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."

Do or Not Do, There is no Try

To quote Yoda, there is no try, either you do something, or you don't do it.

Me, I sometimes make an attempt, fall short, scrap it, and make another attempt. Sometimes I don't scrap what I consider yet another unsuccessful attempt, and the not me portion of the world thinks it's OK. That always surprises me. But I digress.

In my case, I guess I am not doing. *sigh*

Writing is not coming easily to me now. Maybe there is too much to say, too many topics to choose from, too little motivation to just PICK ONE and write about it. I can't pick just one reason, or one theme/topic/subject.

Husband and I are going to the 9th Annual National Children's Memorial Day Candle Lighting Ceremony on Sunday. I'm looking forward to another formal remembrance for Margret.

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And now for something completely different:

BILL are a band in the Boston area. I found mention of them on Unringing the Bell. Thanks Tricia.

They even have a MySpace page with some music playing on it.

But what, you ask, is so special about this band that you post about it in your Margret space?

Firstly, the lead singer has Down syndrome.

Yup.

Secondly, he isn't some adorable little kid. He and his brother are men, in their forties.

It's different for me to think of a man with DS as the front man for a band. Margret liked music well enough, but her singing was not great, definitely not front man quality. Mine isn't either, but that is another story.

Here we have yet another career open to persons with the inclination to pursue it, whether they have the normal count of chromosomes, or whether they have an additional one in the 21 set.

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.

How Hard Can it Be?

How hard can it be to encapsulate the life of someone you hold dear in 245 words? Impossible.

It isn't too hard to give a quick glimpse into where she lived and what she did.

But to capture the essence of who she was, who she really was, in words, will take a very long time, and a tremendous number of words. It will take a book.

Here is Margret's obituary, slightly abbreviated:

Margret 37 beloved daughter of Ann and John of here, Louis of there, loving sister of Flora, Helen and Rose, devoted auntie to two neices, 5 nephews, also survived by two grandfathers, aunts, uncles, cousins and too many friends to enumerate, died peacefully in the midst of her family Monday at the Hospital in Philadelphia

Born in Allentown, Pennsylvania, she lived in the Lehigh Valley her whole life.

Through Via of the Lehigh Valley she volunteered at Project Child of Valley Youth House, Meals on Wheels of Northampton County, Lehigh Valley Hospital's Outpatient Surgical Department, Musikfest, Kirkland Village, Praxis and 3rd Street Alliance of Easton among others. She attended the day program at Concepts.

A 1992 graduate of Wilson High School, she gave an address at the ceremonies.

Margret often said, "I would do anything to help ...." To honor her generous, helpful spirit, in lieu of flowers, donations to www.chop.edu.

Services: A Celebration of Margret's Life will be on Friday at 8PM in the X Funeral Home, visitation from 6 to 8 PM in the Funeral Home.

The family requests that you dress in party style to help celebrate Margret's life and spirit.

Contributions: In lieu of Flowers to the Cardiac Center of the Children's Hospital of Philadelphia

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

Bitter Sweet Celebration

We chose to call it a Celebration of Life instead of a Funeral.

Her sisters went shopping to buy her last party dress. They succeeded, although mid July is not the best time to be hunting a prom gown. The dress they found was hot pink, floor length, with spaghetti straps, and decorated with swirls of beads and sequins. Had this been chosen for a normal event, the dress would need to be shortened by more than a foot, for Margret was only four feet eight inches tall. In this instance, in the creative hands of our funeral director, the excess length became long sleeves, and the beaded portion filled in between the top of the dress and the sleeves.

We planned bright colored flowers and had balloons in pink, orange and yellow that echoed the flower colors. For background music I made a cd including her favorite artists, Hanna Montana, Billy Ray Cyrus, Ricky Martin, Maná. Her youngest sister requested tracks by the Marshall Family; Dad asked for Livin' La Vida Loca, because it every time he heard it, it reminded him of her and how she was so willing to dance. I picked Eres Mi Religión by Maná, and Ángel by Cristian Castro, among others, because she so enjoyed listening when I played music of that sort on the Latin Beat. Sisters B and C each picked a song that brought her to their minds.

As part of the service, attendees were encouraged to come forward and share their unique memories of Margret with the rest of us. Seventeen people overcame their reluctance to speak off the cuff, and shared. An astounding number!

C lent her video camera to Margret's oldest niece, so there would be a record of the celebration to share with family members who could not join us. She did a fine job.

Although C arranged for me to watch the tape, I could not bring myself to do so for weeks. I watched the video, finally, a couple nights ago. I experienced relief, and a deep appreciation for everyone who braved the discomfort of speaking in front of a group. I transcribed one of the memories that moved me most to share with you, only leaving out some 'and's, and a bit that I could not hear well.

F speaks on Margret

My last memory of Margret was at B's Octoberfest. She gave me a hard time because she thought I was flirting with C. She in no uncertain terms told that that was HER sister and I was not allowed to have her. I think she was teasing me. She also ribbed my brother about it and he was very confused. She had a funny sense of humor that way.

I've known C since I was 5 . . .

I've known the M family, all encompassing, as it has changed throughout the years, and I always remember Margret,

and if the M family is like a light house showing love, no matter what situation happened there was always love, Margret was the beacon, at the top.

She was the bright light that you always gravitated to; you always felt good around her.

I can think back to even when I was a child, hanging with C (when she wasn't being bad),
she was there, and she was smiling, and she was laughing, and always joking around, wanting to do something and be involved.

I think we should take from that as a lesson on how to live - a lot of times we let the stressors of our life take us over,

I think sometimes we should stop and think about Margret and how she enjoyed every moment , no matter what it was, . . . she made something positive out of it, and it made everyone
around them feel that much better, and so LOVE's the word.
it will carry on through each and every person who she has touched because you can't have a memory of her and not think happiness and not think love.

So, in the words of Jonathan Larsen, "Live like there is no day but today."