Happy New Year. It was a holiday season of reflection this year.  We looked at our present, remembered our past, and tried to envision and plan for our future.  I saved my PTO and took the last 4 days of the year to play games, watch movies, and drink cocoa with my kids. We discovered some great new-to-us games — King Domino, Taco Takeover (stupid and hilarious), That’s It, and Carcassone, for example. I made my mom’s split pea soup recipe with the ham bone from Christmas dinner — delicious as usual.

Then we said good-bye to the most painful year we’ve ever experienced … and that’s about all I want to say on that since I’m in a public place right now. I don’t want ANOTHER “this lady’s crazy” sign posted by the cash register (see also, Eat ‘N Park).

I resolved to take better care of myself in 2018, and I mean that in a very not-New-Year-resolution way. Exercise — especially yoga — helps me address the stress of missing Ken and helps with the remarkably sedentary life I lead working from home. Walking to the bus, walking through the halls at work, walking the quarter mile to the bathroom in our enormous office building — all of that is missed these days in my little office at home.  It’s difficult to motivate myself but, as Ian counseled me, if I can’t encourage myself to exercise every day, then I should exercise as often as possible, which will gradually become every day. What a wise young man he is.

We had a family meeting last week. It was long and painful but we set ground rules and listened to each other and talked about where we are. And we’ve decided, after tightening our belts and pinching pennies until they cried, that it is time to sell the house.  The first task in that process is to finish making the repairs on the “honey-do” list Ken made for me. I’ve added to that list since he died of course but I’ve also managed to scratch a few things off (shout out to youtube DIY videos!).

In addition, we need to sort through all of Ken’s stuff. This morning, the boys and I got up early (ate pancakes) and started a “sort and purge” in the basement. We now have a big pile of stuff to recycle, a smaller pile for Construction Junction (Pittsburgh’s construction re-sale non-profit), and another pile of hard-to-recycle items that we’ll be taking to one of those pay-to-recycle events in March.  We’re working in 2-hour blocks because it’s very emotional and overwhelming but we’re going back down in the morning to start again.

I’m not ready to actually think about moving out and that’s another topic we’ll leave here. We can talk about that later…much later. I already had a long, wrenching, sobbing tantrum while sitting on the side of my bed. I don’t WANT TO leave — the lopsided peach tree  Ian and I planted 4 years ago that had its first crop last year (all eaten by squirrels while we watched the eclipse), —  the spring flower garden that Ian and I have worked on every Fall since he was old enough to put the bulbs in the ground, —  the deck that Ken and I used to sit on before he got too sick to sit outside. But I know that home is the memories we carry with us, not the building we live it.

AND now I’m crying…in Starbucks.

Peace.

Writing helps me think. I’m sure that’s not the case for everyone but for me, it’s calming, maybe even soothing. Right now, as I contemplate our future, I long for Ken’s counsel so fiercely that he should feel it, wherever his energy is in the universe. We’ve decided that we should follow that “no big decisions” rule that everyone talks about after a catastrophic event. Therefore, we’re not moving, period. Beyond that, no decisions have been made ….

I was going to write a #MeToo blog because I, too, have been groped, kissed against my will ….you know the stories if you know any woman.  Ken and I traveled the #MeToo route together many years ago but our attorney said that I had to want to continue working in the same job, within an organization that knew about and excused my harasser’s behavior (he’s a good guy, he doesn’t mean anything by it, he’s just “old school”). No, thank you. Also, to be perfectly honest, I was afraid that a public lawsuit would result in me being blackballed from employment in our community. What company would hire a woman who publicly proclaimed that she’d been sexually harassed by her employer?!  Ken was disappointed by my decision and he was right to be. But I’m not alone in that fear, am I?

Anyway, I will honor the person that I was THEN and the things I have learned SINCE and will try to stop blaming myself, judging my actions and my silence.

On to my question to the universe:  should I pursue the job that will undoubtedly require me to travel, especially since we’ve decided not to move? Or should I stop the madness right now and stick — at least for the short term — with the job that I already have? I can’t leave Ian in order to travel for work. There’s no question about that. So, why did I even apply for the job? Should I interview and IF I get offered the job, try to negotiate down the travel expectation (unlikely)? But what amount of travel would not be disruptive to my family right now?

