December 21, 2017: Solstice

One year ago today, we did not have to wake up and rush into the city. We could do whatever it was we used to do before our days revolved around trips to Columbia for radiation, or, reaching further back, before our days revolved around trips to Kessler for cognitive and physical therapy. We could just be Matt and Elaine, without any appointments on the horizon. It was the first time we truly had that option since September.

But what it meant to be “just Matt and Elaine” had changed. In the time before, Matt would leave for work by 8 and I’d play wife, mother, and aspiring author at home.

I don’t remember what we did on December 21, 2017. The text messages give no clues as to how we passed the hours while G and H were at school. The photos saved on my phone give a little insight into the day. Pictures of bills. Screenshots of confirmation numbers for bills paid. The emails are full of “forgot password” confirmations and “set new password” notifications. Which all leads me to believe that one year ago today, I set to work on the mountain of mail, paperwork, and bills that had piled up while we’d focused on Matt’s treatment.

It should have been easy. For Matt—the real Matt—it would have been easy. A matter of simply logging in and confirming payment or entering payment information. For me, it was a time-consuming exercise in frustration. It was a matter of resetting passwords and guessing log-ins. It was hours of wishing I’d listened to Matt when he had previously encouraged me to learn the passwords and log-ins for the various utility companies and service providers.

If Matt had been Matt, I’m sure he would have delighted in being proven right—and I can almost imagine the good-natured way he would have laughed when I admitted exactly how long it had taken me to do what would have taken him just minutes.

December 21st, also known as the winter solstice, a day marked by the longest night of the year, is the official start of winter. The sun is gone by 4:30 and the night feels endless. And yet, (almost paradoxically, given that I’ve admitted how much I dislike winter), it’s one of my favorite days of the year. Every year on the winter solstice, I liked to remind Matt (whether he wanted the reminder or not) that, in regard to the darkness, it’s only getting better from here. I liked to point out that from here on in, the days will get longer and the nights shorter—imperceptibly at first, but then undeniably. Essentially, I’d tell him the worst of the darkness was over.

One year ago today, the winter solstice, our first day with no treatment, no therapy, no doctor appointments in the near future, it was so easy to believe that the worst was over, that our own darkness was going to begin to subside. Slowly, imperceptibly, no doubt. But hopefully, maybe, soon, undeniably.

In Post Hope, I’ve found myself looking forward to this day again. If only because I love the reminder that the darkest days don’t last.

December 20, 2017: Last Day of Radiation

December 20, 2017 marked Matt’s last day of whole brain radiation. Fifteen doses of whole brain radiation to slow, and hopefully beat back, the leptomeningeal disease, the tumor that had spread all throughout his brain.

We left the house earlier than usual on December 20th. On our way into the city, we stopped at Dunkin Donuts and bought huge boxes of donuts to distribute to the people who we’d come to know over these last weeks. A box for the men and women who worked in Columbia’s parking garages; a box for the receptionists, nurses, and technicians at the radiation clinic; and a box for those who worked at the neuro-oncologist’s office.

The overall feeling as we drove into the city for Matt’s final radiation appointment was relief. We’d made it through yet another round of treatment. Now, we simply had to wait. The radiation oncologist had confirmed that likely some of the worsening difficulties Matt was experiencing with cognition—word finding, confusion, irrationality—were due, at least in some part, to the brain swelling from whole brain radiation. The radiation oncologist noted that in a normal case, the patient would be put on steroids, but Matt had ceased being a normal case more than a month ago. Matt was already on a high dose—and already suffering the side effects of that high dose (anger and joint pain)—so the doctor was hesitant to increase his steroid. We could do nothing but wait for the swelling to subside on its own and for the radiation to work against the tumor.

I remember when we delivered the donuts to the receptionists at the neuro-oncologist’s office. We didn’t have an appointment—and no doubt they feared we’d stopped by for another impromptu appointment, thereby scrambling their calendars once again. We (Matt and I) delivered the donuts and made a joke about seeing them next year. They laughed and told us to enjoy our break, they’d see us on January 22nd, the date of Matt’s next scheduled MRI. It never occurred to me we’d be back much sooner than I expected.

