hospital – Gather by Image

Flooded with memories

May 17, 2017

I have a voicemail from the hospital at 2:04 am on May 17, 2017. I’ve never been able to delete it. My phone is always on silent when I sleep. I came home from the hospital exhausted on the night of the 16th… sent my neighbor home, sent Tim a telegram message I knew he wouldn’t get since I had his phone, and crashed. At 2:30am, D woke me to nurse, I grabbed my phone and saw I had a message. Crap! I listened to it while I nursed and felt like I heard the judgment in the nurse’s voice… um, we need you to call back… um, we need your authorization… um, your husband is declining fast, why aren’t you here or answering your phone? Maybe that wasn’t there and its all in my head, but its what I hear.

I took D downstairs to call back without waking the girls. I paced the playroom. I talked to a nurse and then a nephrologist. Tim’s kidneys were shutting down. He needed to go on dialysis. A machine needed to act for his kidneys. I needed to verbally authorize the dialysis. I’m pretty sure I only really knew what dialysis was because I had recently watched a John Oliver episode on it. (Yup, I just quick googled that episode: Published on May 14, 2017.) I asked if I needed to come back…. was it ok if I came in the morning when I got the kids to school? They said that was ok.

I felt so much conviction to TRY to keep things as normal as possible for the kids. I would get A on the bus, and R and D to school…then instead of going to work I’d go to the hospital. We’d see what the day held. Maybe someone else could get Annabelle off the bus. Maybe someone else could pick up the other two from daycare…

I fell back to sleep around 2:45 and turned up the volume. At 4am my phone rang again and I jumped up like my bed was on fire. It was my friend Anne. She happened to be in MA, and the night before when I texted friends and family, she had offered to come and I said yes. Now it reminds me of the first week of freshman year of college when her mother offered to come get me from the dorms when I had mono… and I said yes.

I got up early and showered. I was so tired. But mostly, I was so scared. While blow drying my hair I texted people. My friend Jen who had put my kids to bed the night before offered to take the day off work and meet me at the hospital. My friend Christine works at the hospital, but she was off that Wednesday. I didn’t want to inconvenience Jen, but she seemed to want to do it, so I said yes.

On the drive to the hospital, a drive that would become like the back of my hand in the coming weeks, I sat at a light and texted Anne and my two other best friends from college and said at least Anne would have good weather for the drive. Shruti who was in Austin where it was raining, asked if I was being sarcastic, so I sent them this photo:

When I got to the hospital, I found my way to Tim’s room in the regular ICU area. It was around 9am. I didn’t recognize anyone so I introduced myself. They said they’d started dialysis at 6am, and they would be taking him out for a test soon, and I would need to talk to the new attending when he was available. It seemed like there was going to be time, so I picked up my pump bag, “ok, I’ll go find a place to pump, and then he’ll be back?” All of the sudden, there were a million medical professionals in his room. The new attending doctor was very talkative. He said a million words. Then the cardio-thoracic surgeon showed up and everyone made it clear I had to pay attention to him. He told me they had to put Tim on ECMO. (I had no idea what that was.) He said it would be a surgery and it would be putting him on a machine that would bypass his heart and lungs. He would be moved to the other side of the hospital for the surgery, and after he would return to the Cardiovascular ICU (ie the “CV ICU” or my”home” for the next 26 days.) He told me that there was a 10% mortality rate in just going on the machine, but basically without it he’d be dead in a couple days for sure. OMG, where do I sign? 10%? Thats nothing. When can the surgery start? After I signed the paper, the surgeon went away and the attending was talking to me again about drugs, treatments, tests they wanted, all the things they didn’t know, all the blood and blood products Tim needed…. I was at the foot of Tim’s bed, under a lot of lights, holding my pumping bag, and a ton of interns were standing there, along with nurses buzzing around… so many people and many of them were staring at me… and it was the first time in my life I thought that information was going to make me pass out. I swayed. I grabbed Tim’s bed. I asked if I could sit down.

