two. For others, they have permanent damage. It will always be taxing to care for them.
While it's tempting and easy to roll our eyes at the preachy miracle-clubbers, the true miracle club members understand what it means to live the miracle life. It isn't rainbows and hallelujahs. It's needing help and not having anyone to ask. It's survivor's guilt. It's watching and praying as child after child dies, the ones your child played with in the hospital, whose parents you had coffee and cried with on your own worst days. It's being expected to be grateful all the time when you're mostly just exhausted and scared. It's headaches, it's nightmares, it's waking up to jaw pain from grinding your teeth due to stress. It's living in the ruins of your former life. This is the other side of the miracle.

Valentines

I loved Valentine's Day with my kids. On Ty's first Valentine's Day with us I microwaved frozen pancakes and used a cookie cutter to cut them into heart shapes (it was a weekday. Also, a life tip: have realistic expectations). Every year since then I have taped 14 construction paper hearts on his bedroom door with things I love about him written on them. The only year that Eli went to preschool around Valentine's Day I made freaking adorable valentines with swedish fish candy that said, "I'm glad we're in the same school." Gah! So adorable! 

Like everyone, I have my strengths and weaknesses. But as a mom I enjoyed looking for simple ways to create extra magic. A big part of that motivation has been trying to somehow make up for the years before Ty was with us. I wish I could say that I'm still making magic for him, but so far I'm not. He deserves better than this. 

This year I wanted to do something for Valentine's Day to spread some love. I managed to be organized enough that other people could get involved with a little Valentine's project and just like at Christmas with the food baskets, they blew me away. We're making 100 adorable Pinterest-y valentines for kids in the hospital and 40 for parents. And I'm so glad to be able to do it. I'm thankful for people who bought supplies and people who will show up to assemble the valentines. I'm thankful for my friend who works at the hospital and is able to distribute them. I'm thankful that all this love I have has somewhere to go. I'm thankful that come Friday, the unofficial school valentine's celebration day, some kids in the hospital will know they are remembered and loved.
But I just wish I was making my own valentines for my own preschooler. 

Tension

I haven't written much recently because I was told that I make people uncomfortable. And while I already knew that my presence makes some people uncomfortable, and that sometimes the things I write can make some people uncomfortable, it is another thing altogether to be told that.
A friend told me recently that whoever you are before your grief is who you are in your grief, just more so. I have never been meek, so my grief response is not meekness. I'm passionate and opinionated, so now I seem to have acquired an emotional megaphone. haha...oh geez.
I sat down to write today after I received a couple of nudges from people who had no idea I was feeling like I was supposed to be more quiet about my grief. If that was you, thank you.

Recently I was talking with a friend in the dead kid club who was struggling with guilt. Here's the truth. Nearly all of us struggle with guilt. Almost every mom of a dead kid I know lives with this tension of knowing she did her very best while simultaneously feeling like she could have loved more and tried harder. Here is what I said to my friend:

She is gone, but she is so happy now. She has nothing but love for you. She doesn't believe any of the coulds or shoulds or woulds that hold you hostage. Her suffering doesn't matter to her anymore because it is gone and she will never experience it again.
I think as mothers one of the hardest parts of this shitshow is the images of our kids' suffering seared into our brains. It doesn't go away. It torments us. But we're the only ones it affects anymore. No one else is plagued by memories of the specific suffering we witnessed or absorbed. And it isn't affecting our children anymore. They have been completely released from suffering. So what do we do with it? What is it doing hanging around? Mostly I think it harms us and it is good to tell it to leave. I don't know if it will ever totally leave us, but I think we can hope for a loosened grip.
My friend has this mantra, "fear is a liar". I think anxiety is, too. When it gets bad I yell at it. I tell it it's a liar. And I tell it the truth. That I was a good mom and I took care of my kid and I did my very best with the information I had. You did all those things, too. We just didn't have all the information we needed when it would have been needed to change the trajectory we couldn't see."

I wish I could adequately explain the memories of sheer suffering that regularly play in mind's eye. The things that Eli had to bear that I witnessed. It is crippling. And most moms of dead kids share this experience. We know we did everything we could. But it doesn't feel like it.

