WTF Do I SAY???

It’s December tomorrow.  It also happens to be a weekend.

The first weekend in December is when I traditionally start pulling out Christmas stuff, decorating the house, making cookies and when I get into high gear making cards & gifts etc.

Part of my Christmas chaos is the annual newsletter.  I include this with calendars I make of us from snapshots of the past year.

However… everyone knows what my last year has been like.

Everyone knows what’s been going on.

The *new* stuff is so tiny my letter would be… one paragraph?

“Happy Christmas everyone, this is the year that Mark got sick and died.  There’s *no* pictures of him I’m really willing to share, and *no* family pictures of us.   I hope your year didn’t suck as much as ours did. ”

I’m done with 2012.  Seriously done with it.   During one of Mark’s lucid moments I asked him what the last thing he remembered was.   It was Christmas last year.

That means – he didn’t remember New Years.

He didn’t remember my birthday.

All the memories he had of this year were of being very sick, in the hospital, and finally the last day.

Hey, guess what?  Those are most of my memories too.  Most of my memories until he died were those ones.  Then they became foggy with memories of AFTER.   Memories of LOSS.  Memories of planning a Celebration of Life, of having to send kids off to school without their Dad around, going on a vacation without him, Luke’s 11th birthday without him, our 13th anniversary, Thanksgiving and now we have Christmas.

I don’t like 2012.     It has been the single most painful year of my life.   My friend Adriana keeps promising me that the end of the Mayan calendar is about a change in consciousness.   A shift in how the world is perceived rather than the end of the world.

I hope so.  There are some good things happening, some amazing things happening in my life, but they are all counterbalanced by the pain of losing Mark.   It’s hard to fully enjoy something when there’s a little voice in your head going… “someone’s missing”

I need the shift.  I need the movement from pain and sorrow and sadness to joy.

But I still don’t know what to say in my newsletter… *sigh*

Grey's Anatomy

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It’s a P!nk Kind of Day

I stuck my iPod on P!nk and am letting it play through.  A friend let me rip her new album to my computer so I get to hear all the new songs… I love this album.  It’s awesome.   Full of bounce and attitude and emotion.

Mark loved P!nk.   He saw a performance on TV where he saw her do acrobatics above the crowd while she sang “Sober” and he immediately wanted to buy the song.

I wonder if he’s hanging out with me today… and that’s why I’m having a P!nk day… everything is playing P!nk…  I feel mostly at peace right now…

Missing Him Something Fierce

Ripping, tearing pain

Searing, blinding tears

Ache that threatens to crush my soul.

My skin is on fire

Crawling with want, with need

Pulling me into the abyss

Dragging me into the darkness.

Missing him.

His touch.

His voice.

His presence.

His love.

Missing him.

Feeling like I’m drowning

Like I’m burning

Like I’m being torn apart.

I cannot breathe

The wind has been knocked out of me

I’m clawing at my face

Trying to breathe, to control the pain

Of missing him

The Last Day

**WARNING – THIS POST MAY TRIGGER SOME PEOPLE**

His last day was one I’ll both never forget and one I can barely remember.   If this post seems a little scattered, my memories of that night & day are… so it fits.

I had spent the night in the hospital, holding his hand, talking to him when he was awake, sleeping half on him when he wasn’t.  Wandering in and out of his space.

Robert was the nurse who was amazing from the get go.  I had met him before he’d ever done a shift taking care of Mark – he had helped one of Mark’s nurses do a linen change or position change with Mark one night I was there.  I had hoped then that I’d get to spend some time with him – and he turned out to be an amazing support throughout the 6 months we were in the ICU.

I had asked for Robert to be our nurse that night.  I knew Patricia was going to be our nurse for the next day, but I wanted Robert to be there overnight – he was wonderfully caring and compassionate and I had a rapport with him.

When I needed to step away from Mark’s bedside Robert was there.  He was there to explain to me what would happen the next day, he was there to listen to me.   When he got on shift, and knowing that it was Mark’s last night, he removed the NG & NJ tubes to make Mark more comfortable.   He brought me a chair that I could sleep in somewhat comfortably.