When I look back on December 20, 2017, I see nothing but hope and joy. I remember being able to breathe easier on December 20, 2017. I remember feeling as if I was skipping from building to building as we delivered the donuts. (In my memory, I can’t stop smiling at the people we spoke to.) We were done. Now, we just had to wait until things got better. I even texted a friend and said I could handle whatever else came our way because the end was in sight. In reading that back, I realize I should have included the word happy. I believed our happy end was in sight.

Maybe it was naive. We’d been told a cure was no longer on the table. But what if. We’d made miracles before and what if works in both directions. What if this treatment works a miracle for Matt? What if our story has another couple of happy chapters?

In many ways, December 20th was one of our most hopeful days. As the darkness of Matt’s disease gathered around us, deepened and closed in, we somehow saw light and hope, enough to believe better days were on the horizon.

One year ago today, Matt was sent home with a black tote bag. Inside was the mask he wore during radiation. Neither of us knew what to do with it then. Now, I still don’t know. It’s a symbol of what Matt underwent, all that he endured in the hope of defeating a tumor that was simply relentless in its attack.

December 19, 2017: A Few Hours Away

One year ago today, Matt’s second to last day of whole brain radiation, Matt’s mom drove Matt to Columbia for his appointment and I had a few hours away, a “day off” from caregiving.

When Matt left with his mom, I took a Bar Method class and got a haircut, bought things I didn’t need at Target and chatted about nothing on the phone with my oldest childhood friend. I could pretend I’d never heard the word Glioblastoma. I had a few hours to revel in the quiet of the house and in the knowledge that I didn’t have to be hyper-aware of every moment.

And every single second of those few hours felt like a betrayal. After all, Matt could never be granted that same “day off”. From the moment he was diagnosed, he could never escape the word Glioblastoma. I felt like a traitor for even wanting time to myself. I felt like I was abandoning Matt for even feeling like I needed or wanted a “day off”. Even thinking “day off” felt somehow cruel. Because Matt was my husband, not my job. And wanting a “day off” was coming close to acknowledging that our relationship had transformed from husband and wife to caregiver and patient. On December 19, 2017, I couldn’t admit something like that, to myself or anyone else.

I remember wondering how it could be that I was completely devoted to Matt’s recovery, prepared to give of myself whatever he needed, but also desperate to have a few moments during which I didn’t even think the word cancer.

The answer to the question might simply be to point to the contradictory nature of brain cancer, how so often I found myself holding two contradictory beliefs at once. The story of today is no different. I wanted to be with Matt every second—to keep him safe, to watch for changes (either good or bad), to just be with him because that felt like the place I needed to be—but I also needed a break from a life that had become unrecognizable.

My mom has often repeated to me a Russian proverb about motherhood, which loosely translates to: in order to take care of your kids, you have to take care of yourself. It’s advice similar to the advice caregivers (all caregivers) most often receive: take care of yourself. It’s not bad advice. It’s great advice, actually. But it’s easier said than done.

One year ago today, in theory, I could pretend I’d never heard the word Glioblastoma. Instead, I spent the day worrying whether Matt had taken his pills on time, whether he’d given his mom a tough time, whether he was having one of his better mornings or not. I couldn’t turn off the hyper-awareness that had become fused into my thought process. And also, I spent the “day off” hoping to return with the energy I needed to keep fighting the battle against that invisible monster for the both of us.

Being a caregiver for a brain cancer patient (maybe for any patient) is an all consuming job. Every waking second—sleepless nights, included—is devoted to giving care. And taking a “day off” mentally isn’t an option, but it’s also a necessity.

That night, G took a picture of Matt, me, and Coco—the dog Matt always said he disliked, though Coco was most often found curled up beside him. It’s the last photo of Matt and me that I have. In the photo, I cannot recognize Matt’s smile. I can’t recognize him, really. I look kinda tired. But we were together and we were smiling and we were simply doing the best we could.

December 18, 2017: Finding Footing

One year ago today, Matt started his last week of radiation. He had three more days and he’d be finished with his fifteen doses of whole brain radiation. The end of our daily trips into the city was in sight, and I was thrilled.

