Jake and I are reading Harry Potter and the Sorcerer’s Stone, a few pages at a time, every night. Getting to watch the movie serves as Jake’s main motivation, but he found that reading a chapter book has opened up a whole new world.
“What are those lines?” he asks.
“Quotation marks,” I say.
“Why are they there?”
“It’s when someone’s talking.”
On another night:
“Mommy, what are those?”
“Why are those there?”
“They usually show that something belongs to someone. Or that you’re combining two words.”
But last week, the most adorable thing happened. In the middle of me reading, Jake’s eyes got huge, and he nearly screamed, “MOMMY!”
“What?!” I said.
“I KNOW THAT WORD THERE! THAT’S ONE OF MY SIGHT WORDS! IT’S THE WORD ‘THE’ — I KNOW THAT WORD!” And then, fully screaming now, with his hands in the air, “I CAN READ!!!!!”
And I could almost see the whole page light up like Christmas lights for him — every sight word suddenly became readable.
“And that’s ‘as’ and that’s ‘was’ and that’s ‘he’ and ‘were’ and ‘we!'”
And his English teacher mother burst into tears. Dramatic and emotional, that moment will go down as one of the top ones in Jake’s young life.
Top moments because of the obvious: Jake is learning to read. The scribbles on the page mean something to his little brain and heart now.
But a top moment mostly because life is a series of moments that morph into each other — very rarely do I get to savor and understand when a huge milestone is happening. With the exceptions of birthdays, most of my children’s lives have been a fluid and gradual change, from infant to baby to toddler to little kid. I suppose my life has been the same.
I couldn’t tell you the last time I heard Jake say, “Uppy car truck!” (Jake’s word for a car carrier); or the last time I heard Kate say, “Jakey trouble.” I’m not sure I could pinpoint the exact moment that they crawled or walked… in their baby books, I estimated. I saw them each working toward those things. Jeff and I noticed it in snippets. But then — one day — they just… crawled! Or walked! Or talked! And from then on, they crawled or walked or talked. From then on, they were forever different, with the former version of themselves shed like a winter coat, no longer needed.
I can’t decide if it’s merciful that life is this way, or if it’s painful. I guess the paradox is that it’s both.
The first time I realized this was in my early 30s. I was only a few months postpartum with Jake, and Jeff and I were out for the first time since becoming parents. I speak for both of us when I say that we missed Jake terribly, and felt so guilty for not being with him. And as we sat there, having a beer, I realized that my 20s were forever over.
The nights of going out with little commitments to return to in the morning; the days of really only being concerned with my own list of priorities and commitments; the weeks planned around seeing friends and going to out to dinners: none of those things were completely over… but the 20s version of them was. I could still go out with friends, but I had commitments, starting at 6 am the next morning (or really, a 3 am feeding). I could be concerned with my own list of priorities, but that list now also included Jeff’s priorities and Jake’s priorities. Things would be forever different. But I was perfectly okay with it. I loved my life. I looked at Jeff over that beer, and thought, “Yep — this is better than what I could’ve wished for.” And then I said those exact words out loud to him. He squeezed my hand in agreement.
My life has morphed into different versions of the same thing. It’s always been my life, but when I think about how I spent my days as a child; how I spent my days as a teenager… even how I spent my days in college — I barely recognize that life. I barely recognize myself. But I was still the same person. I suppose the obvious metaphor is that a person is like a rock on a shore: the waves constantly come — some big, some not as big — and we are shaped by the tides and the seasons and nature. The waves come so rhythmically, so frequently, so involuntarily, that the rock barely notices them after a while. The rock is there, its own entity, but completely at the mercy of everything else around it.
Today in church, the homily was on what to do when we are faced with injustice and tragedy. The line that stuck with me from the gospel was, “By standing firm, you will win your souls.” In other words, by believing, by persevering, by doubling down on faith, we secure our souls… our lives… our relationship with loved ones, friends, and God.
In the homily, the priest put it this way: “Anxiety is the end of faith; and faith is the end of anxiety.” Jesus, he said, knows that worry is one of man’s most destructive forces. Faith is our ticket out of worry and anxiety.
The rock doesn’t worry about the wave.
This time last year, I was obviously very worried. Anxiety was through the roof. Sometimes, I’d lay in bed and google, “How do you know if someone is dying?” I’d read all of the signs. Then, I’d look at Jeff during the day, trying to figure out if he was actively dying. I went back and read Caring Bridge entries from this time last year. I think it was right around now… in this week… where I realized that Jeff was really really going to die. And part of me just wanted it to be over, for him, for us, for everyone. Jeff was in pain, disoriented, and sad. He slept more, talked less, and his voice changed. We had someone staying at our house every night at this point, whether someone from my family or someone from Jeff’s. Time condensed and expanded, hurtling toward Jeff’s death.
