New York Celebration of Life

Packing for a trip… One I’m taking without you. Again.

Driving to your home town. For the first time without you.

The long drive. Doing all the driving myself. The sun shining when we pull in, through the streets of Altamont. Always with it’s welcoming arms for us.

Your name. Tim Gaige. In the newspaper. On the sign outside the American Legion. Your face. In photos on the walls. At the house you grew up in, in the banquet hall.

I feel you everywhere here. I see you in the faces of your family. Your parents, aunts, uncles and cousins. Always I see you in their faces: your children. The three tiny people you loved more than life itself. The job you loved the most: being their dad. How proud you always were to bring them here, to bring me here, your hometown. I see us spending Christmas here, going to the park, the Church, late night walks to Stewarts for ice cream after the kids went to bed.

Today was beautiful. The family reunions. People meeting in person for the first time. The kids getting to play together. Your best friends from Virginia and Massachusetts making the pilgrimage, getting to see your hometown for the first time. My siblings first trip to Altamont. Your brother. Your cousins.

It was beautiful and I feel you here. See you around every corner. Hear your voice. See your smile. Hear your laugh.

Two years ago we came this very same weekend to get our dog from his summer trip to Altamont. Our fall trip to your hometown for all the things you loved about fall: the foliage, the apple picking and cider, the apple cider donuts. How you loved to come here in the Fall. It’s easy to believe this is the weekend we might have come if you were with us. If life was normal. If last May never happened.

We are here. You are with us. But not the way I want.

Today was beautiful, but it was overwhelming.

Overwhelming in a way I think it will take me a long time to process.

It was your celebration of life done the Altamont way, and other than you not wanting a fuss made about you, I know you would have loved it.

Thank you for all that you gave me when you brought me here ten years ago, my love.

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…

IMG_20170611_150950.jpg

Before I knew it, I had company…

IMG_20170611_152113.jpg

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.

 

 

Anniversary

No marriage is perfect.

 

I know that.

 

And ours was no exception.

 

Recently, though, I was reminded of the concept of infidelity.  And that in some cultures or circles in the world, and even in the U.S., much as I hate to admit it, its accepted…overlooked… ignored for men to be unfaithful, and not respect women.

 

Being married to Tim, it’s easy to forget that exists.   The way he was, the people he surrounded himself with…

 

Tim and I were both terribly passionate, opinionated, stubborn people.  We argued about everything.  Sometimes, he felt I argued just to argue. Maybe he was right.

The last argument I remember us having was about the car keys.  Or rather, about me lying about them.

 

To explain: the keys to our SUV – which I primarily drive – had remote access keys.  This allows you to start the car, lock, unlock, open the back hatch without getting the key out of your bag, pocket etc., as long as it is close by.  But this feature requires good, working batteries.  Ours were both going, so we bought the new batteries, and I asked Tim to change them – he did it the last time, looked it up on YouTube, etc.  Weeks, then MONTHS went by where he didn’t do it and I was losing my mind.  With three kids in and out of that car all the time, the remote key was soooo missed, having to get it out to start or lock the car was driving me crazy.  And I just didn’t feel like figuring it out to do it myself. I finally got tired of waiting and just stopped at a Battery place near work and had it done.  I didn’t tell him mostly because I thought it would be entertaining to see how long before he noticed.

When he found out, he was livid.  I mean absolutely temper tantrum angry.

His reason – not that I had done this, but that I hadn’t told him.  I had purposely not told him. I had lied.  If I could do that, what else could I lie about, what else could I hide?  “It’s a slippery slope.”

 

Remembering this now I smile.  A sad, ironic smile… but still.

 

This was my marriage.  We fought about silly stuff, but never in a million years could I believe he’d cheat on me.   And now that I have access to his entire personal, physical and digital life, I know that to be true even more.   Nothing I found surprised me.  And he certainly had no time to prepare!

