icu – Gather by Image

Reliving the trauma – a year without your voice

My dearest Tim,

I had told myself this time was going to be hard. This week especially, but mostly the time between Mother’s day and Father’s day when I’d re-live the worst 26 days of my life… the memories of the hospital… when all of the sudden I’d flip the switch, and Facebook would no longer share “1 year ago” memories that you had posted…. all of YOUR posts would all be older than that…. putting you just a little further away from us.

I thought I had prepared myself for how hard this was going to be. But I had no idea. Similar to what I said in my Pain post, its hard to imagine that it’s real – the physical manifestation of grief, or that you have no control over it… much as you may WANT to be happy, to live in the present, the past has a way of sneaking up and taking the wind out of you. Even just seeing May 16th or June 11th on the calendar, or on a meeting notice that I am sent… it takes my breath away. I sometimes think that you would laugh at this… call it my obsession with dates… but I mostly think this was all so beyond your realm of imagination, that you would accept whatever I think/feel/experience as fact.

I’ll tell you what I have planned for tomorrow. Because it will make you laugh. You will shake your head because you think its ridiculous, and smile because it’s so me….

I remember what I wore that day. May 16, 2017. It was a Tuesday. I went into work my regular time after taking A to the bus stop, and taking R and D to daycare. I left work like a bat out of hell after lunchtime because you told me you had vomited and you still had a fever and were sweating through your clothes. But I often wonder, why did I even go to work that day? What if I had realized how sick you were, and simply stayed home and just lay in bed with you… sleeping while all the kids were at school or watching Netflix. What if I had had those final, quiet, peaceful moments with you? Moments I can never get back…. but I rushed to work because we were working a Task Order proposal… because I would have felt so much guilt to send the kids to school and lay in bed with you…so much guilt to not be contributing at work… I remember what I wore because I remember looking down at the skirt in the hospital. A long, flowery skirt. After that day I would look at that skirt and it would remind me that I went to work that day, instead of reading the signs and staying home with you… I couldn’t take seeing it much less wearing it so I put it at the back of the closet. So I wouldn’t have to see it, and feel that guilt and heartbreak. I will wear it again tomorrow. Because let’s be honest, I’m going to feel the guilt and the heartbreak tomorrow no matter what.

A year since I heard your voice. Since you teased me. Since I heard your laugh. Since I told you not to pull out your catheter and freaked out your nurses… who I then had to explain about my bad-patient-father who you, my rule-follower, are nothing like… who told me they thought girls married men like their fathers… and I said, not my sister and I!

So often I hate how things went down. That I never got to ask you… so many things. That I never got to hear directly from you what you’d want me to do on my own… But mostly I don’t hate it. You would have hated to face your own mortality. Better that all you knew was that you had pnemonia.

Here’s a really fun fact about the disease that you got:

Median age at diagnosis of SMZL is 69 years. The overall age-adjusted incidence is 0.13/100,000 habitants per year. The percentage change in age-adjusted incidence is 4.81%, with most of the patients being White. Gender prevalence is controversial, but there is an increasing trend to male predominance. – from the NIH at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5457460/

Seriously. 69 years. You had literally JUST turned 37. What. the. fuck?

I had a dream last night in which you and Colleen were playing golf… I can’t imagine Colleen playing golf…and I don’t think you played at all since A was born… Maybe a trip or two to Top Golf with friends?… But you were in this little stretch with strips of green grass… and I had the impression that you guys were growing tomatoes in the patches of dirt in between…the area was small but it overlooked the ocean…like you guys were hitting balls out into the ocean. The kids were up a bunch last night so I was in and out of sleep… I dreamed this scene and later I dreamed it again like I was watching it on TV… with other people… remembering you and Colleen… and I told the people with me “its how I imagine them in paradise.” (Though I’m not sure if that’s true?) You were both facing away from me so I never saw your faces….but I heard your laughter...and I can hear it still.

