Saturday, December 5, 2009

That photo of Margret and Santa?

The photo of Margret and Santa in the post below was from the year she wanted to give photos to friends and family for Christmas presents. She insisted that she didn't want Fred (what she called her portable oxygen setup) in the picture. It made Santa very nervous. Even though I assured him (and the camera gal) that her doctor had okayed 15 minutes off the oxygen, he kept reminding the camera gal that she needed to hurry.

It was a long line, a long wait, and I was more concerned whether her tank was going to run out before we got home. It did run out, on our way to the mall door. I had her wait at the door while I got the car. She climbed in, and settled down to relax on the way home. She was very happy with her photos, and not at all worried about her oxygen running out.

When we got home, I hooked her up to another tank, and had her sit in the car for a few minutes to let her oxygen saturation rise before she came in. She was fine. She was happy, and the happy was what was important that day.

Wednesday, December 2, 2009

Thanksgiving and Cranberry Relish

Thanksgiving this year was not nearly as hard for me as last year was.

I even made the cranberry-orange relish that my girls remembered from when they were growing up. One of them asked if I would make it, and I did. I use a meat grinder to chop the cranberries and oranges, and she asked if she could have the grinder. I said "Sure!"

To make my relish, you need:
3 12 oz bags of fresh cranberries
2 medium navel oranges
1 cup of sugar (possibly a little more sugar if the berries and oranges are very very tart)
a bowl large enough to hold all the berries and oranges, a saucer and a wooden spoon
1 slice of bread (for pushing out the rest of the oranges from the grinder)

Wash and quarter the oranges
Wash the cranberries; pick out and discard stems, leaves and mushy berries

Run the cranberries through the grinder, alternating with orange quarters, and making sure the friskier berries don't jump out.
As the grinder stops producing ground fruit, put the slice of bread into the grinder.
When bread appears at the grinder plate, remove the bowl, and place the saucer to catch the bread.
Clean the grinder, dry and put away.

Add the sugar to the bowl of cranberry orange stuff, and mix thoroughly with a wooden spoon (or equivalent).

Let the relish sit overnight to blend the tastes.


And the lovely lady who made the large blue tag with Margret for me, well, she made one especially for this Christmas, and here it is:

Sunday, November 22, 2009

October can be the Cruelest Month

Yes, Margret's birthday was in July, and the anniversary of her passing is also in July. July was cruel all on its own.

October is the month Margret and I packed our clothes, our supplies and our courage and set out on a road trip half way across the USA. This year was supposed to have another road trip across the country to visit Margret's little sister and her family.

I have been mourning the loss of the road trip. I have my memories of the previous ones, but those memories don't help much right now. I remember, cherish, and still miss, all the little details of our travels together:
the companionable silences
the friendly chatter about anything, everything and nothing at all when we discussed and solved the problems of the universe in general and our little bit of it in particular
"Is it time for dinner yet?"
her desire to eat healthy, but still to eat what she wanted
requests for unscheduled pit stops
her delight to meet and chat with my leathercraft friends at the IFOLG show in Butler
her patience with me when I missed an off ramp and got us headed in the wrong direction just outside Chicago
how thrilled she was to hug, play and talk with her niece and nephews
shopping with her sister
how the route home seemed longer than the outbound route

Sunday, September 13, 2009

Not Done with Tears

I had thought I'd be mostly done with tears by now. It is, after all, more than a year since Margret died. But no. I have moments when some small thing brings the tears welling in my eyes.

I've signed up for a grief support group. First meeting is tomorrow.

Saturday, August 15, 2009

That's no Revelation!

It's no revelation that Margret had extremely good care and good medical support in the years after her diagnosis with pulmonary hypertension.

There's a new doctor in my family group, and I met her on Thursday. After we discussed my knee, and what to do about it (an x-ray which showed nothing amiss and a visit to the orthopedic doc next week) I said, "it's a shame you didn't get to meet my daughter Margret." She said, "I'll get to see her next time," and I had to stop her and explain that Margret died last year. Then I explained about the heart defect, and the pulmonary hypertension.