 

He was one of the best. One of the good guys.  His love for me, his remarkable, unwavering moral compass. His desire for the world to be a better place for his children. His desire for equality and social justice.

 

Yes, I was robbed of the life I planned.  But I know I am also in a way, one of the lucky ones.

 

My life with him was too short, but what an honor to be his wife.

 

Wherever you are, my love, Happy Anniversary.  I love you.

 

Time

Time marches on.  It’s so hard to believe.  Tim used to make so much fun of me for my obsession with dates.  I’d always remember dates, birth dates, anniversaries, compare year after year, put significance in dates… when it was 12:23, I’d say it was my birthday in time… point out my sister’s birthday in time too.  He thought it was crazy, over-the-top. Mostly, I think he just liked to tease me about it.

At his bedside on June 11th, I promised I wouldn’t make a big deal out of the date, because he wouldn’t want me to. I’ve mostly kept to this.  I noticed 7/11… partially because it is his mother’s birthday, and because it was the date of the blood drive my company had in his name.  I largely let 8/11 go by unrecognized.  Mainly because I was packing for the beach. I didn’t acknowledge 9/11 in a big way other than to reflect on 9/11/2001.

But today I gave blood.  Which means it was 2 months or 8 weeks since the last time I gave blood.. the drive that was  in his name. The drive that was a month after he died. 3 months ago, my Tim breathed his last breaths on this earth.  It’s hard to avoid all that.  So I didn’t really try.  One of his friends told me we have to mark the passing of time.  Like it or not, I do.

This weekend we will celebrate what would have been my and Tim’s 7th wedding anniversary.  I have two big events planned – the dedication of a bench at the Vineyard where we were married and the planting of a tree in a nearby park that we liked and was where we took our family photos since moving to Fairfax.  It might be a lot.  But I wanted to fill the time… so I can’t wallow.  I look forward to this weekend and am grateful for all those who plan to join us!

It’s just so hard to believe.  As recently as early May, Tim was asking me what I might want to do for our anniversary this year…that seems like yesterday, and it also seems a lifetime ago.  Which I guess it was.

I can’t stop time, I can’t slow it down. I simply have to live in the present.  Breathe, survive the present.  Survive with my constant companion, Grief.  Try to recognize the wonderful moments with my little ones as they come.

Try to make a difference.

Any way that I can.

IMG_20170912_101740.jpg

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?..

 

What he didn’t know

The ultimate silver lining is what Tim did not know.

There are many many times for me, when how completely unprepared for this we were is crippling.  Emotionally, and also practically. There is an incredible amount of paperwork that comes with death.  I am not through it.  I’m probably not even close.  I’ll save that for another post.

When I was in the hospital from May 16th to June 11th, there were many times when I pleaded with him: If this is it.. if this is the end… just sit up and talk to me one. last. time. Please. Let me hear your voice again, let me tell you…

But that plea was entirely selfish.  I know that, and I even knew it then.

If he had woken enough to talk to me when he was hooked up to all of those life support machines, he would have been so afraid.  He would have had to face the possibility that he would die.  He would have had to think about all the things that he would miss.  He would have realized that…

  • he would not see D’s first birthday
  • he would not see A’s patriotic performance or her last day of Kindergarten
  • he would not see R’s 2 end of the year recitals
  • he would not see his children again
  • he would miss so many firsts, so many lasts, graduations, dances, proms, recitals, GAMES, meets, performances, back-to-school nights, donuts with dads, Watch DOGS days, dates, anniversaries, weddings, grandchildren/new babies, our retirement plans…

He would realize that I would have to live this life we built together, without him.

The knowledge of his impending loss, of our loss… it would have shattered him.

 

Tim did not even know he had cancer.  It was a week in the hospital before I found out.  He knew he had no white blood cells.  He knew he had pneumonia.  But people recover from pneumonia all the time…. But he hadn’t reached out to his medical family members with questions.  Which tells me he had no clue how bad things were.  He was asking me about his phone charger, and whether I had brought a book.