I had another dream too, which was so much worse. All of the sudden I was at your side as you took your last breaths again. Only this time it wasn’t your dad there with me, it was my sister. And she wasn’t on the other side of you, she was behind me. I remember looking down and both your legs had been amputated at the knee. There were just two silver plus signs. I asked the nurse why and she said because you didn’t need them any more, you couldn’t walk. They told me you were gone… I was lying on your chest again, feeling the last of your warmth, the lack of machine-breathing that there was at the very end. The silence when they turned off all the beeps on all the machines for me…. I forget why but Jean said to me then that you were gone, you were not suffering… And she said that dad was suffering more, so much worse…(in fairness, I know she’d never actually say that to me, but it probably is true)… and my response was “there is nothing worse than this” and I sobbed and fell to the floor. I woke then to D calling for me, in my bed with R asleep beside me. My eyes were dry but squinting, and my whole body was still shaking from those wracking dream-sobs.

Damn, that was a terrible way to start the day. This Tuesday-after-Mother’s-day. You would tell me not to celebrate anniversaries of sadness, but I can’t help it, Tim. I can’t control my dreams. I can’t control re-living the trauma. All I can do is survive it. And keep our kids alive and thriving. I don’t know that I am doing this dead parent child raising thing right, but I’m doing my best.
I have low moments. I have low lows. Sometimes I think they would have been so much better off to have had you rather than me. But I chase away the lows, I chase away the “what ifs” as you would want me to… I don’t make you proud every moment, but damn, I am trying. I miss you as my love, my husband, my partner, my co-parent, but more than anything else, I miss you as my best friend. Isn’t that a funny thing about life?

I don’t know if paradise is playing golf into the ocean and growing tomatoes with Colleen, but I can imagine it to be the sound of your laughter. This morning I heard your son laughing in the other room. It was the most amazing sound of baby giggles. But it was also solid, joyous, sustained laughter, and I thought of you. Wherever you are, Tim, keep laughing, keep Col laughing, and I’ll do the best I can to keep your legacies laughing, until we are reunited.

All my love, always,

MaryBeth

Mother’s Day

The village is amazing, and many people reached out to me regarding Mother’s day plans and for this I am so incredibly grateful…

I answered them mostly in much the same way, “I have very complicated feelings about mother’s day.”

And that’s the truth. I do. My feelings about mother’s day are very complicated. Mostly, maybe because they are overwhelmingly negative. And no one is supposed to feel negatively about mother’s day, right? Especially not when you are a mother, right?

So at the simplest level there is this: Mother’s day is the day when my husband got sick… and never got better. And that was last year.

But there’s more. We spent many mother’s days at the winery where we got married. In 2015 we had a great day there. I had a bit too much to drink, and that night, after we got the girls to bed, Tim and I had the worst fight of our marriage, or our friendship, of all the years we’d known each other. I was very willing to move on from the memory of that low moment. But Mother’s day 2016, when I was 8 months pregnant, he “had to work” and I took the girls there alone, and met my friends with my pregnant belly for a day at the vineyard. Last year, even before he got sick, he told me he didn’t want to go…. that he couldn’t go there on Mother’s day and remember the lowest point of our relationship. And I was incredibly moved. I was a little bitter, that he was making my holiday about his feelings… but I was also moved that that lowest point in our relationship had such an effect on him.

So last year, I didn’t have a lot planned. Maybe Peterson’s (ice cream) in the afternoon. The girls had swim lessons in the morning.. When he asked me what I wanted for Mother’s day I said…. to sleep in, to get time in the bathroom alone.
I was running low on my perfume. If he could order some more on Amazon that would be great. Maybe it would be great to get another family photo shoot, since the last was in October when Declan was only 3 months old… but it was probably too late for that… He told me I’d get a Mother’s day do-over. He was so incredibly sorry for being sick and not helping with the kids at all all weekend.

But I will never get that Mother’d day do-over. Although honestly, people take a lot of the logistics off my hands. And I have often thought, I’d take all the hard stuff and the exhaustion of the day-to-day, for just one more day with my Tim. But that is not meant to be.

And I often wonder – was I bitter? Or did he think I was? I’d hate for him to have thought that…. there was a text from him that weekend where he thought I was ignoring him and said “I know you’re mad at me but..” And in telegram there is no response to that… but I know I went up to our bedroom and saw him and said “I’m not mad, hun, I’m just tired, and busy. with the kids.. what do you need?” It just makes me hope I wasn’t bitter.