I’ve been thinking a lot about this:  Another danger of a new and demanding job is that I tend to immerse myself in work. I’ve always done it — 12 hour days in the office were the norm in my old life. It took a toll on my kids but at least they were blessed with my husband’s presence.  Could our rickety foundation hold if I took this job?  I KNOW the answer to this world-bending question so why do I hesitate to act on it? Do I have the courage to believe that we’ll find a better answer out there somewhere?

I was visiting Shadyside Hospital recently and saw Ken’s oncologist. He actually saw me first and was waiting for me to notice him as I walked down the hall. I’ve been thinking a lot about him, the nurses, the oncology social worker. I sent the social worker a note recently, on the 6 month anniversary, and asked her to thank the care team. After Ken died, I couldn’t bear to visit the cancer center so I never did say thank you to all those caring folks. But it was really awesome to see Ken’s doctor. He asked about us all and we talked a bit about Ken. He told me that he continues to try, every day, to make a difference and I reminded him what a difference he made in Ken’s life and how much we both appreciated all he did for us. I think, perhaps, we forget sometimes that our caregivers are invested in our battles too.

It’s “Trunk or Treat” at the Dependable Drive-in theater this weekend. Mis-named without a doubt (since the treats are inside the vehicle trunks) but it isn’t the first time someone chose “clever” over “accurate!” Anyway, we’re taking a few of Ian’s friends. They’ll trick or treat at each car, then we’ll eat candy and popcorn while we watch a kid-friendly Halloween movie on a beautiful fall night in Pittsburgh. Today, more than anything, life is about the little moments.

Wishing you many little moments…

Today’s my birthday and I’ve been thinking about “Presents Ken has given me.” I know that makes me sound like a terrible person but just wait. It’s not avaricious in intent.

When we first met, on Carnegie Mellon University campus, we were both new master of arts students and he was a long-term employee there. That’s particularly relevant because it meant that we had a different dynamic. He wasn’t “just a student.” He didn’t study and do homework in the writing lab with the rest of us students because he worked in another building. Perhaps, if we’d spent 12-18 hours stuffed in a smelly little room together, we wouldn’t have wanted to meet in the cafeteria for lunch, or run to the on-campus deli (sadly, no longer there!). We would certainly have been friends but would we have formed a lifelong connection?

I can remember one particularly awful day — in case you are unfamiliar with CMU’s reputation, it is an extraordinarily stressful environment — when I was sitting at my little Macintosh computer, rewriting/redesigning the IRS W-2 form (yes, for the real IRS). Ken ran into the room, threw a package on my desk and ran back out again.  (I learned later in our relationship that it made him very uncomfortable to get or give presents, a hold over from his tough childhood. He got better at it when we had kids, perhaps because kids are joyful about the PROCESS — the anticipation, the presentation, the opening — even more than the actual gift.)

So, anyway, after he ran back out the door, I looked at the little paper bag. It was just a little brown bag, nothing remarkable. Having no expectations when you open something is wonderful because you’ll always be pleased by what you find. It could have been an art pencil, a sandwich or bagel (or one of his favorite pickles) from “our” little deli, a notebook from the bookstore. The on-campus options for gifting are broad!

Nope, none of those practical things. It was a candy necklace — yes, that’s right a candy necklace. It still makes me smile (and okay, cry/not cry) when I think about it. I didn’t eat it, ever. Eventually, when we moved from our first house, I had to throw it out because it got broken into bits during the move. He probably never knew that I didn’t eat it because of course I should have but that stupid candy necklace meant so much to me.

Over the years of little, unexpected gifts — car mats, music, a smoothie, nonsense poems he wrote — Ken was saying “I love you” and that’s the real gift.

It’s another difficult day, not because it’s my birthday but because it’s my birthday without Ken. I know it gets better (everyone says so) but as other — better — writers have said before me: I don’t want it to get better or easier; I want to have Ken here, with me, now.

I want Ken to help me go through all of our “stuff.” What books should I keep of the hundreds lining the shelf? Should I donate the dishes we bought together 25 years ago? I want Ken to help me make a new “to do” list. Do I need to repair the sidewalk crack that is now an entrance to Mr Chipmunk’s burrow? While I’m repairing that, should I replace the front porch that has an ever-larger crack (and a definite tilt)?