When I had to accept that it was over, I briefly thought it would have been better if it had just happened that first terrifying night, so he wouldn’t have had to go through so much – all the transfusions, surgeries, machines, indignities.  Certainly it would have been better for him.  Maybe for me too when you consider the medical bills, etc….  But I quickly realized, no – I needed that time.  That time that he fought so hard, every day – it was his last gift to me.  Had he not been so young, strong, and healthy, we would not have had that time.  Had he not kept himself so healthy, his heart and lungs would not have survived as long, even on ECMO.  I needed that time to really understand what was happening, to process, to pour out all my love to him, to adjust, to be ready to hear those words when then came “Tim is dying”, to realize I could survive it.  Somehow, I will survive it.

It is the ultimate silver ling.  It is a comfort to me, and I hope to others who loved him, all the things he did not know.

His things

This weekend I sorted Tim’s t-shirts into shirts for several projects people have offered to do for me/us.   Pillows, stuffed animals, quilts.  I am very grateful.  These will be wonderful legacy projects.  And honestly, I can’t bring myself to get rid of any of his things.  At least not now.  Not yet.  There’s no reason to, really.  I did move all his shoes from the front closet.  To make room, and to not hear my children tell me we should throw them out again.  But the shoes are just hiding in my room.  The t-shirt projects are a good reason to DO something with some of his things.  At least to start thinking about it.

I worked on the t-shirt sorting while my sister was here, because I thought I needed someone here.  When I put my sister on dear-God-get-her-to-sleep duty, she was gone for a bit while I sorted t-shirts, and looked in his closet.  As I looked up at his clothes, I was overwhelmed with the thought:  This is it. This is all that is left of his life.

I pulled myself out of that deep dark hole pretty quickly by reminding myself that most importantly, what is left of his life are those three beautiful loves of his life, and of course, me.

Here’s what I know though.  And what I need to share with you if someone you love is ever in this deep grief.  I find silver linings as often as I can.  I give myself those pep talks, those reminders, as much as I can.  But if I had needed to just wallow in the sadness in that thought for a while, alone, when I didn’t completely need to be functional, then that’s what I would have needed. No one else reminding me that his 3 children are what’s left of his life (not his belongings) would have helped. I find silver linings as often as I can – but I have to be the one to find them.  If someone points them out to me, even if I know deep down they are absolutely right, I want to punch them.

It is essential, to let the person in pain, find the silver lining herself.

Why I’m doing This

First and foremost, this is for me.  I thought almost immediately after Tim died that I should blog again. Even if that’s so 2008.  If I have ever had anything to write about, it’s now.  As I’ve started to read the pile of what I call “my sad sack books,” everything suggests keeping a journal.  I could do that, but why make it public?… well because:

Secondly, this is for the kids.  To look back on what THIS time was like.  When they want to.  Or when they think they are ready to. Mostly, I try to talk about Tim as much as possible to keep him alive with us anyway I can.  I try to live in the present, look forward to the future… but there is so much comfort in the past for me, and I imagine for them as well right now.  We talk about the past a lot.  But my brain is not what it once was.  Just ask anyone who has needed me to do something, send some piece of information… I say yes, then almost immediately forget.  People say all the time they don’t know how I am doing this.. as in living my life.  One day, when my children are grown, they may wonder that as well.  Well, I am doing it because I have to.. because of them, with them, for them.  I think that often when it seems like a blessing and a curse at the same time.  The curse, how HARD it is to bear the grief of three other people when I don’t know how to handle my own.  The blessing, that I don’t know how I’d survive the grief if I didn’t need to for them.  It reminds me of the line from that Chris Daughtry song (Home): “I don’t regret this life you chose for me.”

