The Incredible Gift

A Sweet Little Message from the Past

2011-12-23T12:08:00.003-05:00

I got a Christmas card from Margret. It was signed " with love Margret".

How is it possible to get a Christmas card from my daughter, when she died three years ago?

I was going through a box of Christmas cards left over from other years, partial sets, a little of this a little of that... and found a few that Margret had signed, but not sent.

It made me happy and sad at the same time.

The every day stuff gets easier, but this is only the third Christmas I'm spending without her.This year it isn't like the first Christmas with her gone. The pain of her absence was so much worse then. I wasn't sure at the time how a human being could live through that agony, but living through it IS possible.

I'm gonna be OK over the long haul. The happy memories predominate, the good times come to mind more easily than the sad. I have my husband and my family and you guys; and I have lots more hats to make before I am finished here.

I'm pleased to announce that I donated 17 hat/scarf sets to Valley Youth House in Margret's memory this year. The receptionist admired them, and hoped aloud that I would have time to make them some more for next year.

Hat photos here.

Second Anniversary

2010-07-15T02:25:00.002-04:00

The sun rose today, just as it has every other day over the last two years, but behind clouds. It rained. Thanks universe, I appreciate the sentiment.

I have been thinking of my daughter Margret today, and remembering her fondly.

I've been remembering good things, fun things, happy things like what a great giggle she had, how much she liked ice cream, how we would sit together and watch Dancing with the Stars - especially the season Billy Ray Cyrus was on. She would clap her hands in delight, sometimes giggling at the same time. She cast ALL her votes for Billy Ray that season. Until he had to leave.

Did I cry today? Yes, a bit. I cried as I was remembering my feelings when the doctor said "end stage," how I was shocked, yet at the same time, not really surprised at all. Then the scramble to let people know it was time to say goodbye. I'm grateful to each and every one who came to tell her, one last time, how much loved she was. Her passing was peaceful, and quick. I held her hand, and tears rolled down my face. The feeling as I let go of hope I didn't know I was still clutching was like water pouring from a pitcher, vanishing as it streamed from the pitcher's lip. Not a very good explanation, I don't think, but the best I can manage. Then numbness set in, and the numbness let me function in those sad first days after.

Margret belongs to the past. Never again will I track doctors appointments for her, make sure she has all her prescriptions refilled in good time, check to see that she's up with her alarm clock in the morning, help her change an oxygen tank. Lots of things in the Never Again list.

Margret also belongs to the present because I think of her every day. Some days I smile, remembering, while I put the silverware away, what an amazingly consistent and neat job she made of it doing the same thing. Other moments are less happy. I still miss tucking her in, the good night hug and kiss, little interchanges like our "Good night, Margret, sweet dreams." "Good night Mama, I love you."

She also belongs to the future. My newest granddaughter, according to her mother, makes some of the same faces that Margret did, some of the same gestures, and sometimes doesn't close her eyes all the way when she is asleep, another Margret trait. That is comforting in a way I can't explain. It just is.

Yes, I'm still here. I'll never forget my sorrows, but I know I'm not finished with my joys. I'll go on living and loving and doing fun things.

I'll rise again tomorrow. Just like the sun.

Happy Birthday, Margret!

2010-07-08T16:12:00.003-04:00

It's Margret's birthday today. She would be 39 this year.

Margret would approve my day's activities. I got a TDaP booster since I can't remember the last update I had, and am planning some travel. I'm catching up on some paperwork (a chore, ick, but chores gotta be done). I'm making some earrings (Yay, a FUN activity!). And I'm eating sensibly.

She would also be happy that on Monday I called the church number to talk to the pastor who came to visit her in hospital. He was away on vacation, so I left a message with the secretary thanking him for his visits, thanking the membership for their prayers because that meant a lot to Margret. He had asked if there was anything else, anything at all, that they could do for Margret, and I responded it would be a help if anyone willing would donate blood in Margret's name to replace the blood products she used. I've been told that as a cancer survivor I should not donate. And I said thank you to those who donated.

Happy Birthday, Sweetie! We still miss you, and we remember you with love and fondness.

For Mother's Day

2010-05-13T10:33:00.002-04:00

A bit late, but still apropos, I found something to share with you, by someone who says it better than I can. I found myself in it *, and so might you.

You may want to keep tissues handy while you read.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds.

We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.

Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs.Some of our children ungergo chemotherapy.Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. Weknow "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.

Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish.

We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.

We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing.

Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes.

We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Here is a link to the post where I found it on Janis' blog, and a link to the original source. Go read. There's more inspiration to be found there, too.

*"Without formal education, we could become board certified in neurology, endocrinology, and physiatry."
Yes, this. In particular, I can recall being asked where I took my medical studies. The first time I was asked, I replied that I was not a medical professional. Other times I replied the library, books, the internet. Simply being Margret's mother was an education.

Simply being the mother of a special needs child is an education. Sometimes we can turn the tables and educate the doctors,

Grief Support Group

2010-03-03T13:53:00.003-05:00

I joined a Grief Support Group.

... and found myself surrounded by people who totally get it.

Which is not at all strange, as each of them has someone very dear to them who is not sharing this life of ours any more.

Each of us has chances to tell our story, and to talk about our dear one. We are encouraged to talk about what we are feeling, share "ah-HA!" moments, and tell how hard the holidays, and anniversaries, were, and what changes or accommodations our friends and family have made.

At the last meeting in each series, the group members bring photos of their dear one, and pass the photos around the circle while we talk.

In addition to pictures, I brought an audio snippet of Margret's voice, and her giggle.
Here, I'll let you listen, too. Clicky

That photo of Margret and Santa?

2009-12-05T15:57:00.003-05:00

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.

Thanksgiving and Cranberry Relish

2009-12-02T15:04:00.002-05:00

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:

October can be the Cruelest Month

2009-11-22T15:16:00.002-05:00

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

Not Done with Tears

2009-09-13T12:25:00.002-04:00

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.

That's no Revelation!

2009-08-15T11:40:00.002-04:00

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.

My Mom and Me

2009-07-17T15:13:00.001-04:00

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.

Margret Would Love this Article

2009-07-15T13:08:00.002-04:00

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:

http://www.mlive.com/news/citpat/index.ssf?/base/news-28/1240740321256200.xml&coll=3

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 Café, 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.”

I Still Miss You, Margret

2009-07-14T13:45:00.002-04:00

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?

Wednesday was Margret's Birthday

2009-07-10T19:48:00.002-04:00

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.

High School Graduate

2009-06-28T17:16:00.003-04:00

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.

A Year Ago This Day

2009-06-27T09:24:00.001-04:00

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.

A Year Ago

2009-06-26T22:18:00.002-04:00

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

2009-06-05T15:25:00.002-04:00

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

2009-06-02T13:28:00.003-04:00

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

2009-05-31T12:03:00.006-04:00

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

2009-05-28T15:30:00.003-04:00

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

2009-05-10T17:04:00.004-04:00

This is the first Mother's Day without Margret waiting to pounce on me as I emerge from my ~~room~~lair 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.

The Lioness is Having a Sale

2009-05-05T14:51:00.001-04:00

Do you like pretty shiny things?

Go look. See the pretty shiny things *here*

She Is Their Sister

2009-05-02T23:48:00.005-04:00

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)

Happiness Gauge

2009-04-19T20:36:00.004-04:00

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.

Happier Days

2009-04-10T14:52:00.002-04:00

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.

YAY!!!!

Meme stolen from txanne

2009-03-27T06:00:00.000-04:00

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!

Saying Goodbye

2009-03-26T06:17:00.006-04:00

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."

Something I've been trying to do

2009-03-25T06:12:00.005-04:00

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.

Valentine's Day was Very Sad This Year

2009-03-24T03:58:00.004-04:00

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.

It's a Matter of Perspective

2009-03-23T16:23:00.002-04:00

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.

Perspective.

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.

Random Tidbit

2009-02-05T16:08:00.001-05:00

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.

A Letter in the Mail

2009-02-02T06:30:00.001-05:00

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."

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

2009-02-01T06:30:00.001-05:00

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.

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

2009-01-31T06:25:00.001-05:00

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.

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

2009-01-30T05:30:00.001-05:00

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.

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

2009-01-29T05:30:00.000-05:00

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.

Still Amazed

2009-01-28T17:19:00.004-05:00

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.

Six Month Anniversary

2009-01-14T14:16:00.004-05:00

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.

Happy Holidays

2008-12-23T15:39:00.004-05:00

Margret and me the Christmas we got matching shirts and wore them at the same time.

Wishing you all
a
Very
Merry
Christmas

SNC's version of Twelve days of Christmas

2008-12-19T21:51:00.003-05:00

I ran across a link for this at one of the message boards I visit (thanks ladies) and I'd like to share this with you. It's a really cute and well executed diversion of a song that can get tedious, long and boring.

A Little Lovin

2008-12-14T15:09:00.003-05:00

I was looking through some photos on my computer and found a very grainy one. I thought of posting it here, and remembered I had taken a frame from a short video and printed it for Margret because she wanted a photo of her holding a baby. I hunted some more, and found the video clip.

I was sad for a bit, watching, because Margret never realized her dream of being a mom. If you asked her if she had any regrets, I think she'd say it was not being able to have children of her own on account of her health issues.

Then I noticed how marvelously happy she looks, carefully cuddling and rocking her niece, and I had to smile. Margret was very very good at being an Auntie. This video shows how much she enjoys and values babies.

Do or Not Do, There is no Try

2008-12-13T01:53:00.005-05:00

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.

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.

Time to Go, a poem for my Mother

2008-12-04T01:36:00.001-05:00

Time to Go

My eyes are hot with unshed tears
My chest is tight with muffled sobs
I am choking
on stifled howls of grief -

My mother is dying.

It isn't fair.

We had so little time together,
to laugh, to love, to share.
She's going now, no choice in that,
just how. She chose to stop fighting,
to tame the pain with drugs.
I respect that.
What use is an extra day,
an extra week, an extra month
filled only with endless agony?