When I reread the entry from November 26, 2018, I still can’t believe this was our lives:
After Jeff was disconnected from chemo, things kinda went downhill. The pain became more and more difficult to manage, especially at night. Aunt Lisa went home on Sun, Nov 18th and because of how things were going, Barb agreed to stay the next few nights. That Sunday night was awful. Monday morning, I took the kids to school and came home to Jeff being in intense pain. Barb and I decided it was bad enough that we would call an ambulance. The firetruck got to our house first, and after an assessment, the men gave us an option of three hospitals, none of which were CDH. So, we cancelled the ambulance, and I drove Jeff to CDH.
I vividly remember coming home and hearing Jeff in pain. If you want to know what it’s like to hear someone dying, this is what I would say it sounds like. I remember driving Jeff to CDH, and then waiting in the sitting area: Jeff fell asleep off and on in his wheelchair. And when he was lucid, he’d say, “Jess! It hurts so badly!” It was terrible. I vividly remember feeling like I was unequipped to handle it, and I was so tired and exhausted and felt like there was nothing left I could do.
There, they gave him IV pain meds, and he was out of it for most of the day.
I used to sit and watch Jeff a lot, when he was in the hospital. When he woke up, I so badly wanted to talk about everything – from the weather to the kids to what it would be like to die – but he wasn’t himself anymore. So our conversations were about the immediate: getting him warm; getting food; asking questions.
While Jeff was getting pain meds, I got a raging headache. Admittedly, I am a wuss with headaches because I never get them. Although we are ED experts at this point, I got flu-like symptoms this time, like where it hurts all over your body and all you want to do is curl into the fetal position. I went home, took some ibuprofen, and tried to rally to get the kids from daycare. I don’t think it’s any coincidence that my body reacted this way. I don’t think I’m sick. I think I’m stressed. I think it’s that bundle of nerves situation. (I called Teladoc (because, who has time to go to the doctor?!), and kinda fibbed about my symptoms to get some antibiotics, just in case (because, who has time to be sick?!). I started to feel better sometime on Saturday.)
Oh man… I was so sick so often last year. The headaches were awful. I used to think that anxiety and stress were things amplified by people, but now I realize how involuntary it is when your body reacts to those external stimuli.
I brought the kids to CDH after school, so they could say hi, and then Jeff was transferred to UChicago via ambulance later in the evening. Barb went with him. By the time they did his intake and scans, the two of them got to bed around 3 a.m.
This was so hard. I wanted the kids to see him — there was no question about going. But I wanted to stay with Jeff. I wanted my kids to have normalcy. There wasn’t enough of me to go around. I was – and am – so thankful that Barb, Randy, Trish, and Scott are who they are: between all of us, Jeff and our kids were always surrounded by love.
I went down there the next morning (thank you, Teladoc, for talking to me on my drive downtown). UChicago never really did figure out what was wrong. The CT scans confirmed that Folfox is not working, and there is slight disease progression. Palliative care discussed a different management plan, which involves more Fentanyl and a different strategy of taking Dilaudid and Oxycodone. Also during that stay, Jeff and Dr. Liao agreed that he could try Folfiri, which was previously discouraged because Jeff’s bilirubin was too high, which increases the risk of liver toxicity and liver failure.
I feel guilty for admitting this, but hearing this news about the disease progression on Folfox made me so angry at Jeff. I just wanted him to stop treatment. I wanted him to focus on being home and being comfortable. But it’s also difficult to be and stay mad at someone who is clearly in pain and likely dying.
We were supposed to go to Indianapolis for my family’s Thanksgiving tradition, but on Monday morning – between Jeff’s pain and calling the ambulance – I decided that was not a good idea. He agreed, and my family enacted Thanksgiving On-The-Go, and literally planned and cooked an entire Thanksgiving dinner for 17 people, packed it up, and drove with it four hours north. They got a block of hotel rooms and made things normal, and certainly warm and loving. Shout out to the Shepherd crew. That was amazing, and I’m not sure you will ever apprehend what it meant to me.
Jeff agreeing to stay home for Thanksgiving was really difficult for him. Amazing that my family organized Thanksgiving On-The-Go… hard for us to admit what that meant. Jeff was at loose ends on Thanksgiving. We sat on the edge of our bed, Jeff emotionally drained. Looking at his hands, he said, “I’m afraid this will be my last Thanksgiving.”
Somehow emboldened – or callous, depending on how you look at it – I said, “It might be.”
“What will you do?” Jeff asked.
“We will keep on living, just like I hope you would do if I died.”
Jeff nodded. I would like to believe he was comforted by that… but more likely, he was saddened by it.
Jeff was released Wednesday afternoon, and was home for Thanksgiving. The day ended in fun, but it had a rough start. Jeff had dark/black stool on Wednesday night and into Thursday morning. As people showed up with aluminum trays of corn and stuffing, Jeff was in the bathroom, and we were wondering whether he would be home for less than 24 hours.
Par for the course. Every day was a new challenge.
We did what all fully-grown 36-year-olds do, which is, we called Jeff’s mom to see what we should do.
We called Barb a lot!