Tertiary, its for anyone else.  Now  – because people ask how I am.  Because many more people THINK about how I am.  For those strong enough to bear witness, I will answer that here.  Later, because this unimaginable life I’m living may seem familiar to someone else someday… and if anything I thought, or felt, or said, or did helps someone else… I’m happy for the opportunity to give back.    I’ve received so much. A friend’s words that have stuck with me are his offer to “compare notes on this impossible situation.” This is a situation that just 4 months ago I could not have possibly imagined.  Yet here I am.  I am proof this tragedy is possible, even if I wouldn’t wish this grief on an enemy.

So here it is.  I will do my best to write as often as I can.  Raw.  Uneditted.  This.

Packing for the beach

Today, I packed for the beach.

It was really, really hard.

It should not have been.  With Tim here I still would have done all the packing.  But this time, I also loaded the car.  That wasn’t hard.  But this time, Tim wasn’t talking to me about whether I had packed yet, or whether I had remembered abc or what time we were leaving, or where was his xyz.

Mostly, it was hard because he should be here.  He should be going to the beach with us. This house that we stayed at last year when I was large-and-in-charge pregnant.  Where we walked on the beach together.  One of our favorite things to do.  And talk about the future.  All the possibilities.  Now I am living a future we never imagined. A future we never discussed.

Everyone worries about me and what I call “the logistics.”  I understand this.  I can take myself out of my life for a minute and imagine what I would feel/ think for a friend if this had happened to a friend and not to me.   I would worry about “the logistics.”  Because in early May  of this year, and every minute before, raising these tiny humans was hard, and exhausting, all-consuming.  And there are so many logistics.  All that is still there, I know.  But it seems completely different now. The logistics are no longer what is hard.  I seem to just know that somehow (and with lots of help from a lot of amazing friends and family) the logistics will be taken care of each day.  I will find the strength to handle the details – the bill-paying, the working, the child-caring.  It’s the sadness and the broken heart that make the future truly unimaginable.

Sometimes the missing him makes my throat close and the air seem so hard to swallow.

The end

Re-visiting the “Warrior Tim” Caringbridge post

My CaringBridge post from June 11, 2017 received a great deal of attention – even more than the “What happened?” post.  That is when I had to tell everyone who had been following on CaringBridge the news that I needed them to know, but I so hated having to share. I will share it here below.

That morning is becoming blurry.  I want to write down what I remember.  At the time, I knew it was one of the most critical times in my life.  I could feel, even as I was living it, how important every moment was, how every decision made had to be done with precision.  And I was unwavering.  As I lived it, but especially as I look back, I thank Tim for that.  I thank him for being so passionate, so opinionated, and so open with me on everything all the time, that even in things we never discussed explicitly – I knew what he would think, what he would say, what he would do.  It allowed me to make all the decisions I needed to make in short order, if not easy, at least clear.

The “friends of Timmy” supported me and posted every day – sometimes even twice a day.  So the lack of post on Saturday, June 10th, was likely noticeable to those paying attention.  And it was significant.

On Friday, June 9th, I felt things getting worse.  No one said it to me, but I had my little notebook that I kept.  Each day I went to the hospital, I wrote down everything…. all of Tim’s medications and their amounts, regularity, etc. Every action taken by the medical staff, every reaction Tim had.  Friday he was needing more and more blood products.  More were needed, more were ordered.  It was similar to his early days there, not the more recent days.  I felt the difference.  I felt the staff waiting for him to improve.  I felt him not doing that.  As I was leaving Friday evening, the nurse told me that they were waiting on the Intencivist (ICU Attending Doctor) to sign off on authorizing reaching out beyond the hospital blood bank, because there was a blood shortage. And they were out of platelets. That was a moment that brought up many thoughts and emotions…that I mostly tamped down, assured myself they were doing everything they could and headed home for bedtime.  During D’s bath, right at turnover the day nurse called to tell me Tim was going to get the platelets. I thought it was sweet of her.  Later the night nurse told me that his numbers were not improving and he was continuing to need blood products through the night.