I take her outside to look at the flowers;
I name the blooms, name the colors and she remembers them.
I sing to her as we go.
Sometimes she lifts her voice to join mine.
Was that so very long ago when we sang together often?
Yes. Decades.

I smile and tell her stories,
tales of my children,
the grandchildren she hardly knows.

I help her bathe. How frustrating for her,
so independent, to need help with her toothbrush.
I tuck her in at night, and say, Mother, I love you.
She says, Thank you.

I push her chair, then we stop
to watch a group of deer, in the dusk,
feeding in the field. There are six of them.
Or perhaps seven. One wiggles its ears, snorts and bounds off.
The rest follow, with great strides and much leaping,
white tails flipping some code string in the night.
She doesn't want to go in until the last one has been gone
for long moments, and the night chill begins to penetrate her afghan.

I read to her, rub lotion on her feet
and feed her ice cream a spoonful at a time.

I wash her clothes and shorten pants that have become too long.

I love her the best I can in the short time we have.

I forgive her.

I think she forgives me.

She dies.

Goodbye mother.

I love you.

I always have.

Fortune Cookie

2008-11-25T10:16:00.003-05:00

Opened a fortune cookie and found this inside:

Everybody feels lucky
for having you as a friend.
Lucky numbers 30, 33, 37, 39, 40, 45

and on the back

If ever there was another fortune cookie so appropriate for Margret, I have not seen it.

A Verse I Rather Like

2008-11-15T17:15:00.001-05:00

I found this in the blog of the anesthesioboist. It makes me think of Margret.

William Henry Channing (1810-1884):

To live content with small means;
To seek elegance rather than luxury
and refinement rather than fashion,
To be worthy, not respectable, and wealthy, not rich;
To study hard, think quietly, talk gently, act frankly;
To listen to stars and birds, to babes and sages, with an open heart;
To bear all cheerfully, do all bravely, await occasions, hurry never.
In a word, to let the spiritual, unbidden and unconscious,
grow up through the commonplace.
This to be my symphony.

I Can Hardly Believe It Has Been Four Months

2008-11-14T03:08:00.001-05:00

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.

What's that Name?

2008-11-13T06:29:00.000-05:00

Leonardo Alessandro Giulielmo Patritsio Armand Luigi... and then the last name.

That would be some mouthful for a little child to remember, to recite, to write down in Kindergarden, First Grade or Second Grade. Would he have to write the entire list of his given names every day on every school paper, or would the school pick two for him to use? There are many forms that have space for a first name and a middle initial, with no provision for those folks who have extra names to deal with. I suppose you could ask for an additional sheet of paper, write all those extra names on that, and staple or paper clip the extra paper to the original form. Hmm, what would the clerks and beaureaucrats do with all that extra name?

And what would you call him for short?

That's what Margret's Dad wanted to name her if she had, by chance, been born male. He wanted to honor a group of his uncles, and didn't want any of them to feel left out. Most people would be honored to have a child named after them. Most people would not feel particularly slighted if a newborn was NOT named after them. Margret's Dad didn't want to take any chances with the feelings of his uncles. They were, each and every one of them, his favorite uncle. Well, maybe Uncle Armand was a little more favorite than the rest at times, with all the favors he did for his nephew, but I'd be willing to keep that a secret.

I consider us all fortunate that I persuaded him that he could name the boy children, and he would let me name any female children we might have, because his first two choices for girl names were Kitchenchaira and Baldeagella.

Yes, dear, those names certainly would be unique. No, dear, I would not want to be the girl child bearing those names. *shudder* Who in their right mind** would name their daughter after a piece of furniture?

I can understand naming a child after a favorite bird, but wouldn't Bluebird, or Oriole, or Jay, or Robin, or even Wren or Sparrow be more fitting? I could almost live with Osprey. Twist my arm a little and I might agree to Kite. But, please, please, please not Baldeagella!

Then there she was, and I named her after my two best friends from college, Margret and Gail.

Ta DA! World meet Margret Gail!

When I was pregnant with our second child, I was fairly sure she was going to be a girl. Just so happens that I was right. Her Dad was so sure I was correct that he didn't pick out any boy names. (silly man) So what happens if I was wrong and we had a son? Dad said we'd call him Boy, and when he reached the age of 16 he could decide what he wanted to be called, and we would then change his name legally. Then B was born and I was very very relieved. She is named after my aunt, on whose birthday she was born, and also after the crafty aunt of she after whom Margret was named.

What was Dad going to name C had she, by chance, been born male? He would have honored the Italian anatomist Bartolomeo Eustachio, by giving that name to his offspring, in full. And he would have called that lad Bart for short. This was long before the Simpsons, but I wonder what effect that would have had. Can you imagine raising Bart Simpson? Nope. No way.

C was eventually born female, I gave a sigh of relief and named her after her Dad's favorite aunt, and gave her a variation of the name of a distant aunt on my Dad's side of the family for her middle name.

Their dad left the picture (he took off hitch hiking with another woman) while I was pregnant with the youngest, D. I didn't offer him the option of choosing a name for a boy. At that point I preferred not to talk to him at all. I chose her name all by myself. She bears as her first name the name of the mother of one of my best friends while growing up. I often wished this woman were my mother, instead of my own mom. She was smart, pretty, a good cook, industrious, calm and even handed. My mother was also smart, pretty, a good cook and industrious, but I wouldn't call her calm, and her capriciousness sometimes made me wish I could run away and join the circus. I also gave D the name of my favorite high school teacher, and my mother's first name.

My name? I was named after both grandmothers, Mom's mother first, and Dad's mother second. I didn't like my middle name until I learned that it had originally belonged to my delightful grandmother. Then I only liked the name because it belonged to her.

** I confess to moments when I wondered about that part, too.

Missing Margret

2008-11-11T10:29:00.001-05:00

The first week, I felt a sort of numbness, which made going through the motions, writing her obituary, setting up the funeral, and attending it somewhat unreal. The second week I kept looking at the door at the time she would normally come through it, home from a day of volunteering.

I wrote the following on August 20th, on a message board where I am a member:

This past week has been a really tough... the 14th was one month since we went home without Margret. It's hard to keep going, doing 'normal' stuff, because I keep finding things that make me cry. The first time I came home from grocery shopping after Margret died, I blubbered. Why? Because Margret would always look in all the bags to see what I had gotten, and comment on it, and put the yogurt in the fridge. The first time I put all the dishes away myself was difficult, because emptying the dishwasher was Margret's chore, and she took great pride in making sure all the silverware was arranged just so. I still have not been able to sit down and write thank you cards yet. I will get there eventually. I understand that it takes time to make my way through the grief process and get to the other side. The only way out of it is to go through it. I want to thank everyone who sent a card to her in the hospital. Know that the cards and wishes helped. I want to thank everyone who sent me a card, after, or signed Margret's guestbook. Each sentiment expressed makes the weight on my heart a little less.

I find each week brings its own challenges. Little things send me into tears. A tv show with a reference that hits a tender spot. While shifting things around in the coat closet I found myself in tears, hugging Margret's winter coat. There is a tray of greenware angel ornaments in the craft room. Margret and I picked them out so she could paint them for Christmas presents; I'm going to finish them for her, and that thought makes me cry. They may not get done for Christmas, because tears and greenware don't mix well.

Last week's episode of Grey's anatomy where Izzy keeps seeing the spectre of Denny, and the bit about unclaimed bodies set me off. The episode of Life on Mars had a little girl die; that set me off too. Little snippets of memory pop up here and there: "Please let me go," is a sad one. The excited hugs she exchanged with Aunt Peggy is a happy one. Maybe overall there is a balance, maybe a balance I can find. *sigh*

Mundane moments, transcendant moments, memory and imagination, crazy mixture. I am capable and decisive one moment, vunerable and can't make up my mind another. I have time to sort through my feelings. I'll take it.

Some days I am mostly OK. Some days I am mostly not. I keep going. I manage. I've decided I'm not going to die of a broken heart.

Margret does Yoga, and other athletic things

2008-11-06T01:11:00.000-05:00

Before her decreasing oxygen saturations robbed Margret of her get up and go, and other things, she did lots of the things any normal kid does. She ran, she played, she climbed and hollered and played tag.

We walked through our local parks together, and especially enjoyed the hikes through Jacobsburg State Park. All the girls liked to look down from the bridge and spot fishes lurking in the water below. Sometimes, if everyone were very tired when we reached the other end of the trail, I would let them wait together while I trotted back down the trail to the parking lot where we started. Then I'd take the car to meet them, and we'd all go home.

She did gymnastics and balance beam in special olympics here, and when she stayed that year at her dad's house, she did cross country skiing - and brought home a medal.

One Christmas I bought a gift certificate for riding lessons to give to the horse crazy B. Margret came with us, and the teacher offered her a lesson too. It didn't work out exactly as the teacher had expected, with Margret almost falling off. She needed a little more individual instruction than the other girls her age, but both girls got lessons. Margret even competed at a horse show or two, and brought home ribbons. She enjoyed riding. She enjoyed being around the horses. We were very proud of her.

As a family we each got our own bowling ball and shoes, and, surprise, surprise, went bowling! Margret was pretty good, too. I had to hustle to stay ahead of her. Husband was lots better than Margret or me, so we mostly competed against our own previous scores.

Margret and I joined a water aerobics class at the Y. She did great. While I swam laps in master swim, she developed a lovely backstroke with a little help from the swim coach. She was comfortable in the water, and able to swim the length or width of the pool.

After Margret was put on oxygen, her choices in exercise became more limited. I took Margret to Contra dancing (a little like line dancing, but not exactly, if that helps any) but she ended up sitting almost the whole time, too tired to dance much. We tried a yoga class, but that went WAY too fast, and again, Margret sat most of the class watching the other students. I inquired about individual lessons, and that worked much better for Margret. In a one on one teaching situation she excelled. Her muscle tone improved, her balance and coordination too. Some of the breathing excercises, when she had a cold or mild bronchitis, helped her make sure all the segments of her lungs were expanding as best they were able, and helped keep the cold from getting worse. At least in my opinion the yoga helped do that.