What put me in such a mood that I had to mention Margret? I was sitting in the Mom chair, gazing out the window over the exam table where Margret would sit, and thinking how she sat there every three months, waiting to see her doctor, chattering about something fun, and expecting a good report. I thought about the times she sat there feeling less than perfectly well, and how she sometimes thought I was overcautious. It made me sad to think we'll never be doing either again.

On my way out, I stopped at the nurses' station to get my ortho appointment, and the lady helping me was the same one (named after a lovely purple flower - I shall call her P, for Petunia, which isn't her flower but does come in a lovely purple) who handles referrals. I thanked her for the extra miles she'd gone to make sure Margret had all her referrals when she needed them, and for the time she'd sent one that vanished, and had to be sent again on the instant while we were waiting in that particular doctor's office to be seen.

"That's what we're here for," she said, and she remembered the mysterious vanishing referral. "I still have no idea where it went."

We chatted about Margret, and another doctor dropping papers off at the station said, "You're talking about Margret, aren't you? Everybody loved Margret."

I told him I very much appreciated the uniformly good care Margret got from the group.

He asked how old she was when she died; he said thirty seven was a very good age for someone with her unrepaired heart defect. He said, "she had very good care, and not just here."

The new doctor stepping up with her next paperwork heard, and added that she had cared for a number of patients with similar problems who had died in their late twenties; that Margret had done very well.

Margret had the best care that I could arrange, balanced with something like a normal life. Perhaps she would not have caught that awful bug if I had kept her in a bubble, kept her away from other people, kept her out of places with sniffling, sneezing human beings, but what fun would that have been? Margret lived for interaction with her friends. She loved to meet new people. She loved eating out, and she loved when we traveled.

A lot of things come down to luck, I suppose, and that bug she caught was one of them. Her good care was not luck, neither was how much she was loved. That was us loving her back for how loving she was. That was us doing our best to see that she had a long and happy life.

You did a great job, kiddo.

Friday, July 17, 2009

My Mom and Me

My Mom and I have been at odds over something or other most of my life. It seemed to me that I could never do anything right. Or not right enough for her. No gift I gave her as an adult suited her, either, it seems, (she often gave them back telling me she didn't want them, maybe she just meant she had no use for them? or place to display them?) but when we were clearing out her house so it could be sold, we discovered a collection of the things I made for her in kindergarden and the early grades.

I've heard it suggested that we butted heads so often because we are very much alike. I don't know if that's true. I'd rather it weren't, thank you very much. I do not want to make my daughters feel the way she made me feel.

I'm sure she loved me. She read to me when I was sick, she came to the hospital and stayed at my side when I had my tonsils out. When I was in kindergarden, we were supposed to tell our parents that we could come in costume for Halloween. I forgot. Mom walked me to school, and when I saw all the costumed kids, I refused to go in. She asked what the matter was. I must have explained, because we walked back home, cobbled together a costume from a kitchen apron and the headpiece with bunny ears from another costume, and I went as Mrs. Rabbit, Peter Cottontail's mother.

I was a disappointment to her in many ways. I was only one child, when she wanted a gaggle of younglings at her feet. As I grew up, I turned into someone who wasn't the daughter she wanted. I didn't follow her plan of college, graduate school, a career in science, and then a family. I rebelled. I fell in love with the guy who sat down next to me in Latin class, and told such interesting stories. I married him and dropped out of college. We had kids together. He left me. I have to hand it to Mom that she never said, "I told you so," when I called to let her know he was gone.

As adults, we got along better living far apart. Any time my parents visited for more than three days, my Dad had to referee. I remember one visit when, after my parents left, I couldn't find the can opener. My daughters told me Mom had found it where I kept it, and muttered that it didn't belong there, it belonged in the OTHER drawer, and they watched while she rearranged a variety of things in my kitchen to suit herself.

Wednesday, July 15, 2009

Margret Would Love this Article

Margret would have smiled, chirped with glee, bounced and clapped her hands to have this article read to her.

She had a boyfriend or three, but her relationships never reached the point of seriously contemplating marriage. Contemplating marriage was something she did on a regular basis, though, even marriage with guys she had only seen walking down the street, or heard about from some friend. It's the seriously part that didn't happen.