I want to ask Ken’s advice. My company posted my old boss’ job but at a lower level. I’m over-qualified by like ten years. I’m going to apply for it anyway but I’m also going to start another job hunt. Did you know, according to all the grief counselors, I’m not supposed to make any big decisions for at least a year?

There’s an orange milk crate on the sidewalk across the street from me and as I’m watching right now, maybe 10 kids, walking with their caregivers, see the milk crate, walk over, step up onto it, and jump off. They could easily go around but they don’t see that milk crate as a barrier. They see it as an opportunity.

And perhaps that’s the answer to my questions ….

Peace.

I keep seeing those click bait sites, like “You’ve been — cutting your pineapple/folding your sheets/loading your washer/other topic du jour — wrong your whole life.” Unless you’re hurting yourself in the cutting process or eating the rind instead of the pineapple meat, you’re not doing anything wrong. Seriously, what’s with the online shaming? I’ll cut my pineapple however I darn well please. Look, I’m all for learning a new trick but honestly, my t-shirts are folded just fine, my towels too, AND my fitted sheets. And who cares if they aren’t?! Is Martha Stewart stopping by to check? Because if she visits my house and makes any critical comments, I’ll be showing her the door, not the linen closet.

We continue to mark the days on the calendar. Some days are okay; some days are awful. All of them are empty without Ken. But that line of thinking doesn’t help with putting one foot in front of the other so each of us, in our own way, tries to move on. I talk to Ken a lot. He hasn’t noticeably answered but that might be because I’m usually crying or yelling at him during the conversation. I can totally see him saying, “I’m not responding while you talk to me like that.”

I’ve always liked learning but I’ve found that learning because you have to isn’t anywhere near the fun of learning …well, for fun. We’ve had what feels like more than the usual breakage, damage, repairs, etc. this summer. Did Ken just anticipate problems and solve them? Did things dare not break when Ken was alive? Am I really as clueless as I sometimes feel?!

The worst loss was my chromebook, a gift from Ken before he got sick. It died in July and I haven’t been able to write the blog since — no personal computer, just a work computer that I would never use for personal stuff. Today, though, I’m typing the blog on my replacement chromebook, a refurbished one from Woot.com. (Ian’s been “testing” it for me since it arrived but tonight he’s mad at me so the chromebook is available.) Buying a refurb off Woot is totally something Ken would have done. It’s my early birthday present to myself though he would have just said, “Will it make your life easier? If so, then get it.”

August 29th was our 25th wedding anniversary. The kids and I went out to dinner and toasted Ken but it was stressful. I can’t say that any of us actually enjoyed the experience. Perhaps it is enough that we tried but I’ll admit that I was glad when dinner ended. While I lay in bed that night, I cried for hours, but while I cried, I wrote about our wedding dance. Eventually, I posted it to Facebook, wanting to do SOMETHING to acknowledge the day for some weird, irrational reason. (Ken would have laughed. Truly, we forgot our anniversary more than we remembered it. Living our lives together every day was far more important to us than an annual nod to Hallmark cards, not that I’m dismissing the satisfaction of receiving a really nice greeting card. It just wasn’t our schtick.) Anyway, a friend who read my Facebook post asked me to share it in the blog, a good push for me to write again, and so, here it is. I hope it makes you smile:

Twenty-five years ago today, a young couple woke up early, full of hope, excitement, nerves, ready to publicly commit to spending their lives together. First, though, they really needed to practice that wedding dance one more time.

Months before, she had borrowed one of those wedding music compilation CDs from a friend. He rejected song after song. He already had The Song picked out and was just waiting for the right moment to suggest it.

They prepared extensively for their dance. First, they signed up for a ballroom dancing class. She didn’t mind it but he hated the instructor. Then, they joined an amateur ballroom dance group associated with the university they had attended. That was pretty good but they wanted more individual attention. He advertised on campus for a dance teacher and they met a wonderful young man who taught them for free because he loved to dance and wanted them to love it too.

They practiced every day and met with their teacher once a week for two months. They learned quickly and grew in confidence throughout the summer.

The wedding day eventually arrived and they dressed for one last early morning practice session. The groom was especially nervous because he knew the bride’s father liked to dance. He turned on their portable CD player in their empty garage/practice studio and held out his arms. In a Hollywood story, she would have floated into them and they would have sung beautifully together while spinning and dipping gracefully.