Yoga was a really good workout for her as she was recovering from pneumonia a couple years ago. The classes were paced to what she could do, so she was pushed to improve, but not too hard.

Margret practiced yoga with her teacher right up until she entered the hospital this last time.

Margret's Crafty Mama - Origami (flapping bird)

2008-11-03T03:12:00.003-05:00

When the girls were little, about 4, 6, 8 and 10, I did an Origami Workshop for the children's room at our local library.

We prepared by teaching the Children's Room staff how to make the items we had planned. The girls all helped to show them.

When the participants and their families arrived, and started folding, the girls and the staff helped the workshop go smoothly. I stood at the front of the room, demonstrating with BIG paper, and staff and girls assisted anyone having trouble following the directions.

Here is one of the pieces we folded that day, a box that can be made from any reasonably large rectangle of paper:

And here is another. This one is a favorite of mine, and I have made many many mobiles using this design.

One More ceramics photo

2008-11-02T21:45:00.004-05:00

Thanks to Margret's sister B, I have a copy of the photo I was lamenting.

The cats she's holding, she did. The indian maiden (Pocahontas?) on the top shelf is her work. I did the ginger jars. The teapot and Belle from Beauty and the beast are her work as well. Over her shoulder you can see the head of another figure she painted. The mugs behind my head were collected by husband, from MusikFest.
Do you do ceramics? Buy greenware? Paint bisque ware? How do you amuse yourself and make presents at the same time?

I Made It Myself

2008-10-31T15:11:00.007-04:00

I originally titled this I got angry so she could say, "I Made It Myself" but I like the short version better. It's pithier. It's right to the point. I think I get way too wordy, and eventually get to my point by way of Robin Hood's Barn. That's how my Dad used to refer to my series of digressions that eventually, if he was patient, would end with the point I wanted to make. But I digress...

Among the things I was told that Margret would never do was have a hobby.

Have I mentioned that the pediatrician who saw Margret in the hospital was a pessimist? Maybe I didn't, maybe he wasn't, but he sure sounded like one, saying She'll never do this, she'll never do that. And she won't do all those other things you expect of a normal child.

Yes. Listening to him could have been very depressing. (It was.) It could have thrown me into a deep funk. (It came close.) But when he implied that this girl child who had just been born to me was not of value to me, should not be of value to me (Get her on a waiting list for a state institution. The waiting list can be as long as six years so you should do it right away. Don't get too attached.) he made me angry. Very angry. Like Bruce Banner (character in the Incredible Hulk series, who says, "Don't make me angry. You won't like it when I'm angry.") angry.

When you make me that kind of angry, I may not turn green, swell up, roar and smite you, but I will dig in my heels and oppose you. I will assess my options and decide whether it is better to rise up against you, or to bide in patience until you go away. By making me that kind of angry, you lose credibility in my eyes, and you have already lost the war.

I had the support of the nurses on the maternity unit. I had the support of family. I had support from the kind women in the La Leche League. I had faith in my love for my baby. I believed that if I believed in her, and supported her, she would grow up to be the best Margret she was able to be.

Fast forward a couple decades.

Margret's sister C and C's friend G took me and Margret as their guests to a ceramics painting class. Margret had a wonderful time, and wanted to do more. I signed her up for a class of her own, and provided transportation. She loved it. She enjoyed chatting with the other class members. She came home glowing with good spirits. She brought home beautiful things she had painted herself.

After a time, I signed up for the class too. I got annoyed spending time driving back home, puttering for a very short interval, then going back to pick her up, when I could stay and have some fun.

There was some, "Mom, would you do this for me please?" but the teacher knew she could do it herself. I knew it too. I had my own project to try to finish. So she did it herself. And she did it very very well.

She used many of the pieces she completed as gifts. I wish I had photographs of all of them. One she made as a gift to her youngest sister was a half size baby bunny. Another was a duckling she gave as a gift to Nana.

Nana had a collection of ceramic ducks and geese on her kitchen windowsill, and Margret's duckling had a place among them. We got to see it each time we visited at Nana's house. It made me smile to see it sitting there in the sun. Every time. Here it is, the leftmost duckling. Sorry this is blurry, but it is the only picture I found of it in my collection.

I don't have any photos of the bunny, or of the cat she gave one aunt for a mantle decoration, or of most of the other pieces, but they were very nice. You may take my word on that. One of the pieces Margret kept was an angel. That's Margret's angel in this next picture.

One year she made a bunch of ceramic boxes and used them for gifts to family members. She made extras and let me take them to the craft fair with me to sell. Here is a close up of some of her boxes.
And the following picture shows some of her pieces on display on my table at the craft fair at Amore Farms
Another year she made snowflake boxes for almost everyone. She proudly said, "I made it myself."

Hobbies, she had a few. Another one she had was knitting. She made scarves for family members for Christmas another year. I taught her to knit with knitting needles, but it took her a very long time. She was interested in a knitting machine, so we looked into getting one. She got all excited about it, so we got one for her. I helped her cast on, then she did the knitting. I helped her cast off and do the finishing. I am convinced she could have done the cast off herself if I had insisted, but she was so excited to go on to start the next scarf that I gave in and did it for her. I have to look for pictures of them for another post.

Fearless DUKW Driver

2008-10-30T06:30:00.003-04:00

In August of 2000, my daughters and I were together at C's apartment near Boston. D had flown in from school in the midwest, and she, Margret and I went on the DUKW tour of Boston. There comes a point in the tour when your vehicle goes down an incline and into the water.

This is the point where the driver asks all the little kids aboard if they want to steer the DUKW. After the two small ones had turns, and the driver was looking for another ~~victim~~ volunteer, D was sitting behind Margret pointing at her with both hands, and bouncing with eagerness. It took a little persuading, but soon Margret was guiding this 7.5 ton amphibious vehicle down the Charles River.

{edit}I was informed that these pictures were AFTER the bridge. And, that if you look closely in the round mirror (bumper view mirror?) you can see the bridge BEHIND us. Also, if you look in the rear view mirror, the eyes, eyebrows and dark hair belong to D.
~~Can you see the bridge up ahead? Yes, there is one, hard to see because when we got closer, I didn't take pictures.~~ I was just glorying in Margret's delight as the driver said, "This is where I usually take back the wheel, but you go ahead and guide her through."

Cool as a cucumber and ten times as pretty, Miss Margret took the driver's directions like a pro. Just had to get a shot from the side so you could see the look on her face, just loving her chance to be behind the wheel, and having a BIG vehicle doing her bidding.

Margret relinquished the helm with a smile, and the tour continued back onto dry land, and back to our staring point. A car tried to cut in next to us as the DUKW turned into the driveway. There was a crunch, and the driver swore. He had looked all around before the turn to make sure there were no cars up to close, and one had to go sneak in and dispute territory. The DUKW hardly noticed, and the car sported a crumple.

And here she is, Margret's DUKW, the very blue Waterfront Wanda, high and dry after we all disembarked.

Margret's Crafty Mama - Earrings

2008-10-29T06:30:00.000-04:00

My sister in law taught me to turn a loop in the end of a wire headpin, and so started me on my nefarious career of making earrings and suchlike from beads of various persuasions.

I have taught a number of other people how to turn the loops to make earrings and bracelets and whatnot, and had a request that I make a video showing how I do it.

Here, courtesy of daughter C loaning me her video camera, is me demonstrating how to turn that simple loop.

OK, moving right along, I have two more videos for you, if you have the interest, and the patience to watch them. This next one is me making the dangles for a pair of earrings.

and then me making a second pair of earrings all the way through.

So sorry about the telephone ringing. I'll have to try doing it over again.

Darling New Baby Girl and Mom Need Some Help

2008-10-28T06:30:00.003-04:00

Please go here and read about baby Claire, who was born with an extremely rare heart condition (same link as on Crystal's page, if you want to see what the problem is while you are still here), and her mom Jen. There's even a photo of darling little Claire.

Crystal (I'm sending you to her blog) has a Donate button at the top left if you wish to help with finances, and has posted an address so you can send a postcard with good wishes.

When Margret was in the hospital this summer, the cards she received brightened her day. Jen can certainly use a little extra "bright" in her days.

Yes, and read the comments there, too. Don't feel a need to apologize if all you can offer are prayers. good wishes, good vibrations or the like. It all helps.

What? Why are you still here? Go on, Claire's picture is waiting for you there!

A Vignette by an internet friend and poet

2008-10-27T06:30:00.002-04:00

I would like to share with you a poem left in Margret's guest book on her homestead site. The writer has captured a special facet of Margret, and the way a great many people saw her personality. When I told her how much Margret enjoyed it when I read messages to her from her guest book, she made it a point to leave little verses there, to make Margret giggle and brighten the day for both of us.

Thank you, Phoebe.

If Heaven has a greeter,
someone waving, it's this way,
You've lived the best life you knew how,
so here's where you will stay.
Margret would be chosen, for her heart and for her smile,
which says love's waiting here for you, you've just been gone awhile. Come be with your family, tell us what you're learned.
Relax because you're home now. This rest you have earned.

Margret feet with Bunny

2008-10-26T06:30:00.003-04:00

Here is a story in pictures of Margret and baby bunnies.

I stepped outside intending to take the recycling out, and saw a mommy bunny and several babies on the lawn and walk in front of the house. I called Margret to come see the bunnies. She came outside and sat on the step.

"Bunnies! Aww, cute!"

Then I took the recycling bin out to dump in the outside receptacle, going wide around the step in hopes of not scaring the bunnies... and the bunnies ran. One ran right behind Margret's feet, and sat very very still, hiding.
Poor bunnies didn't like how the recycling made loud rattling and banging noises. I told Margret not to try to touch the bunny, but the noise sent the bunny quivering against her feet.

"He's so SOFT!" she exclaimed.

I spotted another little bunny bun bun sitting in the grass at the edge of the driveway, so I took my camera, lay down on the driveway and zoomed in on him. Good optical zoom on this old camera of mine. Camera lens was about three feet from bunny.

One more picture of little bunny hiding himself behind the feet, and tickling Margret.