Saturday morning was the National Capital Region girl scout day at National’s Park. I had bought tickets for Chief and A. After seeing them off to the game and ensuring my sister-in-law was set with R and D, I headed to the hospital.IMG_20170610_075823.jpg

Things felt much like they had on Friday.  Then, my favorite intensivist came to see us.
Across Tim’s bedside, he told me to have people come to Woodburn and donate platelets. He had gotten them to give up the last bag to Tim. He said that the Rituxan had had a positive effect, and they seemed to have gotten the lymphoma under control for the time being… But all the side effects…even Tim’s tiny inching up immunity was causing him problems with it’s response – “making him sicker.” This was something he had told me could happen the night before – when my internal response was “how is it possible to get sicker than this?…”

Then he asked to speak to me in the hall.  Away from Tim’s bedside, my favorite intensivist said that he’s going to have palliative care come talk to me. He apologized for not doing it sooner. He said he’s too invested. He’s trying everything. All the hammers are down. He said he could even get pulled off Tim’s case because his colleagues say he lost his objectivity. Finally, he said “I  wouldn’t be doing my job if I didn’t tell you…. Tim is dying.”

I had to re-read the text and telegram messages I sent that day, to get the above all right. That last sentence, I didn’t send to the group I sent updates to for CaringBridge.  The group that included Tim’s closest 5 local friends known (to themselves and their wives) as “the poop group.” I did send it to my family.  Despite leaving out the last sentence they understood.  This could be because they have a sideshow telegram group without me… and because one of the members is a therapist at that hospital.  I have to believe she would have explained the severity of what I was saying to the others.  OR maybe they didn’t need it.  Either way  – they understood.  And every one of those 5 guys showed up at the hospital before I knew it.  And almost all the wives showed up at my house with their children, so it was a big party day for my kiddos!

My favorite intensivist had so much sadness, and so much guilt that he hadn’t treated me the best that he should have.   But he did.  He was my favorite for a reason.  He spoke to me in a way I could understand, more than the others.  He learned about my background and education – and spoke to me in exactly the way I needed.

At the end.

Those words.

If I had to hear them, I am so glad I heard them from him.  I heard them at the exact moment I needed to.  Not too soon or too late.

Those words spurred me into action.  To get folks to my house to be sure my sister-in-law and the kids were set, to get Chief back to the hospital as soon as he got home from the baseball game. To communicate the urgency to anyone who wanted to come.  And come they did.

The palliative care doctor was also amazing.  She lives in my neighborhood.  Has a son with the same name as mine. Said she felt like she was looking in a mirror.  She spoke very softly.  She was very understanding and compassionate.  There was one thing that she said that helped me more than anything.  She said apart from religion, she was a spiritual person, and she had seen much in her job – including a mother wait until her son got there from Afghanistan, then pass 5 minutes later, and that if I was meant to be there I would, and if I wasn’t – I wouldn’t be.  She said that I could camp out there, but if I wasn’t meant to be there – it could happen while I was in the bathroom.  If that happened, maybe Tim didn’t want me to be there for it.  That helped me feel at peace, and spurred me into action.

When Chief got to the hospital, we went to a room to speak to the Palliative Care doctor again.  My sister joined us for support.  Like me, Chief was there every day and always speaking in the most positive terms, rooting for a full recovery, talking about what that would include.  And yet,  like me, you couldn’t be there every day and not understand how bad things really were.  He agreed with me that we couldn’t make Tim suffer any more if there was no more hope.  We called Tim’s mom, we got the process started with the Red Cross to reach Tim’s brother.  His friends came.  When they left, I asked if they had said everything they needed to say.  I asked my sister to go home and help with bedtime… not that it was entirely needed, there was a huge crowd at the house!  I asked those at the house to keep A up.  When I finally brought myself to leave, I drove Chief home.  The littles were asleep.  I got A up to bed.  She had been asking a lot of questions lately.  Particularly, she wanted to know when she could go see Daddy.  I didn’t make any promises, but I did say when he got to a different part of the hospital – not intensive care – they could go see him like they saw me when D was born.  I told her that that day, for the first time, the doctors told me that Daddy might not get better.  Daddy might not be able to come home. It was the only thing that I could do to prepare her.