Barb and I agreed that going to UChicago would only mean sitting in a waiting room on Thanksgiving, and that he wasn’t going to die from a GI bleed today. So we waited. And while we waited, I got some holy oil that our friend’s mom sent us. (Apparently, there is a healing cross in Darien, IL that oozes holy oil during times of deep prayer.) So, I prayed to Mary (she’s a mom, so she gets it), and asked that we just have as normal of a Thanksgiving as we could. I got the oil, put it on Jeff’s head, heart, and liver. I put it on my own head and my own heart, asking Mary to pray for me, since I have no idea what to pray for anymore. And things improved. We did not go to the emergency room. And Jeff hasn’t been to the hospital since last Wednesday.
I realize now what was happening: Jeff wasn’t going to the hospital because his immune system was too weak to mount a response. Had Jeff been older, had he not been as healthy to begin with, he likely wouldn’t have made it to December, or even November.
Thanksgiving day night, my family played Catch Phrase, and Jeff played a few rounds with us. I know all of us enjoyed seeing Jeff as himself, with his deadpan humor and quick wit.
It was so strange to laugh during this game. Jeff was sitting on the couch, successfully participating. If I worked hard enough, I could rationalize things into normalcy for a few seconds.
Friday, Jeff had another drain put in for his ascites. This will allow us to drain at home, instead of Jeff having constant paracentesis procedures. Except that last night, that catheter site leaked ascites everywhere. So Jeff and I were troubleshooting this morning at 3:30 a.m. When I tried to drain the ascites, nothing drained. I don’t know if that means things are clogged or what. So we patched things up with super absorbent pads, and hoped to get through the night. This morning, things had leaked again.
I also realize now that this drain was the doctors’ way of preparing Jeff to die. If he had not had this drain, he would have been even more uncomfortable while he was dying. When Jeff was on hospice, I remember vividly opening the valve to this drain and watching the fluid pour into a Pyrex measuring cup. In the beginning, we were draining 500 mL every few hours.
Jeff’s at the hospital today, getting his first infusion of Folfiri. I don’t think it’s pessimistic of me – only realistic – to say that I expect the rest of the week to be awful. While he’s downtown, he’ll ask about the ascites drain, among other things. Barb is going to stay with us this week to see us through the worst of it.
I resented Jeff for getting this chemo infusion. Every emotion I felt toward him – love, anger, pain, loss, desire, friendship – was heightened. I couldn’t feel intense love and then keep the anger under control — every emotion was turned up to 11.
And the kids? I called the ENT last Monday as soon as they opened (this was right around the time I was calling the ambulance for Jeff), and (Casey, I so felt your pain on this one with the red tape at Lurie) just kept telling people that my daughter was waking up in severe pain and even ibuprofen and tylenol on rotation couldn’t manage it, and that I would take her wherever to whatever ENT would see her. I got in on Wednesday at 8 a.m. with Kate’s regular doctor, and he cleaned her ears out. Good God was that traumatic. Poor Kate. I think it helped, and she hasn’t really complained since. She’s on ear drops and we go back for a follow-up in two weeks.
Kate ended up getting another set of ear tubes in January. I can’t believe that in the midst of Jeff dying, both of our kids were sick; both had pink eye the day of Jeff’s funeral; and both were coughing to the point of needing nebulizer treatments with some frequency. Complete chaos.
The waves were coming in quick, this time last year. It was a hurricane. Every moment felt intense and monumental. And even though that was the case, Jeff’s death was gradual. It shifted slowly into the next stage, and the next. I grasped at straws, by googling and by reading, to try to pinpoint when and how Jeff would die. I asked his doctors verbatim, “How will he die? How will it happen?”
But still, just like my kids have shifted from infants to babies to toddlers to little kids, Jeff shifted from one level of living to another. Slowly, he lost his ability to walk; his ability to enjoy food; his ability to speak clearly and reason. For a long time, we all thought these losses were temporary. But around this time last year, we realized… they were permanent. Jeff was shedding parts of himself, his body preparing to die, and his mind and heart grudgingly trying to catch up.
Elisabeth Kubler-Ross argues that people choose when they die. I don’t know if I entirely believe it, but I want it to be true. Because then Jeff had the last word, and although I know that doesn’t matter in the scheme of things, it makes me feel like some small rectitude was preserved.
And now, I am grieving the life I thought I would have. I’ve known it… I’ve been grieving it. But I will never again meet someone in college and fall in love. I will never again date someone in my 20s, when life seemed super important and intense, but in reality, was not. I will never again share the love of my children with their father. I will not and cannot relive the moment of my children’s birth with anyone. From here on out, everything is new and uncharted, and will never again be what it was, or what I thought it could be. Which sucks, because life was better than I had imagined it could be.
I suppose that should give me hope for the future. A part of me can admit that it does… that because life turned out better than it could be, life has the potential to be that way again. But I’m bitter that Jeff isn’t in that version of life. It just makes me sad. So sad. I will always miss my friend.
The waves continue to come. Sometimes, I’ve felt dislodged and adrift because of them. The waves have been loud and rough, reminding me that I’m changing and that it’s not always welcomed or comfortable.
But the present bleeds into the future, making it difficult to discern where one ends and the other begins. My life continues to shape-shift. And more likely than not, the waves will become rhythmic again – predictable, and maybe even comforting – somehow lulling me into believing their merciful lie: that there aren’t even waves at all.