Missing You So Much

I miss you so much, my love. Sometimes I can't stand it and I have to remove myself from the kids, lie down on the floor downstairs, and cry into the carpet. I'm just having one of those days today. I can't make small talk, I can't pretend things are OK, I'm thinking about you every minute.

Six months ago we were at an appointment as things were getting really bad. Regret hangs heavy over my memory of that day. I should have asked more pointed questions, pushed harder, advocated better for you. I wish I could have done better by you to ease your way out of the world. I wish I could have been better for you. 

I miss you so much. I love you so much. I am so sorry. MissYouLoveYouSoSorry. A million times over.

My heart has been waiting for you to come back to us even as it misses you with every beat. I don't know what to do without you. You made everything safe and fun and special, and now everything is duller, desperate, less than, lacking, missing. You wanted us to be happy and I am trying hard, but sometimes I have to give in for a little while. I can't force it.

I am so tired, Chris. It has been such a long slog over these years. You obviously know better than anyone how hard it was... You always advised me to go to bed and get a good night's sleep on the worst days. Always wise, you said that everything is easier when rested. You loved me so well that I have those memories to go back to. Thank you.

Tomorrow will be a new day. I wish you could be here to greet it with us. I'll try to make the most of it.

Phoenix, Puppying Us Forward

I want to put some thoughts down about Phoenix, but sharing them feels a little silly. No matter, I've gained a lot from being open in this chapter of my life. Here goes.

I've always wanted a dog, but there hasn't been a good opportunity. Grad school had too many long hours in lab and then once I met Chris, he was so allergic to dogs that a canine companion was out of the question. In the last year as it became clear that Chris would die, every now and then a thought crossed my mind - when he is gone, we will get a dog to help us heal. It was not something I talked to Chris about just as I tried not to burden him with most of my concerns for the future. In general, I tried to focus on the moment and not make any more plans for after than necessary. Chris had enough to worry or feel bad about and there would be time enough later. But, the idea was in the deep recesses of my mind. Sometimes in the wee hours of sleepless late December nights when I felt absolutely hopeless and alone, the thought would bubble to my mind's surface and wink there for a minute like a tiny string of holiday lights before I extinguished it. Even in those dire, desperate days, it was nearly impossible to fathom that Chris would actually be gone and I couldn't sit with that thought for long.

And of course Chris did die and we had to begin to face life without him. N basically read my mind and quickly asked if we could get a dog. The three of us agreed to work together to find a dog we all liked and move forward only when we were all happy with the decision. I cautioned them that it would take time, perhaps over the summer when my classes were done. Once we opened our hearts with serious intention, though, two of us wanted our dog N-O-W. We felt strongly that we would rescue a dog because we needed rescuing of our own by our new pet, and we started visiting shelters in search of a young adult dog who was already house broken so we could adopt him/her immediately. This turned out to be much more difficult than I anticipated. Many of the adult dogs in shelters had problems that we were not equipped to handle or were not deemed good with kids or simply had too little information for me to feel confident. We started considering a puppy to build his/her training from the ground up, seeing the potential for a strong bond from the start. It took a while to figure out if a puppy could work for us and then it took a few weeks to find her (and a couple of very disappointing trips to shelters), but Phoenix was worth all of it. We found her through the Great Dog Rescue New England, a shelterless rescue organization that largely brings dogs up from the South. Many times you have to adopt the dog without meeting him/her, but some of their dogs are fostered in New England and you can visit them, which was the case for Phoenix. We saw her "baby" picture on Petfinder and put in an application. She looked sweet, and the circumstances of her birthday and rescue name seemed poignantly fitting. As our irreplaceable person was leaving this world, our canine companion was entering to help us move forward and rise from the ashes of our old life.

baby pic, maybe 6 weeks old

After a phone interview, Phoenix's foster mom sent us more pictures and a video of the puppy's mother. We got really excited and then Phoenix came to meet us at our house since the organization does a home visit as part of their screening process. We "passed" since we do not hoard animals nor fight dogs in the basement, and Phoenix delighted all of us and passed our family "test" - this was becoming reality!

We picked Phoenix up on March 28th. Within minutes of arriving home upon adoption, she saw the dog bed we had purchased for her and jumped in it, knowing it was hers. Within 24 hours, she began to run to me when she was scared. The kids marveled over how fast Phoenix recognized I was the boss and her "mom." She slid right into our home and life, instantly becoming a member of our family.

Going home, about 10 weeks old

This is my bed!

