Today

Today wasn't terrible. A friend came over and we did some organizing in the garage. We could definitely tell the difference when we were done. We made our kids paint a bench to match my kitchen table. The boys got a lesson in painting. The bench looks good!
Jerry had a dinner thing scheduled, so I went with him. When we were getting ready to leave Durham last week I told my parents I didn't want to be the one to take Eli's car seat out of the car. I just wanted it to already be gone. They took care of it. Tonight we had a few extra people in the car for the dinner thing, so I sat behind the driver's seat, where Eli's car seat has lived for the last four years. I didn't die. I kinda wanted to at first.
It's strange to me that I have so little to offer in polite conversation. I'm an extrovert by nature. I can talk to anyone and in front of anyone. But the only topics I have any expertise in at the moment is sickness, death, and funerals. I have plenty of sarcasm and can lighten up these topics significantly, but it's still morbid for polite conversation. I guess I've just been out of the loop for so long, and things that used to come naturally are confusing, I just feel a bit awkward.
I'm glad I went to dinner. It was delicious food and good company. I think I'll mostly stay home tomorrow.

It's not cleaning if it's a science experiment.

It's not cleaning if it's a science experiment. 

I've always been a terrible housekeeper. I despise cleaning. I do enjoy a clean home, though. You know what is the worst about cleaning your own house? It's never all clean at the same time. All the areas take turns being clean. So annoying.

Cleaning is something I haven't done in a long time with the whole living in a hospital thing. But I'm trying to get the hang of it again. Of course this is complicated by grief, which makes normal things hard, and the fact that I'm still trying to figure out what I own and where it is (including cleaning supplies). I expect those two super fun realities to go on for some time. 

I've seen this "recipe" all over Pinterest and Facebook for "the best tub and shower cleaner ever". It's equal parts vinegar and blue dawn liquid dish soap. You warm up the vinegar, add that and the dawn to a spray bottle, swirl it a bunch to mix it up, spray it all over your shower/tub, let it sit, then rinse it away.  

I tried this yesterday because, what else do I have going on? And also, the tub needed a cleaning. Plus, science. 

Dudes, I am not impressed. I mean, yes it did an okay job, but I did put a little muscle into wiping the tub with a rag before I rinsed it. 

Honestly, just get some comet or ajax and scrub your tub. 

Coping

Coping

I like to think I can handle my sadness. I spend more time not crying than I do crying. Yay me! I tell myself optimistic things that are conveniently true. Like I've done a lot of pre-grieving. And I'm glad Eli's not suffering. And even things like its nice to be home and not live in a hospital. Also, ugly things like I can do all the grownup things I've been missing the last several years. But you and I both know those things are only part of my reality. Grief Club calls this "coping". I like coping. Coping makes me feel less things. 

I'm sick of being sad. I hate being sad. I've been sad and scared for the better part of a year. Scared is over; I have nothing left to fear. I'm 'bout done with sad, though. Sad can take a hike. 

Lately I've seen all these memes about creating your own reality. (HAAAA! Y'all, that is completely hilarious to me. People who keep sharing those memes are just adorable.) Well, I guess I am creating my own reality. A make believe reality where my sadness is well contained and your sadness does not exist. When someone gets sad in front of me I ignore them. Completely. I am a little sorry because that's a way crappy thing to do. But I don't want to catch someone else's sadness. No thank you.

None of this applies to Ty. He can do and be and feel exactly as he is and I'll let his sadness in. But the rest of the world is on their own. 

I've been reading about the models and stages of grief. They're all dumb, and not true. Grief is not a tidy, organized path. It's more like the ocean, relentless, pounding, swirling. If you are grieving, please listen to yourself and feel your way around and around it. 

Today I did a lot of coping and ignoring others' sadness. Maybe tomorrow I'll do less coping. We'll see. 

Eli's memorial service

Here are links to the songs we sang and the eulogy I gave at Eli's memorial service.

