Saying Goodbye

Margret knew the end was coming. She knew it before I did. I suspected, but I didn't want to know. It broke my heart when she said, "Please let me go." I put my head down on her tummy there in the hospital bed and I cried. She patted my back, and said, "Don't cry mommy. I love you."

On Sunday, the doctor stopped after rounds to tell me they would not be changing her treatment any more because she was "end stage". Her sister C who planned to go home Sunday night changed her plans. C arranged for D to come from the other coast. On the first plane she could catch. Because we did not know how much longer Margret had left. C did it because I said I couldn't handle the details. Really? I couldn't. Besides, I didn't want to leave Margret's side.

I called family. I called friends. On my cel phone. From the Cardiac Intensive Care Unit. D arrived around 1 am with her 5 week old baby. I held the baby on the bed, and put Margret's hand on the tiny feet. The feet wiggled. She moved her hand off. I said, "Those are the baby's feet. Aren't they tiny?" She put her hand back on the little feet. I talked. She kept her hand on those precious feet. D took the baby and leaned him across Margret's tummy, his Auntie's tummy, and put Margret's hand on his back. She said, "That's the baby you're holding, keep your hand there so he doesn't fall." She talked to her sister, and Margret kept her hand on the baby's back.

The last sister, B, the second oldest, arrived with her family around 2am. She came up and hugged Margret, and talked a bit, but the sedatives and morphine did their work and Margret was finally sleeping. We all went to sleep. Morning came. The nurse taped a picture of a white flower onto the door, where once, before her virus screen came back clear, were directions to mask and gown as a precaution against contagion. Friends arrived, and my husband.

We all tell Margret how much we love her, how wonderful she is. We tell our favorite stories again, one last time. We remember our favorite Margret Quotes. Mine is "I'm only fat around the edges." The doctor comes in, and the chaplain, and the Advanced Care team, and our social worker. They stand in the back.

The nurse gives a dose of morphine so Margret won't feel panic as her carbon dioxide level starts to rise. She turns off the monitor.

The RT and I take the hated ventilator mask off. "No more mask, Margret," I say. She raises both arms straight up, as if to say, "Hallelujah, the mask is off!!"

I take her hand, (the RT has turned off the ventilator, no more tweetling vent alarms), husband puts his hand on her arm next to my hand. She looks at me, looks at him. D starts singing, "I'll Fly Away". Most of the folks in the room join in. I can't. My throat has closed up, and the tears run down my face. I look up to see tears in the chaplain's eyes. I see two sisters holding her other hand. Several hands on her legs belong to the other sister, friends. Letting her know by touch that she is loved, and not alone. Not alone. She breathes slower. The song ends. Voices trail away. Slower. Stops. So peaceful. She looks asleep.

The doctor listens with his stethoscope. Looks at the clock, "time of death... 1:45PM."

I Can Hardly Believe It Has Been Four Months

I found this verse on a message board:

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry,
I am not there; I did not die.

and it made me cry. The person who posted it also said "It is always hard for those left behind because to them falls the grieving."

That would be me. And a lot of other people. We're the "left behind" and "grieving".

I can imagine Margret in Heaven, because she was a believer. Her Heaven would be a place where the weather was warm and she didn't have to bundle up in sweaters and coats and hats, and snow boots, and wrap scarves around her neck and face to warm the air she breathed. There would be friends to converse with, too. Margret would talk to anyone, and she made friends easily. There would be babies to play with; Margret loved babies, and they loved her right back. There would be pools to swim in, parks to walk through with flowers to pick, and there would be horses to ride; she liked all those things. Food, don't forget the food! There would be all sorts of meals, and restaurants, and gatherings with food at the center. I miss her saying, "Mom, do you know what's for dinner?" I tried all the ways I could think of to get her to say, "I'm hungry," or "I want something to eat," but she insisted on asking "Do you know what's for lunch?" or dinner, or breakfast, or snack. It was a frustration, but it was how she let me know hunger was on her mind.

Margret, I love you. I miss you. I will remember you, always, as the most incredible gift of my life. Right now I grieve for you. Please don't be unhappy with me, it's such a big change from you here, hugging me, coming through the door of an afternoon with a smile and "Mom, I'm home!" to having the house echoing with your absence.

Battling Demons in my Mind

Doubts, and fears, and demons in your mind are a part of grieving. They will subside with time. Knowing that doesn't make it any easier to deal with them and the pain they bring.

Days are pretty good, mostly. The worst time is evening when I would tuck Margret into bed, give her a hug and a kiss and talk about what we had planned for the next day.

In the daytime, I am not bothered by doubts about what I did and did not do while Margret was at the hospital. I did my best. I acknowledge that I am only human, and not infallible. But when I close my eyes for sleep, some contrary part of my mind throws up images from those days, and asks me, "Are you sure? Are you really sure? Might it have been better if...?"