When Kyle arrived, he brought his guitar in and sang for his Dad.  He sang all the songs that he’d written to that point… bringing all of us sitting on the other side of the curtain to tears.   Robert, Adriana, Naomi and I were giving Kyle some time alone with Mark to say his goodbyes and connect with his Dad one last time.

Adriana went to go home, I think… I know she came back the next day but I don’t remember where she was… Kyle went to the waiting room to sleep.  Naomi went to the waiting room to sleep.   For 4 or 5 hours, it was just Mark and I and Robert.

It may sound odd – but that was the most amazing, intimate time I had with him.   We drifted off holding hands.   I cried, he comforted me.  I kissed him, we talked, we loved each other fiercely.   I tried to get into bed with him for a snuggle but it hurt him, so we had to settle for a half snuggle.   We were there for each other.

Susan & Ivan and the kids arrived around 5am.  I think.   I know it was still dark, and it was very early in the morning.   That was the start of the gathering of friends and family.

Early in the day shift, Mark’s primary physician came in to have a final conversation with him – to confirm that yes, Mark was sure that this was what he wanted.   The ICU doctors came in to confirm.  Patricia confirmed.

At this point, I think it was Kyle, Naomi, Susan & Ivan & kids, and me there.  My mom was enroute, Kathy was bringing the boys down, and Katie and Adam were on their way.  Roxy came in from Chiliwack.

Kathy didn’t arrive until after 9.30 with the boys.  I told the doctors that we WOULD wait until my boys got there and they had a chance to say good bye to their Dad.

How to break my heart again and again… make me tell my kids that Daddy is dying.   I’d already had to go through this once with my older two kids – and now I had to do it again with the younger ones.   I had never hidden the seriousness of Mark’s illnesses from them.  They had been there throughout everything.   When we thought we were going to lose him in January, they came down to be with us.

Around 10 – 10.15 the ventilator was turned off.  Patricia explained that as Mark’s discomfort increased, she would increase the hydromorphone to keep him comfortable.   Eventually his breathing would stop, and his heart would stop.   It could take hours, it could take days.

Everyone got to say their goodbyes.  Everyone got to talk to Mark, talk to the boys, talk to me.  We brought in a bunch of chairs, sat on the counters and basically crowded 12-15 people in an area where you’re only supposed to have 2 visitors.

Some came and went.  Susan couldn’t stay in at all times because she’d left her husband and kids out in the waiting room and needed to check on them.    Adriana and Roxy went to go buy wine.   We decided that wine was a good idea while we sat with Mark.  We hid it from the nurses but I’m pretty sure the nurses knew :p  They didn’t say much about it.    We were discrete so I think it was ok.

There was a lot of love and laughter in that room.  We told stories, we told jokes and we smiled and laughed and we cried.

We had a minister come in to say a prayer.  He was in the wrong room… I wish I could remember the name of the guy he was supposed to say a prayer for … but because he was there, he said a prayer for Mark anyhow.   It was so funny… even after being told Mark’s name, he still used the other guy’s name.   We laughed.  It was a welcome respite from the waiting.

I checked with the nurses as to what we were looking for.  What signs were we looking for that the end was near?  I wanted to make sure that everyone was there and had a chance to say good bye.

She told us the signs – and shortly after he reached that point.   I gathered everyone in to say final good byes.

Everyone said good bye.  I remember watching the monitors, waiting for my turn, and hoping he wouldn’t slip away before I could kiss him one last time.

The day had been overcast.

As I kissed him goodbye for the final time, told him I loved him and he took his last breath… the sun broke through and shone into his room.  I remember kissing him over and over and over, telling him how much I love him.  My mom touched me and said that he was gone… all I could say through my tears was… “I know”

He died at 4.15pm.

We sat there a while longer.   I started to wash him, clean him up.  I wanted to be a part of that process for the end, but Patricia wouldn’t let me.   So I did what I could to clean him up.

At one point, after most people had left the room, I climbed on the bed to snuggle him.  It couldn’t hurt him any longer and I needed that last snuggle.   I cried, broken, lost.   It wasn’t him laying there.

I checked with Patricia about the need for the bed.   She said that no, we could take as much time as we needed in there regardless of anything else.