And maybe there’e also the what-ifs. The what-ifs that I try my best to chase away but creep in. What if it wasn’t mothers day but a regular weekend – maybe then he would have given me more details? What if not wanting to burden me on Mother’s Day weekend made him hold back details of how he was feeling that would have raised my red flags sooner, or given me critical information to help the doctors make a diagnosis sooner? What if it being Mother’s day was the problem?

Tonight I went to see the movie Tully with two mom-friends. And in the end, it made me feel better. I don’t remember feeling bitter exactly, but if I did, it was no more than the average new mother with a baby who doesn’t sleep through the night. I loved him. He knew that. No matter if I was exhausted that weekend, no matter if we had that terrible fight in 2015. He knew how much I loved and was dedicated to him, always. I showed it in life, and I show it now.

Maybe some day I will feel differently about Mother’s day, but for now, and for my children, I will grin and survive it, just like I do every day.

more of the beginning

In early May, 2017, I had installed the Telegram app on my phone and I had a few contacts, but when I saw that icon, it mostly meant I had a message from three of my close friends (whose husbands are all friends with Tim too) OR Tim. Mostly, it was from Tim. It was our primary form of communication if we weren’t together. We never used SMS texting, and I’m so glad because now I have it all saved. When he got sick, even though I pretty much spent at least 8 hours a day at his bedside at the hospital, I still Telegram-ed him. I had his phone, and I saw he was getting other telegram messages when I turned it on, but I didn’t read them. I sent him updates on the kids I knew he’d want when he woke up and could check his phone again. I poured out how much I missed him, how much I loved him, anything, so that he could look back on it when he was able. Looking back on those telegram messages, brings that time back in such an acute way. And before, his last messages to me, they help me remember those last times together, that I never could have imagined were the last.

In my Origin Story post, I talked a bit about the beginning… the weekend leading up to him ending up in the hospital, the trip to the ER with A, getting the kids with a friend and a neighbor, getting back to the ICU, our last moments that night before they intubated him… here is a bit more detail of what I can remember from memory and from telegram…

Here was our last Telegram communication:

Tim: Room is 415

Me:Yes/ Dr told me/ I’m here/ On my way to you/

Tim: I have no white blood cells

All of that is time stamped 6:37 PM, to give you an idea of how fast that typing occurred.

Going back in time…. On May 1st he went downtown after work to watch some sports thing with a friend.. he called it “baseball nerd stuff” at Howard Theater. He was very excited about it. On May 2nd (a Tuesday) we both worked short days so we could meet with A’s Kindergarten teacher in the morning, then make it back to the elementary school in the afternoon for her Tumbling showcase. I took A to the bus, then the other two to daycare while he swung by Dunkin and got us each an iced coffee before the teacher meeting. I was concerned that she wasn’t ready for first grade, I had always been worried mostly because of her age relative to the other kids in her class. Tim was adamant that she was ready and she would be bored if we held her back, so I said we had to at least meet with the teacher to learn some strategies to support her where she was behind her peers. I met him in front of the school with the 2 iced coffees, and we headed in. It was like a date. After the Tumbling showcase later that night, he pointed out that there were $1 subs at Jimmy John’s that day and we had to go. He took A to soccer practice, I picked up the other two and we met at Jimmy John’s. A was so excited! It was a scene. We had to wait in a huge line with lots of other people while more bread came out of the oven, and they could start selling sandwiches again. I remember thinking how ridiculous this was as I tried to keep D happy and A&R from climbing all over EVERYTHING, and from whining too much. Tim chatted with a couple behind us and bragged about how awesome it was to be a dad. He smiled from ear to ear, with pride at his kiddos. After the kids were in bed that night he watched the end of the Celtics / Wizards game. He sent me an article on fidget spinners being a threat to America, and commented that he saw a lot at school that day (on our two trips there!)

On May 4th he first commented on not feeling well. He said he thought he had gout. Between 6:30 and 7am he got stuck in the drive thru of the worst DD ever on his way to work, and eventually gave up and drove off without his food and coffee. That afternoon he was eager to get out for a run because he was getting frustrated with the kiddos, and the house being disorganized.