If I Stand (Jars of Clay)
https://www.youtube.com/watch?v=aRcKs-NvxqQ

Be Thou My Vision
https://www.youtube.com/watch?v=gExjYzULv9I

In Christ Alone
https://www.youtube.com/watch?v=8welVgKX8Qo

I Will Follow (Vertical Church Band)
https://www.youtube.com/watch?v=Xh3ZK7JecK0

I'm Still Yours (Kutless)
https://www.youtube.com/watch?v=D3fr2Kl4Fcs

It Is Well
https://www.youtube.com/watch?v=YNqo4Un2uZI

Eli

Often when a person dies it is easy to paint them as some sort of saint. I’m here to tell you Eli was the sweetest, brightest, most adorable, unexpected, and ornery gift there ever was. And that’s the truth.

When Jerry and I were expecting Eli, the only name we could agree on was “Eli”. That was it, the only one. We went with the more traditional “Elijah” because we liked the biblical background and the meaning, “The Lord is my God”. I would grow to curse myself for naming him Elijah, because I didn’t always want to remember or acknowledge that the Lord is my God. When Eli first got sick all I really wanted to do was punch that God guy in the face. It’s okay, he can handle it. 

We knew from the time Eli was several months old that something was weird, wrong, off. Eli just wasn’t thriving. So we dug in and worked and worked and got him therapies and tried to make him thrive. We are immensely stubborn people, but Eli’s stubbornness could not be matched, much less surpassed. Nobody puts Eli in a corner.

As he grew in age, Eli reassured us with his zest for life that whatever it was that was going on inside of him, would not stop him. Eli was fearless. He never stopped moving. He climbed everything, learned to swim, played on a soccer league, had proper form when throwing a football or shooting a basketball, all by the time he turned 3.

When Eli got sick last August, as scared as we were, we thought we would finally get some answers on what had been going on in Eli’s body for so long, from seemingly the beginning. But all we really got was more questions. The doctors could tell us that his body was creating antibodies that were attacking his blood cells, but no one could figure out what was causing that to happen. The more tests that were done, the longer the list became of things that it wasn’t. Today all I can tell you is Eli’s immune system functioned similarly to someone with Severe Combined Immune Deficiency, also known as Bubble Boy Disease. The extensive testing for SCID has been done twice and twice has come back negative. So Eli remains as mysterious today as he did throughout his life.

Being born with an undiagnosed immune deficiency never stopped Eli from anything, except maybe sleeping. He was such a precious, unexpected gift. When he came into our family, we were still pretty new at being a family. Frankly, we were concerned with the ways he would rock the not yet steady boat. But really, he brought the four of us together- myself, Jerry, Ty and Eli. These are the words I wrote to Eli on his first birthday:
Dear Eli,
My tiniest little man! One year ago today you made our brand new family of 3 a family of 4. You have bonded us all together in ways we did not expect and we are thankful. Your first year has been a rough one and we are eager to put it behind us. But still, it's hard to see you grow so fast without feeling like I am going to miss something. You are fearless and determined, a combination I'm certain will land us in the ER a time or two, so be careful! I love you more than words. I am blessed beyond measure to get to be your mama. 
Love, Mommy

It’s just like Eli to up the ante. Little did I know how much time I’d spend in the ER...and the hematology/oncology unit…and the bone marrow transplant unit…and the PICU.

When Eli’s immune deficiency manifested itself last year, I became angry, frustrated, stressed out. Time only exacerbated Eli’s symptoms, but as things got harder, by God’s grace alone I started to find my footing. Even though Eli’s body wasn’t functioning correctly, Eli was still his stubborn, tenacious self, maybe even moreso with the introduction of steroids to his life.

Corrie Ten Boom, a survivor of the Holocaust, often quoted her sister Betsie as saying, “There is no pit so deep that God’s love is not deeper still.” This was true then and it’s true now.

I have to tell you, seeing all of you in your sports team clothing would have made Eli so happy. Especially the part where we made all you Gator fans hide your allegiance. Eli loved all ball sports. Every single one. He loved to play and he loved to watch, and a lot of times he loved to do both. We once had US Open tennis on TV and Eli picked up a wii controller and started playing along with the TV. He loved going to sporting events and as a toddler would pay attention for the entire length of a game.