Now that we know her better, Phoenix is an excellent pup - mostly friendly with dogs and people, not very barky, snuggly, and smart. She has made huge strides in house training, and she knows many commands and chooses to follow them sometimes. She hates rain and cold, and absolutely loves the sun. In fact Phoenix will roll on her back in the sun in favor of walking! She used to hate going for walks leaving from our house, but has recently gotten much better. Phoenix is my trail walking buddy, tromping around the local conservation land and state parks with me and sometimes my friends. We took her to baseball this week and she was the model dog, I was so proud! Phoenix is growing quickly and resembles a colt or black lamb with her long legs. Now that the neighbors have a six pound puppy the same age, I call Phoenix my giant puppy for she is enormous in comparison. Our pup was listed as a lab mix, but she may not have much lab in her. It doesn't matter what breed(s) she is, we have fallen in love with our houndish mutt, never to turn back.

near baseball fields

at local conservation land, the tree cluster that brings Chris to mind

she's been to work with me

she looooooves the sun

getting to be a long-legged regal girl

Phoenix is working some puppy magic in our family. Although she could never fill it, she provides a welcome distraction from the vast void left by Chris's death. It's not that we aren't sad or don't think about Chris, it is that Phoenix puppies us gently forward in this new chapter. Why do I use puppy as a verb? It just fits. Phoenix puppies around in the yard and amuses us with her antics - frantic chasing after a toy, lazy ecstatic rolling in the sun, pulling out her play stance on us, herding us, prancing away when she's got something she shouldn't have. She puppies around in the kitchen putting her paws and nose up where she shouldn't, poking her head on our legs to be petted, sniffing around for food, licking the floor where someone spilled, chasing her tail. Phoenix puppies around in calm ways, too, sitting next to the vent where warm air comes out and slowly walking to her beloved dog bed to lie down late at night. Best of all she puppies our broken hearts by greeting each of us with a waggy tail and excited wiggles, making us laugh with her funny woofs and hound howls, cuddling on the couch, and snuggling at night in bed with each of us in turn. She is indeed our therapy puppy.

bedtime hugs

boy loves dog, dog loves boy

let's face it, she's my buddy

More than a few people have said to me that Chris would be very pleased about Phoenix joining our family. I wholeheartedly agree - Chris was crystal clear that he wished us happiness. It was hard to imagine how we could ever find those bluest of blue skies and better things that he emphatically wanted for us, but Phoenix fits the bill. Chris would get a huge kick out of the humorous situations with Phoenix and gently rib me when I complain about bad dog behavior "this was your idea you know." If Chris could somehow see our new smiles and snuggles I know it would bring joy to his heart, too. He would know we have not replaced him, we never could, but instead we added new love and he would see that it is helping us show our best selves to each other. I think he would be proud of us for taking this step.

I feel unsure a lot of the time in this time of adjusting to Chris's absence and being single. Making decisions without my copilot is hard. This dog decision was, too, but because Chris was so allergic to dogs, it felt appropriate that I handled it on my own. There were a lot of questions to wade through. Could I handle all of the work as the solo adult on top of single parenting two children? Would I have enough time to adequately tend to a puppy (and later, adult dog) with my job and our lifestyle? What would the expense be like? How would we manage vacation? At some point I finally came at it like this - I don't get to have my husband anymore and the kids don't get to have a living dad, but we CAN have a puppy. It's not rocket science. I handled much harder and weightier things in the last two years, I can manage this. People do this all the time. So I basically closed my eyes and leaped, and it turned out to be the best decision I could have made. And, I did it all by myself. As it turns out, I am quite capable of doing a lot of things solo. Phoenix is puppying me along in my journey to believe in myself, try new things, and be more open, and she puppies me to help bear my grief. I think the kids feel the same way. I sure hope they do.   

Health Story Collaborative Healing Storytelling Session

So I did this thing tonight. It was not something that I felt comfortable about as it approached, but it was an event I'll remember for a lifetime. I was offered the chance to work with Health Story Collaborative on a different project. The idea was to work with a medical student to craft a narrative of our story and then present it in a live "healing storytelling" session with three other people and an audience of invited guests. Now writing has been a balm, but the talking part, well, I'm still figuring that piece out. Balance has not yet been achieved between saying too much and completely avoiding the elephant in the room. Add to that I'm an introvert, so public speaking isn't my favorite thing. Of course that is unless you need an extended lecture on the intricacies of SN1 vs SN2 reactions, then I can deliver with enthusiasm and a PowerPoint presentation complete with (funny to me) illustrative YouTube videos!

The session tonight was amazing, and not only because I got to tell our story to a captive and super polite audience, but because the stories of the other three participants were incredibly moving. They were engaging, sincere, brave, one really knew how to build in suspense. Some storytellers even brought props! I did not... What could I have brought? A picture of a bad brain MRI lit up with tumor? (We have some of those downloaded from Chris's phone but I do not choose to look at them.) Seriously, the event was transformational due to the human connections in the room between strangers. I'm incredibly grateful that I had the chance to participate and attend, and for my special guests who came to listen. 

I'm dropping the written form of my narrative here. It was different at the event because I tried not to read from it and also I tried to respond to some points that I thought about while listening to others. In some ways it was probably better in spoken form and in some ways I wished I would have just read the thing. It hadn't been the best grief day and I thought I was going to cry my way through it, but it ended up OK after I regained my composure early on. 