I know Mark and he would have been appalled if we were holding up a bed that someone else might need to get better.   I had been around the ICU long enough at that point that I checked the board – there were two other empty beds so I was ok with us staying there a little longer.

I remember gathering his stuff.  I remember spending more time with him.  I remember kissing him one last time.

I don’t remember how I got home or how the boys got home.  I just remember the couch.  Staying on the couch and being lost on the couch.  The night after that was blurry and lost to me.  I don’t remember who was there or who wasn’t.  But I remember being surrounded by friends and family.  I remember being hugged and loved.  I remember being broken.

I know that this post cannot convey the emotions and the reality of that day… I know that I’m barely scratching the surface of it.  I re-read it and it doesn’t feel like it reflects the depth of that day.

Today mark’s 5 months since he died. 5 months being a widow.  5 months since my children lost their father.  5 months of trying to find a new normal.  5 months of grief.  5 months of missing Mark.

 

5am Epiphanies…

Well, they didn’t all happen at 5am, but the last one did.  I was updating my profile on thewiddahood.com this morning, since I’m awake at 5am… LOL and my profile was fairly sparse since I initially signed up when I had no cognitive function right after Mark died.

The epiphanies I’ve been having are about George, the incredibly sexxy man I’m dating and what I want from him.

I’m going to try to put my thoughts in order… make them into a coherent post, because they’re all sort of jumbled up in a bunch of short bursts of “aha!!” moments.

I’m not going to lie.  When I first started dating George, the thought that he could be what Mark was to me crossed my mind for a moment or two… and then I let that go.  I don’t want George to be what Mark was to me – he’s not Mark.  I want Mark for that. I want Mark to be there for me on that level.  Asking anyone else to fill that role would not only be unfair to me, but incredibly unfair to them.

It’s a massive shift in how I see the world, learning to look at what I want/need and really be clear about it.

I had that beautiful, fairy tale love.   I’m not going to pretend and say it was perfect, it wasn’t.  That’s the reason that freaking song is stuck in my head.   But it was my forever.

As my head has cleared somewhat over the last month, I’ve come to realize that what I really want/need from George is exactly what he has to offer.    Dating, snuggling, companionship… and that’s about it.  I don’t know what the future will bring, but I don’t expect him to change what he has to offer.  If my needs or wants change – I’ll talk to him about it, but I have too much healing to go through to ask anyone else to give me more than that.

My friends give me the love and support I need to get through the bad days.    They’re awesome.    I love them dearly.  They give me the space I need to be sad, but stay close if I need a hug.  Did I mention they’re awesome?

This morning’s epiphany was that George is my happy place.  I enjoy going and spending time with him and being able to let go of the sadness because it doesn’t belong with him.  I don’t go to George when I’m sad, or if I do, I don’t talk about the sad, I focus on the happy.

He’s my happy place, my oasis, my calm in the chaos of my life.

And then the happy spills out into my house and I’m able to be more present and connected with my kids and their happy.

Did you know happy is contagious? :p

Blarg

The sound of frustration without the energy to do anything about it.

Stolen from a friend.

But that’s how I feel right now.  BLARG.

I’m sad, I’m mad, I’m lonely, I don’t want to be near anyone, I don’t want to be alone.

I want to hit things.

I want to throw things.

I want to have a temper tantrum.

I don’t have the energy to do any of it.

Because the emotions of today have wiped me out entirely.

Blarg.

Double blarg.

Five Months Ago Today…

***WARNING – THIS POST MAY BE A TRIGGER FOR SOME***

Five months ago today, I was told doctors wanted to have a family meeting.   Five months ago today, I made Katie & Adam & Kathy come down with me to meet with the doctors and figure out what needed to happen with Mark.

I had spent the previous night in a panick – one nurse casually mentioned to me that the docs wanted to talk to me – that Mark was refusing care.

I had not seen Mark since Thursday.  I don’t remember why I missed Friday, Saturday was a derby bout, and Sunday was a beautiful day with traffic… I didn’t want to sit in traffic with the boys for 2 hours.  So I didn’t go for 3 days.   I think, out of everything that happened over the 5 1/2 months he was in the hospital – that weekend was my only regret.

If I could go back and redo that weekend – I would have been there on Sunday.  Friday too.