Mama Bunny didn't seem very concerned. She sat on the dirt and rocks at the end of the street, perhaps thirty feet away from her babies. You may have to click on the image and see the larger version of it to pick out Mrs. Bunny, who is in the center of the picture.

More Time. Better Time.

2008-10-25T06:30:00.004-04:00

I am thankful, very thankful, to have had as many years with my daughter present in my life as I did.

In spite of the pediatrician at the hospital where she was born, who told me she would die by age two, or if she reached her second birthday she would die before age ten, she lived to be an adult.

Her health declined and she wanted to have her heart repaired. The surgeon, after his office played phone tag with me all summer in 1999, left a message stating simply that she was not a candidate for surgery. His office and I did the phone tag thing because I was back and forth to Florida to deal with my mother's affairs, and especially her house, which needed to be cleared out so it could be sold. I spent a total of eight weeks there, in one and two week blocks. After my return, I could not elicit a reason from his office staff as to why she was not a candidate. We did find out the reason when, in January, we saw the doctor who gave her her diagnosis of Eisenmenger's syndrome. He explained that for many years surgeons would repair the heart of an older child, only to have the child die after successful surgery. As soon as they figured out the surgery was causing these deaths, they stopped. After that, only children young enough not to have the permanent changes in their lungs caused by the heart defects were considered for repair. He's also the one who said she should see the tranplant people, for completeness sake.

Margret was prescribed supplementary oxygen in June of 2000. At that time her 'normal' saturations were in the 80s. The low saturations went a long way toward explaining why she had difficulty following directions, and considering whether she should act on an impulse or not. She lost one of her volunteer postings earlier the same year for not following directions. I am sure it would have helped if she had been given oxygen earlier, but who knew? I certainly didn't. She managed well enough with the day to day minutiae of her life that no red flags went up for me or for her doctors. There were no obvious symptoms as her saturations dropped. A cardiologist opined that the drop was slow enough for her to learn to compensate, so he, and others, did not pick up on it. She lost another volunteer posting after starting on the oxygen. The director did not want a volunteer on oxygen to be in, or anywhere near, their kitchen.

With the other things happening that year, it was October when she first saw the transplant doctor to see if she ought to be considered. He thought she might be eligible for the transplant program, so he scheduled her to see the people at TUH for an evaluation the week after Thanksgiving. While she was off having a test where they didn't need Mom trailing along, one of the doctors stopped by her room looking for her. He found me instead. Realizing how uncomfortable I was asking about her death with her in the room, I took that moment, "What do you think of her life expectancy without a transplant?"

He thought about it for a very long moment and replied, "At her current rate of decline, I give her two years, maybe a little less."

She didn't have the lung transplant. Insurance didn't want to pay for a procedure done so seldom, borrow a pediatric cardiac surgeon from the children's hospital next door (had they ever done that before? I don't think so.) to repair her heart, and give her new lungs.

I can almost hear some of you wondering, "Why a pediatric cardiac surgeon?"

Answer: Unless you are a pediatric cardiac surgeon, you have never had to repair the sort of heart defect Margret was born with. Most folks with that type of defect have either had it repaired as an infant, or died before reaching adulthood, so a typical cardiac surgeon (for adults) has never done this repair.

Along with that, when Margret had an echocardiogram done, the techs at the adult hospital didn't know how to interpret what they were seeing, so the docs sent her next door to the children's hospital to have one done there. The chief of pediatric cardiology himself did her echocardiogram. He also offered us an apology, on behalf of his entire profession, that surgeons around the time of Margret's birth did not offer to repair a heart defect if the heart in question belonged to a child with Down syndrome.

What I wanted for her was the best quality of life with the least invasive treatments, so I was not at all unhappy when the doctor at the next hospital said, "She doesn't need a transplant. We have drugs to manage pulmonary hypertension."

The medications she started on there made her quality of life much better. See also A Lot of Hope The main medication was nifedipine, a calcium channel blocker, which relaxes smooth muscle so it widens arteries and veins. For Margret especially, with her pulmonary hypertension, it allowed more blood to flow through her lungs.

That specialist also believed in treating for CHF (congestive heart failure) before it became obvious. She said her patients were more comfortable, for longer, with treatment. Margret said, "Comfortable is good!" She treated Margret with a diuretic (furosemide) to prevent the fluid build up that is CHF.

Her low oxygen saturations encouraged her body to make extra red cells for oxygen transport. If you move to a higher altitude, your body will do something similar to compensate for the lower partial pressure of oxygen there. It's called the High Altitude Adaptation, and it's what allows people to live anywhere from sea level to high in the Andes. (and other mountain ranges, of course) The reaction by Margret's body was extreme, so her platelets were vastly outnumbered, as is true of many people with PH. On the other hand, the edges of the holes in her heart are rough, and encourage platelets to stick, and start the clotting process. So she is at risk both for random clots and uncontrollable bleeding. The clotting being more dangerous, the doctor prescribed a blood thinner.

This specialist was also hopeful about life expectancy. She told Margret that as long as she responded well to her medications, and nothing unforseen happened, she could live a long time. How long? we asked. Well into her forties, she said.

Some years later, when she was again doing less well, another specialist put her on Revatio to help control the PH. The difference it made was remarkable. From being quiet, she returned to chatty self, and from an "Anything will do," attitude, she recovered her ability to be choosy, and sometimes even to argue with me. You would not believe how happy that first argument made me. We argued about whether we would have ice cream for dessert. Yes. She won.

All these medications, and others, improved her quality of life, and increased the time we had together.

I knew she was likely to die before me, but I wanted her to grow old and let me die first. No parent should have to cope with the death of their child. There is a part of me (selfish, selfish!) that still insists we should have had more years together, more birthdays, more holidays, more road trips. More everything, more time.

We did the best we could, she and I. I sometimes wonder if my best was good enough, but her best was absolutely perfect. She enjoyed her family, and they enjoyed her. She enjoyed being around people and chatting with them, and her volunteering allowed her to give of herself. Giving was important to her, and making the world a better place. She did that.

Somebody Loves Me, and a little philosophy

2008-10-24T06:30:00.006-04:00

I've been trying to write some difficult things, and it is not coming easily.

I write. I cry. I get up and pace. I grab a tissue and wipe my eyes. I blow my nose. I sit back down to write some more. Repeat.

I'm not finished. I am not satisfied with what I've written. I need to write this down, but for now, it isn't working. The story isn't coming out the way I want to see it. These words are the same words I use every day, but this day they don't sound like the idea I am trying to convey.

I save the drafts, and go looking through my collection of photographs. I find some that make me smile. And more. I smile through my tears. My tears dry up. I'm smiling. I know the tears will be back, but for this moment, I'm remembering how much fun we had together, and I'm smiling.

I decide that I want to share a happy moment with you today, instead of something serious and painful. Yes, there were a lot of serious moments in my life with Margret, but the happy moments were more plentiful, far more plentiful. I loved her very much, and she loved me. I love her still. Now I have to decide which one of all these happy memories it will be. Eeny, meeny, minie, moe. . . . THIS one!

It's Valentine's Day and a big white truck pulls up to the curb. The driver rings the bell and knocks on the door. "I have a delivery for Margret," says the driver, handing over two floral express boxes. I sign for them, because Margret is out right now, volunteering.

One box contains iris reticulatus and tulips.

I run water into the glass vase that comes with them, add the packet of flower preservative and stir, then arrange the flowers.

The other box contains bright red roses and babies breath.

Following directions, I arrange the flowers in their vase after cutting off the bottommost bit of stem.

Margret comes home from volunteering to see the boxes, read the address, and say, "Somebody loves me!"

Then we read the card together and she wanted me to send the flowers back. The flowers came from Margret's dad, the ex-husband who lives a dozen states away. During their growing up years, he almost never sent cards or presents to the girls for birthdays or holidays. Sometimes he would pick up the telephone to wish one a happy birthday, but he wasn't consistent. B would run and hide under the bed rather than talk to him on the phone. C would talk to him, but when she did, there was a sort of wariness in her demeanor. I can't remember him calling to talk to D, but that might just be my memory.

I suspect he was hoping to make up for some of joy he missed out on.

*sigh* This memory was not perfectly happy, but what event is entirely joy, entirely pain, entirely one thing or the other? Isn't it sadness versus sunshine that makes life brighter? Doesn't the contrast between tears and joy make a happy moment happier?

If you ever figure it out, please let me know.

Happy Girl

2008-10-23T06:30:00.000-04:00

This picture is from another trip to New York City, this time to the Bolivar Arellano Gallery for a fundraiser auction of Ricky Martin posters, books, magazines, pictures, etc.

Margret had enormous fun talking to everyone. She even bid on a couple items to give me. Among other things, she came home with a poster that someone else bid on, and then gave to her.

Early Intervention

2008-10-22T06:30:00.002-04:00

Margret was one of the first babies in the early intervention program at the local ARC.

She only a few weeks old when the first therapist paid us a visit. The therapist evaluated Margret's abilities and then showed me how to make Margret do a sort of sit up (I pulled her to sitting from lying down) to strengthen her neck muscles. The therapist would return in a week to see how we were doing.

I was to do this activity with Margret for 15 minutes at a time, twice a day. After about the sixth sit up in our first group, Margret started to object. Loudly. I picked her up, cuddled her and got her calmed down. Then I did a few more sit ups. She objected, so I gave her a break, and gave a good bit of thought to what I was going to do next. For the rest of the day, I had her doing a few sit ups each time I changed her diaper. We settled on three as the number she would do without getting cranky.

Over the next few days, instead of the 15 minutes twice a day, that's what we did, a few sit ups at each diaper change, with Mom singing or doing rhymes or rubbing noses, anything to make it fun.

By the end of the week, I could see a definite improvement in the steadiness with which Margret held up her head, but I was concerned that the therapist would not be happy with the change I had made in the therapy.

At the next visit I confessed, and the therapist frowned. When she evaluated Margret's progress, though, the frown turned to a smile, and she said we could continue with more of the same.

There were more home visits and more exercises, and then, when Margret was a few months old, therapy was moved to a group setting. I put Margret in her baby carrier on my chest, and walked to the sessions.