This is for Chris, and this is for me. It's also for the kids and the Davie and Colby families who lived it with us but had different perspectives. It's also for every caring friend who has supported us along the way and wanted to help/understand; I haven't always known how or when to share effectively. This is an attempt. 

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Before it all began, we were just regular people, living our quiet life and growing into a marriage. I often shake my head in disbelief that something as dramatic as a brain tumor happened to such a boring couple. You see, we met in a hotbed of nerd-dom, MIT, in a graduate program for organic chemistry. I had come from a small college and felt behind academically, and most of my peers had come with serious relationships while I knew nobody. As I struggled to find my way, I noticed Chris. He exuded calm and kindness in a competitive, charged environment. After a helpful prod from a mutual friend, I summoned the nerve to ask Chris out for a visit to the Harvard Museum of Natural History on our day off from lab. He accepted and asked me to lunch the day before our date. He surprised me by being funny and talkative, and we hit it off. Our time at the museum was almost magical. As it was about to close, Chris and I entered the Earth and Planetary Science room full of minerals and rocks. It was dark outside and the display cases of gems seemed to shine brightly in contrast, and I was also shining with happiness. We extended our time together with dinner, then again with coffee. I felt lucky.

We bonded quickly over our shared interests in organic chemistry, teaching, and family. Unlike most of our peers, Chris had a rich life outside of school, full of family and friends. Rapidly our separate worlds became entwined. We were a team: best friends, partners, each the biggest supporter of the other. He did not ask me to marry him, we decided together. He did not surprise me with a ring, we chose one together. We turned to each other to debrief about work, to discuss our worries, to make plans. We didn’t need much outside of our private world.

In 2007, we were three years into our marriage and everything was just taking off. I landed my first “real” job, we bought our house, we had our first child Nathan, and we turned 30.  On the last day of 2007, everything turned upside down never to quite right itself again. We were in the Midwest visiting my family, headed to a New Year’s Eve gathering. Chris, luckily not driving, began acting strangely. It was the shock of my life to see my husband unresponsive and in uncontrolled motion, experiencing what I would later learn was a grand mal seizure. I fished Chris’s cell phone out of his pocket and called 911 in a panic. At the hospital, Chris was given anti-seizure medications and sent straight off for a CT scan. Soon after, a clearly experienced doctor broke the news - the seizure was caused by a mass in Chris’s brain. In my shock, the only thing I could ask was, “is it big?” The answer was not encouraging; it was “fairly good-sized.”

Time seemed to unfurl differently after that. Moments blended together in a haze of shock. We flew back to Boston, Chris slept on the plane with our son napping across our laps. My mind was buzzing with white noise, there was only one thought that stood out with clarity – what is going to happen? There would be no quick answer to that… 

January was a dark, confusing time as we chased all over the Boston area in search of the right medical team. Finally, we landed at MGH. Chris had an aggressive, awake craniotomy on one of the longest days of my life. The rest of the year was a dark blur of a difficult recovery from the surgery, daily radiation treatments, cognitive rehab appointments and a terrifying uncertainty. We also had a perplexing diagnosis for Chris – low grade glioma. The doctors were absolutely clear: there is no cure, the tumor would come back and be more aggressive, but the prognosis was that Chris would likely live for 10-20 years.

At first the disease surveillance scans were frequent. Gradually the time between them lengthened as they came back stable. As partners, our shock turned to coping with a long-term disease. We took things one day at a time, waking up, readying our son for daycare, working. When one of us had a particularly bad day, we learned to get through it by staying in motion. Vigorous house-cleaning, raking the yard, cooking on the grill – these things provided helpful distractions. Through it all we had each other. We talked about everything as we always had, but we became even closer. Slowly, our life did return to something resembling normal, but the undercurrent of wondering when the tumor would return was always there. After a couple of years, the tumor began to feel surreal and we discussed this endlessly. How could life feel this normal? Did anyone else understand that we were waiting for the other shoe to drop? There were no days that Chris did not think about dying and no days without the incurable tumor crossing my mind, but there was still work to do, our son to raise, dinner to fix, and bills to pay.

This long-term, terminal diagnosis threw a wrench in our family plans. If we hadn’t already had a child, perhaps we would not have chosen to bring children into the situation to avoid the future pain of loss. But, our son was already on this path with us and we had always wanted to have more than one child. We interrogated the doctors about genetics and felt assured that the kids’ risk would not be higher. We “just” had to reconcile the idea of a new baby with a terminal brain tumor… Over time, “no” gradually turned to “yes” for Chris, and neither of us looked back. Our second pregnancy brought a sweet joy. The brain tumor gave us a deep appreciation for this chance at new life. Our son was thrilled when he learned he would be a big brother! One day in the middle of a science seminar, I looked down and smiled at my black and white patterned shirt wiggling in time to the first palpable baby kicks. The day we found out the baby was a little girl, Chris and I were both overjoyed and marveled at our great luck to parent a girl along with our boy.  Just before she made her entrance to the world, Chris and I slowly walked the hallways of the hospital, pausing frequently for contractions, Chris supporting me as he always did. Despite the pain, I remember thinking how improbable this moment was in light of his illness, and trying to etch it in my memory. As she was born, Chris played his favorite song The One Who Knows and we both shed happy tears. We delighted in this little girl, knowing that nothing about life was guaranteed and still, here she was somehow.