For a few reasons. One, and most importantly, I hoped that soon we (Matt, me, everyone involved in Matt’s care) would start to reap the benefits of those fifteen days. Maybe Matt’s cognition would get better. Maybe his vision would clear. Maybe he could decrease his dose of Dexamethasone, as planned, and that anger would fade. Two, I was looking forward to slowing down the pace of our days, getting back to a more normal routine.

And three. I’d tentatively begun to believe that if the worst of the side effects the doctor had warned us about—namely, the memory loss—hadn’t occurred by now, then those worst side effects wouldn’t occur. His memory seemed to be intact, or at least as intact as it had been before he’d started whole brain radiation.  Maybe Matt wouldn’t suffer any significant side effects.

I have a single vivid memory from December 18, 2017. While washing the dinner dishes, I heard Matt, who was seated in his spot on the couch in the living room, on the phone. It didn’t sound as if he were speaking with a friend. I dried my hands on a towel and went to check. I don’t remember exactly how I knew, what he said that caught my attention, but I realized he was on the phone with a telemarketer—and rooting around for his credit card or license in order to give personal information.

I think I panicked, asked Matt to hang up immediately. He did—but he was furious. He couldn’t understand why I was so upset. And for a moment, I couldn’t either. Similar to the scissors incident (wherein Matt insisted he could write with scissors), I questioned my perception of the world. Maybe it’s perfectly fine to hand over personal information to a random person on the murky end of an unknown number. But unlike with the scissors incident, I didn’t call a friend and, in tears, beg for her to set my view of the world correct.

Because after that moment, I remember swallowing the uncertainty and (figuratively) digging in my heels. Yes, I was right to ask Matt to hang up, to not give up his personal information. Sometime between those very first conversations and arguments that had started the shift in our relationship and December 18, 2017, I’d begun to find my footing in our new roles. Begun to trust myself a little.

Or, at least, taken a tiny step in that direction. In Post Hope, I can’t say I trust myself completely in this new role as a young widow and single mother. I definitely haven’t yet figured out how to confidently steer the direction of our (G’s, H’s, and my) lives the way Matt knew how. But maybe that’s okay.

Maybe it’s enough to take a small step every day.

December 17, 2017: Vital Spark

One year ago today, a friend, possibly sensing the disappointment I’d felt about missing out on yet another night out, possibly just realizing any thread of normalcy was wildly appreciated, invited us (our family of four) out to dinner. Another family joined us.

I don’t remember much of the dinner. I have a few photos of G and H smiling at the restaurant, a few text messages received after dinner letting me know Matt seemed good, and a vague memory of calculating the tip and signing the check—something that had always been Matt’s job, but had now become mine. That renegotiating relationships.

Two years earlier, on December 17, 2016, about a month or two before the tumor in Matt’s left parietal lobe was discovered, in the time when we believed a recurrence was something that wouldn’t happen for another half a decade at least and the poliovirus was just an exciting news story on 60 Minutes, we could not go out for dinner, or anything else. We were snowed in. Matt took G and H out to play in the snow and I stayed inside in the warm house, taking photos from the playroom window. We (Matt and I) had a clear division of labor—he played in the snow and I made hot chocolate.

One(ish) year ago, H—no doubt thinking of snow days like the one he’d had the year before—asked me who would play in the snow with him because Daddy couldn’t even understand what he said. It’s an echo of a question he’d ask again in the early days of Post Hope—who will play in the snow if Daddy isn’t here? Both times, I answered him the same way. I would play with him in the snow. Both times, he reminded me that I hate snow and being cold, that I didn’t own snow pants or boots. He had a fair point. That cruel transition. (I’ve since bought snow boots and played in the snow–though I guarantee I’m less fun.)

I don’t have much to say for today’s post. The story of today brings up many themes I’ve already written about and I don’t have anything new to add to the topics of renegotiating relationships or that cruel transition, yet. I knew I might encounter this kind of struggle in December—what to say when every day is difficult, but difficult in the same way.