There were other babies there, and I enjoyed chatting with their mothers. Margret found the new and different toys of interest.

It was here that she had her first formal evaluation. Of the questions on the form, the only one I remember clearly is "Regards raisin". With Mom and a new interesting person to watch and listen to, and to Margret all people were more interesting than things, the evaluator had a difficult time deciding if Margret did indeed regard the raisin.

This early intervention stuff seemed to help, and more children entered the program. They moved therapy sessions to larger quarters, and started to send a van to pick the children up. I rode the van with Margret until she was deemed old enough to go by herself.

And a Little Child Shall...

2008-10-21T06:30:00.001-04:00

Margret had knee surgery when she was six. Some days before the surgery she was scheduled to have blood work done, so we went to the blood lab at the hospital and did that.

She was fine with the blood draws, and liked the phlebotomist.

Taking her hand, we walked the short distance to the cashier's window. While we were standing there, sorting out insurance and settling the copay, I noticed that she was not at my side.

I could see into the lab from where I stood, and there was Margret, next to the same phlebotomist who had done her blood draw, and a large and stocky gentleman. The gentleman seemed to be reluctant to have his blood draw done.

Finished at the cashier, I hurried over.

Margret was talking to the man. She showed him her bandaid, and took his hand. She said "See, you'll be ok!"

While he was distracted, the phlebotomist inserted the needle.

I took Margret's hand, and apologized for her interruption. The gentleman looked bemused, and the nurse smiled. Seems he had a longstanding fear of needles, and Margret had shown up at the perfect moment to make his blood draw easier.

Just another case of "And a little child shall lead them."

Battling Demons in my Mind

2008-10-20T06:30:00.002-04:00

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.

My Sister Is Having My Baby

2008-10-19T06:30:00.002-04:00

Last fall when we found out my youngest daughter was pregnant, Margret seemed sad, and her mood turned gloomy. Talking about why with her, we covered territory we've covered many many times before.

"I can't have any children because of my health issues," she said, and moped. "I want to have my own baby."

"Look at it this way," I replied, "your sister is having enough children for both of you. "

"Oh, she's having this baby for ME!" chirped Margret, and smiled.

She's had some issues with depression at least partly because her heart defect and pulmonary hypertension would make any pregnancy a disaster. She loves children. She has wanted a baby of her own for decades, but she's had to settle for being Auntie Margret. She's done really well at being Auntie, *sigh* but she wanted to be Mom.

Over the years, her various doctors discussed with her the dangers of trying to support a second life with her damaged lungs. One of the earliest of them leafed through his notes after her interview and exam, reviewing her chronic cyanosis and her other problems. He made eye contact and told her gently if she did become pregnant the baby would not survive. "You don't have enough enough oxygen for two," he said, "you barely have enough for one," and continued by saying she had only a fifty per cent chance of surviving the pregnancy herself. Margret looked seriously unhappy.

This conversation occurred before Margret's other doctors prescribed supplementary oxygen, and before she started taking the medications that made her life so much easier. She and I sat there with this doctor, and I asked him if he had any guesses about how long she might live.
He said she could continue as she was for years as long as she remained stable, but he honestly didn't know how long that might be. He recommended she see the transplant surgeon for an evaluation, "for completeness sake," and asked if we had any further questions. That was when Margret told him she wanted to have a baby.

Margret and I discussed the issue on the ride back home. I told her I would much rather continue to have the company of the daughter I have than to lose her in an attempt at a baby we didn't know yet. She told me it would be OK if she died having the baby, as long as the baby lived. The doctor had been very clear: there was nearly zero chance of a happy outcome of any attempt at pregnancy, so no living baby. I explained it all again, in the same words, and then in different words. She pouted, she argued, then folded her arms across her chest in morose silence.

The next time she broached the subject of babies, she suggested that I could adopt a baby for her to raise.

Nope, I said, I'm done with raising babies.

Well, then, she said, SHE would adopt a baby, and I could help her take care of him. (him? she wanted a boy?)

I was not very keen on that idea either, so she put it aside for a time.

The next time she asked about adopting a baby, I had come up with a new thought. This was not long after we'd been talking about her desire to have an apartment of her own, or to live in a group home, so I said, "After you move into your own place, you can look into adoption."

Another time, another baby discussion: (approximate rendition)
Me: You know that new babies have to eat every two to four hours around the clock, and have their diaper changed, and be bathed.
Margret: You can move in with me, Mom, and help care for my baby.

So you see this was an important issue for Margret, and at intervals occasioned her much disappointment.

Back to her sister -
"Oh, she's having this baby for ME!" chirped Margret, and smiled.

I backtracked, and tried to explain more clearly what I meant, but Margret had seized this concept and she was not letting go.

The next time we talked to her sister on the telephone, I sighed, explained and apologized. When her sister heard how much happiness this idea brought to Margret, she went along.

Margret did get to see "her" baby, and to hold him close to her before she died.

Her sister bustled in at 1 am, fresh from her flight, and handed Baby to me. Margret lay quietly in bed, eyes closed, having recently received sedation.

I held Baby on the bed, and put Margret's hand on his tiny feet without saying anything. He wiggled his feet, and she moved her hand off. I said, "Those are the baby's feet. Aren't they tiny?" and she put her hand back. "What little feet!" I talked to Margret about Baby, and she kept her hand on those precious feet.

Sister took Baby and leaned him across Margret's tummy, putting Margret's hand on his back. "That's the baby you're holding, Margret, keep your hand there so he doesn't fall," she said. She chatted to Margret, and Margret kept her hand there, holding Baby.

While Sister chattered away, she moved Baby, tucking him against Margret's side, and positioned Margret's arm to cuddle him securely. Baby looked all around, quiet and content in his Auntie's embrace.

Laundry, Then and Now

2008-10-18T06:30:00.001-04:00

Way back when my daughters were about two, four, six and eight, there were three identical marigold sweaters. Identical, that is, except for size. Those three sweaters started life with tags in the neck that told which one was a size 4, which was size 6 and which was a 6X. Tags tickle, or itch, or otherwise bother the wearer, and those wearers removed the annoying tags.

At that time we took our washables to the laundromat. Mom dealt with the washing, drying, sorting and folding, and turned the clean items over to their owners at home to put away.

On one laundry expedition, it turned out that only two of the three marigold sweaters came along, and without tags I was at a loss to know which sweater belonged to which child. When I asked the children I had three claimants for two sweaters! (cut to the fight scene) I had to check in the dresser drawers to see which claimant was mistaken.

I really disliked sorting and folding clothes, and wondered if the girls could do it, and without squabbling.

I purchased plastic crates from a nearby restaurant/lounge whose owner was using them to support the stage. Now each girl had a laundry basket of her own.

I gathered the girls and explained what I had in mind:

Just like BIG GIRLS do when they grow up and go off to college, the girls would be doing their own laundry. Each one would be responsible for putting her dirty clothes in the basket. Each would be responsible to make sure that ALL of them got their laundry baskets safely down the stairs and into the car on laundry day.

At the laundromat, each would be responsible for staking out a washer, and putting her clothes in it. I would distribute money for the washers, and teach them how much detergent and fabric softener to use. When the washer finished, each would be responsible for staking out a dryer and getting her clothes into it. The laundromat had wire frame carts for moving clothes from washer to dryer, so I encouraged responsible use of these carts. I would distribute money as needed for dryers. Then each girl would be responsible for folding her clothes back into her basket, and seeing that her clean clothes got into the car for the ride home.

Once we returned home and got the clean laundry inside, each girl would be responsible for putting her clean things away in their proper places.

Amazingly enough, the littlest one was the most enthusiastic about the plan. I think it was the thought of being like the BIG GIRLS, and doing what the BIG GIRLS do that pleased her. The middle two gave me looks like, "Mom is trying to put something over on us." Margret was cheerfully agreeable.

Digression:
Speaking of BIG GIRLS and laundry, when I went off to college, some of the other ladies who shared my floor in the dorm were clueless when it came to wash. They'd never been involved in producing clean clothes at home, other than opening a drawer or closet and taking the desired item.

Some learned by trial and error. They learned lessons like:

You need to separate things-you-want-to-stay-white from things-that-might-bleed-unwanted-color if you don't want your white undies and tshirts to be pink or green or grey.

You need to wash delicate lacy things separate from jeans, and separate from other clothes with big toothed zippers or hooks.

You need to read the label to see if an item can be machine washed at all. -
One girl machine washed a Dry Clean Only garment. The result looked nothing like the original. She cried.
Another had a lovely wool sweater that her gran had knitted for her. She machine washed it in hot water because she'd spilled coffee on it, and then tossed it in the dryer. She ended up with a felted sweater that might fit a large doll or a small four year old, whose texture reminded me of steel wool. (Joke: if I give you the steel wool, will you knit me a Porsche?)

Others asked for help. "I don't know HOW to do laundry," wailed one, "what do I DO?" Usually one of the other girls would come to the rescue.
End Digression

Over the course of six months, approximately, the girls learned to wash, dry, fold, store and generally care for their own clothes. They learned to turn a crate over and stand on it to reach into the depths of a washer to get wet clothes out. They learned how one girl could stake out a dryer, and hold it while another brought wet clothes over. They learned to work together to get the job done. They learned ingenuity.

Margret took ingenuity one step beyond. She loved to talk to the other patrons of the laundromat. She didn't especially like to fold clothes. She would often pick out a grandmotherly sort, chat with her, and persuade her to fold all the clothes. If I stepped in and suggested that Margret needed to fold her own clothes or she would not get enough practice, the grandmotherly sort invariably said, "Oh, that's ok, I don't mind folding." If I insisted, Margret pouted a bit, then folded her own things.

When we got a washer and dryer of our own, we arranged for each person to have a particular day to use the washer. Negotiation was allowed if someone wanted to swap days, or do a little laundry on the same day as someone else.

When the girls went off to college, I got to hear disbelieving stories of fellow students who had never used a washer. Those made me grin.