As our family expanded to four, the richness of life also expanded. Chris reveled in being a dad – he was funny, always able to diffuse difficult moments with a joke. He was kind, quick to enfold his children in hugs. Chris grew professionally, becoming a leader at work. For several years life was a beautiful, normal dance of “do you need to leave early this morning, I’ll pick the kids up tonight, can you grab some milk on the way home, do we have plans this weekend, let’s go out for pizza.”

That is, until the tumor came back. It’s interesting, when I anticipated the recurrence, I always thought it would be instantly devastating, like falling off a cliff. Instead, we found that recurrence was gradual but progressive. It happened like this: Chris experienced a slight uptick in focal seizures in the months leading up to his annual MRI.  Instead of the usual “looks good” post-appointment text, I received one that just read “appointment over.” Chris reported that there was an area of concern that could be tumor growth. A biopsy revealed Grade 3 tumor, more aggressive than before, but still, Chris was himself. We were lucky in that respect. He entered a clinical trial and chased all over Boston for special MRI scans and long hospital days, all the while keeping fastidious track of cycle days, medications, and symptoms. We were worried, but we were doing something about the tumor.

Things went smoothly, until the awful day Chris's clinical trial doctor popped her head in the exam room to exclaim that his tumor had shrunk by 30%, but soon came back to say no, sorry, there was a mistake in the software measurements. The tumor had actually grown so much Chris was ineligible for the clinical trial.

After four months of normal time on Temodar treatment and a stable MRI, Chris had a grand mal seizure once again. The dread of the next MRI scan was sickening, and it brought worse news than we imagined – not only was the tumor growing but it was also infiltrating a second area. Another biopsy revealed that the tumor had progressed to glioblastoma. But still, Chris was himself, working on his laptop not 48 hours past brain surgery.

But then, Chris declined suddenly. He began having lengthy focal seizures, his vision deteriorated, and reading was problematic. He went on emergency radiation treatments and last resort Avastin infusions. After a whirlwind of daily hospital trips, we had to wait and watch how the tumor responded.

We were on borrowed time. We did unpleasant things: estate planning, transitioning all of the bills to me. Chris showed me where the water shutoff to the house was and where to find manuals for the lawnmower and snowblower. Those discussions about how to carry on without him were excruciating. Chris’s main concern was that the family would be taken care of, and in light of the painful fact that he would soon die, he did everything he could to ensure it. Most importantly, we tried to be present for each other and the kids. We noted how difficult it was to “live in the moment” for an extended period of time, but we tried. We enjoyed simple moments, knowing that there would not be many left: walks together, date lunches, family outings, time at the park, beach trips. Chris did not feel the urge to check off an ambitious bucket list, but rather he treasured the kind of togetherness that can be so easily taken for granted.

All the while, we braced for the worst. For a few months, it didn’t come and we started to muse over the fact that it had not happened. Summer turned to fall before the tumor grew, but still Chris did relatively well even after we received this news. Our hearts were full and breaking as we fit in lots of lasts – last Halloween, Chris’s 41^st birthday, trip to the Midwest to see family, Thanksgiving. As the holidays approached we knew that if Chris made it to them, they would be the last as a family of four.

As we were preparing to leave the house to pick out a Christmas tree, Chris had a grand mal seizure. Just as he came out of it, another started. I did my best to stay calm and administer medication, but then a third seizure started. He was taken by ambulance to the ER and almost died from respiratory depression. Somehow, Chris made it through. We were lucky. We had not been ready to say goodbye despite all of our preparation.

Chris came home by ambulance on hospice services. It was a terribly difficult December as his right side weakened, seizure activity increased, the number of medications was overwhelming, and the end was drawing close. We set small goals, trying to make it through Christmas and have a nice family time. Somehow we did, but afterwards Chris was less peaceful and I could no longer care for him well. In our past discussions about this end stage we had always prioritized Chris being at home but realized things could get out of hand and a hospice facility might be needed. Chris had wanted to shield his children from the worst of his decline. The moment arrived when he felt he should not be at home and I agreed.

On yet another difficult New Year’s Eve, we got word mid-morning that a bed opened at a hospice house, and Chris left our home by ambulance, just a couple of hours later. To say it was hard to watch him leave doesn’t begin to touch the emptiness of that moment. As he was loaded into the ambulance, Chris lay on a gurney facing the front of the house we bought together and raised our family in. I often wonder what was going through his mind. Was he desperately sad? The kids and I had to watch him leave, knowing he would never return to us, and we cried together for a few minutes after he left. My solitary journey to the hospice house was marked by shock that this was actually happening. Despite my wanting time to stop, Chris faded over the next eight days. He was mostly peaceful, always loving, and truly serene in the end. When he could no longer speak, he telegraphed his love by winking his good eye slowly several times. Chris died on January 8^th.