So, maybe today’s post is a reflection, a chance to stop and breathe and consider all I’ve hoped to accomplish with this project. I had wanted to find the day that I lost Matt. Was he gone by December 17, 2017? When I scour my memories of December 2017, I am reminded that, in many ways, most ways, even, he was. Everything from his smile to his anger wasn’t his.

The cruelty of brain cancer: we (G, H, and I) had already lost so much of our person.

But if I look deeper into the story, I know some invincible part of Matt remained on December 17, 2017. At dinner, he’d tried to follow the conversation and he’d tried to crack jokes. At bedtime, he climbed the stairs and into bed with me, G, and H to listen as I read them a bedtime story. After the kids went to bed, he sat with me to watch a show as he always had, even though he couldn’t see the television or follow the plot. And I know that Matt wasn’t lost, not in every way.

It’s only in looking back, in realizing we had forty-eight days left, that I realize how incredible these small acts were. It’s only in knowing how viciously Matt’s cancer lashed out that I can understand the depths of Matt’s strength, all that was required to keep that vital part of his spark alight.

December 16, 2017: To Come Up For Air

One year ago today, Matt and I declined an invitation to go out with friends. We’d received the invitation—to celebrate birthdays and holidays and the end of another year—earlier in the week, but I’d avoided giving a firm answer, thanks to a hefty dose of denial and a fair amount of wishful thinking. I had told the friend that I wouldn’t be able to commit until the last minute; it would depend on Matt. She’d been understanding.

She was understanding on Saturday, December 16, 2017, when I texted her to say that we (Matt and I) weren’t going to be able to make it.

I had hoped to go—even securing my mom as a babysitter for the night. I had wanted to go with an almost adolescent desperation. For so many weeks and months, we’d been submerged in the world of cancer. I had hoped to come up for air, for just a few hours. I had hoped Matt would be feeling enough like himself that we could stop by and just be Matt and Elaine—or, at least, something approaching Matt and Elaine. I had wanted to feel normal—like another suburban couple out on a Saturday night.

As the day marched on, I accepted a truth I’d known all along. Normal was too far out of reach. We couldn’t go for a couple of reasons. For one, Matt simply wasn’t Matt. He’d be disoriented in a large, loud group. He’d feel out of place in a conversation that he couldn’t quite follow. He’d struggle too much. And that protectiveness. Rightly or wrongly, I didn’t want to expose Matt to a situation in which he might be frustrated.

And two—and this reason is harder to verbalize and largely irrational—we were trying to protect the majority of our friends from our truth. In a way, we were trying to protect ourselves from it, too. The (irrational) logic goes like this: if the majority of our friends didn’t know the extent of Matt’s struggles, then once he got better, we could pretend he’d never struggled at all. That was how Matt and I had dealt with every down cycle. During the upswing, we never discussed the depths to which we sank. We never acknowledged the darkness through which we’d walked. In the upswing, we’d just pick up where we left off from the previous upswing. In a way, we pretended the down cycles never existed. And it was easier to pretend if our friends didn’t know.

That belief. The belief that this struggle was temporary, that this down cycle would end and we’d be able to blot it out of our memory to pick up where we left off, was how hope manifested on December 16, 2017.

That night, because we had a sitter, because my mom encouraged us to go out, we (Matt and I) went out. We went for dinner—and I wish I could say it was easy and fun. It wasn’t. Conversation was strained. Matt’s warped reality combined with my disappointment was an explosive combination. Afterward, we went to see the new Star Wars movie. We’d gotten to the theater late and had no choice but to sit in the very first row.

I don’t really remember why we didn’t leave—return the tickets for a refund and go home. I vaguely remember Matt wanting to stay. We watched the entire movie. Two plus hours craning our necks up to an impossible angle.

I remember almost nothing of the movie, except this: Matt had loved it. That close, he’d been able to see the screen and all the details that mattered in the movie. For weeks prior, he’d been unable to watch TV at home. He’d all but given up watching football and basketball. But finally, he’d been able to watch a movie. He’d gotten a few hours of normal.

Without realizing it, we’d gotten my wish. The chance to come up for air.

