There is something called terminal agitation.
It is most common in young mothers.
Michelle had it, and she had it very bad.
A product of not being at peace.
I’ll talk more about this in the future, as the fight she put up deserves its own post, but for now I want to focus on her last day.
Michelle had been asleep for about a week now. They sedated her, using a special medicine that they only had to utilize a couple of times a year.
The goal of hospice is to keep you comfortable. It is not to save your life.
You go to hospice because your time is close, and nothing else can be done.
Once Michelle started experiencing her extreme terminal agitation, she was no longer comfortable, and since nothing else would work – they had to give her this special medicine.
So Michelle had been sleeping peacefully for about a week now.
That morning, Friday, January 22nd, 2016 the doctor came in early, as they always did; around 8:00am.
Funny thing, in hospice, the doctor’s go by their first names.
I actually liked it.
Dr. Chris always struck the right tone for being a doctor at hospice. Somber, yet caring and comforting.
Everyone at hospice was amazing, but again, I’ll get into that more in future posts.
I had my regular daily chat with the doctor and she expressed to me that we were getting closer, something I had been hearing for a couple of weeks now.
I could tell it was different the last few days though.
We really were getting closer, and they knew it.
I decided I needed to talk to Michelle again.
It was still early and we were a few hours away from visitors.
I asked the nurse to leave the room so we could have a moment.
I read it to her.
I have no idea how. But I did it.
I couldn’t stop crying.
They say they can hear you, and even if that is true the fact that I was crying so much means realistically she probably couldn’t understand much of what I was saying anyways.
I read her the eulogy.
I wanted her to hear it before anyone else.
I told her I hoped that it made her proud. And then I cried some more.
Tears flowing down my cheeks as I kept saying, ”I love you so much, I love you so much”.
As though she didn’t already know.
A proclamation of love, for the only woman I ever loved.
She couldn’t say anything back, obviously, but in my heart I felt her saying those same words to me as well.
“I love you too John.”
After I semi composed myself, I decided to play her daughter’s voice for her.
About 10 times.
Someone had given me the idea to have her daughter voice record herself telling Michelle that she loved her and missed her.
It was a great idea.
So I did that.
And then I played it for Michelle.
Over and over again.
I was hoping between hearing my eulogy, hearing her daughter’s voice and me continuing to tell her that it was ok to go now, that she would finally find some peace and let go.
Michelle was a fighter the likes of which none of us have ever seen before.
Her strength was other worldly.
I sat there for awhile just holding her hand and talking to her, and eventually my mom and Michelle’s cousins, Julie and Kristen would come. Usually once the first visitor of the day would arrive I would go take a little breather in the waiting room.
But not on this day.
I felt something was going to happen and I didn’t want to leave the room.
Not even for a second.
I put on some music as I sat next to Julie on the ottoman, right next to Michelle’s bed.
I held Michelle’s beautiful hand, tightly, just as I had done so many times before.
The realization that I would no longer have her hand to hold began to hit me.
I had not really cried in front of anyone in a while but a certain song came on, I can’t even remember which one, and I started to sob.
Watching your soul mate die, just after you found your way back to each other, at the young age of 30 is gut wrenching, and soul crushing.
I didn’t want her to go.
Not my wife.
Not my everything.
I needed her to stay so badly.
Michelle was the best person I have ever known and she certainly did not deserve this fate.
I can remember Julie rubbing my back as I cried.
After I composed myself, Julie had a great idea.
She suggested we have Michelle’s nails painted, a service they offer at hospice.
After, she also suggested that we put her wedding ring on her finger, something that I somehow hadn’t thought about as I lived the daily hell that is watching your wife slowly deteriorate.
She was so happy the day we got engaged,
I’ll never forget her smile or how she kept saying, ‘”Oh my God, I can’t believe we’re getting married. John! We’re getting married.”
Fifty beautiful years awaited us, or so that is what it should have been.
Visitors would come and go throughout the day and then it happened, late afternoon.
Ann, one of the hospice nurses I got close with, came in and she said it to me.
She said Michelle only had a few hours left.
I took a deep breath and tried to gather myself.
I went into the waiting room where Michelle’s family was talking to another young husband whose wife was also in hospice and I told them.
As I write this I’m shaking recalling these moments.
My step daughter was on her way and I started to mentally prepare myself to tell her.
Of course we had shielded her from seeing Michelle during her bad times at hospice, so she only saw her sleep.
I spoke to the social worker about it and I was ready.
I pulled her into the room and had her sit with me on the chair next to her beautiful mother, my amazing wife.
The social worker was in the room as was Michelle’s cousin Caitlin.
I looked at my beautiful step daughter, as we sat and cuddled.
I was trying to get the words out.
I started by telling her how much mommy and I loved her, with all our hearts.
I was tearing up.
This was heart breaking.
This poor little girl was about to be crushed by what I would say next.
Somehow, someway, I said it.
I told her mommy was going to be going to Heaven in a couple of hours.
I told her mommy loved her more than anything in the world, and that she would always be with us.
I told her it was ok to feel pain, because this was so far beyond painful.
She looked at me with her big, beautiful eyes and I could see tears swelling up in them, waiting to burst out.
I told her it was ok to cry.
We cried together and held onto each other for so long.
After two and a half years of fear, it was really about to happen.
She was really about to go.
As usual, the tears and hugs we shared turned into laughter.