The previous month, three weeks, I don’t know exactly how long, had been full of ups and downs.  Lactaid levels had gone dangerously high, so high that the doctors described it as being “not compatible with life” but he kept recovering.  Doctors found and controlled a bleed, but he kept having dangerous dips.   His insulin levels were stabalizing, his kidney function was stabalizing, but he couldn’t get off the ventilator.

That morning, we met with the doctors.   Mark was clear, alert, and very much himself, and the doctors explained to us that Mark wasn’t getting any nutrition.   The TPN feed (intravenous) would kill his liver, and the tube feed was leaking out his gut and out one of the drains in his stomach.   Essentially, he was starving.

Without nutrition, his body couldn’t repair itself.

He was starting to refuse care.  He wouldn’t allow nurses to clean him up, or to change bandages, or to do just about anything…  Even when I got there, he refused to let me help.

The doctors explained it all very clearly.  How the only hope for nutrition was an experimental TPN from the UK – that they didn’t know if they could get it or how long it would take to get it, but if Mark had another dip like he’d had last week – that it would be doing more harm than good to bring him back again.

Mark said he wanted to continue to fight.  He was very clear about that. He wanted to get better, he wanted to come home.  He wanted to keep going.

We told the doctors this and they went in search of the experimental TPN and his nurse provided exceptional care and support for us.

In the afternoon, Mark told me he wanted me to take him home.   In the past he had asked to be taken home, but when I explained to him that it meant he wouldn’t get better, he’d agree he was better off in the hospital.

This time, he was insistent that I take him home.

I explained to him, gently, with love but very clearly… If I took him home, he would die.   He repeated to take him home.   I asked him if he understood, that if he came home with me, he would not survive, he would die.  He told me that yes, he understood, that he wanted to go home.

I had spent 5 1/2 months fighting to keep him alive, but always cognizant of his choices and his desire.  My overriding policy for every single medical decision I made was… keep fighting until HE said he was done.   Until HE decided that he was done fighting or the doctors couldn’t do anything – we would continue to move forward with the expectation that he would get better and come home to us.

He decided he was done.  He decided he was done fighting, that he wanted to go home, and that he was done.

So I told the nurses.  I told the doctors.  I told the Facebook community.   I started gathering friends and family around.   I sent Kyle money so he could be there.  I had friends come down to be with me, because I was not leaving Mark’s side that night.  I had friends come from different parts of the province.

His primary care doctor had a conversation with me about putting pressure on Mark to try harder, wait a little longer, to push that much more.  I told him that I understood what he was saying – but that I knew my husband.  I knew my husband would fight until he had no fight left.     His doctor was ever the optimist.

Naomi & Adriana were there in the evening.   Kyle arrived by bus around 10.  He played his guitar and sang for him, while Adriana and Naomi and I sat outside with Robert (such an amazing nurse).

I spent the night in a chair at Mark’s bedside – we “talked” and I cried, and he held my hand and stroked my hair.   He told me he loved me.  He told me everything I needed to hear, and I hope I told him everything he needed to hear.  I did ask him, at one point… if I asked him to try for just one more week.  7 little days, would he?  When he said no, I understood that he was firm in his decision.   And I was ok with that.

You have to understand… this is a man who loved me so much that he would do anything in his power to make me happy.  He would do anything he could to fulfil my wishes and wants…  He frequently put me first above his needs.  In our wedding video – he says “You make me happy.  I want to make you happy”  and that’s what he did.  He tried to make me happy.   So when he said he was done, when he knew the pain it would cause me and our family, and he still was done fighting, I knew that he was truly done.   I knew there was no changing his mind.   And I love him enough to accept and support him in that decision.

Not everyone gets the chance to say everything that is needed.  Not everyone gets the opportunity to say good bye.  Not everyone gets to hold their husband’s hand and love them fiercely when their husband tells them that he doesn’t have any fight left in him.  Not everyone gets that… I did.

I just realized – Christmas Day will be exactly 6 months since decision day.   Exactly 6 months.  I’ll worry about that in a month.

Today?   Today is the memory of 5 months ago.  Today is the memory of tears.   Today is the memory of having to gather friends and family to come say goodbye.

Today it’s been five months.