One nurse really jumped into action. Most of the nurses seemed sort of exasperated with the attending for saying so much to me. The attending told me they all knew about us, about my family… that they all had families… then he nodded towards the interns and said “well not them, they are too young!” They all looked at me with so much compassion. It made me fell a little stupid?… uneducated?.. slow? I am used to people looking at me like that now. But I wasn’t on May 17, 2017. No one had ever looked at me the way that everyone in that room was looking at me.

I went to pump, and a nurse gave me a piece of paper and pen and I wrote down everything I could remember from that conversation. One nurse practitioner kept asking me who was coming… telling me I needed people here… telling me people needed to come. I kept saying “My friend is here… she’s just downstairs getting us coffee, its fine.” She was so incessant, that people needed to come… and what could she do for me? And it occurred to me “How do I tell his parents?” So I wrote down their numbers and asked her to call them. I had texted them both the night before. I texted them to say to expect the NP’s call… I don’t know what she said to them, but I’m not sure that did anyone any favors based on the state they were in when they called me. They were getting on airplanes.

Jen and I followed Tim’s bed to the elevator and down to the basement of the hospital and way across the hospital until they took him into the OR and I couldn’t follow anymore. It was a long journey, a lot of people had to push his bed and all his machines, make sure his huge feet didn’t hit anything. Jen was helping me be sure me and my million big bags didn’t cause any issues.

There was a ton of waiting. We waited for hours. It was awful. But then all sorts of people started showing up. I can’t even remember all who arrived that day but it was a lot. Anne arrived later after he was out of surgery. She ended up sleeping at the hospital that night after I left to go home and get the kids to bed and get some sleep. His best friend and his wife came up from Fredricksburg. My sister and her husband and 2 teenage children. My sister-in-law. My mother-in-law and father-in-law. Friends. I remember when the doctor came out to tell me about how the surgery went. Someone had just made me laugh. I jumped up to go talk to the Dr. He looked so serious. I felt judged for my laughter. My friend Christine, who works there, followed me and stood there basically holding me up and rubbing my back. He told me they were providing way above the normal standard of care. Those words “standard of care” were said a million times and I just didn’t understand. It felt like medical speak that they understand. There are words in my industry like that. And acronyms. That other people don’t understand. I recognized this as that. But I WANTED to understand. I asked Christine. And she couldn’t really translate it for me. Much later, I would understand. At the moment, I said “are they saying I’m going to have to make a decision to have them stop?” and she said no.

After that it gets blurry. Eventually I got home and my sister told me to go to bed. My sister and her husband and kids were downstairs. My 3 were asleep. I knew I needed to sleep because D would be up to nurse at some point… but when I laid down… unlike the night before.. I could not sleep. I could not even sit still. I was freaking out. I ran downstairs and asked my sister if I could take some sort of tranquilizer. She looked concerned. She didn’t let me take anything, but she came up and got in bed with me. Warmed a heat/rice thing and put it on my chest. And I did get to sleep….

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May 17, 2018

This morning I was going to a conference in Arlington. I turned on Waze and started driving… and it took me the exact way I went to the hospital last year…

Then, I drove through Arlington on the way in and out… Arlington, where Tim and I had lived as friends, boyfriend/girlfriend, fiances, husband and wife, and parents for 10 years…. the memories were on every corner. I drove by his Ballston apartment, the restaurants where we went on dates in our 20s before going on dates was a big deal, the house where two of his best friends lived and we spent New Years Eve, barbeques and random drinking game nights. I drove right by the rose garden where we did Annabelle’s 6 month photos, the park where we had Rose’s 2nd birthday, 7 corners and all the stores we went to a million times… the memories almost drowned me like today’s rain. They are all good memories. I am so blessed to have so many good memories. I know that. But goodness, today, they hurt.

