A Year Ago

A year ago yesterday was the date Margret got her first (and last) helicopter ride as she was transferred from the local hospital to the hospital in Philadelphia where she could be cared for by her specialist.

A year ago yesterday was the day she said, with fear in her face, "I'm not ready to die!"

A year ago today, she had enough with the pain and the hard time breathing that she said, "I quit!", threw everyone out of her room and then lay unresponsive until her sisters came to see her. While the sisters and I were discussing possible birthday party plans, she wiggled her toes. The next morning I woke to the sound of her voice. I was so very very happy.

Margret's Pill Learning Hint

We all need a nudge in our memories from time to time. In my search through assorted saved papers, I came across a page with the following written out by hand. I can always recognize Margret's printing when I see it.

I make lists to help remember everything I'm planning to do in a day. I have a pen and a square note block by my bed, because I often think what I need to do in the next day as I'm getting ready to sleep. - Margret's mom


I take pills in the morning and in the evening, plus one in the late afternoon. Mom thought it would be a really good thing if I knew what I am taking. My mom took a photo of my morning pills and labeled the picture in photo software with what each pill is. She took another picture of my evening pills, and labeled them, too. That's how I learned exactly what I'm taking. - Margret M.

As it happens, I remember an occasion when I handed the pill cup to Margret, and she said, "Mom, should there be two of these?" I looked, and replied, "No. Good catch!"

There was another time when the pharmacy changed suppliers for one of the generic medications. The pill changed shape and color. I got them home, opened the bottle to start setup for the next week and freaked out. I called the pharmacy and spoke to the pharmacist, who apologized. I wasn't notified about the change because it happened right after I had picked up the last month's supply. The pharmacist thought I already knew.

That night, Margret picked out the new pill and asked, "What is this?"

"Good catch," I said, then told her the change story.

I think all our kids should know what they take, and what it's for, to the best of their ability. And if there are medications that they should NOT have, they ought to know about those, too. Good reason to have a MedicAlert bracelet or necklace as a backup.

Craft It Forward

I've seen this on a few blogs I've been reading recently. Those posts were mostly back in March, and it has suddenly become June... where did the time go?

Here are the rules:
The first five people to respond to this post will get something made by me! This offer does have some limitations:

1. You will not know what it's going to be, and there are no guarantees that you will like what I make! It may be something simple and small or I may go crazy and do something amazing.

2. It’ll be done this year. Translation: you may be waiting a little while.

3. Most importantly, you must offer the same deal on your blog - the first 5 people to comment on your blog (or Facebook or whatever, if you don't have a blog) get something made by YOU!

My variation on this meme (I think that's the word that means these things that get passed around from blog to blog) is that if you've done it already, you don't have to do it again to get something crafted by me.

Place Memories of Margret

Margret first lived in a RecV, a converted bread truck. Then she lived in a travel trailer with her parents, and her sisters as they arrived. Her dad left while she lived there.

The trailer was too small, so she moved with her mom and sisters to a second floor apartment. She and her sisters thought it was enormous. For the first few weeks, she and her sisters would follow her mom from room to room, not sure they wanted to let her get that far away. (or out of sight?) She went to school, made friends, and did normal kid things while she lived there. She went often to a nearby state park with her family, followed the paths, watched animals (Look! A chipmunk!), learned to identify some common plants and skipped stones in the creek.

She and her sisters spent a year with her dad in Arizona, over two thousand miles away. She went to school, made friends, went to the rim of the Grand Canyon. She participated in Special Olympics and brought home three medals. Cross country skiing is just not something I would have thought of, back here in Pennsylvania, but she enjoyed it, and was good at it.

She came back to a two story house with attic bedrooms for her two younger sisters. She started horseback riding lessons while she lived there, and started aquacize lessons with her mom. She hung out with her sisters and the girls from across the street. She walked places.

She moved with us to another two story house with finished attic. She went to the Prom, had a job, took ceramic painting classes and made lovely stuff, was diagnosed with depression, stopped taking riding lessons, diagnosed with Eisenmenger's, lost the job, started volunteering, and started to use supplemental oxygen while she lived there. Her sisters went off to college and moved away. She learned to knit, got a knitting machine, and made scarves for everyone in the family one Christmas.

She moved to a one story house with her mom and mom's husband. Although her mom hates moving she liked the one story house. Margret liked the one story house better than the two story house, too. For one thing, it had whole house air conditioning, and that helped keep her comfortable. Her bedroom was on the first floor so she didn't have to do a flight of stairs when she was weary. Even though a few stairs go down from the main part of the house to the TV room, it wasn't the effort it was for her to go up and down stairs in the two story. She volunteered, saw her doctor regularly, went on a couple road trips to see her little sister and her family, went to a live concert in New York City, no, make that THREE concerts. She made latchhook squares from kits, and planned to which sister, niece or nephew she would give them.

Her last room, for a tad longer than two weeks, was in a hospital, with doctors, nurses, IV pumps, cards, visitors, phone calls, family, a ventilator mask, complete with ventilator, monitors and alarms, misery, and in the end, peace.

Margret is a believer, so she has moved to Heaven. She often told me she was an angel. I didn't want her to say that, because I know angels can't stay here very long.