To the doctors

I went to a service at Christmas for those who were struggling with the season- due to loss, illness, what have you. There was a time of sharing and a doctor who worked in trauma spoke about the uptick he saw in suicides around the holidays every year. He talked about how grievous it is to him personally, to see a patient brought in by rescue, only for it to be too late. He continued that having to tell the family and witness their pain was especially hard. And it felt worse to him to have to do that during the holiday season.
I wanted to talk to him before he left that night, but I missed him after the service. What I would have told him is that it matters that it hurts. It matters to the family that you feel pain in the loss of a life. Not pity for their loss, but pain for the loss to humanity of this one life.
I have spent much time in hospitals, interacting with medical professionals. I am sure they are generally taught not to show emotion. I am also sure that for most people in that environment, you feel you have to operate a bit disconnected as a sort of self-preservation tactic. And as someone who has seen many fellow patients die, I get that it's hard to keep feeling and weathering death. But it's also noble.
Death in a hospital is ugly. They tape a handwritten sign with the family's name on a door of a cramped multi-use conference room. You hate that sign. You want to rip it down, as if that would change anything. Someone comes and discusses autopsy with you. Your head is spinning and you aren't sure what the right decision is for any question they ask you. I have a friend who says planning a funeral is exactly like planning a wedding, but the worst wedding ever. It starts with all those questions and decisions at the hospital.
Of all of my friends who have lost a loved one in a hospital, do you know what everyone says about their experience? There was a doctor who shed a tear, or whose face betrayed their pain briefly, and the family saw that their hurt was shared. And it comforted them. For us, it was the morning after Eli died. We were still at the hospital, and many doctors were coming in Monday morning after a couple days away. One doctor ran to see us as we were leaving. He had just heard Eli had died and he was surprised. After everything Eli had been through, surprise seemed to be the common reaction among his medical team. Another doctor was walking into PICU as we were heading out for the last time. He saw us and for a moment his face crumbled. Then he hugged me. I can still see his face breaking in my head. And it comforts me.
So to the doctors, I'm not telling you how to function. Just know that it matters that it hurts you. In the end, it matters more that it hurts you than that there was nothing else you could do for that patient. Words are cheap. Honest human emotion says everything.

Six months

Six months. 184 days. I can hardly believe I'm still alive. 

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In my daily routine I usually drive across a set of railroad tracks. Every day just before I do I wonder if today is the day I will get hit by a train. I am not trying to die or wishing for my own death, it's just hard to want to keep living.

I'm sure it's alarming to read that, especially in our sound-the-alarm culture. I've talked a lot about it with my counselor. There is a huge difference between "being suicidal" and just not really wanting to be alive. My counselor tells me that it's pretty common after an out of order death. (I'm safe.)

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The one thing I've been able to do for the last six months is sleep. Trouble sleeping is one of those things that everyone assumes is part of grief. It is extremely common. In some stroke of ironic dumb luck, I seem to have been the exception to that. I've been able to sleep even if sometimes it comes with unsettling dreams. Well, grief is a monster that leaves no part of your life untouched, so as of the last couple of days I've been having trouble getting much sleep. I'm hoping it's temporary. Usually every month I become agitated the week leading up to the 19th. Anticipation grief. Then after the 19th I have a couple of good days. Here's hoping. 

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I've been reading Harry Potter. I've never read any of the books before last month. It's not really my genre. But a friend bought me the whole series last summer. So last month I picked up the first book and started reading. It is oddly cathartic to read. I think it's because it's really just a story about pain and suffering and the humanity of living with that. Or at least that's my lens right now. I'd probably see the same thing if I read Jane Austen. 

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We had dinner with Eli's immunologist in North Carolina last week. He is an incredible doctor and an even better human being. He's been a pediatric immunologist for over three decades. He has seen a lot of suffering, and has had well more than his share of patients die. He treated kids who had HIV before there was much treatment for HIV. He fought for all those kids and he watched them all die. And I wonder what that must have felt like? But then he also saw treatments start to work. And he saw his patients live. And I wonder what THAT must have felt like for him. 

At one point this summer he and I were standing in the entryway of Eli's PICU room, discussing viral loads. I don't remember if Eli's adenovirus levels were going up or down at the time, but I remember asking this doctor if he had ever had a transplant patient with adenovirus survive. He looked directly at me and after the slightest of hesitations said plainly, "No." I wouldn't have guessed that would've been his answer. He always acted like Eli had a chance. He really did believe Eli had a chance. It wasn't just that he was confident in his abilities as a doctor. He does not give up. He seems to always have a shred of hope that if you keep at it and you try to look at the puzzle differently, eventually you'll get it. It's a remarkable quality in any person, much less a doctor who has seen so much suffering. 

At dinner he toasted to Eli. 

Writing his name in the sky

When Eli turned 4 last spring while in bone marrow transplant, I felt lament that he couldn't write his name. It doesn't need to be rational, I was just emotionally exhausted from living in the hospital and watching my kid get worse and I hated that he couldn't write his name. 