Thanks to Jess on Raising Joey for this link:

Sunday, April 26, 2009
By Monetta Harr, For the Citizen Patriot

A school-age snapshot of Alex and Alexis sharing a hug clearly shows the affection between the two when they were classmates at Columbia’s Miller Elementary School.

Flash forward to high school. Alex’s family had moved to the Napoleon school district, and the friends lost contact until his photo appeared with a Citizen Patriot story about him serving as manager of the boys basketball team.

Alexis’ mother saw it and suggested her daughter give him a call and invite him to prom.

Today they celebrate their first wedding anniversary. It is a love story made even more so because the couple have Down syndrome.

“I can’t even put into words how wonderful that feels, that Alexis found someone to love and be happy with. It’s what every parent wants for their child, and it’s wonderful,” said Laura Smith of Clark Lake, Alexis’ mother.

On April 26, 2008, Alex DeNato, 27, and Alexis Smith, 25, were married in Queen of the Miraculous Medal Catholic Church, vowing to love one another as husband and wife.

They have a two-bedroom apartment in Alpine Lake Apartments, chosen because it is on the Jackson Transit System line and they use its Reserve-A-Ride service to get to work.

Alex washes dishes and peels potatoes at the Napoleon CafĂ©, and Alexis bags groceries at Polly’s Country Market in Brooklyn. They walk to Citizens Bank on Fourth Street and often walk to visit his parents, Mark and Chris DeNato, in Summit Township.

Alexis handles their money and checkbook, and Mark DeNato tracks it online, but rarely does Alexis make a mistake.

Laura Smith drives them to Polly’s Country Market at Ferguson Corners one weeknight each week.

“I usually sit in the car and talk to my sister,” said Smith, an X-ray technologist at Columbia Medical Center in Brooklyn. “They do their own shopping, have a list, and they don’t need me.”

Tuesday, July 14, 2009

I Still Miss You, Margret

One year ago today, we said goodbye to Margret, and let her go home.

She was ready to go.

Wouldn't it be lovely if she could write from where she is, and tell me she's happy, healthy and has plenty of interesting things to do?

Friday, July 10, 2009

Wednesday was Margret's Birthday

We celebrated.

We went out for dinner, and had cheesecake for dessert. Margret liked cheese cake a LOT.

Then we had a fire to sit around. When it was going nicely we put gifts for Margret on it. The gifts are symbolic - empty boxes wrapped as gifts.

We thought of all the wonderful things Margret did in her life, and told each other stories.

Celebrating her birthday without her hurts, but it hurts less than not celebrating her birthday at all.

Sunday, June 28, 2009

High School Graduate

When Margret was in High School, and getting ready to graduate, her teacher suggested she compose a speech for the commencement ceremony. She asked me to write the speech for her; I refused and had a little chat with her teacher. So, she and her teacher worked on the speech together. I asked how the speech was coming. She told me "It's a surprise," and gave me a bright smile.

On the big day, dignified in her bright gold cap and gown, she stepped up on the box placed behind the podium to bring her four foot eight inches high enough to see over it, surveyed the auditorium and began.

I wish I had a transcript of her speech. I remember it as being thoughtful and moving, but I cannot remember exactly what she said.

Her choice of a graduation present wasn't what the average graduate would choose, either. She wanted a photograph of everyone who came to her graduation. After the ceremony ended, we piled in the cars and headed over to the photographer. Two of the party members had to go, delivering papers and baby sitting, if I remember right, and I might not, so they didn't make it into the photo. Sorry. But there we all were, the rest of us: Margret, her father, her sisters, B's boyfriend, me, my husband, one of the girls who lived across the street.

Yes, she invited her father to come to her graduation. She is the only one of his daughters who did so. He came by bus. When I mentioned he was going to ask the bus drivers where would be a good place for him to stay, another daughter suggested I let him stay in our house. I was surprised, but checked with the other siblings, and with my husband, and it was agreed. He stayed with us.

As I drove to the bus station for him to head back home, he said he was glad I'd married my husband, calling him "someone the girls can look up to". Upon my return, my husband said nice things about how fascinating the father was, and how well he spoke. Yes, I was pleasantly surprised that they got on well with each other.

Saturday, June 27, 2009

A Year Ago This Day

A year ago today, I woke to the music of Margret's voice. She was talking with her sisters, and sitting up in bed.