Her hair kept getting in my mouth and I started choking from it.
One of us always turns tears into laughter when we are together. We make a good team that way.
She said she wanted to play in the family room, so family would rotate so that we made sure she always had people with her, while others were in the room with Michelle.
Visitors would come and go, but the basic group was there still as everyone was dreading what was about to happen.
As we sat and waited for the inevitable to unfold, we began to tell funny stories about Michelle.
I told the story about the first time that I ever met my step daughter.
Then, about ten minutes before she left us I noticed a dramatic change in her breathing.
I knew it was close.
I told everyone in the room to be quiet, although I don’t think I said it that nicely.
We all just sat and stood around her.
More dramatic changes in her breathing, and then I thought it stopped.
I called the nurse in and she listened to her.
She said she was still breathing, but that it was so close.
The nurse left.
Everyone went up and gave Michelle a final kiss.
I went last and gave her about 10 of them.
Right on her beautiful lips.
This time for real.
I called the nurse back in.
She listened to her for about 90 seconds.
Her name was Yola.
I wouldn’t take my eyes off Yola.
I was waiting for her to say it.
I was waiting for her to say that the love of my life was gone.
For my everything to be shattered.
She stopped listening and nodded to me.
Michelle, in the physical form, had left us.
“I don’t want to die John. I don’t want to die,” her words played over and over in my head as though on repeat – as though my brain did not contain the power to press pause or stop.
The love of my life and mother to the little girl that I love as my very own was no longer with us.
Her home was in Heaven now.
I immediately got up to go to our little girl.
Someone tried to stop me to make sure that I was ok, but I wouldn’t let them.
I had to go be with her.
I always said that my heart had 2 beats.
One for Michelle, and one for my step daughter.
I had to go be with my other beat.
I got to the waiting room and I couldn’t bring the words to my mouth at first so I just looked at her with tears in my eyes, and nodded to her.
Just as Yola had nodded to me.
She had those same tears.
“Mommy went to Heaven,” I somehow said as I looked deep into her eyes.
The pain so real and jarring that it completely took my breath away.
We both cried so hard together for minutes, holding each other tight.
I could see all the nurses at the nursing station looking at us from the corner of my eye.
That damn hair got back in my mouth and I cracked a joke about it, and then one about mommy – and we both started to laugh.
Tears and laughter, once again.
After a few minutes, she said wanted to stay in the family room – so everyone kept rotating to spend time with her (a special shout out to our friend Jenny’s daughter Kaylee who is 14 and stayed with her the entire time – before and after Michelle passed – they bonded that night and it is something that I will never forget).
In the room, others listened to the wedding songs that we had picked out for the ceremony that was now just two weeks away.
I ceremony that we would never get to experience.
Towards the end I asked everyone to leave the room and I laid in the bed with Michelle for about an hour.
I talked to her.
I told her everything, again.
I talked to her about our youth and our adult time together.
I told her how much I loved her and how I would be there for my other love, her daughter.
Always and forever.
I talked to her about what we needed from her, and how she better come visit me in my dreams.
I held her, and I kissed her.
And I didn’t want to leave her.
Finally the time came.
The funeral home arrived and we had to go.
Leaving the room with her in there was undoubtedly the hardest thing I’ve ever had to do.
I kept telling her, “I have to go now. I have to go now.”
But I couldn’t go.
I didn’t want to leave her alone.
I so didn’t want to leave her alone.
Not my wife.
Not after everything we had been through.
I had never left her before, but now I had no choice.
I had already lost her once as teenagers and now I was losing her again.
My heart and soul crushed beyond anything words can explain, or a mind that has never experienced that type of loss can comprehend.
Finally, after a few moments of hardcore sobbing and apologizing to her for having to go, I somehow walked out of the room.
Somehow I left her.
For the first time. And for the last time. All in one time.
Hospice does this thing called a Celebration of Life.
They carry the body out to the hearst while playing a song you select, and they usually drape the body in one of their special blankets.
I picked ‘My Fight Song’ by Rachel Platten.
It always reminded me of Michelle, and I would tear up every time I heard it.
Well, truth be told, I would tear up on good days. On bad day’s I would cry like a baby when it played.
They carried Michelle out as we all followed to ‘My Fight Song’.
For Michelle’s 30th birthday that had just passed I bought her a couple of custom gifts, because really – what do you buy someone who is terminally ill?
One of those gifts was a blanket with a picture of her daughter on it that said “I Love You Mommy”.
We used that blanket to drape Michelle.
Fitting, considering Michelle’s profound love for the joy of her life.
Her little girl.
They carried Michelle.
Song and blanket and all.
And then they put her body in the hearst.
I lost it.
Yola was right by me as I started to cry so hard, a grown man sobbing without control.
This nurse, who felt more like family than a healthcare provider, gave me the biggest hug and told me that everyone at hospice was there for us.
I knew she meant it.
I went to my step daughter and we did our usual hug as we held each other, but this time no laughter.
Just holding each other.
Just comforting each other as our hearts shattered into a million pieces.
The woman we loved so much, mommy and wife, wife and mommy, no longer with us in the human form.
We missed her so much already, even before the reality of what life would be like without her had set in.
This was Michelle’s last day on Earth.
Tragic, yet beautiful.
Friday, January 22nd, 2016.
She went peacefully after putting up the most epic of fights.
You my wife, are the definition of strength.