There are so many things I could tell you about Eli, but the most important is this. Wherever Eli went and wherever his story reached, Eli planted Love. One of his great gifts was that he pulled back the corners of people’s hearts to the possibility of love and faith. If Eli swept out any cobwebs or cracked open a part of you that you had shut a long time ago, please leave it open.

Watching Eli suffer over the last 11 months has been excruciating. We have wished so many times to trade his suffering for ours. And now we have. Eli’s suffering is over, and I’m relieved for him.  Now it’s our turn.

Thank you for loving our baby. Please take all that love out into the world and love big. 

Dammit

Dammit

We moved, downsized, back in January, while Eli was still in the hospital here in Jax. It was insane. I did so little of the packing and moving that I don't know where anything is or what we even own. But I am so grateful for the incredible help that was given to get us moved. People showed up and packed boxes and it all got done. So much love given and received. 

One thing I appreciate about the townhouse (besides the amazing price, the reasonable size, the quiet neighborhood, the good location) is that I didn't have to come home to a house full of memories of Eli. He only lived here for 36 hours. To me, that's a good thing. It makes this whole crazy losing my son thing just the tiniest bit more manageable. 

And still. Still I mutter "dammit" to myself a thousand times a day, when I unexpectedly come across something that was Eli's. Dammit. I was looking through a box of clothes today for my missing summer clothes and there was a collection of little boy shorts and tshirts in the bottom of the box. Dammit. I was looking for sunscreen today and I walked into the boys' bathroom to see the basket of Eli's bath toys on the back of the toilet. Dammit. 

It's not so much "dammit here's more of his stuff". It's more "dammit he didn't make it" "dammit I had to come home without him" 

Dammit. 

Old, unpublished, unfinished posts

I didn't write as much as I wanted to when Eli was in the PICU. It was hard and terrible and even though I had a lot to get out, I just let most of it go. But I do have two partial, unfinished posts that I worked on in that time. I thought I'd share them.
****It is important to note that I am not currently in this place, mentally or physically. This part is done.

5/22:

When bad news is constantly nipping at your heels, and all the good news you can expect is "stable", it doesn't FEEL good. It FEELS terrifying. When you realize that the valley you thought you were in two months ago, five months ago, was just partway down the mountain, and the valley is so deep and dark now you can't even see the mountain ahead, it is hard to have hope. 

We do not rely on our emotions to guide us, but it is a constant struggle to not give in to them. 

The love we have for Eli is immeasurable. It is heartbreaking to see him so weak and sick. Sometimes we simply have to choose hope when hope feels distant. 

My son is visiting for the weekend and he's wearing a bracelet that says, "I will trust in the Lord and not be afraid." I have already repeated this to myself 1,000 times today. 

We are weary. 

7/1:

God, I don't know what you're doing and I don't know if I can bear it. It has been such a hard road. Twice I have been told my son's life is over. And yet it isn't. You have saved him. At least I think you have. 

When I just think about today I can kind of do it. I sort of hobble along. When I think about what might be around the corner, another viral attack, or a kidney transplant, I am paralyzed with fear. Paralyzed. I hear screaming in my head, but no sounds come out of me. 

I know I should live for today, not tomorrow, but this is a little extreme. A human being just can't do what is being asked of me or of Eli. 

I cannot live in a hospital forever! I cannot live without my son, either. 

Please make a way out. Be merciful. You've saved him twice. Heal him. Here. 

___________________________________________________________________________

Eli made it 18 days after that last entry. On one hand it was so quick. No one really expected him to die the day he did. On the other hand, it had all been going on so long. 

As we left Durham the day after Eli passed, my husband shared some thoughts with me. He said we had wished we could trade places with Eli for so many months (truth), and now we had. Eli was finally out of suffering, and we had entered into suffering. Our hearts are most certainly broken, but we are also relieved for Eli.
I know what you're thinking, and no, it's not that simple.


"There is no pit so deep that God's love is not deeper still." -Corie Ten Boom

Hard

Hard

It's just hard right now. Eli is stuck in PICU b/c the cvvhd machine (slow continual dialysis) can't go with him to BMT. They used to allow them there. The BMT nurses told me they've had the machines there. But not in a long time. The BMT docs say the dialysis nurses don't want to come on and off the BMT floor to service them. The dialysis folks say the BMT doctors don't want the cvvhd machines in their unit. Who knows. The fact is we're stuck in PICU until Eli can transition to intermittent dialysis or until his kidneys are fully functioning. Either way it'll be awhile. It's like the movie Groundhog Day here. Everyday is the same. 