December 15, 2017: Lunch Date

One year ago today, Matt and I breezed over the George Washington Bridge in record fast time. We made it to his whole brain radiation appointment early and the technicians took us early—nearly before Matt had a chance to sit in the waiting room. Ten minutes later, we were done and collecting our car from the garage. We were back in New Jersey before noon. It was a timing miracle.

Every day after radiation, Matt would ask to go to lunch. Every day, I’d tell him we couldn’t—we could only pick up lunch from wherever he wanted and take it home—because we had to be home for G’s and H’s school bus.

On December 15, 2017, thanks to our timing miracle, we went out for lunch. I suspect that our lunch date was memorable to others besides me.

Matt struggled to order at the counter. He couldn’t see the words written on the stylized menu hanging above the counter. When he was offered a paper menu, he couldn’t process the words he read. A line began to form behind him and I offered help, which he didn’t want. I didn’t ask again–I didn’t want a (bigger) scene. He asked the waitress questions that didn’t quite make sense, and she appeared bewildered as she struggled to provide an answer.

I remember the debate that warred within my head. Whether I should somehow let the waitress know that Matt was struggling with cognition due to brain cancer or whether I should keep that information quiet and let the scene play out. It’s an internal debate I’d had many times before—with the plumber and electrician—and one I would have many times again. Every time, I chose to let the scene play out. In looking back, I can recognize the complicated web of emotions that fueled this choice. Denial—if I didn’t say it out loud, maybe it wasn’t real. Uncertainty—maybe I was simply being too critical. Loyalty—Matt was trying his best to feel normal and I couldn’t take that away from him. And mostly, a sense of protectiveness.

Around this time, probably even earlier, I noticed that the way strangers looked at Matt had started to change. Where, in the time before, strangers would warm to Matt instantly—his quick smile and flash of humor—now there was a wariness in the way they looked at him, the way they observed the scars and strange bumps on his head and the almost removed manner in which he observed his surroundings. Matt wasn’t the same as he’d always been and the world didn’t approach him the way it always had.

It was a change I hadn’t expected, hadn’t been warned about, and didn’t know how to approach. It was a change I hoped Matt never noticed.

Months into Post Hope, I returned to that restaurant and saw that same waitress. She flashed the same smile and I couldn’t tell whether she’d remembered the last time I’d come in or not. If she remembered my husband and his strange behavior. She didn’t ask about Matt and I was spared from having to tell her—as I’ve noted, there are still words that I cannot say, cannot even begin to type out.

But if she’d asked, maybe I would have found the courage to tell her how much her patience meant to me that day, how the fact that she didn’t become agitated as the line behind Matt grew was an overwhelming kindness.

One year ago today, Matt and I had lunch out, just the two of us, and it wasn’t without dramatic incident. It wasn’t without a reminder that brain cancer had infected our life and our marriage. But it was almost normal thanks to a stranger who maybe understood everyone is fighting his own battle, everyone has a story, and for that reason, everyone could use a little extra patience.

December 14, 2017: Treatment, Not Diagnosis

One year ago today, Matt was supposed to have a MRI of his lower spine at 9 a.m. The MRI had been scheduled after a handful of suspicious episodes involving Matt’s bladder and bowels that occurred while Matt was an in-patient at Kessler.

I’d been dreading that appointment. Because of what it might show, obviously. And because of the timing. I wasn’t sure how exactly I could get G and H onto the bus at 7:40 and Matt into the city for a 9 a.m. MRI. The timing just didn’t work.

Ultimately, I’d been worried about timing for nothing. The MRI was deemed unnecessary and cancelled. When we’d stopped by the doctor’s office on December 12th, the doctor had determined there was no need to put Matt through extra testing. Those suspicious incidents hadn’t occurred again. (I told the doctor about concerning behavior I noticed at home, but I admitted, as always, that I might be the crazy wife who catalogued too many details.) More relevantly, the MRI was cancelled because all the other tests he’d undergone—the thyroid biopsy, the bone marrow biopsy, the PET scan, the bone biopsy, had come back with the same result. Inconclusive.