She came back to be with us for such a brief time. Although it was only to be for a few more weeks, I am grateful for every minute we were able to share.

Friday, June 26, 2009

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.

Friday, June 5, 2009

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.

Tuesday, June 2, 2009

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.

Sunday, May 31, 2009

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.

Thursday, May 28, 2009

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.

Sunday, May 10, 2009

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.

Saturday, May 2, 2009

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)

Sunday, April 19, 2009

Happiness Gauge

How can the people around you tell if you are happy? What do you use for a happiness gauge?

For me, if I'm singing while I work in the kitchen, or while I'm driving, you can tell I'm happy.

I caught myself singing today. I was on my way to the grocery store, and I was singing. What was I singing? I can't recall.

On the way home I was singing an old song with it's roots in the worry of the Mamas of Irish lads who went to war.

"Oh Mrs McGraw," the sergeant said, "would you like to make a soldier out of your son Ted,
With a scarlet cloak and a big cocked hat, oh, Mrs McGraw, wouldn't you like that?"
With your too rye ah, fa the diddle ah, too rye, too rye too rye ah
With your too rye ah, fa the diddle ah, too rye, ooh rye ooh rye ah
Lav beg the cracker oh!

I don't suppose it really matters what I am singing, but the fact that I am singing is note worthy.

Years and years ago, when I would sing in the cars, my kids wished I would not. On one occasion, one of the girls went so far as to threaten to jump out of the car while it was moving if I did not cease my singing.

Friday, April 10, 2009

Happier Days

I have been happier this past week, consistently, each day, than I have been in a long time.

Part of it is due, I'm sure, to last weekend's visit from one of my daughters. Part of it has to do with longer days, sunshine and warmer weather. Part of it has to do with an email I received from another daughter. It moved me to tears, and made me smile through them.

I took a walk down the hill with one of the neighbors. She is trying to get back into shape after being laid up a while. A walk is more fun with company.

I stopped and took a couple digital photos of the twin linden trees on the hill. I discovered that if I use the viewfinder, I can line up the utility pole with the vertical and the cable with the right horizontal of the crosshairs. I took the photos standing at the joint in the curb next to the utility pole across the street with a thick cable protector running up it. THAT means I can take more pictures from the same spot and layer them to make a time lapse of the tree going through it's year. If I can remember to take my camera with me on walks at least once a week.

Let's have a YAY! for spring, for neighbors, for activity, for new projects and most of all, for happiness.


Friday, March 27, 2009

Meme stolen from txanne

Use the first letter of your first name and come up with each the following. Don't use your own name for the boy/girl name.

Your name: Ann
Famous Artist/Band/Musician: Aneiki
4 letter word: also
Vehicle: Audi
TV Show: All My Children (sorry I couldn't think of a kewler one)
City: Allentown
Boy Name: Antonio
Girl Name: Andrea
Alcoholic drink: aperitif
Occupation: actuary
Something a woman wears: ankle boots
Celebrity: Alejandro Fernandez
Food: ambrosia
Something found in a kitchen: anise seed
Reason for Being Late: auto accident
Cartoon Character: Aloysius Wolf (actually a character from Childrens Highlights)
Something You Shout: Away with you!

Thursday, March 26, 2009

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."

Wednesday, March 25, 2009

Something I've been trying to do

I have been trying for months to write about saying goodbye to Margret. The task has defeated me. Either I start crying and have to leave off writing, or I am not satisfied with what I have written. Or else what I have written seems OK, but I wasn't ready to share what I wrote.

There have been many attempts, many almost successes.

Over time my mantra for Margret's care evolved into "the best quality of life with the least invasive treatments". Because there comes a time where you are no longer doing things FOR a person, but you are doing things TO them. That's what the doctor said when Margret collapsed, and he wanted to know what measures we wanted taken on her behalf.

We all got a reprieve when she sat up and talked to her sisters the following day.

He had put into words my worst fear: that there comes a time when there is no more hope. Hope is gone, and soon to follow are the smiles, the joy, the wicked sense of humor, the courage, the adventurous spirit that said, "I want to see Ricky Martin perform live. I want to go on a cruise."