Remembering a Moment of Margret Pride

We are coming around to a year from when Margret was first sick. We didn't know then, she and I, the journey we were on. We didn't know the destination. We were living life as we knew it, coping in ways we had figured out along the way.

Margret was at home because she was coughing and not feeling great, when my new computer arrived. The driver needed a signature to leave it, and Margret signed for it. I was out making a run for yummies and supplies.

When I got home, she was very proud of herself for figuring out what needed to be done, and doing it. I was very proud of her, too. We hugged. She beamed. Her grin lit up the whole room.

Mother's Day

This is the first Mother's Day without Margret waiting to pounce on me as I emerge from my roomlair in search of morning coffee, and wish me a Happy Mother's Day.

I missed that little sweetness.

She also plotted with her respite companion to pick out a card, or make one, and pick out a small present. I remember telling her that her hugs were a better present than anything money could buy. This is still true, I'll just have to accept that my Margret hugs will come by proxy from here on out.

The lovely C stopped by for a short visit today. That was sweet. Also sweet was the phone call from D. She called on my birthday to wish me a happy one, and said she was short of minutes, (for her phone, although, with her children, she is also short of uninterrupted minutes to talk as well) so she would wish me a Happy Mother's Day at the same time. I was glad to talk to her; I don't seem to get to talk to her very much.

Talking to my daughters, and my grandchildren, and my husband, and my friends, makes me happy. I am happy that we had so much of Margret, and for so long. I still miss her, but the sadness of missing her is not always so up front these days. I can enjoy the bright sunshine and the pleasant breeze. I can enjoy watching the swoops and dives and soaring flight of a swallow. I can enjoy making something pretty (stay tuned for photos of the leather rose), and helping others learn.

I'm alive, and I like it that way.

She Is Their Sister

When Margret died, a daughter vanished, leaving a huge hole in my life, leaving me drowning in sorrow. I can say it now without bursting into tears, "I have four daughters, three living, one died when she was 37."

When Margret died, my four living daughters became three. From their lives, the lives of these three, was ripped someone they grew up with, someone who had influenced, from the very beginning, who they grew up to be. She was the first one, and she loved her little sisters. They loved her right back.

Their loss is no less than my own. Just different. They were close to Margret, closer in some ways than I was. I know C was terribly upset, and found some comfort in a book. The book she read, and recommended, is:

The Empty Room
Surviving the Loss of a Brother or Sister at Any Age
by Elizabeth DeVita-Raeburn

I read it, and found it fascinating. I found comfort, too.

I read how, before World War I, a Victorian widow or widower wore mourning clothes, or possibly a locket with a bit of hair from the person for whom they grieved, for a year or longer. Neimeyer* and Attig** have a theory that is "an enhanced version of what the Victorians used to believe: We have a continuing relationship with the dead. The premise that moving on means letting go is wrong." (TER p.145)

YAY! I can move on, and still have Margret with me, if not at breakfast every day, at least in my mind, my memories, who I am.

This next passage moved me profoundly. Reading it felt rather like throwing back a set of dark, heavy drapes to let sunlight stream through the window.

"Until you resolve the core issue of what you're going to do with the love you still have for this person, there will be a huge reluctance to move on and engage with the world," said Attig. "The world is there, waiting for you to engage with it again. Why not bring the person with you and appreciate how different you are for having known him? Why not make some difference in your other relationships with other things in the world, in part because of having known him? Why not do that in appreciation of the continuing contribution he's making to your life?" (TER p 146)

My daughters influenced one another as they grew up. They loved one another. They argued with each other. When someone outside the family threatened one of them, they stood united. I don't know what they would be like if Margret never was. I don't know what I would be like.

Recently I had an attack of the What Ifs. What If I had been more biddable when the pediatrician said I should send Margret to an institution? When he said "Don't get attached" suppose I had listened? I would have known there was another sister. I would have known that I relinquished my responsibility to my first child. I suspect that Margret's life would have been a lot shorter, probably a lot less happy. I believe I did the right thing, keeping my child. I believe my life, the lives of her sisters, and the lives of the people she touched, even briefly, are richer; me for having raised her, her sisters for having grown up with her, all those others for having met her.

When Margret was an infant, I had a dream in which she was a walking child, looking like a typical four year old, dressed in a cute outfit of shiny red satin, a long sleeved jacket and shorts just below the knee, with a round cap of the same material. She sang, over and over, a string of nonsense syllables, in a high sweet voice I can hear in my mind's ear to this day, and beckoned, indicating that I should follow her up a flight of stairs. When we reached the top, she pushed open a pair of casement windows, and gestured that I should look out. There before us lay a new, wide, colorful world. I could see bright orange tile roofs, and tree canopies in dark and medium green. There were walls of pink or yellow, cream or blue, pastel green or aqua.

Prophetic? Nah, just vivid and unforgettable.

Margret was not a saint. She had flaws. She could drive me crazy. She could drive her sisters crazy. But I am pleased to think the world a better place for having had Margret in it.

*Robert Neimeyer, Ph.D., a professor of psychology at the University of Memphis and editor of the journal Death Studio

**Thomas Attig, Ph.D., a philosopher whose specialty is the theory that we continue relationships with those we have lost. (TER p 140-1)