After she went to bed, things mostly seemed in order, so I wanted to get to bed fast.  I got great hugs from my niece and nephew.  I went up and climbed in bed, turned off the light.  Then my mind started racing.  I’d been pregnant three times before.  I didn’t think I was, but I couldn’t be sure I wasn’t.  I jumped up and ran to my bathroom and frantically searched under the sink until I found one – a pregnancy test, with June 2017 expiration date!  I took it and waited.  If I was, I had to be able to tell Tim.

Fortunately, the test came back “Not Pregnant.”

I went back downstairs, because I just had a feeling I might get called to the hospital in the middle of the night.  I asked Chief, if I was, did he want me to wake him.  Then we talked to Lucas.  He understood what we were telling him.  I went to bed.

Just before midnight, I heard D.  I went in, nursed on one side, while nursing on the other side the phone rang.  It was the nurse practitioner. She said a lot of words.. “I’ve had to come all the way up on…   we’re all the way maxed out on… I’m trying… I might not be able to.”

“I understand.  I’m coming.”

I got D settled back in his crib.  I texted Chief. I got dressed.  I went to the basement to get him, past many sleeping people in my house.  Just before I got to his bedroom door, he texted me back. I texted him to meet me in the foyer.  I got my shoes on, my car keys.. looked in the closet for a cardigan.  I couldn’t find anything of mine, so I took Tim’s BU zip up, even if it’s huge on me.

Chief and I drove to the hospital as fast as we could safely.  Not knowing what we would find when we got there.  I told him, if Tim was still alive when we got there, we would not let him suffer anymore.  We couldn’t let him go fighting every second, hooked up to every machine possible.  Chief agreed with me.  Frankly, I think I could have told him I was going to get naked, paint myself red, and dance around his hospital room when we got there, and he would have agreed with me at that time.

When we arrived, the nurses explained to me everything going on… so much support, more than ever – maxed out on every single life support machine.  I asked the nurses to get the doctor.  The doctor working was the one we had when we first got to CV ICU on May 17th.  We knew each other by then.  I spoke to Tim.  Chief spoke to him.   The Doctor arrived.  Told me that they were trying everything to keep Tim  alive until the morning, so the family could be there, but he wasn’t sure he could do it, which was why he called me… but he would keep trying.  After a quick glance at Chief I said, not without my voice breaking this time, “I can not let him suffer anymore.”  Then they explained to me how things would go – that they would push the pain meds hard so that Tim wouldn’t suffer as they removed all the life support machines.  That once they did, it would not be long.

For weeks I had been singing to him the James Arthur song “Say you won’t let go”… it was my way of staying positive.  Asking him not to let go.  No matter how terrible it was, that if there was a light at the end of a very long tunnel, he would be there for his children… because the alternative was unacceptable.  Because no matter how bad right now was, letting go would be forever.  But on Saturday I had to stop singing that.  I didn’t know what to sing.   So then I just started singing “Stolen” by dashboard confessional because it’s what we danced to at our wedding.  Because it was one of the first songs he had me listen to after we finally started dating!  In that song there are the words, “sleep well.”   I didn’t remember that.  I didn’t recognize how fitting the song was until I sang it.   I don’t even know if, at the time, his dad knew it.  I told him how much we all loved him.  I told him that even if I knew this would all happen, I would not have changed a thing about our life.  I told him he had fought so hard.  He was amazing, and we were so proud of him.  I thanked him – for loving me – for teaching me so much – for loving our children – for fighting so hard to stay with us.  I told him it was okay now to let go, to sleep well.