Chris’s brain tumor changed the course of his life and ended it early. It shaped mine, too, and that of our children, in ways that we are only just discovering. Telling this journey is something that helps me process everything. But, Chris was so much more than this terrible cancer. Before the tumor was discovered Chris already embodied gentleness, loved a good laugh, was whip smart, always kind, and steadfast in his love for family and friends. These things did not change in the face of terminal illness. If anything, Chris doubled down on the way he lived knowing his life would not be a long one.

Now, Chris is gone and I’m no longer dreading his death but I’m desperately missing and loving him in his absence. I am left with a hundred thousand memories to carry as my life continues without my partner. I move forward reluctantly but still, I move forward. I am learning about myself and my capability as an individual. When things seem hard, I remember Chris’s unwavering opinion that I could do it, whatever “it” was, and I remember how he managed so admirably under his impossible circumstances. On my better days I focus on the feeling of being lucky. I was lucky to know Chris, to learn from him, to love and be loved by him, and to share a life with him. I told Chris before and I will say it again now, in a heartbeat I would do everything all over again with him.   

Looking Straight On

Time continues to tick by. I've lost track of the exact number of days and weeks since Chris died, but four months is coming right up. I suppose it has been enough time that using months to mark the passage of time is appropriate. Inevitably that will turn to years if my health remains good as well as my fortune. It still takes my breath away that he is gone and not coming back. At the same time, we are functioning in the stark reality that Chris is not here. That dichotomy was confusing for a while and I would berate myself for not being able to be stable in a perspective, but the oscillation between disbelief and acceptance happens with enough regularity that I'm starting to get used to the pendulum swings. It would be an interesting psychological experience to analyze if it only wasn't mine...

I haven't written here much lately but not for lack of reflection - much of the time I am lost in my memories and thoughts. Mostly my writing efforts have been focused on a different project with Health Story Collaborative. This has two parts, a written narrative of our experience and a spoken healing storytelling session later this week (this is not my wheelhouse so I'm nervous). I'll post my final essay here when it is ready. It's an attempt to tell the arc of the whole story in about 2000 words. I had 3500 in my first draft and it didn't treat many of the events and feelings that I could have written about! Crafting it to make a vivid, engaging story is a different exercise than what I have been doing here for the most part, and it has been a valuable, yet draining, undertaking. I'm working with a medical student who is my editor and she has been immensely helpful and will attempt to cut it down with me. The struggle is finishing it off because the story itself doesn't feel complete. I am not inclined to tie it up with a nice shiny bow of optimism, and the trajectory of where I am now headed is not at all clear to me anyway. 

Forget the trajectory, where am I now???

I have been extremely busy. Both kids are active in town baseball and so we are at the fields almost every evening. This disrupts working, dinner, homework time, and basically everything. Until spring ball season started, we were not that busy with activities and it wasn't terribly difficult to manage kid logistics solo, but now it feels like I am over my head in the challenges of single parenting. Then we have the other stuff. Orthodontic mishap? I'm on the hook. Septic system pumping? Yep, that's me. Family share day at the elementary school? No other parent option to go, must rearrange my meetings. Car service? Well I'm the only one driving. Estate dealings? Oh for goodness sake's that goes on and yes that's my problem.

But, all of that is just stuff I'm doing, not the real status of where or how I am. This is the situation - I could easily just get consumed by doing all of the things and stop processing what happened. In fact, I do that for days at a time now. Sometimes I tell myself it's just unavoidable, life is so busy as a solo parent! There is an element of truth to that. I have never needed to balance so many things before. Under the surface, though, I feel myself avoiding something. I don't want to look at Chris's death straight on. When I do, it's too hard. Too gut-wrenching. Too sad. Too hopeless. Too damaging for my functioning. Just as you are not supposed to look directly at the sun during an eclipse, my unacknowledged-until-now rule is to guard against the direct confrontation of Chris's death to limit the emotional setback.

I ran into a fellow mom friend at a baseball game. She was kind and asked me how I was doing, saying she knew that Chris and I were always together at the games and just always together in general. She asked if I dreamed of Chris or felt his presence. It was an interesting conversation and I appreciated her taking the risk of going beyond the surface. The truth is that I do not dream of Chris often. The few times I have dreamed of him have been accompanied by a brutal smack of reality upon waking up to find him still dead, and those mornings have not been easy so I don't consciously wish to dream of Chris more often. I accept whatever dreams I remember, having no more control over them than anything else in life. I also do not feel his presence in any way. That is not to say I do not feel his love, because I do. Chris's memory and love lives in my head and my heart, and his love lives in this home. But his actual presence, no.