That isn’t real, though, and this tale is. So, that final practice went poorly and the nervous young lovers had a pre-wedding spat. She left to meet the bridal party at the hair stylist. Presumably, he turned off the CD player (perhaps after practicing a little more first?) and went back into their house to get ready.

They met up again at the church, fight forgotten, and pledged their love in front of family and dear friends. After pictures and a tossed bouquet, wedding party and guests traveled to the reception, where the bride and groom danced — beautifully or not. Only they really cared.

Thinking about you, Ken, and that wonderful, ridiculous dance. I will still need you (and miss you) when I’m 64.

Happy Anniversary, my dear.

 

Well, we made it through Father’s Day last weekend. I suggested a camping trip to get us out of the house. So, we celebrated Haley’s birthday — yep, on Saturday — with a brownie cake (easy to transport!), in Cook Forest. Our Pitbull spent a good bit of Saturday absolutely convinced that we were going to bolt out of the woods without her, leaving her stranded (surrounded by scary things) with only the tent and the puppies. She finally relaxed about 4AM Sunday, when she dragged me out of the tent to protect her while she answered nature’s call (she is the biggest chicken you’ll ever meet, though she talks (barks?) a good game). I didn’t really mind standing under a star-filled sky, waiting for her to finish.

Father’s Day is one of many milestones we’ve “achieved” since Ken left us (three months ago today). We’ve had sunrises and sunsets, breakfasts and dinners, birthdays and holidays. We only rarely go out to eat anymore but we still have trouble remembering we’re 4 instead of 5. I’ve started slowly to go through Ken’s things. We donated some food that he liked to a food drive at school. I have a big pile of contact lenses to donate (somewhere?) before they expire.  The kimchi — Ken liked that he could taste it even after all that chemo — is still in the back of the frig. I know that leaving it there is stupid but I can’t throw it out (and I’m crying as I contemplate the day that I’ll have to).

The thank you notes from the memorial are mostly finished.  However, there’s one, very important, mass “thank you” left and that’s what this particular blog is for.  Very shortly after Ken died, his colleagues created a “GoFundMe” in his honor and sent me an email, asking me to accept it. Honestly, I was shocked and disconcerted by the offer. How could I accept money from his colleagues and friends, many of them strangers to me?! What would Ken want me to do?

Well, in addition to an extra-ordinary and unusual sense of humor, Ken had an abiding loyalty to and love for his friends. After some thought and several rhetorical questions posed to him, I realized that he would have wanted me to honor his friendships and so I accepted the GoFundMe request. Dozens of people, most of them — in fact — strangers to me, have contributed and left messages about Ken’s impact on their lives. Sometimes those messages make me laugh. Mostly, though, they make me cry. I wish — how I wish —  he could see what an impact he had.

Practically speaking, even with really good health insurance, in January I had medical bills totaling more than $12,000 and that number continued to increase throughout the spring.  There was a time — God, forgive me — when I didn’t understand how people who had “good” health insurance could go into debt paying for medical care. Now, I’m so angry about the struggles we faced with our “good” coverage (wondering back in February, for example, where I was going to get the $6,000 to pay upfront for his chemo drugs).

ANYWAY, to each of you who contributed to the GoFundMe — I wanted to write personal notes to each of you but since I couldn’t, I hope you will accept my thanks here and that you know how deeply grateful our children and I are for the gifts that you have given us.

You know how much I value words. So, I’ll leave you with this very well-written lyric by Ed Sheeran: “A heart that’s broke is a heart that’s been loved.” I guess that’s my silver lining for today.

Much love.

Friends have been checking on us regularly to see how we’re doing. “How are you?” “Are you okay?” It’s hard not to look a little quizzical. What’s the answer to those questions? We couldn’t tell you. Am I okay? Well, no…and yes. Ken would be very disappointed in me if I were to crumble to the floor and it’s not really in my nature to do so. Therefore, I get up every morning, shower and dress like most people, eat regular meals (maybe too many carbs for my own good), focus on my job and daily chores and my children. That means I’m okay, right?

At the same time, I sleep poorly and I mean POORLY. Have you ever cried in your sleep? I didn’t even realize that I was until I woke up from one of my frequent nightmares with salty tears dried on my cheeks and crusting my eyes. My eldest told me that his worst recurring nightmare is that his dad is still alive … because he has to wake up into a world where Ken is gone. What hell is that to endure?