The hardest part, I think, is facing down the day that my hopes died, and then having to do it all over again. Every attempt to write about it brings that sorrow back full force.

Tuesday, March 24, 2009

Valentine's Day was Very Sad This Year

This was a very sad Valentine's day. I didn't manage to get the valentines out in the mail as I had planned, it made me cry to work on them, and that bummed me out.

Then I had a series of very strange, very detailed, very confusing dreams that made me feel very sad when I woke up, as if I had read an intense and wandering letter from a half crazy friend and missed the whole point.

I wasn't very good company at times, not even for myself. I indulged in reading therapy; went through several library books. I was torn between not ever wanting to go back to sleep (the dreams! the dreams!) and not ever wanting to wake up again to have to face the real world as it is.

I'm glad it's over for this year, and I'm sure that next year won't be nearly so awful.

It may not be Thanksgiving, but I give thanks for my husband, my daughters and my friends who have been keeping me firmly in the real world even when I would rather be someplace else. Where? Dunno, just 'not here'. I'm here, and here I'm staying, and this is something good.

Monday, March 23, 2009

It's a Matter of Perspective

Not long after Margret died, I was talking to a young man of my acquaintance. He said he was sorry for my loss.

Then he thought for a bit, sizing me up, and said I was going to think he was a bad person, but if it were him, he would be rejoicing at being released from the equivalent of a prison sentence.


It's just a matter of perspective.

I don't think he's a bad person, just deprived of the right perspective. All he could see is the down side. Only having met Margret briefly, and on a day when she wasn't feeling up to her usual cheer, he couldn't know the up side.

I knew how loving Margret was, how empathetic. He never had a day with her when she was about four years old as I did. I was sad about something, and she came over and hugged me, and laid her head on my lap. She let me know that whatever was wrong, she was there for me, and loved me. I had not said a word about the wrong thing, I was not crying, she just knew, and wanted to make it right as best she could.

He never knew how strongly she cared about her sisters, and how much they cared about her. Or how loyal she was to her friends.

It's his loss.

Thursday, February 5, 2009

Random Tidbit

Discovered in a book, from the Gaelic, addressed to a guardian angel; I found it very moving.

Be thou a bright flame before me,
Be thou a guiding star above me,
Be thou a smooth path below me,
And be ever a kindly shepherd beside me,
Today, tomorrow and forever.

Monday, February 2, 2009

A Letter in the Mail

I got a letter in the mail on Saturday, a letter from my grandson. He's five, and very sweet. Included with it is a letter from his Mama, my daughter D. Getting that letter made my day. Reading that letter made my week.

Now I just have to get my act together and write back.

I think I am one of the worst correspondents in existence. My first husband was definitely worse than I am, so I will not claim to be world's worst. Nope. I'm not the worst. But not the best, either. I am somewhere in between, but closer, much, much closer to the worse end of the scale.

When I was in high school, I had a pen pal. She lived in Japan. When she received a letter from me, she wrote back. When I received a letter from her, I thought about it, and then wrote back. The transit time was such that the exchange rate was about one letter a month. Then the exchange stopped. I am not sure, but I think I got a last letter and didn't write back. It might have been the other way round, but I don't think so. You see, I'm the bad correspondent.

I forget birthdays, and if I don't remember you are having a birthday, I don't send a card. Simple? Maybe. Margret was the one who always remembered who had birthdays, and when they had them. She reminded me.

Margret liked to get cards, and to send them. Birthday cards, definitely, but any sort of card was fine with her. I would help her looking up addresses, but she addressed the envelope in her own hand. She liked to choose cards to give, to send, and planned on trips to the card shop when birthdays were coming up. I kept a collection of cards for many occasions, and she liked to go through and pick just the right one. Sometimes my collection didn't have just what she wanted, and she had to settle for second best, or create a card. I can't think of when she made up the last original card, but I'm sure it wasn't in the past year or so.