Not Much Money? Make Do

2008-10-17T06:30:00.000-04:00

As a single mom I didn't have a lot of money to spend on "stuff" for my 4 girls. I usually made things, or did things with them, even though I had to work. They all had chores, and were responsible for getting their laundry together and down to the car when we made a laundromat run. I even had them *gasp* fold their own clothes. In spite of all the perceived lacks, my girls have grown up, and turned out well.

What amazed me was a conversation one daughter (C) shared that she'd had with a best friend (G) from Jr high. Both of G's parents worked, and gave her lots of "stuff", but never spent much time with her. Back then, C envied all the neat stuff G had. G loved to visit our house, whether C was home or not. G told C she wished I was her mom, because I spent time with my girls, and taught them neat things. Her mom was always to tired or busy to spend any time with her. It was an eye opener for C.

C also explained why she and another sister were so often invited to birthday parties. Not so much because they were popular, but because the ~presents~ were so popular. C gave as example a large zippered pencil pouch I made from upholstery vinyl scraps. I put some pencils, some pens, a small scissors, an eraser and a little stapler kit inside. She told me all her friends wanted one. *chuckle* The friends all envied her homemade book covers, too.

Oh, and the word "No" meant just that. I hear kids in the grocery store whining to Mom that they want this, they want that. At that time I had a very fixed budget. If the girls wanted something they saw at the grocery, and I said No, then all the whining in the world would not shift me. So they didn't whine. On the other hand, if I thought the wanted item was reasonable, I'd say "yes, but you have to choose things to put back that equal its cost." (real world math lesson here) Then they had to negotiate among themselves what to put back, and the choice had to be unanimous, although I had final say whether the swap happened. One time C wanted a box of sugary name brand cereal, and suggested putting back my instant coffee. I looked at her and asked, "Do you ~really~ want to deal with me in the morning when I've had no coffee?" She promptly left my coffee alone, and chose something else to negotiate.
They were disappointed in the cereal. It wasn't as good as they thought it would be, it was gone in two days, and they missed the items whose place it took.

Since we were on such a tight budget, we very seldom went out to eat, but about once a month, on Saturday morning, I'd let them eat out, in my kitchen. I made up hand written menus with "My Eatery" at the top, and listed all the possible breakfasts I was willing to make that morning. I set out place mats, water glasses and silverware rolled up in a napkin. I gathered the girls at the table, (picture them as 4, 6, 8 and 10) handed the menus around and announced, "I am your server this morning. Our specials this morning are.... May I get you something to drink now?"
I'd get their drinks, (they could order coffee, and get a grown up teacup a quarter filled with coffee and three quarters milk. Likewise with tea.) and take their orders, and treat them like grown up ladies. I know this was a hit with them, because in later years they told me so.

A Lot of Hope

2008-10-16T06:30:00.002-04:00

In 1999 Margret got tired of being tired. She decided she wanted to get her heart repaired, at long last, but the pediatric cardiac surgeon suggested by our family doc said she was not a candidate for surgery.

Upset that he would not explain further, I hunted the internet for a doctor specializing in adults with unrepaired CHDs, and found one at Jefferson. We got an appointment and he told Margret that she had Eisenmenger's Syndrome. Finally, in January 2000, we had a diagnosis! He said the reason she was not a candidate for surgery to repair her heart is because changes in the lungs caused by the heart defect become permanent, and are not compatible with a repair. In other words, if she got her heart fixed, she would die. He encouraged us to consult with the tranplant doctors at Temple. It was a year of catastrophes, so we did not get with the transplant people until October. Her evaluation was scheduled for just after Thanksgiving. My Mom died Halloween morning, and we buried her with Dad on November 6th.

Margret had been put on oxygen in June, because I noticed her feet turned from their usual purplish color to a dirty white when she walked around. No one had thought to check her oxygen saturations before May, because she seemed to be doing well. I had no idea. Her saturations were in the low 80s, and 6 liters of oxygen only brought them up to the high 80s.

The transplant folks originally thought an 'en bloc' of heart and lungs would be a good idea. They finally settled on a plan of giving her new lungs, and borrowing a pediatric cardiac surgeon from the children's hospital next door to repair her own heart. Our insurance said no. Given a choice of fighting the insurance or going to a different hospital, we went.

The doctor there said there was medication that helped with the PH. I'd asked the transplant guys about medications, and they tossed it off with, "Oh, it's experimental, we only give it to our people at the very end to help them hold on so they can get new lungs." The new doctor explained there were THREE medications she found useful, and how she did a challenge with each medication while measuring the pressures on both sides of the heart through catheters to decide which medication was best, and what dosage would be most effective. I explained it again, in little words, to make sure Margret and I both understood. Then Margret decided she would try medication. It was a week in the hospital, the first day in the cath lab, that night in CICU, and the rest of the week in the cardiac stepdown unit while the doctor adjusted the doses of the other medications she would be taking with the main one.

When we went home, Margret trotted right up the stairs to her room, not stopping once! I had tears in my eyes, because she used to stop 3 times on the way up the stairs to rest, finally clinging to the rail at the top while deciding if she had to use the bathroom, or if she could just go plop on her bed.

A Little Logic

2008-10-15T15:26:00.002-04:00

Margret had a few episodes of fainting, five that I know of, over a period of several years. Here's how I reasoned one day in the late 1980s that she had pulmonary hypertension:

Margret had just completed a riding lesson, and had done well. She was now standing, holding the horse's head, while her teacher picked out his feet.* Her lips became very blue, and she fell over. Fortunately she still had on her hard hat to protect her head. She was limp, her skin was bluish, and she didn't respond to my voice nor her teacher's nor to being shaken.

While this was going on, some analytical part of my mind said, "She was just riding, so there was a greater demand for blood in her body, and her capillaries are now dilated. That lessens resistance to blood flow out through the aorta. With the hole in her heart, lessened left side resistance encourages the blood to go that way, through the hole from right to left, and not off to her lungs to pick up needed oxygen. So. Cyanosis. And a faint. That means the resistance to blood flow in her lungs is high, needing higher pressures to push blood through, hence pulmonary hypertension."

She revived on her own after a very short time. She appeared quite normal after, but was excruciatingly embarrassed that she'd wet herself. We went home, mentioned the incident to the doctor, saw the cardiologist, and life went on.

When I explained my reasoning to her cardiologist, he nodded absently and moved on to something else. I wasn't sure if he blew me off, or if he simply didn't think this fainting business was important, but that's as far as it went. We did not get a proper diagnosis for years.

Wish I knew then what I know now. He would have got an earful, and we might have changed specialists. I would have done a number of things differently. But I didn't know. I don't think there were many people at that time, medical or lay, who knew.

Hindsight. Isn't it wonderful? and terrible? and generally useless in the now except to make you feel bad.

I did the best I could with the information I had. I just didn't have enough information to do the things that might have slowed her PH down. Back then, the phrase 'pulmonary hypertension' was just a description of something I had worked out with logic, not a diagnosis, not worthy of capital P and H.

*Students usually picked out the horse's feet on their own, but Margret had knee problems. The amount of difficulty she experienced, and fear of an accident, exempted her from doing feet, but she had to participate by holding the horse still.

Margret and her sisters

2008-10-14T23:30:00.003-04:00

I'm going to make this brief, because it's three months since we came home without Margret. And it still hurts.

Just look at all the lovely smiles.

A Working Guardian Angel

2008-10-13T14:52:00.005-04:00

Sixteen years or so ago, a friend persuaded me to take a karate class together.

One of the scheduled days, our class was diverted from the gym where we usually met to a mat room on account of a basketball tourney. Since the room had wonderful thick mats, our instructor decided to teach Judo moves that day.

A great many years ago, I belonged to a Judo group that met at the Y, and I was pretty good at it. I remembered the move being shown to us, and more importantly, my muscles remembered it.

I neglected to factor in the plastic mats we were standing on, which gripped skin well, unlike the canvas covered mats on which I learned. Neither did I account for years without practicing, nor a currently more sedentary lifestyle.

On the command to try this move, I drew my partner/opponent's weight onto my shoulder, pivoted on my right foot, and deposited my partner on the mat.

That's what should have happened. I got as far as 'pivot', and my foot stuck to the plastic. My ankle held, my hip held, but my knee emitted a pop audible to my partner, and produced a bright intense flare of pain like a baby nova behind the left side of my kneecap.

I tested the knee, and decided I'd done something awful to it, something stupid, clumsy and thoughtless. Bah. I told my partner I had to go home, then sought the teacher to inform him I'd be leaving and why.

I stopped at the family doctor's walk-in clinic instead of going straight home (they had regular appointment hours, and then held walk-in hours after). When I saw my doctor, he moved my foot around, and one of the manipulations made me levitate from the exam table in pain. He said I had pulled the medial collateral ligament, then gave me directions for care, and a prescription for anti-inflammatory. He said I should be fine within 4 to 6 weeks, if I followed directions, and if I was not, to let him know as I might have torn the cartilage.

I went home, and cared for my knee according to directions. (This was a BIG thing for me, I can follow directions, but do not always do so.)

About six weeks later, I noticed that I was still feeling a twinge as I got into or out of my car with weight on that foot, and the foot not directly under my body. I called the doctor to discuss this, and he sent me to see an orthopedic surgeon.

The orthopedic doc manipulated my leg through a series of movements. some of which made me go Ow! When one particular movement was more than just Ow!, I said, "Hey, that really hurt!" Doc O apologized, and explained the movements told him what was wrong by the where I felt pain, and he was almost done.

He pointed out on the knee diagram on the wall of the exam room the places he believed I had damaged. (I'm fascinated by those diagrams - I have a paperbound copy of Grey's Anatomy with which I am similarly fascinated) He went on to talk about smoothing a rough spot on the cartilage using arthroscopic surgery. We discussed the possibility of using local anesthetic so I could watch, awake, and view, on a screen, the whole procedure. We discussed my tolerance of the Ick! factor, and then he agreed.

Next he sent me down the hall for a routine xray of the knee, to see if there was arthritis, or anything else unexpected.

He came back to the exam room looking serious, and showed me the xray. He pointed out a shadow just above the knee, where no shadow should have been. He asked if I would be willing to have another xray, one that would show the whole bone. I agreed.