Tonight I had a gym class scheduled… as I was parking, the James Arthur song came on. The one I sang to him nearly every day in the hospital… until I could no longer ask him to “say you won’t let go.” The song that now makes me cry every single time I hear it. Immediately after that I heard the new Shawn Mendez song :In my blood:

I’m looking through my phone again, feeling anxious
Afraid to be alone again, I hate this
I’m trying to find a way to chill, can’t breathe, oh
Is there somebody who could

Help me, it’s like the walls are caving in
Sometimes I feel like giving up
No medicine is strong enough
Someone help me
I’m crawling in my skin
Sometimes I feel like giving up
But I just can’t
It isn’t in my blood

It isn’t in my blood

So the memories hit hard today. Big memories. I just wanted to write some of it down.

It’s absolutely true that sometimes I feel like giving up.

But its also true, that it isn’t in my blood.

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

The half year mark

I knew it was coming. Coming at me like a freight train. And yet I had promised him. Bedside, when I accepted that it was happening… that it would happen within the hour, certainly it would happen that day. His last breaths. That June 11th would be the date… I told him, “I promise you I won’t make a big deal about the date. You don’t understand why people do that… you don’t understand my thing with dates. I won’t make a big deal about this date.”

But deep down, I know, he would not have held me to that promise. He would have told me to do whatever I need to do. To take care of the kids first. Then, to take care of myself, since he couldn’t be here to do it. Sometimes, it’s so hard to me that we never had the chance to talk about these things. I never got to ask him what he would want me to do about <insert anything at all> after he was gone. But I search my heart, and I know what he would say.

Last weekend I took the kids to Longwood Gardens for their Christmas lights display. I had gone to Longwood growing up in the summer, but he had visited PA a few times at Christmas and gone then and it always stuck with him. He absolutely loved it. We went together for the first time in 2007, and then every year since except when we bailed last minute last year due to D having a really bad cold. I took the kids this year, and it snowed. That brought logistical challenges, but my family showed up for me, and we went, both my sister and then my brother driving for me in the poor visibility. But, wow, how beautiful it was in the snow. How much he would have loved that. On the way out, with D on my back and the girls with their aunt and uncle, I walked through the beautiful scenery and I just cried. The tears just streamed down my face.

On Sunday, we had a lovely Christmas brunch with my family. The kids got too many gifts, had fun and got to make a snowman with their cousin’s, and we returned to VA with my sister-in-law’s help.

I had honestly briefly considered taking off December 11th in advance. Taking a mental health day. I’ve already acknowledged to myself how impossible this month is going to be. This holiday that he loved so much, so much more than me. That if I could, I would escape… but of course, that is not an option. This month that includes my first birthday without him. And then, add to that the half hear mark. A half a year that I’ve been breathing, and he has not. But of course, I am me. And I said no, I will go to work as usual. I have a couple meetings that day. I have so little vacation time after this summer…

Every Thursday, I drive the girls to play therapy. And every week we drive by the ER I took Tim to last May. Some weeks, A points it out. Then, inevitably, R gets sad/mad that she didn’t get to go there with Daddy, to take Daddy there like A. That A got to see Daddy there, and R did not. And I realize, some day I will have to go there again. Last May may have been the only time I took Tim, but he and I had taken R. And I had taken myself when I got very sick and dehydrated and my OB told me to when I was pregnant with D.

Then at 3 am on December 11th, I find myself rushing to that ER with R. It was the exact scenario I had envisioned as worst-case when I was planning for childcare assistance after Tim died. And almost exactly 6 months to when I rushed back to the hospital to be with him when he took his last breaths, I was rushing back to the ER, I had first taken him to with our middle child. I was up all night. There in the ER I realized, there was no way I could go to work that day.

But I survived. I didn’t turn into a blubbering mess and tell anyone at the ER that I had walked my husband in there and he never came home. I knew what I had to do for R, and I did it.

This week, I’ve had to make big decisions. Medical, financial, professional and personal. I hate every one I have to make without discussing with Tim. And yet I am doing it. And yet, I can hear him. I can find him in my heart. I’ll take it.

The half year mark did, in fact, hit me like a freight train. All I can say is: I’m still breathing.

“The ones that love us never really leave us. We can always find them… in here. <3” – Sirius Black (J.K. Rowling)

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?..