After Eli died in July I was desperate for assurance that he was okay and that I was going to be okay, eventually. I asked (God? Eli? I don't know) to see Eli's name in the sky. I wanted to see it clearly, so I would know for sure that Eli was okay and he could write his name. This would give me peace. This is what I thought. Again, it wasn't and didn't need to be rational. It was just how I felt and what I desired. So I looked for Eli's name in the sky for a month or two as I became more and more cynical. 

Then I stopped looking. What did I really think I was going to see? It was dumb anyway. 

My mom started a tradition/ritual of releasing a floating lantern each holiday in honor of Eli and now my grandma who passed away suddenly before Christmas. She has my complete blessing to grieve Eli however is comforting. But I won't participate. It's too much for me. 

So on Christmas late afternoon my entire extended family set out for a park to release two lanterns. On their way they saw Eli's name in the clouds: ELi. 

I wasn't there. I was at the beach with what seemed to be most of the rest of Jacksonville. The weather was weird and foggy. When I got back in my car I had a text from my mom that they had seen Eli's name in the clouds. She didn't know I had asked for that. No one did. 

How am I supposed to feel about this? This one bizarre thing I asked for actually happened, but not for me to see. There is a picture. That is not much consolation. 

I have a lot of questions. What am I supposed to do with this? Accept it because that's how life goes- you might get what you want, but rarely in the manner you wanted? Be grateful that it happened at all and there is a picture I can see? What if I had been there? Would I have been able to receive it or would I have found a way to discount it like I do everything else? Mostly, why did it happen this way? 

Here is what I either know or presume: This thing that happened has not strengthened my faith or brought me comfort. It pisses me off. I do think I would have discounted it somehow because Christmas was terrible and I was so angry and generally on the warpath that day. But I don't know what to do with it now. Look, if it was God or Eli that put Eli's name in the sky, then why was it somewhere I wouldn't see it. What is that about? 

I really don't think there is a simple answer, or an answer that would make sense to me here and now. But I do wish I understood what that was all about. 

I'm not sure I wish I was there, because like I said I don't think it would have been the comforting experience I desired. But maybe that's all I really want is some true comfort. I don't know.

ELi

Miracles

It seems like nearly everything is considered a miracle these days. Every good test result, every good medical appointment, every passed exam, every new employment, and on and on. Maybe humans have always been like that.

I have no idea how it really works, but I have a certain bit of confidence that God does not reach his hand down into our lives and fiddle with every circumstance whose outcome we approve, while keeping away from the  circumstances whose outcomes we dislike. That appears to be what many many people believe, but I suspect they just aren't following those beliefs all the way through; they just haven't had those beliefs tested by life yet. 

I am incredibly skeptical of anything that is deemed a "miracle" or "work of God" or "answer to prayer". However, I have a couple of "miracles"/"works of God" from Eli's death that I hold deep in my heart. I would call them bits of grace. 

The night Eli died, no one expected him to die. I am thankful beyond reason for this. I'm thankful the doctors thought he had as good a chance as ever to survive another intubation, and I'm thankful our corner of the world wasn't on high alert. If they were, I would have heard from many people who claimed to have seen Eli in their dreams, or claimed to have known in their spirit when they were praying, the moment he passed. These are generous and would-be comforting things, but out-of-order death is so complicated, I'm not sure I could have beared it, or believed it. 

As it happened, no one really knew Eli was dying that night, except for the few of us who were there. 

Eli died just before midnight. When just his body was left, the nurse and respiratory therapist disconnected him from all the tubes and wires and Jerry and I spent a couple hours holding him. Around maybe 2am we decided it was time to make some phone calls to family. We had to leave the room because we got no cellular service in the back of the PICU where Eli's room was. I had lost track of my phone and found it in the blankets at the end of the hospital bed. When I pressed the home button, the screen lit up with a message. It had come through shortly after midnight. It was from a dear friend who had no way of knowing what had just happened when she hit send. She had texted to tell me she had been reading scripture and praying and had fallen asleep, but woke up and felt like she needed to keep praying and that she loved us so much. I messaged her back, "Eli died just before midnight. I think you were praying for him when he died." In the morning I got a reply, "I woke up and knew to keep praying. I had an overwhelming sense to tell you that Eli wasn't afraid and for you to not be afraid for him. But I thought you'd think I was crazy." 

I can't explain that. I also have absolutely no need to, which is unusual for me. I can tell you that when Eli's heart was slowing, I wasn't afraid. In that moment, I was glad for him. My gladness was greater than my pain. It has been quite the opposite since, but I'm glad I was able to be present in Eli's final moments. 

The gift of assurance through a supernatural message that Eli was and is well is such grace I can hardly think about it. I feel unworthy to have received it. But it is also the most precious bit I hold onto.