Only a handful of times have I thought to text Chris or tell him something for real. I think most bereaved people do this frequently and I can understand the tendency, but Chris's decline meant that we gradually lost the old ways of communicating while he was still alive and I got used to not being able to reach out and get a typical response. There was one time when I had an instinct to tell Chris that so-and-so reached out in a surprising way over his death, and then I laughed over the nonsensical nature of it all. Recently I had a flash of an inclination to text Chris when I opened N's math placement letter, and again when J got her first hit in a baseball game. But these are the exceptions, mostly I do not have to remind myself that I can't just reach Chris by phone or email or a conversation anymore.

That said, I still talk to him in my head all of the time. I can't really explain, it's not him in the old sense where I could expect a back-and-forth, it's the memory of him. Apparently a partnership doesn't end quickly. One half is gone, but I can still try to send my messages to him through time and my neuronal circuits. I am sorry. I didn't understand. I wish I could have done better by you. I miss you. I miss you a thousand times over. I love you. I love you to wherever you are and back, and a thousand times over.

The finality of Chris's absence is something that I muse over when I do look at his death straight on. When I force myself to confront it, memories of Chris from the last two years astound me. He knew. He had no illusions that he would come back to be with us in another form. He voiced his anguish over disappearing, never to find out how the kids turned out. This lit a fire under him to make the most of what time he did have. Chris talked with the people he cared about, gave the hugs, took the pictures, made the memories, left behind recordings telling us his wish that we would be happy. When others could not bear to admit he would soon be gone, including myself, he still did those important things. Chris always looked at his situation straight on. He was a magnificent and brave person.

I am trying so hard to do this, whatever this is, right. I want so much to hold Chris in my heart lovingly, gently, and peacefully, because he deserves that. The problem is that I miss him so desperately when I look at his loss straight on that nothing about it is peaceful, and nothing feels right.

Cry, Cry, Cry

It turned into quite a beautiful spring day. We spent a lot of time playing in the yard with Phoenix, yard games, basketball, and a few tasks. Weekends still feel off without Chris, but I'm doing my best to get through them and provide some fun for the kids while getting the usual jobs done. One thing that I've gotten used to doing that Chris always took care of is packaging up the trash and recycling to take to the town transfer station. The dump closes at 6pm on Saturday and it's good to get there before the last second rush. I wanted to get rid of the trash since Phoenix is very interested in the full trash bags on the porch. As the afternoon proceeded toward evening, I loaded up and J helped me with the trash and recycling, with the bonus of then going to the Swap Shop. This is a place where residents can leave items they are done with but could have use for others, and people can pick up what they want. J loves finding trinkets at the Swap Shop and happily poked around to see what was there. As she looked for treasures, I idly rifled through a box of CDs. I did a double take as I saw the album Cry, Cry, Cry. As I often do, I became lost in my memories.

Cry, Cry, Cry is the name of a folk group that performed in the late 1990's, comprised of our favorite Dar Williams and two other singers Lucy Kaplansky and Richard Shindell. We didn't know much about this group until last year. Chris was always on the lookout for Dar's performances, and he saw that Cry, Cry, Cry was getting back together for a tour and had a performance in Northampton on 3/31/18 (the night before Easter). He bought tickets, reserved a hotel room so I wouldn't have to drive back late at night, and asked our niece to babysit overnight. It was our last overnight alone not counting the hospice house of course. 

We arrived in Northampton well before the show, checked in, then wandered around town to find a place to eat. We had been to Northampton to see Dar several times, at least three other times in this town, the first at the Calvin Theatre and then at the Ironhorse Music Hall a couple of times. That night was a relatively nice evening for the time of year, and the streets were full of people similarly enjoying spring. We headed for the Northampton Brewery but found it absolutely packed when we arrived. We shared a laugh because this was not the first time we had been shut out of this place before a Dar Williams concert. We tried to find a different restaurant but many were jammed with people and the show time was approaching. Finally we ended up at Amanouz Cafe, a Morrocan/Mediterranean place. As I often did in the last year, I ordered for both of us because Chris struggled to get the right words at times and it made situations like ordering stressful and awkward. On this particular weekend, Chris's word-finding issues were getting more pronounced and he was having a lot of vision problems. We were worried, but we enjoyed our time together.

The timing ended up to be perfect for the show - the doors were opening just as we arrived at the theater. In a turn of coincidence, we ran into some parent friends from Southborough. I remember being stressed because in our small talk, Chris could not come up with Dar Williams' name, calling her "the woman." Alarm bells were clanging loudly in my head. This was not like him. Dar's music was so special to Chris that it surprised me he couldn't say her name...

We took our seats and settled in together. Chris always liked to get seats close to the front for performances, his thinking being that if we were making the effort and spending the money to go, it was definitely worth it to pay more for better seats. We were on the side but close enough to really see the singers. We smiled when Dar took the microphone to speak and exchanged a look, one of those looks that couples share that convey the understanding of a lifetime together. We both were reliving many memories of listening to Dar's music and chasing around to catch her live.

