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.

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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”

Telling the girls

In my post “The end” I mentioned:  I had to tell the girls.  I think I will save that for another post.

There is a great deal from this time, from the last 4 months that is turning blurry. Including June 11th. But one thing that is not blurry, and I can’t imagine it ever will be, is A’s reaction.  The way her face contracted, the sound of her voice screeching, “Daddy died?!?!?!”

I came downstairs the second time, after getting the girls down for breakfast, then lying back down.  I was exhausted.  Exhausted in every single, possible way.  And D was still sleeping, so I lay back down.

When I came downstairs again, there were definitely people there.  My sister, my sister-in-law, my father-in-law, my niece.  My brother-in-law and nephew too, but I knew they were asleep in the basement.  I knew my mom and my brother were en route.  They had to be told to come here – to my house – not to go to the hospital.

I felt a sense of urgency.  Who feels a sense of urgency to tell a 4 and almost-6 year old their dad is dead?

I did.  Maybe in order to control the message?  Maybe because I knew I had to tell them before I updated caringbridge, shared it with the world? (Although neither can read or has access to the internet.)  Maybe because I knew it was one of the most difficult things I’d ever do, and I needed to do it, so let’s rip off the bandaid. Who knows?  But I felt a sense of urgency, and I remember communicating to my sister and sister-in-law that I was going to do it now and seeing a mixture of surprise, alarm, and maybe fear in their eyes.  And in my sister’s eyes: a fierce stealing herself to be whatever would be needed.

The girls were in the playroom, so I went in.  The other grown-ups swarmed in.  I know D was there too, but I don’t remember who had him.  I told the girls I needed to talk to them. They stopped what they were doing and we sat on D’s puzzle-piece play mat. R got in my lap.  Chief (my father-in-law) got on the floor, and A got  in his lap.

I asked if A remembered what I said the night before about what the Doctor’s told me for the first time yesterday.  I said what I wanted to talk to them about was why I had to go back up and lay down… why I was so very tired this morning.  Last night, Chief and I got a call and we had to go back to the hospital in the middle of the night… Daddy fought so hard, but the disease and the infection was too much.  Chief and I were with him. We held his hand.  And Daddy died.

A’s response. R,  I think, at the moment, responded to A’s response.  How could she not? R is my emotional child.  She FEELS her way through life.  She burst into tears too, but I’m not even sure she immediately knew why… other than her sister’s crying was so alarming.  So raw.  So out of character.  And she must have felt everyone else’s response, the mood in the room.

The piercing whaling.  And I cried too.  More silently, but the tears streamed down my face.  I pulled every ounce of strength I possibly could and explained that yes, Daddy died.  He won’t be able to come home now, but he lives in our hearts now.  He loved us so very much, each of us. We loved him so much.  So very much.  He will always live in our hearts.   A’s face.  Her voice, “Daddy died?!!?!?” Her anguish in understanding. It will be forever on my heart.

In the moment, I felt a panic from everyone there.  Who knows how to handle that situation?  No one.  No one should ever have to handle it.  Telling a 4 and 5 year old this news.  But I immediately felt that I was in charge.  The other adults were looking to me, even if I was their baby sister or their daughter-in-law, I was the mother of these two whaling children.  I couldn’t “fix” it, but it was my call how to “handle” it.  I felt that so profoundly in that moment, and so many moments since…I am in charge.  I tried to reassure.  I talked about how daddy was in our hearts, but yes.  Daddy died.  It was so very sad.  I was so very sad too.  We love him, we will remember him.  We will hold him in our hearts.

I have subsequently read a pamphlet someone gave me “talking to Children about a loved one’s death”… of course its all about talking about a grandparent, as that’s most children’s first experience with death.  Not my children.  All of their grandparents are still alive.  The pamphlet says to specifically use “died” rather than “passed away” or “gone to sleep” because these terms are confusing to children.  You need to be direct with them to help them understand.  No one had to tell me that.  All I could think while doing it was “I have no idea what I am doing”…”I have no training in how to do this… in how to deliver the worst news of their young lives”…”How do I do this without completely screwing them up?”  But no one had to tell me to say Daddy died.  No other term was accurate.  He did not “pass away” as people love to say to try to make it sound less harsh. It is harsh. He died.