Whatever was happening with Matt was a mystery and the doctor said it was time to focus on treatment, not diagnosis. In looking back, this decision seems crucial. It’ll be another five weeks before we find the tumor in Matt’s lower spine.

We did as the doctor ordered. On December 14th, we dutifully went to Matt’s eleventh day of whole brain radiation. I excitedly counted down the number of commutes remaining—four. Four more drives into and out of the city. The radiation oncologist told us that if  we were going to see any benefits at all from the whole brain radiation, we would begin to see those positive changes anytime between now and within a week after radiation was over. After that comment, I texted a friend and told her I thought, maybe, I was beginning to see some clarity in Matt’s cognition. Maybe it was my imagination, fueled by desperation and suggestion. Maybe simply we’d had a couple of days without that snap of anger and it was easier to breathe. But I think, maybe, something else was behind my text message.

On May 28th, I wrote that there are parts of our story that I don’t quite know how to share yet because I want to preserve Matt’s memory. Then, I’d been thinking of incidents not unlike the suspicious episodes at Kessler involving Matt’s bladder and bowels—episodes, which, I can continue to gloss over for another few weeks. But now, so close to that day when hope extinguishes, after a week of posts relating to Matt’s anger, I realize there are stories that are harder to share. It’s (maybe unsurprisingly) difficult to share stories about Matt’s anger without feeling as though I’m staining his memory.

I want only the Matt who cracked jokes, and ran a company, and thought we were the best couple ever to exist in everyone’s memory. To exist in my memory.  But I also want to tell Matt’s story, the whole truth. It’s the goal I committed to all those months ago and also the only way I know to make peace with my own dizzyingly exhausting memories, to eventually help G and H understand their own dark memories.

I simply  have to trust that anyone following along knows what I knew on these days. The anger wasn’t his. So much of Matt was gone. So much of Matt had become tumor and medication. The husband, father, son, brother, friend, had largely vanished. But not completely.

An ember of Matt remained for longer than any doctor would have guessed. In looking back, that ever glowing ember was the reason it was easier to breathe on December 14th. That ever glowing ember was the reason we held onto hope as long as we did. That ever glowing  ember—not the tumor or the doctors or the anger—is the heart of this story. That ever glowing ember is the memory worth preserving from these dark days.

December 13, 2017: A Private Talk

In yesterday’s post, I alluded to G and H, but I haven’t written much about their experience, how their father’s cognitive decline and his Dexamethasone induced anger was impacting them.

On December 13, 2017, I was doing my best to protect G and H from seeing what was happening with Matt. The night we (Matt and I) argued about scissors, I put on a movie for them to watch upstairs so they didn’t have to see or hear our argument. I made sure their routines were completely unaffected by our medical schedules. They didn’t miss an after-school activity, a homework assignment, or a playdate. Their Chanukah presents were wrapped and their class parties were planned.

But the invisible monster that had grown claws and fangs had grown too large to hide despite my best efforts.  That cruel transition that had started so many months earlier with Matt napping while the kids asked to play had taken on a new element.

One year ago today, after lighting the second Chanukah candle, G pulled me aside and asked to speak with me in private. A private talk, she called it. We went to her room and she pointed to a framed photo of her and her father—the same one that now holds a position beside the “World’s Best Dad” trophy—and she told me she was looking at the picture and was sad that her daddy wasn’t the same anymore. She said she missed the daddy who could play and was nice.

I hugged her, my heart breaking into an infinite number of pieces for her, and told her I missed him, too.

The daddy who could play: Matt struggled to find a way to interact with G and H. The day before he’d tried to help H set up a new toy, but for some reason—processing issues, cognitive issues—simply couldn’t. He’d ended up sitting on the side, watching H struggle to put the toy together on his own. H had been in tears until I’d finally stepped in to help.

Why hadn’t I stepped in earlier? Because I knew Matt wanted to set up the toy with H. I couldn’t truly understand why he didn’t set up the toy—what in his brain was failing him—but I knew he wanted to. The intention was there, and I wanted to give him the chance. But I didn’t want to distress H. The challenge was to find that balance. The heartbreak was that balance might not have existed.