The other bit of grace came a week or so later. A young woman (now a dear friend) who used to babysit Eli, lost her sister last January. It was sudden and traumatic. A few days after Eli died in July, she was talking to her mom and told her about Eli's death. Her mom listened and then seemed to be putting something together. She asked again when Eli died and my friend said Sunday night. Her mom explained that on Sunday night she had dreamed of her daughter, my friend's sister. She had been driving her to the hospital for an appointment and was in a hurry when she got in a car accident. She got out of the car and was surveying the damage when she couldn't find her daughter. She looked down the street and her daughter was dressed in all white, holding hands with a little boy with blond hair, walking down the street away from her. 

I can't explain this either. My friend's mom didn't really follow Eli's progress, except for what my friend told her. Her dream could be a coincidence, but I, the skeptic of everything, just think it's a little too much of a coincidence. 

I'm grateful that Eli's death itself was private and unanticipated. Grief and loss and pain and life are complex and confusing without projecting clairvoyance onto them. I'm thankful for these two nuggets of grace that I am able to just receive and treasure. 

A Grief Paradox

I don't think happiness is the goal. I have suspected so for a long time, but since having my children I have become more and more sure of it. Happiness is the cheaper version of what makes us tick. It ultimately is not fulfilling.

I think connection is what ultimately fulfills us in life. But connection is expensive. It requires us to be vulnerable with each other, to be our true selves, without the assurance that we will be met with acceptance. Connection is when our deepest, truest selves come out and interact with another's deepest, truest self.

Neither connection nor happiness are static states of being. They are moments we carry with us. They feed us. Happiness makes us smile. Connection makes us feel whole. 

I was talking to the husband about this the other day, in relation to my grief. Really, in relation to the fact that I am hiding in a hole and I cannot, will not connect openly over my grief. I lay in my bed and watch an ungodly amount of TV and no thank you, I would not like to talk about it or share pictures or memories. It's just too much. 

The husband thinks that's part of my problem. He thinks I'm a connector by nature, so keeping all this pain to myself is keeping me in deep grief. I can see where he's coming from. But I don't totally agree. I'm in deep grief because my kid is dead. Connecting over this grief is too much. It's too big, too red hot, too scary. Connecting over this grief isn't safe. I am confident that I would end up unresponsive on the floor and someone would need to call rescue. And the last thing we need is more medical bills. 

So what do I do with that? 

I think the husband is wrong. I think he hates seeing me like this. I think he wishes the collateral damage of having a dead kid, which is having a non-functional wife, is something he could fix or solve. I think seeing a grief counselor and going to grief club is the most connecting I can do right now. I don't know if I'll ever be able to connect more openly over this pain. I think if there is any hope of that, it will be a long time.

It's a paradox for sure, that connection is what we need and yet I can connect only limitedly over my grief. 

I could be completely wrong about all of it. I know almost nothing for sure. But I am pretty sure about happiness. I refuse to cheapen my life by chasing happiness. And that's not the grief talking. 

**While I have searched myself over the years and come to some of my own conclusions, connection and vulnerability can be explored in depth through the work of Brené Brown. Seriously, go read her books.**

To my parents, on forty years

Today my parents celebrate forty years of marriage. Their anniversary always sneaks up on me because it is immediately after Christmas and the New Year. But it seems appropriate that as each new year begins, they begin a new year of marriage. A new year of opportunities to love more graciously and selflessly is stretched out before them in a way that is more natural than my own summer anniversary. 

So what can two people accomplish and weather in four decades? They have lived in two different states, six different cities/towns, raised three children, traveled to at least 45 of the fifty states, not quite a dozen countries, held at least 13 jobs between them, owned five houses, an unknowable number of vehicles, been a part of at least five churches, buried three parents, a sister-in-law, one grandchild, and a few dear friends. 

I don't believe my parents have ever taken the easy way out of anything. They pretty much set up camp on the road less traveled by forty years ago and have not been swayed to a different path. They have had times of struggle and hardship- in faith, marriage, and finances. And they have had times when it all has worked out; where trust and faith and getting bills paid has come easy. 

Through it all they have done the hardest thing. They have stayed constant to each other and to their values and to the people in their lives. They have loved when love felt impossible. When trust has felt foreign they have remained steady until it returned. They have wrestled through faith and found their way together. They have taught my brothers and I how to love and how to parent. They have done all these things that have brought them to this day, four decades after they made promises they had no idea about, because they have consistently chosen love and presence in each other's life. 

Happy Anniversary, Mom and Dad. We are so blessed by your love and your example.