I remember R popping up very quickly with an urgency to tell people, to tell his friends.  I told the girls we would have a big party, we would invite everyone to come and celebrate Daddy’s life.  Because Daddy was awesome.  He  was amazing.  And he deserves to be celebrated.  I struggled that day, and I struggle now – between the past and present tense.  R ran to their hand-me-down pottery barn play table that just 2 months before she had been writing out invites to her 4th birthday party, and wanted to write invites for Daddy’s friends to come to his party.  We had to tell people.  People had to know.  I told her I would tell them.  Not 15 minutes later she approached her grandfather and said “Chief-y, are you sad because your son died?” with sincerity and compassion.  I honestly don’t know how he maintained any composure at all as he tried to answer his 4-year-old granddaughter’s question.  Knowing she just lost her father, knowing she had no idea yet, really, what that truly meant.

When their uncle and cousin came upstairs later, the girls basically SHOUTED at them, “Daddy died.”  It was cringe-worthy.  But what could you do?  It was now their news to share.  Their pain to bear.  Who knows how to process it – at any age, let alone theirs?

In the afternoon, when I thought the girls were having quiet time, resting… I asked my father-in-law to put up Tim’s hammock.  He did, and I snuck outside with the dog… and got this pic.  It was summer.  It was hot.  But cool enough inside in the A/C for pants…

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Before I knew it, I had company…

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That’s my brave face.

You can see in our eyes the tears we shed.  The pain.  But maybe hope too?  Certainly, our own survival.  For better or worse.  Likely the most blatantly unattractive photo of me I’ve every willingly shared.

I posted this photo to Tim’s wall on Facebook with these words:

Before I knew it, I had company. First, Annabelle, we shared our memories of you, each taking turns “it’s a pattern” then Rosie came and joined. She remembered naps in the hammock with you. They wanted to plan what we will do to celebrate your birthday next year. In many ways, I hate that we could not say goodbye. But I am grateful you never had to know you’d be leaving us, because knowing the pain we’d experience to lose you…it would have crushed you. You were my best friend, soulmate, and the best dad imaginable. I know you are always with us. Even if not the way I want. I love you. Sleep well.

Later that day, A started shouting in the den during a show, in front of her aunts, uncle, cousins.  “Daddy is NOT in my heart!  Daddy is gone!  He is not in my heart, he isn’t anywhere, he’s gone.”  I felt paralyzed with how to address that, especially in front of others, who were also of course profoundly uncomfortable.  Then, at night, alone with me brushing teeth before bed she got upset. “Mommy, of course daddy is in my heart!  I love him!  Why did I say that he’s not?  He’s in my heart.  Of course he is!  Why did I say that?”  I told her it was ok, she was simply confused.  It was terribly confusing.

Heading up to bed, R looked at me and said “Mommy!  You didn’t go to the hospital today!?”  Breath catch.  I had to explain again.  “Well yes, R, I didn’t go to the hospital today. [Like I have  each day for the last 26 days of your life.]  I had been going to the hospital to visit daddy.  Because Daddy died, he is no longer there.” Honestly, at that point,  it was a weird day for ME to not have spent it at the hospital.  It was weird for me that I didn’t have to.  It was weird for me that he wasn’t there.

A lot of things I have now read talk about children’s difficulty in understanding the permanence of death.  Other than that one moment, one question from R about me not going to the hospital on Sunday, June 11th, my brilliant daughters seemed to very quickly (or immediately) grasp that.  Grasp the permanence of death.  They have struggled, battled, been challenged, but in some ways, they seemed to traverse through all stages of grief at light speed in that one day from morning to bed time.  Denial, anger, bargaining, depression and acceptance – it was amazing to watch.  Amazing, heart-breaking, awe-inspiring.  Those stages are not linear.  They will live with that grief their entire lives, I know.  And I know that for now, I am in charge – of helping them with it day to day, at consulting and contacting the right resources, at talking about it with D when he’s ready, at steering the message, at supporting, backing away, holding, loving, bearing witness to the pain.

I may be in charge.  But I am following their lead.  I am learning, every day, from them. Without a doubt, he would be/ is so very proud of them.