But as with all who experience loss, we have good moments, good days. We use the grill every nice evening.  Recent culinary achievements include chops, flank steak, and lemon chicken. Then we eat outside and laugh as much as possible (quietly so we don’t disturb our city neighbors!). We look for activities to keep us busy; the boys are currently playing Zelda Breathe of the Wild on the Wii U and really enjoying the time together. Over the weekend, while a dear relative helped me clean up the yard, my youngest made spears, bows and arrows from our yard waste with much more effectiveness than I would have predicted. I made inexpensive curtains to replace the sun-damaged blinds on our front window (also with the help of that dear relative who cut, pinned and kept me company). After I finished and hung them, I went outside to look at my handiwork and cried because Ken hated those darn blinds. He would have been so pleased that they are gone.

Some things are particularly difficult. We find ourselves the topic of whispered conversations whenever we see people who know us. One day, when we noticed no less than 6 different couples watching us at a school event, my daughter asked me why they were staring and I said they were checking out the hot, young widow. We both thought that was hilarious.

Shopping without Ken makes me cry EVERY SINGLE TIME, though I have gotten groceries 5 times since he left us. Breaking the news to people is awful; yes, I have a practiced answer but telling them hurts them and that hurts me all over again. Among the worst, though, is redefining myself: yesterday  morning I had to complete an online form that only offered a few options to describe my status:  single, married, divorced. I’m still married in my heart but the software rejected that status when I couldn’t produce a living spouse. Am I single? Certainly not but the software said I am. I couldn’t finish the task. I’m married, damn it, and no software is going to tell me otherwise.

This morning, I had a 9AM appointment at the social security office to complete Ian’s application for survivor benefits. There was a line at the entrance and just as I joined it, a verbal altercation began — racially motivated I am very sorry to report — but it was effectively stopped about 5 minutes later by the door opening at 9:01. They were all behaving badly but they also seemed to understand that the two security guards at the entrance weren’t putting up with any nonsense.

The first appointment of the day is a gift. As soon as people started streaming through the door, I heard a lady calling my name and stepped out of line, right over to “window 6 please.”  The process took about 45 minutes and I spent a good bit of that eavesdropping on various sad and confusing stories — a man who thought it would be okay to lend someone his ID, a woman who defaulted on her student loans and just got a second job to try to pay back the loans, an elderly couple who are married but living in separate apartments in the same building and trying to sort out their social security payments.

It made me think of that parable:  a storyteller offers to get rid of his audiences’ troubles. At his request, they all bag up their worries and carry them to the opposite wall. Such relief they feel that their problems are gone but the storyteller says to them all, “Go back now and pick up a bag. You can’t open it; just pick one, bring it back and own it.” Of course, people immediately realize that maybe, after all, their familiar set of problems wasn’t so bad.

Much love ….

It isn’t enough but what follows is Ken’s real obituary.

Much love ….

Ken Zuroski, 56, died on March 27, 2017, after a fierce, year-long battle against a rare and aggressive form of colon cancer. He was preceded in death by his parents and a beloved niece. In addition to dear siblings, friends, nephews and nieces, and other relatives, he is survived by his wife of 25 years, Deborah Ainsworth Zuroski, and by his three children, Tristan (21), Haley (18) and Ian (11).

Writer, rhetorician, photographer, artist, teacher, X-ray technician, marksman, cook, husband, father, brother, cousin, friend … there isn’t a label or a job title that effectively describes Ken. His interests were broad but also deep and his love for friends and family was infinite.

Ken’s appreciation for classical music began in the early ’90s and ultimately resulted in him spending years searching for the best recordings of 100 important classical pieces. The “Classical Music Project” caused him to seek the rare/hard-to-find recordings from libraries and music stores across the country but was a true labor of love, allowing him to share his passion with anyone interested in learning about classical music. He finished putting the compilation together just a few months before he began his cancer battle.

An intensely private man, Ken was also a deeply caring friend whose relationships — online and offline — lasted decades and spanned the globe. He traveled across the US to connect with friends he first met online and deeply mourned the passing of friends he never met in person.

Well-known for his ability to make people laugh, he was never prouder than when his children (and his wife) surprised a laugh out of him. His sense of humor ran to the corny (Why don’t cannibals eat clowns? Because they taste funny.), the absurd (aluminum foil bow ties), and the outrageous (there are many stories but they can’t be shared here!).