We weren't familiar with the other two singers nor the Cry, Cry, Cry music, but in a way that made the concert more special. We sat back and let the new-to-us music wash over us. Chris had listened to one song ahead of time, The Ballad of Mary Magdalen, and he nudged me as the group began to play it. The song was plaintively beautiful, and the lyrics complex and interesting to think about.

The Ballad of Mary Magdalen

Chris loved the concert. He enjoyed it fully despite the worry and uncertainty of the moment in our lives. We both had tears in our eyes from the beauty of the rich harmonies and the bittersweet feeling of this maybe being the last time. In fact, it was the last time we saw Dar.

When I saw the Cry, Cry, Cry album in the Swap Shop I had to have it. I brought it home and played it immediately. As the first song filled the dining room, I remembered the feeling of that trip to Northampton. I had been so worried and stressed about GBM, the future, and losing Chris. I wish I could have set that aside and enjoyed that moment a bit better. There's no revising how I felt then, it was what it was. Now I can listen and listen, remember and remember, whenever I want. Some of the song lyrics touch off meaning out of context from the actual songs, and Chris would understand how I find him in these songs even though that wouldn't make sense to an outsider. He often talked about how he found music meaningful even if the context wasn't quite perfect for his connection to it. As I listen to one particularly gorgeous, harmonious song a repeated line makes me weep: 

I know what kind of love this is. I know what kind of love this is. I know what kind of love this is.

I do know what kind of love we have. This love is the real deal. The kind of love that lasted an entire marriage, through a crazy dramatic terminal illness, right up to the double doors when death parted us, and beyond. And beyond.  I know what kind of love this is. I am the luckiest person for having found this love. He also knew what kind of love this is, and what a gift to know that he did. I just want Chris back to draw sustenance from it with me in person...

I Know What Kind of Love This Is

There's another track that is fitting to my current state, hopefully, called By Way of Sorrow. The last of the lyrics are below. The music makes you want to tap your foot and the message is uplifting. Maybe if I listen enough I can believe that the sorrow and tears of the present are just part of a path toward something different.

All the nights that joy has slept
Will awake to days of laughter
Gone the tears that you have wept
You'll dance in freedom ever after

You have come by way of sorrow
You have come by way of tears
But you'll reach your destiny
Meant to find you all these years
Meant to find you all these years

By Way of Sorrow

A simple trip to the dump and Swap Shop gave me the gift of music, memory, and connections to Chris. I know that Cry, Cry, Cry meant something to Chris. He took a picture of the cafe where we had dinner as he did of the concert tickets. I have tucked them away in our scrapbook containing tickets and playbills from special times. I'll keep these things and always remember how special he was.

Not Wanting to Leave Chris Behind

Our canine family member was adopted 3/28 and the kids and I haven't looked back. Phoenix is wonderful! Most evenings after the kids are in bed she puts her paws up on my legs until I invite her up to curl against me in my lap. I have been known to let her lie on my chest as I read or watch tv. It is not conducive to writing, working, housework, or anything productive in a standard, future-oriented way. It's been about living in the moment with that pup and it's done me some good. The shine of new puppy life is wearing off though, or maybe it's the four potty accidents in one day that made me put Phoenix in her yard (pen) outside her home (crate) for the evening. She happily put herself to bed and I was glad. I needed to write. I finished off my last entry that was started before we adopted her, a couple weeks ago. I'm feeling something different tonight that I wanted to work on, though. Last night we went to family bereavement group and it was good. Mostly I listen to the other parents because A) I'm new and B) they are so much farther out than me. This group shows me that I'm just at the very beginning of this, with a lot of work ahead of me... I don't love that feeling. But the nudge to keep processing is probably healthy, and I know that writing for me is, too. So, here I am again.  

Yesterday marked three months since Chris died. I struggled with the 8th as it approached because it is starting to feel like a long time ago that he was here and we had normal family time. A large part of my mind is still consumed with identifying key dates and marking time in relationship to them. For example, it was five months ago today that we left on our last family trip. It was a difficult one because we fully knew it was the last time to visit MN family and our last trip, but it was still a good one. Chris and I enjoyed time alone together at some of our favorite St. Paul haunts - coffee shop, lunch/dessert cafe. I remember talking earnestly and deeply as we often did in the last two years. At other times the kids played with their cousins while Chris took it all in calmly. There was one last sibling dinner out, the energy muted a bit compared to other years. As we deplaned in Boston, Chris stumbled in the aisle as his right leg wouldn't cooperate for a minute. We knew it could mean nothing good and of course everything got worse rapidly after that... 