Margret kept many of the cards she received. Some she had in a stack in a drawer in her dresser. One year her sister helped her put some of the cards she had received into a frame. There are Christmas cards, birthday cards, lots of valentines, some 'thinking of you' cards and a Halloween card. She hung it on her bedroom door, where, over the years, some of the card shifted toward the bottom of the frame. I would sometimes watch her studying the cards, and wonder what she was thinking. I never asked. Permit me to imagine her thinking "I got this card from D, it's very pretty. This one came from B, she has great taste. My friend W gave me this one with violets. I'm glad I have friends and family."

Sunday, February 1, 2009

How Do I Miss Thee? Let Me Count the Ways. IV

I miss your comings and goings.

I miss the hustle in the morning making sure you're up on time, have your morning meds and your breakfast, and that your lunch is packed. I miss watching you decide which jacket or coat to wear to suit the weather. Sometimes you consulted me, and asked which I thought would be better, but mostly you peeked out the door, and decided for yourself. I miss helping you wrap your scarf to cover your nose in winter.

I miss waiting by the door with you for your ride. I miss the last hug before you go out the door. I miss the aides who picked you up on Monday and Friday, and the Metro van that came the other three days. I even miss the times that your van didn't show up as expected, when I would call the van service and let you tell the dispatcher your concerns. You were unfailingly polite to the dispatcher, and always said, "Thank you, have a nice day," to end your conversation. Sometimes I gave you a ride when the van would have been extremely late, because you liked to be on time. If you were late on Meals on Wheels day, you'd miss most of it, and have to sit at the center waiting for the rest of your group to get back for lunch.

I miss when you come in, returning from your busy day and call, "Hi Mom!" and hang up your coat, and stow your gear, and rummage for a snack in the kitchen. I miss Yoga day, when your teacher brought you home. She set up the mats while you changed into your yoga clothes and ate a yogurt. After class, you would do your shivasana, the last, meditating pose, in bed while your teacher read to you from one of her books or magazines. You'd go from yoga meditation into a nap, which was fine, in bed because it was more comfortable for a nap than the floor.

At first I found myself watching the door at return time, half expecting you'd be coming in at your normal times but I knew it wouldn't happen. A surreal feeling, that.

The rubbermaid step you used for climbing into tall vehicles is still in the closet by the front door, along with your umbrella. An oxygen wrench still hangs on the peg by the keys, and the wooden keyfob, your name in three dimensions. I remember when you got that, the wood crafter made it special for you because he didn't have any already made up. Right next to that is the lanyard with your volunteer photo ID. You took that with you on Fridays, and reminded me to pack no lunch then, because volunteers got lunch at the hospital cafeteria.

Saturday, January 31, 2009

How Do I Miss Thee? Let Me Count the Ways. III

I miss watching Dancing with the Stars with Margret.

I watched it this past season without Margret. I found it difficult at first, but then found myself turning to hubby and saying, "Margret would have liked that" about some dance move, or some costume detail, or some bit of shenanigans that went on. I think Margret might have been voting for Cody Linley, because he was a cast memeber on Hanna Montana, but I also think she would have clapped her hands and squeeeeed for some of the Cloris Leachman moments.

Her favorite star was Billy Ray Cyrus. She wanted me to cast my votes for him so intensely that I made a login for her on the DWTS website so she could have her OWN votes. Other seasons, she enjoyed watching; she had favorites, but that was the first season she had a preference strong enough that she wanted to vote! As a Hanna Montana fan, Margret got to see Billy Ray with his daughter on the Disney Channel's programming, but there he was, learning how to do ballroom dancing.

Husband watched DWTS with us, too. He and I tried to guess what the judges scores would be before they gave them. He was right a surprising number of times, too, more often than I was certainly. We also tried to guess at the beginning of the results show which couple was going to be eliminated. Margret never wanted to join in that guessing session.

When we watched tv together, Margret often sat between my feet, as I sat in a chair. I'm not sure how that habit got started, but it did. Then too, it gets chilly down by the tv, so I would have an afghan wrapped around me, and she would wrap one around her. She kept my feet warm, I kept her afghan/shawl from sliding away. It was a companionable feeling.

In fact I miss watching any tv show with Margret. She clapped her hands, laughed out loud, commented on the action, got up and walked away or muted the sound during the food commercials "because they make me hungry when I'm not". Smart lady.

Friday, January 30, 2009

How Do I Miss Thee? Let Me Count the Ways. II

I miss getting my back scratched and rubbed.

