Good Night, My Warrior Princess

[HAP]

Dear friends,

I wrote what follows yesterday morning. Then the rest of the crap, detailed in my other post, hit the fan. I also had an appointment to have my larynx checked out--everything there was clean--then a scholarship presentation at Bridgewater State in Jane's memory, and a NESPA board meeting in Boston. Busy child. I've re-edited it so the days are right.

One year ago yesterday was the last time Jane was in good shape during the daylight hours. She had started physical therapy therapy again the day before and had her sister and two friends come up from Fall River to see her. She had also begun to learn to talk with her tracheostomy.

December 8 we had another physical therapy session. But she was frustrated and angry at the pace, tired of being trapped in that hospital room in that hospital bed, and weary with the embarrassment of the frequent diarrhea. She asked me to carry her to the bathroom that night, but I had to tell her I couldn't because of the feeding tube and the wires that monitored her vitals.

Later, she told me she wanted to go home. She asked me to get the car and sneak her out of the hospital. I had to tell her she wasn't yet strong enough for that--but that in a couple of weeks they were sure she would be in rehab and that by February, she would be home and able to get up and down the stairs on her own.

I tried to get her to sleep, but she couldn't. The nurse told me I needed to get some sleep--and that if I slept she was sure Jane would, too. I woke up several times during the night--Jane was wide-awake every time. And that worried me.

In the morning I waited for rounds, then went to get breakfast. I didn't like eating in front of her, but she made clear she wanted me there that morning. After I ate, we got her out of bed and we watched a Frasier rerun. As it ended, Jane started to shake a little--and the nurse came in and asked her if she was tired. Jane nodded her head.

"Do you want us to put you back in bed so you can take a little nap?"

Again Jane nodded.

We put her in bed and she soon fell asleep. I sat next to the bed and held her hand while she slept and I tried to read a little bit. I remember being thankful that she was finally sleeping. I thought about Christmas and wondered what I should get her. We had been too busy all fall to do much shopping or thinking about Christmas. The house was still decked out for fall. Her on the mend was all I wanted.

About an hour later, the nurse came in. "I'm getting a strange blood pressure reading," she said. "I think the line is faulty again." We had had problems from the start getting blood pressure readings, even with a pediatric cuff. And if Jane moved at all--and sometimes even if she didn't--the sensor would stop working.

She took the blood pressure manually--then took it again. Jane slept through it, as she often had before.

In a little while one of the doctors came in. By now it was clear something was not right.

Just before noon, Jen, Jane's oncologist came in. Jane woke up when Jen started to talk. "All we can do now is make you comfortable." Jane went back to sleep. Neither Jen nor I could tell how much of what she had said Jane had understood.

Jen had to see patients that afternoon. "My body will be there," she said, "But my heart will be here."

Max, the intensivist, came in a little later. He repeated what Jen had said--that we were out of options and that all we could do was make her comfortable--and let her go the way she had said she wanted.

"But if she wakes up again, you have to make sure she knows what is happening," he said.

Just before 6 p.m. she woke up again.

I told her where things stood. We cried. We said good-bye. At 6:05 she drifted off again. I kissed her on the forehead.

"Good night my warrior princess," I whispered to her.

Then I took her hand and steeled myself for what lay ahead.

I talked to her and read to her and shared stories about her with her friends and her nurses and her doctors.

Just before 8 p.m. the next night, she took one last breath and let it out. Her heart stopped--and she was gone.

I took her wedding ring off her finger as she had told me to. I looked at the ring on my finger. She had told me to take it off if she died.

I couldn't do it.

I thought I would take it off after the funeral. I thought I would take it off on our anniversary.

I couldn't do it.

Just before 8 p.m. on Saturday...

Peace,

Harry

[jwielg1017]

I'm so sorry for your loss. Reading your story, hit home to me in some ways.

This is all very hard. It has been a long road for them, and for us, but now the hard road will continue for us.

I can understand also how you feel about the "ring". I myself cannot bring myself to take off my engagement ring. I feel like if i take it off, it's final. I'm no longer engaged.

Stay Strong, keep writing on here, it'll help you in little ways.

Bless you.

[kayc]

Harry,

What you wrote is very poignant, I almost felt I was intruding on sacred ground. I love that you call her your warrior princess, that is special. She truly was a warrior, she fought the good fight clear up to the bitter end.

The one year mark is a big thing, at least it was for me. It wasn't as hard as I'd expected, yes it was emotional, remembering...but I tried to view it as my milestone, I had survived an entire year of "firsts without", no easy feat! It is natural to remember "the end" as we think of it, and that is the truly hard part for me...even now, t 1/2 years later, I still relive it from time to time. My neighbor friend and I just went over our loved ones "end" the other night...it is hard, but it is nice to have someone to talk to about it that understands. The world expects we should be past it by now. There is no such thing! We widows/widowers know that.

[west]

Your post brought back so many memories of my husband and the two weeks at The Brigham and finally bring him home only to loose him so suddenly. You think you have at least a few months, but pancreatic cancer took him so quickly. I identified with your pain.

[Dwaynecg]

Dear Harry, My Friend,

I know what you felt in those final days. The week before when Nancy came over, I told her no Pauline is going to pull though again just like all the times before. She asks what makes you so positive about this? I know and I know Pauline. How wrong I was.

Pauline never cried once about what was happening to her, see it is part of our belief, for me I was a water fall, she comforted me, but I have never hidden that part of me the tender part.

That Morning I was up, well I really only slept on an off a couple hours, 4 AM, I was sitting by the bed had a cup of coffee, and I knew that this would be the day. That all those years of suffering pain and not being able to see at times, not being able to walk for years, were coming to a close. The Hospice nurse came over, I asked her right out. All the vitals were better than before, she said 3-4 days, but I knew it was today 2-25-2011. I was right at 2:30 PM with her last breath of life she could barely say " I LOVE YOU TOO ". I just laid with her for about a half an hour holding and talking to her until the phone rang it was her Carlen from her DR's office, just checking in on her. I told her she passed, she asked the time, and said I needed to call Hospice. It was a long night from there.

Harry I am grateful to have you as a friend, this is not the way we should have became friends, but we really are from two different worlds, and this links us together. I feel your pain, I now you understand and feel mine. I keep you in my thoughts everyday. I wish you well.

God Bless

Dwayne

[mfh]

Dear Harry,

Thank you for letting us into the world you just shared. It reminds me so of Bill's death and brings up feelings and memories for me and I imagine for all of us. Though that is painful, it is also helpful. It is strange, I remember all the details preceding Bill's death and then after he died, the memories are vague if present at all...the fog took over for a long while. Take care....Peace, Mary

[terp8r]

:'-(

[terp8r]

Harry, I've been thinking of you and wanted to make sure you're doing ok at the moment. Peace and hugs, Pam