He brought the xrays in and stuck them up on the light box. The funny shadow reached from the knee half way up the femur.

He stood looking at the xrays with crossed arms, and thinking out loud for my benefit. "That shadow looks old. It's entirely inside the bone, and it hasn't pushed the bone out anywhere."

He turned to me and said, "It may be nothing, but I'd like to have more information. Would you be willing to go for a bone scan?"

I was, and the scan lab got me in on Friday of the same week. The gamma cameras were fixed, and I had to change positions to accomodate the views the doctor had ordered. My position for the outside of one knee and the inside of the other had me facing the console, on which was a realtime repeater of what the gamma camera saw. For the outside view, I saw a nice outline of the bones, inside the outline only slightly lighter than the background. On the inside view, the other leg, the leg with the pulled ligament, the entire area occupied by the shadow was bright. Very bright. So bright it almost hurt my eyes.

Husband and I went out to dinner with acquaintances, and I enjoyed the meal and the company. I was intent on squashing the funny feeling what I'd seen during the scan, and was almost successful.

That night, I had nightmares. Not just one nightmare, but a series, each worse than the one before.

First I was swimming at the beach, and a shark bit off my leg.

Next I was waiting for the subway in New York City, got pushed off the platform onto the track as a train was coming. I rolled to the side, but the train severed my leg.

After that, I was helping with the haying at my grandma's farm, standing on the hay wagon, tossing hay to the baler. I slipped, and the baler grabbed my foot and wrenched my leg off before it could be shut down.

In the next episode I was walking along with my uncle, checking the integrity of the ensilage conveyer (they never had an ensilage conveyer on the farm to the best of my knowledge) when I slipped, my foot hit an improperly fastened access cover, and plunged into the conveyor where the screw feed crunched up my leg in segments, finally ripping it off at the hip joint, leaving me to fall, bleeding like a fountain, to the ground below.

At this point I woke up to find myself screaming, and my throat sore. Hubby had slept right through. I shook him violently to wake him up, my terrified heart trying to beat its way out of my chest. He muzzily opened his eyes, and asked what's wrong. I asked him if he would still love me if I lost my leg.

This wonderful man blinked at me for just a second, said, "I love all of you, however much of you there is to love," then wrapped his arm around me and pulled me tight against him as he fell back to sleep.

Monday morning the doctor's office called me at work before I had a chance to call them. Chunks of ice formed behind my sternum as the girl said the bone scan had raised a few questions, and they'd scheduled me for an MRI late that afternoon. Could I make it? Yes, I could. Good, she said, you can ask for a copy of the scan and the MRI to take with you... Now the ice ran up my spine and down into the pit of my stomach. ...because we've made an appointment for you with a specialist in New York City.

I went to my supervisor and asked for the next day off. After explanations, he offered to let me go home right away. Envisioning me chewing my nails to the knuckle, and scaring myself into a terrible state, I turned him down. Better stay at work, and accomplish something useful, anything useful, than go home alone and steep in my fears.

The specialist, an orthopedic oncologist, strode into the room with a handful of my films. "Looks like chondrosarcoma* to me," he said. I couldn't believe he sounded so cheerful.

He had with him another doctor, a very pleasant and polite man, who asked me a series of questions including, when did it start hurting? My reply was, when I twisted my knee. Dr. Specialist grinned and said, "See? They don't all present with pain."

He explained how many chondrosarcomas are discovered as an incidental finding during treatment of something else, like my twisted knee, or when someone is walking and falls down because the bone breaks.

I had to ask him, "Am I going to lose my leg?" and felt a certain amount of relief when he said "No." He went on to describe a diplomat whose leg he had saved, even though that person had experienced a fracture due to his tumor. Mine, he assured me, had been discovered far earlier, so I get to keep my leg.

After more discussion, he called his secretary to schedule a surgery time for me. She came back with a Monday, two weeks away. "Not soon enough," he replied, and asked her to find OR time for me this week. She came back again with Thursday, and as an OR becomes available, which was good enough for him.

I had my surgery. Actually two surgeries, because Dr Specialist did not like the way the tumor looked when he removed it, and waited for the full pathology report before doing a reconstruction. The report held good news: my tumor was not nearly as aggressive as it appeared. I was discharged, but went back for follow up at 3 weeks, 6 weeks, and so on, the time between visits gradually increasing to 3 months, 6 months, a year, and then once a year every year.

A few years ago I went back for yet another follow up visit. The doctor, not Dr Specialist, but his successor, told me, with a big smile, that I graduated. I am welcome to return for further followups, but they are not required. Likewise I am welcome to return if I have any more problems with the leg.

The leg works fine, and except for a tendency to ache when the weather changes, or when I fly (easily dealt with by some ibuprofen) it doesn't bother me.

I've been told by some I have a guardian angel. If so, that angel has a warped sense of humor since it took something clumsy, done without thinking things through all the way, to reveal my tumor. Ah, well. I'm here. I have had no recurrence. If this is the sort of help one gets from a guardian angel, I can live with that warped humor.

* chondrosarcoma - a bone tumor arising from cartilage.

Margret's Kids

2008-10-12T23:30:00.002-04:00

About 5 years ago, I was chatting with a friend, a Florida teacher of bilingual first graders, mostly immigrant, mostly poor. We were talking about some of the way she made learning, and especially learning English, more fun for her kids. Viewmaster viewers and reels with educational themes helped interest the kids in learning, but she only had 2 viewers, so it was a long time between turns; if only she had a few more.

Margret wanted to help, so we went shopping for viewmasters. She picked out 2 viewers, and 2 sets of reels. I bought an extra set of reels, and we sent them to Florida.

Our friend the teacher was on beyond pleased, as I'd only mentioned one viewer *chuckle* and her kids were thrilled.

Margret received a thank you from all the children. SHE was ecstatic!

The teacher and I spent less time online at the same time, and gradually lost touch.

Recently I received this from the teacher:
I'm SO sorry that I'm late in learning this! My students over all these years that Margret has supported..sent love gifts..greive for her! You and all the family are in our hearts & prayers.

Livin La Vida Loca, or Margret in New York City

2008-10-11T20:00:00.005-04:00

One of Margret's desires was to go see a live concert by her favorite singer. We did that. And here is photographic proof. Note: Margret did not normally use a wheelchair. The distances we intended to cover on foot in the city, and at the speed we intended to travel, she would have been exhausted and miserable, so I rented one. The folks at the rental place cheerfully added holders for TWO oxygen tanks on the back, so we had the one in use, and a spare. Thanks guys!

Margret got to see Times Square in the rain. Not exactly dancing in the rain, but you are encouraged to use your imagination.

She got to see a police man riding his horse.

She went sight seeing on the Sightseeing bus.
She got to look down from the Empire State Building to see the world spread out below her
but she much preferred being inside the gift shop, picking out something to bring home and gift to her friends.

She got to tour Radio City Music Hall

She got to pose with a real Rockette.

Margret got to see her favorite Latin singer at Radio City Music Hall. Live and in concert. She was thrilled.and to visit, and pose, with other Ricky Martin fans.

How Hard Can it Be?

2008-10-10T04:05:00.003-04:00

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

Margret and Frank Sinatra

2008-10-09T16:25:00.004-04:00

Margret and Frank Sinatra. I'd never thought they had much in common, if I thought about it at all, which I don't think I did. *wrinkling brow while trying to decide if that made any sense*

Today, reading over the lyric for My Way, I see they had quite a bit in common. Margret lived a full life:

She got to see Ricky Martin live in concert at Radio City Music Hall, and from great seats.
She and I did a road trip, by car, to Oklahoma to visit her little sister and her niece and nephews. We had a great time.
She enjoyed time spent with her little cousins and nieces and nephews at Thanksgiving and Christmas gatherings.
She got to go out with her respite person, to do dinner and a movie, or go shopping, or whatever else she desired that they could fit into an evening.
Over the course of her life she had a job or two.
She volunteered.
She enjoyed friends and family.
She liked food, and loved to have take away, or eat out at a restaurant.
She liked to be tucked in at night. We exchanged hugs and kisses, and "I love you"s.

Regrets? Yes, I think she had a few, but small ones given all else she had to cope with.
She wanted to marry and have children of her own, but that was not to be.
She wanted to go on a cruise, but I hadn't got all the logistics worked out in time.
She wanted to spend more time with her sister's babies, but they lived on the other side of the continent, so we did the best we could when we had the opportunity.

I tried to help her make her life as full and happy as possible. And I think I succeeded. Mostly. Because when all was said and done, she was an adult, and felt the things she did because she was herself, and responsible to herself. *Did that make any sense? I hope so.*

For my own self, I can say "Regrets, I have a few, but they're small." The big things, like knowing she knew she was loved, and knowing she knew she could depend on me to help the best I could, those are covered. I did my best. I only hope it was good enough.

My Way
And now, the end is near;
And so I face the final curtain.
My friend, Ill say it clear,
Ill state my case, of which Im certain.

Ive lived a life thats full.
Ive traveled each and evry highway;
And more, much more than this,
I did it my way.

Regrets, Ive had a few;
But then again, too few to mention.
I did what I had to do
And saw it through without exemption.

I planned each charted course;
Each careful step along the byway,
But more, much more than this,
I did it my way.

Yes, there were times, Im sure you knew
When I bit off more than I could chew.
But through it all, when there was doubt,
I ate it up and spit it out.
I faced it all and I stood tall;
And did it my way.

Ive loved, Ive laughed and cried.
Ive had my fill; my share of losing.
And now, as tears subside,
I find it all so amusing.

To think I did all that;
And may I say - not in a shy way,
No, oh no not me,
I did it my way.

For what is a man, what has he got?
If not himself, then he has naught.
To say the things he truly feels;
And not the words of one who kneels.
The record shows I took the blows -
And did it my way!

(my thanks to Lyricsfreak dot com for these lyrics)

The Mask and the Terror

2008-10-08T03:22:00.002-04:00

When Margret had her crash the first night, her lungs were so bad the doctor warned me just the act of placing a breathing tube could cause a heart attack: No more Margret. So I asked him to try without the tube. She was on 100 per cent oxygen, with nitric oxide, to raise her oxygen saturations. She was not tubed. That worked, for a while, with a nebulizer mask.