Margret would come up behind me while I was sitting at the computer, or at the table reading, and scratch my back without being asked to do so. She had a great sense of where I liked having my back scratched, so the requests "Up a little," "Over to the left a bit," were fairly minimal.

Sometimes when I was tired and achy, I would say, "Margret, would you rub my shoulders please?" and she would come over and do it. She usually started rubbing with just one hand, and that was pretty good. I'd ask her to use both hands, and she'd usually oblige me. I could request that she concentrate on my neck, or work her way down my back, and she did. For someone who wasn't formally trained, and not working professionally as a masseuse, she was very good.

I showed all my daughters how to rub backs to my taste when they were little, and I was working as an upholsterer who got aches in my back and shoulders rather often. C still twits me about paying them a quarter to rub my back.

The backrubs were not a one way street. I rubbed her back too. I rubbed her back to comfort her when she was unhappy. I rubbed her back when she was sick, because it seemed to make her feel better. Sometimes when I was hugging her, I would add a little massage up and down next to her spine, and she liked that. She didn't ask for a back rub very often, mostly I volunteered to do it, or put my hand on her shoulder and started a massage. If she turned so I had easier access, I continued, with both hands.

The last few days before she went to the hospital for the last time she asked me to rub her back. She said her lower back hurt, and that the rubbing helped.

Thursday, January 29, 2009

How Do I Miss Thee? Let Me Count the Ways. I

I miss Margret hugs.

When someone offers me a hug these days, I almost never turn them down. I can always use the hugs.

I don't get nearly so many hugs now, because that was one of the things Margret did: she hugged. She hugged me, she hugged other family and she hugged her friends. She liked being hugged as well as giving out the hugs.

She'd hug me in the morning, before she left for her program. She'd hug me when she got back, too, and other random times during the day.

I got special extra hugs when I tucked her into bed at night, too.

Wednesday, January 28, 2009

Still Amazed

It still amazes me how fast 6 months passes, and how slowly it goes, all at the same time.

There are a lot of good days, but there are an abundance of moments where something reaches out and touches me, and starts the tears. Quiet tears, and usually only a few, as I think of yet another thing I won't be sharing with Margret.

Some of the memories even bring a smile, and sometimes a chuckle, as this photo of Margret going GRRRR!!! and telling me she wanted to strangle me for taking her picture after wrapping her up to to the tip of her nose.

It was really cold out, and we had only recently realized how much breathing very cold air affected her oxygen saturations, and her feeling of well being. She was used to being bundled up warm, but not so much around her face and head, just a quick wrap up, and done.

It took several trials before we got the scarf high enough to suit me that she would be breathing through it, and low enough to suit her that she could see over it. She hated the amount of time I spent fussing to make sure it was right, but she appreciated that I wanted her to be comfortable.

Wednesday, January 14, 2009

Six Month Anniversary

Yesterday I was terribly out of sorts, and could not go to sleep last night for the disturbing visions of Margret in the hospital that were dancing in my head. I ended up sitting reading, legs wrapped in a sleeping bag and lap robe around my shoulders, all night.

As the first tentative rays of sunlight explored my front window, it dawned on me that this is the six month anniversary of her death.

In my head I've been composing something I call, How Do I Miss Thee? Let Me Count The Ways, but I can't get it to shift from inside my head to paper or file. *sigh* One of these days I'll get it to make the transition.

I've been processing feelings about the holidays for a while now, and still working on it.

The drive to see family for Thanksgiving was peculiar, both going and returning home. I kept having little moments of panic that I had forgotten to pack something extremely important. The first time or two, I could not pin it down; I went over a mental list of my packed items and could not see anything missing. Another time when it happened, I glanced in the mirror to see how Margret was doing, and realized it was herself I was missing. Understanding did not banish the moments, but they were lessened.

Travel at Christmas I only had one or two such moments, and only on the way there.

During both holidays, it was wonderful seeing family again, and spending a little time together.

On a very much more mundane note, winter has set in. We have cold and snow, and in such weather I quite prefer the indoors. I've been reading books by Sharyn McCrumb, both the Ballad novels and a few of her Elizabeth MacPherson stories, from the public library.