One of the images is walking back into Margret's room into a flurry of masked and gowned activity, and seeing Margret in bed, with a nosebleed, looking absolutely terrified, the flow of the oxygen around the nasal cannula making drops of blood fly. I went right to her, ducking around and under busy people, took her hand, told her "Mommy's here!" and comforted her as best I could. When I had gone off for breakfast, all was quiet. That contrary part of my mind thinks I should have been in her room holding her hand at the start of the nosebleed, comforting her.

I know perfectly well that I had to take care of myself, eat, sleep, take breaks, or I would be no good to Margret. No blame attaches to me... for any of it... but that insidious little part asks if I really needed to talk so long on the cel after eating? Would I have made a difference if I had been back sooner? Would Margret have been less terrified? I don't know. What happened, happened. I have to learn to live with it, and not pick myself apart over things I cannot change.

Another image, one I've come to terms with, is Margret's wide eyes above the nasal pillow mask, and her saying, "Please let me go!" I asked her where she wanted to go, and she answered, "I want to go home." I responded by saying we would go home when she was better. It struck me at the time that she wanted to die and go to heaven, but I didn't want to be hearing that. Later the same day she said, "I want to go," and when I asked "where?" she pointed towards the ceiling and said, "Up" Would it have been better to let her go right then? No. the doctors were hoping a few more days would allow the virus to burn out and let her body begin to heal. No family were there right then but she and I, and C, for one, would be seriously unhappy not to be present. During the day, awake, I could accept my decisions and the way events played out. In the dark of the nights, asleep, the accusing demons in my mind threw this one up again and again, and would not let me go.

The final time, I got up, weeping, went and sat in Margret's bedroom, on the edge of her bed, and talked to her as if it were bedtime and we were chatting as I tucked her in. I said I was sorry she had to be so uncomfortable, but wasn't she glad to have seen D again? and to have held the new baby? I told her that D would have been devastated to miss seeing her alive one last time. D has regrets already, she doesn't need any more. I said, "Please understand that I was afraid. For both of us. I wasn't ready to let you go." Then I went back to bed, and fell asleep, with no more scary images that night.

Margret wanted a hot pink robe she saw in the Bath & Bodyworks Catalog last Christmas, and my husband bought it for her. She offered "I'll share it with you, Mom" and I think I'll take her up on that offer now. Snuggling into the robe reminds me of her generosity, her warmth, her thoughtfulness. Happy memories, weapons to slay the demons in my mind.

Time to Remember and Give Thanks

Husband and I went to a memorial service in September for parents/families of children who died. Held in the auditorium at the hospital, it was beautiful, moving, and I cried lots. The registration table held many many individual packs of tissues as well as the registration materials. These people were ready for me.

The program artwork featured butterflies and dragonflies, with a poem on the inner cover that set me sobbing just reading it through:

Like the butterfly who lights beside us
like a sunbeam -
for a brief moment
its glory and beauty
belong to our world -
but then it flies on again.

And though we wish it could have stayed
we are so thankful to have seen it.

There was music played by hospital staff - cello, violin, keyboard and 2 voices - doctor, security guard, and 3 music therapists, more music - by Hugworks, Jim Newton and Paul G. Hill, a welcome by the bereavement coordinator, a Call to Remember, read by a chaplain, "I Believe" performed by Hugworks, a physician's tribute read by one of the doctors, "I Know Your Names"

Then the remembrance, where a staff person read names while pictures were projected on the screen at the front. The names were in groups of 10. The photos showed the children... the smallest a tiny tiny premie whose hand was maybe the size of a quarter, fingers wrapped around his daddy's index finger, the oldest my Margret.

My husband sat next to me, but on my other side, I sat next to a girl of about 7 or 8 years. She had been sitting with her Grammy and Mom in the row behind, but moved forward a row to sit next to her cousin. Her baby brother was among the lost. When his name was read, both she and her mother screamed and cried aloud. I patted her back, and gave her a tissue. When tears ran freely down my cheeks at my daughter's photo and name, she patted my knee and whispered to me, "Don't cry, you'll be OK."

After the names came a reading of "We Remember Them", from Gates of Prayer, "If I Could" performed by Hugworks, a reading of "Waterbugs and Dragonflies" a story of metamorphosis

Afterwards, there were helium filled butterfly balloons, was space where the parents could get together and talk, and have coffee and snacks. I chatted with the mothers of two young ladies who died of cancer, ages 22 and 23.

I tried to write about the memorial before, and kept dissolving into tears. It didn't help me that husband found the particular arrangement of Over the Rainbow/Wonderful world medley that they did - it's on youtube, by Israel Kamakawiwo'Ole - and played it multiple times. (probably because there are many versions of it on youtube) It's beautiful, but it makes me cry. Here are a couple versions...

http://youtube.com/watch?v=PL-uL2M3xvM

http://youtube.com/watch?v=Hh2vre3YwM4