He loved a good riddle or puzzle and would spent weeks figuring out the answer. Many years ago, a friend unnamed here but much loved, posed a riddle that Ken literally pondered over for more than a year: two words, homophones, opposite meanings, one 5 letters long, the other 6 letters long. Of course he figured out the answer and was never prouder than when his eldest did the same.

Before he married, Ken traveled across the country with friends twice. Later, when his children were young, he took the family on trips to the state fairs in Wisconsin and Iowa, Mammoth Cave in Kentucky, the Finger Lakes in New York, and the National Seashore in Texas, among many others. The family loved camping and accumulated many wonderful stories, from drying out after torrential downpours to bundling up in August cold spells, from starting campfires with Doritos to fierce games of miniature golf (sometimes in a thunderstorm).

Poppy the Pitbull was Ken’s loyal companion on many long walks through the woods. His youngest son was their frequent walking buddy. They would hike for hours, exploring Pittsburgh’s Frick Park and finally returning home, exhausted and muddy, for the inevitable tick-hunt.

Toward the end, Ken wanted nothing so much as another walk in the woods with his son and their dog.  Unfortunately, the illness would not allow him that. He died peacefully with his wife and children by his side.

So many people enter and exit our lives — school students, roommates, relatives, friends, significant others.  What a gift it is to have someone so noteworthy in our lives that their absence causes grief.  At the same time, I could do without zombie apocalypse dreams, tear tracks on my children’s cheeks, and his daily absence.

There’s an obituary in our Sunday paper. If you search post-gazette obituaries, you’ll find him. That brief statement on his life cost $300 and as I was drafting it, I could hear Ken in my head, castigating me for spending money on something as ridiculous as an obituary.

While I agree with “his” protest against such outlandish pricing, I do believe his life deserves better than those brief words. I’m working on another version, which I will publish on the blog shortly.  I started it with him when we first learned that he was at end stage but it’s hard to write. My heart is empty of hope and the words are in short supply.

The memorial celebration is scheduled and, as the obituary states, all of his friends and family are welcome. We’re holding the event where we got married, the First Unitarian Church of Pittsburgh (Morewood at Ellsworth) from 6-8:30PM on Saturday, April 29th. Our pitbull will be home alone, awaiting any and all opportunities to eat trespassers (if you’ve ever met our pitbull, you know that’s not a joke) so don’t worry that we’ve announced our absence from home in mentioning the memorial.

The memorial celebration food will be things that Ken loved — which means it is highly likely that there will be salad and broccoli, at a minimum. We’re also going to have a cookie table. Ken wasn’t much for sweets but I am! And if there was ever an occasion for stress eating cookies …. (Want to send or bring cookies? Of course, you can. Just let me know how I can help.)

We’d love to see all of you and to meet those of you who knew Ken but not his family. Come and join us: grab a plate of food, share stories, look at all the pictures we’ve already pulled into albums and put into frames, and help us celebrate a wonderful life.

I lost control of the message, if I ever had control. Ken and I created a list of people I needed to notify personally. Unfortunately, while I was making those calls and writing those texts, Ken’s loving friends and family were also making calls and writing texts and posts. As such, many of you already know — and for that I’m grateful — but for those of you hurt by a bumpy roll-out of the news, I am so sorry. It’s hard to get bad news and even harder to get it by a side channel.

For those of you who aren’t directly in the path of this kind of news — you suspect but haven’t heard yet — Ken is gone. He died peacefully late Monday evening with me and our three kids at his side. We held his hands and talked to him, telling him how much we loved him, that we’d be okay, that he would be with us forever, as he took his last breath.  

He wasn’t able to speak toward the end. His systems started to crash during the night Friday and Saturday morning his voice was no more than a whisper. By mid-morning, he was answering questions with an eyebrow wiggle and a twinkle in his eye, so much himself that it made us cry and long for him to be okay. At one point, he started to get restless and I asked him if there were too many people in the room. He tried to say something but I couldn’t understand him so I leaned down to put my ear right to his lips. And in a whisper that was barely more than a breath of air, he said his last words to me: “Good all here.”