From May 6-7th he scheduled “beer and brunch with Jared” an occassion for Tim and 4 of his closest local buddies to visit the 6th of their crew (the poop group) for a Richmond beer crawl, in advance of the birth of Jared and his wife’s second child. Before he left he left out the sight word notecards he had made for A, in three piles and let me in on his method of assessing her, with checks, minuses and sad faces. He thanked me for letting him go to Richmond, he said he loved me, that he owed me one… I sent him updates from A’s soccer game (she scored!), where I was standing in the rain under an umbella with D in the carrier (thank goodness R was at a friend’s house!) He started sending me questions on how we were going to handle “no more babies” since we were leaning that way, and had said we would make a decision by D’s first birthday. I was pretty clear on how that should be handled. He said tournament time next year. He had a great time with his friends in Richmond, but when he contacted me to say good night he said he was exhausted, and with “the gout, the sores in my mouth, and the hemerroids… I feel so old and broken.” I told him at least he looked good. He said he was too old for this (brewery crawl). The next day when he was in the car with friends heading home I asked how he was feeling and he said “better than you would think! Didn’t actually drink all that much.” When he got home, R hadn’t napped, so he and she went straight out to his hammock in the backyard to nap together.

On May 8th, he mowed the lawn. He sent me a photo. He was so proud. He said he was getting quicker, did minor trimming but got to use the new blower. (I think when I read that in real time I thought “how many new lawn products is he buying?” But I didn’t question him even then, I knew he was having so much fun with the lawn!) That night he took care of Declan while I took the girls to Girl Scouts. This included giving Declan a bottle, and my pumping when I got home. He lamented adding more to the bottle and then him not drinking it. We talked about my family and my parents’ health. On the 9th he sent photos from As soccer practice.. mostly selfies of him with R and D on the side lines… and mentioned the hemerroid pain.

May 12th was a Friday and his last day at work. We talked about his outfit choices that week and the compliments he got at work. (He had just started Men’s Stitch fix and was loving it.) I went to Muffins for Moms at the school for Mother’s Day and sent him pics. He messaged me at 1:35 that afternoon that he was going home. He wanted to lay down – again complaints were only about hemerroids. He typically left work at 2:45pm every day to pick up Annabelle so this wasn’t shockingly early.

May 14th, Mother’s Day, was when he first mentioned a fever. He had one, then he didn’t. He told me he loved me and he was sorry to have ruined mother’s day. He said he was supposed to make french toast but could only muster the ice cream sandwiches. He said he promised I would get my weekend. I told him the ice cream sandwiches they made me Saturday were so good – and how was he feeling? I sent pics of us out with some friends for ice cream Sunday afternoon at one of his favorite places to go. At 5:36pm Sunday he told me the fever was back – 101ish. Thats when I said I really thought he ought to go see someone Monday morning, and he agreed. That’s when he asked me to go with him. I said yes, and that A needed to go to her room when we got home, and I was stopping with the kids at Safeway, and did he need anything He said “Severe pain killer. You are super mom.” He also said he thought we needed to hug A more. Just because.

On Monday, the 15th, our conversation was about getting ready to go to the doctor’s office. I thought I passed out in the waiting room, but I have messages with him while he was back there. “She thinks its the infection in my mouth/ To make an appointment with Dr .Z (our dentist)/ For the end of the week/ She’s going to give me a foam for hemerroids / Since it wasn’t black and blue she doesn’t think it’s thrombrosis (He had clearly been googling/ WebMDing). I asked if they thought the mouth infection was what was causing the fever? He said Potentially yea. I asked if they were giving him abx and he said yes. We went to Target to get the antibiotics. He said he was freezing. Then shaking. We went to Target, I got him home and in bed. He never did use that foam. He took the antibiotics. I went to work. He got A from the bus stop, and let her watch a movie til I got home with the littles. She had speech therapy that night. I had a lot of proposal work to get to at work after the morning doctor trip. I constantly ask myself why I hadn’t just stayed home with him that day. I had absolutely no clue.