The daddy who was nice: Matt’s anger—induced by Dex and the tumor pushing on so many parts of his brain and maybe, possibly, his situation. Matt’s anger found its way to G and H despite every effort to protect them, to step in and redirect his anger onto me.

When Matt was clearer, on his good days, he could recognize what was happening to him. He could recognize that not only was he confusing words and struggling to process questions, but that his anger was severe and uncontrollable at times. In those clear moments, I could ask him what would help him calm down the next time he grew angry and we discussed what might work to ease that rage. He didn’t want to be angry. But in the moment, when he wasn’t clear—the anger was its own force.

One year ago today, I tucked G in and swallowed tears and guilt—I’d wanted to protect her and H. I’d wanted their childhood to be easier, nothing but sunshine and smiles. And it wasn’t. All I could do was remind her Daddy didn’t want to be angry and he did want to play; his brain was betraying him and it wasn’t his fault. It wasn’t her fault, either. I reminded her that we were seeing the best doctors and we had a lot of reasons to hope things would get better.

Yesterday, G wrote a note to Matt (which she allowed me to share). She told him about sleepover parties and basketball practice, and told him there was so much good stuff going on now.

G’s and H’s childhood isn’t simply sunshine and smiles. From the beginning, that might have been an impossible goal, anyway. But their childhood isn’t all grief and heartache either. It’s a mix of everything. Sunshine and smiles and grief and anger, heartache and happiness, laughter and loss.

December 12, 2017: A Last Photo

December 12, 2017 was relievedly calmer than the day before. Matt’s cognition hadn’t improved but he wasn’t agitated. He accepted that he might be confused about certain topics and made efforts to understand his confusion, which helped me understand his confusion, which made it easier to communicate. That missing layer of anger changed the entire shape of the day and proved that we weren’t broken, despite it all.

December 12, 2017 marked Matt’s ninth day of whole brain radiation. By this point, I’d learned the exact time Matt and I needed to leave in order to skip morning rush hour but beat the George Washington Bridge construction, which closed off a lane of traffic everyday after 10:30 a.m.

We made it to radiation and back to New Jersey without incident. Presumably, we stopped to pick up lunch, came home, ate, and, while Matt napped, I took care of the things at home that needed to be taken care of. All without incident. Which meant it was a good day.

That night marked the first night of Chanukah. We lit the candles and exchanged gifts. G and H had purchased gifts for Matt at their school’s holiday boutique and had been looking forward to presenting their gifts to him. G gave Matt a small trophy with the words “World’s Best Dad” printed onto the face of the trophy. After we exchanged gifts, I took a picture of Matt with G and H. It would be the last photo I’d take of Matt with his kids.

The text messages from one year ago today don’t reveal much about the day. My imperfect memory fails me, too. I don’t remember December 12th, our last first night of Chanukah. If I’d known it would be our last first night, I might have paid more attention—but, as I’ve noted, hope is a double edged sword in that way. I have only the photo I took. But that photo tells the story, the old idiom—a picture is worth a thousand words—proves true.

When I look at that photo, I have trouble seeing Matt. There are the obvious physical changes he’d undergone. In the twenty months since his surgery, he’d earned too many scars. A scar for the tumor removed on June 8. A scar on his eyebrow for the fall on October 1. A scar and a severe bump where the shunt had been placed on October 5. His skull was dotted with small bumps where mini clusters of tumor pushed. Steroids had made his face puffy—a side effect he’d never been afflicted with until now.

But, the reason I don’t see Matt when I look at that photo goes beyond the obvious changes. The reason I don’t see Matt is because his smile isn’t his; it doesn’t reach his eyes.

I don’t know when that happened, when his smile stopped being his. This story will apparently not reveal the last time Matt’s smile was his own. I don’t know why his smile stopped being his—whether the muscles in his face failed him or something else.

I know only that despite all we’d been through, one year ago today, G and H found a way to smile. I know only that when G looks at that trophy, which now sits in her room on a chair beside a framed photo of her and her father, she sees loss, but also, hopefully, remembers the immeasurable love that existed in that moment and so many others.