We decided, after he died, that he had waited for the end of the weekend, for everyone to leave so that he could have just us circled around him. It’s the kind of thing he would do, to bring everyone close but then give us our time with him too. There is very little to be thankful for right now but we are thankful for the gift of family all weekend and the gift of privacy at the end. Again, I mention no names but we are also thankful after he passed for the person who arrived 15 minutes later to help us with the final tasks: cleaning up the room, making an unexpected journey, hugging and comforting each other, silently being there.

Yes, we’re okay, if okay means grieving. Yes, we’ll be okay, if okay means that our lives are irretrievably changed and that we will learn how to be four instead of five. We know that death is part of life and that our sorrow will last the rest of our lives, though it will change as we change.  Today, we have nothing but disturbed dreams of loss and lost hope. Those will pass but for now we need time to grieve. We are deeply private people and your gift to us is that space and time to consider, to cry, to remember.

Ken was also deeply private and outlined his wishes clearly to me which I appreciate fully since this is a time when resilience is low and feelings are easily hurt. Here’s what he requested: No funeral and no viewing of his worn-out body. Instead, he requested that we have a get-together, as I’ve mentioned previously, a celebration of his life.

We’re still in the planning phase. I need to validate the proposed date with some folks. We’re trying to have it before Easter because his youngest son turns 11 the weekend after Easter. I’d rather not connect his dad’s death to our son’s birthday any more than it already is.

Everyone who knew him is welcome to join us at this celebration. I’ll provide the details once they are final. For those of you who cannot attend, please feel free to send me notes and memories. We’ll have something set up to allow them to be shared.

I won’t tell you to “hold your loved ones close” or anything like that. It’s meaningful to some to say that but it’s very difficult to do. Instead, I would suggest to you that you celebrate every day the lovely mundanity of life.

Much love …

Two weeks have passed in a blur — so much time when you are waiting for hope and so little when you have none.

The stents in Ken’s liver actually helped somewhat to improve the flow of bile from his liver. We saw a little improvement in his liver numbers on the Monday after his procedure. The next day, we learned that there was one last treatment option — experimental on colon cancer but well-received for breast cancer. His oncology doctor was excited about it; they agreed to start treatment on Friday. Ken would have to be discharged from the hospital but the care team would provide support to help him regain strength at home. Ken talked about returning to work in mid-April. We were filled with hope and excitement about Friday.

That afternoon, because Ken’s hemoglobin was very low, they gave him a transfusion, the first since he started treatment over a year ago. He was filled with energy and sat up in his hospital bed chatting with family. His color was good and our hearts were full. He went for a brief walk on Wednesday, with the help of a mobility aide. Finally, we had caught our break.

Thursday, he was restless and uncomfortable again. His hemoglobin numbers were dropping so his care team proposed another transfusion. We agreed but for whatever reason it was postponed to Friday, the day we were to leave for home and treatment. I left the hospital at 10 that night to buy some food for Ken’s return home and to prepare our living room for the hospital bed that would arrive on Friday. At 11:30, I got a call from the hospital. Ken had tried to get out of bed by himself and had slipped off the bed onto the floor, not really a fall but frightening as I contemplated having 24 hour responsibility for his safety.

Friday arrived and I hurried to the hospital because we had a full day ahead — discharge, treatment, and then home for the first time in 19 days. I will confess to feeling trepidation about his return home. He could walk once around the nurses’ station with assistance and a walker but he would need to make it through chemo, travel in a car to the house, and climb 4 steps to our house.

Many years ago, my dear mama told me not to worry so much, to “cross that bridge when I come to it.” She was right. I needn’t have worried about those 4 steps to the front door. Cancer is without compassion, having — this whole time — continued its onslaught. When I walked into Ken’s hospital room on Friday, he was in pain and feeling very ill. His liver function was terrible. The care team stopped his fluids, canceled his transfusion and came in to talk about options. The one Ken chose was to be moved to hospice. He recognized what we would not, that his body was failing even as his spirit was fighting to continue.

Ken didn’t “give up” (whatever that means) and tried, even here in hospice, to continue to improve but the cancer has continued too.  So, instead, we have gather around his bed and reminisced about various adventures we’ve had together. He is no longer able to join the conversation but we know he can hear us so we hold his hands and continue the stories.

Yesterday, the care team said he is crashing and so we’ve begun to stay here around the clock. The kids sleep on the sofas and lounge chair while I sit by his side through the night.