I'm not ungrateful for the miracle of the adenovirus being annihilated and Eli surviving and having no observable organ damage from it. I'm so thankful he's still with us and showing his spunky personality. That's about the only thing that keeps me going up here. But emotionally I feel like I'm dying a slow death. 

Outside the world keeps going. Spring came and now summer is imminent. Families are out and about, teenagers are going to prom, children are practically vibrating with excitement that the school year is nearly over (as are their teachers). My friends are taking their kids to minor league baseball games and Disney world and the beach. 

I just want my kid back. I just want to take him and big brother to go fly kites at the beach, hunt for shark teeth, go for a hike. I want to take them to a baseball game. 

And every night that I go to bed at the Ronald McDonald House, I wish Eli was next to me. Heck, I wish either one of my kids was next to me, or better yet, both. I not-so-secretly love having my kids in my bed (even though one thinks he's too grown now), and Eli has been sleeping with me since he got sick. 

I just want my kid back. This is really hard. 

Currently Eli is in acute renal failure. I'm not sure when it goes from being acute to chronic, but probably soon-ish. The doctors that we like and trust the most say Eli's kidneys just need more time. How much time? No one knows. More than a few days. 

It could be so much worse. Eli is SUCH A CHAMP. God has definitely healed him. But Eli still has so far to go. 

I just want to take my kid and go home. I want this all to be behind us. 

I was talking to my mom about all this today. She was rather enlightening. Leave it to moms, right? She compared it to the transitional time in labor. When you just can't do it anymore and you beg to home, or be done, as if that's an option. That's precisely when things start changing, the end is sort of in sight (after a pretty giant hurdle) and so much of the labor is behind you. In the case of Eli in renal failure and waiting for his cells to grow...I hope she's right. I hope we've done the heaviest lifting and we're on our way to a new and healthier life. Theoretically in a few more weeks we should know the outcome of Eli's transplant. Which cells engrafted, if it's permanent, if the old rogue cells were sufficiently killed off. And in a few more weeks hopefully Eli's kidneys will be more functional, and/or he will have transitioned to intermittent dialysis. But like in transitional labor, I just can't do it anymore. I want to take my kid and go home. I don't have anymore weeks in me. 

On one hand I think I should probably just take my anti anxiety med. I don't take it regularly. I got it to help me through the hard parts of this process. It would definitely help presently. On the other hand, what I know about myself is I process things by feeling my way through them. Remember "Going on a bear hunt" from preschool? "Can't go over it, can't go around it, gotta go through it." It's like that for me in life. So I am cautious about anti anxiety meds because I have to fully go through something to get past it and move on. I do usually take it on big days (like Eli's birthday) so I don't turn into crazy anxiety lady and ruin everyone's fun. I'm great at getting uptight and spazzy, so it's helpful.

But I think I'll be okay if I take it now, just so I can get through the next few days and weeks. I don't think there's anything wrong with taking medication and I'm not trying to prove anything to myself or anyone else. I just want to make the best choice for my health. Which is why I haven't had any alcoholic beverages in a few weeks. I don't think it's healthy for me to put wine on top of a depressive state. So I haven't. I have tried to eat a more plant based diet, as that affects my mood positively. Sleep has been hard to come by, even on the nights I get to sleep in a bed. I've walked to and from the hospital to the Ronald McDonald House a bunch instead of driving or taking the shuttle. It's a little over a mile. It's a pretty nice walk. So I think doing those things are helpful, and the next right choice is a pharmaceutical. 

My family and friends have been great. Better than great. I have had more friends, old and new, reach out to me in love than I would ever have expected. They've been so kind, tender, encouraging. My family has been loved so well by so many people. It's humbling. I don't know that in five lifetimes I could return or pass along all the love we have received, but I sure will try. 

Which leads me back to being D-O-N-E. I want to take my kid and go home.

We just have to get past this hard part. And the only way out is through.