I do mark time since Chris actually died and sometimes still obsess over the darkness of December and early January, but I return more frequently to the lasts of the reasonably good time with him right up until November 30th. The time ticks quietly by. Five months ago we traveled as a family, nearly five months ago we celebrated Chris's 41st birthday at a favorite restaurant, had our last Thanksgiving, did our last Christmas shopping together, and enjoyed our last outing on a weekend as a family of four. Thinking about these precious times brings Chris back to my mind with vivid clarity which is a dichotomy of amazing blessing and devastating pain. I love him so much and feel relieved when I can close my eyes and hear his voice in my head, but then I have to open them up and see that he is gone all over again. It's those moments when I miss him so much it's hard to breathe. Still. Again. Whatever fitting word. The intensity of the missing has not lessened, if anything it is worse.  

Those five months since good times can be counted on one hand making it seem in the recent past, but that's almost half a year ago now... Whether distant or recent, the perception of time doesn't particularly matter. Chris is gone now. I still think of him every hour and long for him, I long for that elusive feeling of "us" that was the foundation of our life. I still love him with all of my heart, even more if that is possible. Now that I know how it all ended, I cannot believe the calm and peace that Chris lived with. Obviously I am biased, but I do not think most people could withstand what he did with so much grace. I am so deeply grateful for the love he showed under the shadow of the incredible sadness of saying goodbye. I want to debrief with him about everything that has happened. I want so much to tell him how I am amazed by how he handled everything.

Chris is gone. The world of Betsy and Chris is over. Us against the world is now me alone in the world.

I have to write those words tonight in effort to make my brain accept it. This need to push acceptance has been rattling around in my mind since I read a book that a widow generously sent me (her own memoir, Beauty in the Brokenness, by Dr. Angela Lindenmuth Marick). Her journey had some remarkable similarities to mine and I read with great interest, but her book laid clear one difference. She was able to accept quickly that her world as she knew it was over. She took off her rings early and that felt right to her. She found new love at three months post-loss and married about a year later. I'm just not remotely close to that.

I've been fighting honest, deep acceptance hard, for so long. I see now that in all of the struggles of 2017 and 2018 I could not truly wrap my head around the idea that Chris would really and truly die, leaving us behind. We prepared pragmatically and "intellectually accepted" it, but I myself could just not fully get there. Now, loving him and missing him so deeply makes me feel all the more that it cannot be possibly true that he is gone, that we are over. What we had was so special it cannot possibly fit the mold of everyday death, surely we were so close that we could escape the disintegration wrought by brain cancer. It's idiotic. It's magical thinking. It's protective neural circuits kicking in. It's a powerful force. Or maybe I'm one goshdarn stubborn person holding on with a vice grip... 

The season is definitely changing to spring around these parts. As it always does, it comes in bursts of gloriously warm weather followed by spells of cold, damp regressions to near winter. Two steps forward, one and a half back so it seems. Still, when one looks back, there has been progress toward spring. Longer days, crocuses, daffodils, mud. It would be great to draw a personal analogy here and claim slow progress in healing, but that is honestly not the case. Deep within me there is a recalcitrant resistance against moving forward because I do not want to leave Chris behind. I don't want his story to be over. I don't want our story to be over. If I could, I'd push every one of those daffodils under the soil and freeze the ground back to rock hard earth because winter was when I had him. What I can do is leave his favorite hoodie on his dresser and all of our pictures on the mantle, what I can do is remember and honor his incredible journey through the last decade. I'll eagerly be the last person thinking about him as the day draws to a close.

If I'm also the last person ready to accept that he is gone, so be it. He was here, he mattered, he made all the difference to me. We had an amazing life together, we understood each other, and we loved each other. I do not want to leave him behind, I simply cannot leave him behind just yet.  

Boss it Up and Cry

Recently a fellow widow posted a meme on social media that went something like this:

Are you going to boss it up or cry about it? First of all, I'm going to do both, says the widow.

That about sums up my life. There's just a ton of stuff that I have to do. There is no choice but to find a way to get it done. Accordingly, I have spent a lot of time bossing it up and I'm downright proud of the stuff that I've recently closed out. Case in point, I have never been so happy to write a check to the good old IRS and put a big bold check mark on my to-do list to categorize 2018 taxes as completed. I outsourced that but hey, it took work to find a good CPA and acquire some key documents in addition to the usual docs sent to me.

My new life is forcing me to be the boss. I don't feel comfortable in this role, but I'm the boss of the house, the kids, the dog (we got Phoenix!), not to mention my own life. It is so strange that it is not a team effort anymore. No more consultation, joint decision-making, or shared visions for the future. It's all there for me to steer so the ship doesn't go under, not to mention find some distant shore of my choosing. Once again, there's a tension between "having" to decide and "getting" to decide various matters. Some things are definitely have-to's (financial stuff) and some are obviously get-to's (dog, coaching baseball) but there are sometimes unexpected flip sides to both.

Despite the satisfaction and relief from getting some of death tasks done, each one brings a world of pain and a torrent of tears. So yes. I will boss it up in this new life. And, chances are, I'll be crying over my lost life and love at the same time. If I look a bit haggard, you'll know why. This is all exhausting.