The next day was the 16th. A day I will never forget. At 11:02am while I was at work I said: OMG next Friday D is 10 months! (I could never have imagined that D’s dad would die when he was 10 months old.) At 1:33pm Tim said he vomited. I told him I’d come home to get A off the bus if he wanted – let me know… at 2:18 he said it was ok, he was going to get up and shower. At 2:25 he said please come home. I responded with “309 eta/ I think we go to the ER this time.” I called him on my drive home. I called my boss and told him he needed to get my deputy help with the proposal ASAP. I grilled Tim on his symptoms while I was waiting for A at the bus stop… hemerroid pain he said was better, no mouth pain…lymphnoids didn’t seem as swollen, but sweating, fever, vomiting… I asked him if he’d been talking to his Aunt (because she’s a Dr and he’d spoken to her the previous year when he had an infection.) He said no. He said he was looking for socks… and brushing his teeth… next messages were the Room number and the white blood cells.

I described much of our last moments together in his ICU room at Fairfax hospital. Some other things I remember:

The hematologist came in while he was off for the CT scan. My initial thought when they took him for the CT scan was how dangerous to finally be sitting, not responsible for the kids, or even for Tim – and alone with my own thoughts. I texted his parents, my mom and sisters, my three close local friends (one of whom was with my kids and one who worked at that hospital and came back that night to be with me before I headed home, the third happened to be on vacation in California), my three (very not local) best friends from college…

I didn’t know what a hematologist was. They didn’t use the term “oncologist”with me that night though thats what he also was. They already suspected cancer. But I still had no idea. When the NP told me things would get worse before they got better I was a cheerleader… I said we’d tackle it, I said we understood, right, Tim? He said “well I’m not excited about it” (being intubated.) I had no idea what the NP was telling me. I had no idea that these crazy cheer leader go-get-em-we’ll-kick-this attitude I was portraying was the last conversation I’d ever have with my husband, my best friend, the love of my life. When they gave him a catheter he really didn’t like it. As a joke, I told him not to rip it out (because this was a problem my very-bad-patient-dad had been having) and I think I really freaked out the nurses. So I had to explain. They were both young and unmarried and said they thought girls married men like their dads. I said I couldn’t have married anyone more different from my father, and my sister too. Tim smiled at me through the oxygen mask. I told him my friend who was watching the kids messaged me that she’d never changed a boy diaper before then (she has 2 daughters) and he asked why she’d never changed her sister’s son’s diaper! There are times when remembering these last conversations burns me. Why didn’t I tell him how much I loved him? How much he meant to me? How much I loved our life together? That I wouldn’t change any of it for anything? Why couldn’t I have said all those things and more? I had no idea. I couldn’t imagine it was my last conversation with him.

Continue reading “more of the beginning”

The hospital time… “Love is watching someone die”

I spent every single day from May 17th through June 10-11th at Fairfax Inova hospital. 25 long, full days, in the cardiovascular ICU.

For the most part, I am glad that most people did not see him then. He would not want anyone to see him like that. While he wouldn’t have wanted me to see him that way either, I know he wanted me there. He made that clear in our last moments talking together. And I also know, because I would have wanted him there for me. When I was in the hospital for all three deliveries, I insisted on him staying there with me throughout… even when we had another child or children at home for whom we needed to get childcare.

So my goal is to spend some time writing about our hospital time. Using my trusty notebook that I scribbled away in every day while I was there. It was 25 days. It was a lifetime, and it was also the blink of an eye. I’m hoping I can do the time justice for the kids to read about later. More to come… these may come in time, interspersed with some updates on the now.

This Deathcab for Cutie song was brought to my attention by an online widow’s group. It’s very powerful to me. Very close to home. I pretty much lived it.

“What Sarah Said”
And it came to me then that every plan is a tiny prayer to father time
As I stared at my shoes in the ICU that reeked of piss and 409
And I rationed my breaths as I said to myself that I’d already taken too much today
As each descending peak on the LCD took you a little farther away from me
Away from me

Amongst the vending machines and year-old magazines in a place where we only say goodbye
It stung like a violent wind that our memories depend on a faulty camera in our minds
But I knew that you were a truth I would rather lose than to have never lain beside at all
And I looked around at all the eyes on the ground as the TV entertained itself

‘Cause there’s no comfort in the waiting room
Just nervous pacers bracing for bad news
And then the nurse comes round and everyone will lift their heads
But I’m thinking of what Sarah said that “Love is watching someone die”

So who’s going to watch you die?..