When they were ready to start removing the machines, the doctor asked me if I wanted to step outside while they did that.  I stared at him.  He said I didn’t have to.  I said “then I’ll stay right here,” clinging to Tim’s hand as I basically had been for over three weeks.  His dad said the same.  After all we’d been through, after everything I was in the room for, I was surprised he even asked me.

When the machines were gone, it was more peaceful.  For weeks, when no one was in the room, I would lay my head down on Tim’s chest, as close as I could get to climbing in that bed with him.  IT provided some comfort, with the sense of touch, that position I was so physically comfortable with, but to listen to the ventilator breathe for him.  The sound of the mechanical breathing.  I could never listen to it for too long.  At the end, that was gone.  And I was just lying on my Tim.  As I had so many times before. And I lied there.  And I cried.  And I just loved him so much.  I tried to send him out of the world with so much love.  And his dad stroked his head.  His dad, who was there for his first breath in this world, was also there for his last.  They told me he would be gone when his heart stopped beating.  At that point, it was too hard for me to tell when that was.  It was quiet.  Finally quiet.  No more machines.  I made the doctor tell me when.  Until then, I just laid on his chest and loved him.

The doctor told me.  The staff were all very professional, but empathetic.  Kind.   The official time was 1:32am.  While waiting for the paperwork we would need to sign, Chief and I took down all the art work from the kids – ours and daycare friends. I called Tim’s mother.

On the way out, I ran into one of my favorite ICU nurses and ECMO specialists.  I had suspected she was pregnant.  I figured if ever there was a time I could point-blank ask someone that it was then.  So I did.  She said she was, and that she had suffered miscarriages so she wasn’t quite ready to tell people.  I was glad I had pulled her away from the other staff to ask her.  I congratulated her; I wished her well. We hugged.  We cried.    I gestured for Chief.  We walked out for the last time.  He stopped at the bathroom.  I sent a message to our friends who had been updating Caringbrige.  I told them I would update CaringBridge myself with this when I was ready.  I drove home.

When the girls woke me up in the morning, I brought them downstairs.  There were enough people there, I laid back down.  D woke up and nursed.  I brought him down.  I had to tell the girls.  I think I will save that for another post.  D was biting like crazy so I had stopped nursing during fully waking hours.  When it was time to go pump, I wrote this on CaringBridge while pumping.  It was the best I could do.

 

Warrior Tim

Journal entry by MaryBeth Gaige — 6/11/2017

No one could have fought more valiantly.
No stone was left unturned in Tim’s excellent medical care.
As Tim’s immunity started to recover it started to fight the bacteria and yeast in his blood and he effectively had another septic shock-like reaction.
Everything started to get worse yesterday. They called me from the hospital and were not confident that with any amount of support (he was already getting every support available to human kind today) they would be able to keep him alive until morning.
At midnight I charged back to the hospital with Tim’s dad. It was very reminiscent of Tim and I charging to that hospital at midnight last summer…only this time I was driving and I was in a different kind of pain.
Tim went peacefully at 1:32 am on Sunday, June 11, 2017 with his father and his wife by his side, holding his hand, talking, singing and crying to him. We told him he was loved by so many. We told him he saved so many more lives with all the blood and platelet donations he inspired. We told him he would never truly be gone because he lives on in our hearts. Most especially mine, A’s, R’s and D’s! He will be with us always! But we knew he was suffering, and no one could have fought a better fight. So we gave him permission now to “sleep well.” (That is a line from the song we danced to at our wedding.)
We will have a celebration of life for Tim when that can appropriately be arranged. Details will be shared here when available.You will want to know how you can help. I appreciate all the support more than I can ever express. I will need support for a long time to come. I am sure the “friends of Timmy” who set up and run this site will come up with ways I can not think of and share.For now, I simply ask, as you grieve, if you knew and loved my Tim, please jot down some of your favorite memories that I can share with our children when the time is right. Now, or anytime you think of it. I will strive to keep his memory alive for them forever. It will do my heart good to read the memories as well.Thank you,
MaryBeth