Her sats kept dropping, so they tried a ventilator with a FACE MASK, not an endotracheal tube. It took several tries to find a mask that fit decently. Third time's the charm. That mask's blue color made it hard to read her lips through it. The mask had to be tightly strapped to her face, or leakage would cause several different kinds of alarms on the vent, as well as squeaks, whistles and fwubby noises that variously annoyed and alarmed her. She had to talk very slowly and choose her words with care to be understood from behind the mask. Sometimes even with her care, I couldn't tell what she said, but "I love you, Mom," was an easy one.

The skin on her nose bridge started breaking down from mask pressure. At this point the vent was set to 10-15, meaning the baseline pressure was 10 psi, and added 15 more psi to help on an inhale.

The Respiratory guy went hunting for a nasal pillow style that might spare her poor hurting nose. The ventilator they used with her was not made to work with masks having exhaust ports; the vent detected lower than assigned pressure, and raised the output pressure to reach the assigned pressure. Problem: the nasal pillow styles have exhaust ports.

The RTs patched over the 8 small exhaust holes, and fit the nasal prongs to her nose. This nasal pillow mask required a chinstrap, elasticky, about 2.5 inches wide, fastened by velcro, as part of the head gear. It looked much like an old fashioned toothache band on her.

Margret didn't like it much, but better, I think, than the full face mask. At least at first.

Her movements and attempts to talk caused the chinstrap to precess anticlockwise around her face, to the point where the nasal part slanted sharply from horizontal. The nurse, the RT and I were talking to Marg. Then I said the angle looked uncomfortable, and suggested the device be repositioned. The RT unfastened and started repositioning. About now some unplanned combination of movements slipped one nasal prong out of Margret's nose, spilling 25 psi of pure oxygen across her open eye. Margret jerked back, ripped the nasal mask off her face, threw it as hard as she could, fought frantically and began turning blue.

As all the vent and monitor alarms started yelling at once, I grabbed her hands, looked into her eyes, and tried to talk her down to calm. Several free nurses and RTs dashed into the room, the big RT who had engineered the patch ending at her head. The others stopped, to be ready if more hands were needed. He grabbed the blue mask off the top of the vent and the vent tubing.

I spared a quick glance at the monitor - sats 44 and dropping. I talked and talked, holding tight to her fighting hands. Her face turned bluer and bluer, verging on deep plum.

Mask attached to delivery tube, the RT held it to her face, and with help, whose I don't know, I wasn't looking, fastened it securely. Focused on Margret, staring into tiny pupilled eyes, I believed in that moment she had no idea who I was except a person keeping her from tearing the mask off anew.

On vent assisted oxygen once more, her color crept slowly from purple to pink, her sats rising into the upper seventies. Intelligence and the Margret I knew leaked back into her eyes. I kept talking to her, and she stopped fighting to free her hands.

Time from ripping the mask off and flinging it to being back behind the blue mask perhaps 30 seconds, maybe less.

Mom's terror, TOTAL.

Someone asked if I was OK. I said yes. The shaking didn't start until after it was all over and I had stepped out into the hall. Marg's nurse asked me if I was OK, and I said, "No, but give me a little time."

Later, talking to Margret's doctor, I learned that her sats had fallen to 36. Yup. Terror. Yes, I tend to hold it all together when the chips are down. I'll have my meltdown later, when it's safe to do.

Time to Remember and Give Thanks

2008-10-07T14:41:00.005-04:00

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

Fixing smiles

2008-10-06T22:33:00.004-04:00

Today was a very weepy day.

Here's why: Several things came in the mail addressed to Margret, some advertisements, some asking for donations. I got them (and the ones from the last several weeks, too) all together and called to request each organization take her name off their mailing list.

Happier thoughts:

Margret loved to get stuff in the mail with her name on it, even advertisements. (Car insurance anyone?) She had a little money she could spend any way she wanted. Over and above the little goodies she wanted for herself, she wanted to make a difference in the life of someone else, so she made small donations to charity. She had me write checks for her donations to the Cystic Fibrosis foundation, and more recently she donated to Smile Train.

Margret was born with a cleft palate, but it wasn't a complete cleft, only in the roof of her mouth; a 'submucosal cleft' meaning the place where the hard parts of the roof of her mouth didn't quite meet was covered over by the lining of her mouth. The submucosal cleft made it more difficult for her to eat well at first, but she managed. When we took her to the local cleft palate clinic, the surgeon in charge said she was doing well. She didn't need surgery, he said, because in her case, the scarring from an operation might give her more problems than she had. So Margret knew about cleft lips and cleft palates, and knew the severe ones definitely needed to be fixed.

Here's why Smile Train: Smile Train provides free surgeries to babies and children of less developed countries to repair cleft lips and cleft palates. Even better, the Smile Train surgeons teach local doctors how to do the repairs themselves. Smile Train has a small staff, and makes very efficient use of their donations.

Want to see how efficient for yourself?

Go to the Smile Train website: http://www.smiletrain.org/
and click on financials.

Supportive Family is Important

2008-10-04T17:39:00.000-04:00

Later that same day I called family from the pay phone, to let them know there was a new member of the family and tell them she had Down syndrome.

My mother's reaction was, "A defective grandchild, how sad." That pretty much ended our conversation.

My mother-in-law responded with pleasure: A girl, and healthy other than the Down syndrome. Did I know that my brother-in-law had worked at a camp for people with mental retardation?

No, I hadn't.

She put BIL on the phone and he told about some of the characters he met in the camp setting. One gentleman with DS was very childlike, in spite of his advanced age, his white beard and hair, and very much enjoyed having his beard brushed. Another had a marvelous sense of humor. Another had a very sweet disposition. I cannot remember all that he told me, but the sense of it was that these individuals were people first, with foibles much like other people. I was much reassured.

After I was off the phone, I spoke briefly with a weepy young woman. She could not fathom my joy in having a daughter with Down syndrome when she had borne a normal child and felt so unutterably sad. She didn't say so when we spoke, but she was giving her little boy up for adoption.

October Is Down Syndrome Awareness Month

2008-10-03T17:06:00.005-04:00

What can I say to promote Down Syndrome Awareness Month? Not sure, but let me try.

Back in 1970, I had no idea what Down Syndrome was. I can't think of anyone I knew then who had DS, or a sibling or family member with DS.

But then came 1971, and July, and my firstborn child. THEN I learned about Down syndrome!

The doctor who delivered her came into my room afterward, and told her dad and me that she had Down syndrome. He said she would develop like any baby, but would reach her milestones slower. He spoke of someone in his neighborhood who had DS, who was fine, and who was about his age.

Husband went away to get some sleep, and a nurse offered me a sedative.

"No thanks," I said, "I have some serious thinking to do."

I don't remember what I thought, but I remember a tumult in my mind. I did fall asleep.

The hospital pediatrician came in my room in the morning, as different from the delivering doctor as dirt is from honey. He said my daughter "probably has Down's syndrome" but they would be doing a chromosome study to make sure. He advised me to get her on the waiting list for a state institution as soon as possible, because such wait lists could be 6 years. He said she would probably not live to be two years old, but if she did, then she would almost certainly die by the time she was ten. He said she'd never learn to read or do math, or a lot of other things normal children do. He advised me not to get too attached, and he didn't want me to breastfeed.

I was shocked. . . by his suggestion that I put my baby away in what was essentially a warehouse.

I was horrified. . . by his assumption she had no value for me because she might die young.

I was angry. . . that he didn't want me to do what I thought would be best for my child. And somewhere in my mind I wanted to do him harm. Good thing there wasn't anything handy to throw at him.

I said something along the lines of, "This is MY baby. I am going to take her home and love her, and do the best I can with her."

The pediatrician said I'd be sorry.

He has been wrong, wrong, wrong and wrong again.

````

Now, please leave a comment to tell me when you learned about Down Syndrome.

Bitter Sweet Celebration

2008-10-02T02:12:00.006-04:00

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."

You Know You are The Parent...

2008-09-28T16:53:00.007-04:00

Tammy, of Praying for Parker, put up a list of how you know you are the parent of a child with special needs here

I thought I'd put the rest of my list here, since as soon as I clicked Submit Comment over there, I thought of half a dozen more things to add.

You know you are the parent of a child with special needs when:

You are pulling a sled with your one year old, your three year old and your five year old, all giggling... the five year old is in the middle with the one year old held snugly in her lap, and the three year old behind her holding on tight to make sure they don't fall off...
and a stranger walks up to you and says, What darling twins you have! And the baby is adorable!

A new doctor asks you where you took your medical studies.

At appointments where a form wants you to list the medications your child is currently taking, you have your child pull out a file card, laminated in clear packing tape, that she carries on her person at all times, and ask the receptionist, "Can you make a copy of this to attach to the form? It'll take less time, and you'll be able to read it much easier than if I copy it out longhand." And you have them copy both sides because the other side has her name, and 'current as of...' with the most recent revised date.

Your child forgets to take her purse with her to her program one day. You spent all day half hysterical because what if there was an accident, and your child was not able to tell the paramedics about her special needs and what drugs NOT to give her? You decide to sign up for Medic Alert, and the relief you feel when you clasp the bracelet around daughter's wrist is all out of proportion to that small action.

You call your doctor on a weekend, and leave a message with the answering service. Twenty minutes later your phone rings. It's one of the partners, and he says, "Tell me what's up." You list the symptoms, cough productive of green sputum, temp of 99.2F, lethargy, whinyness and say you think your child needs an antibiotic before this progresses to bronchitis. The doctor asks you what antibiotic your child responds best to, and then after you tell him, says, "I'll call it right in."

You know the phone number of your pharmacy by heart. And know the phone number of your PCP office by heart too.

You call your primary care doctor, sounding worried, and the conversation goes like this:
Me, "I don't like the way her cough sounds. She needs to be seen today, can you get her in?"
Nurse, "How soon can you get here?"
Me, "We can be there in twenty-five minutes."
Nurse, "We'll squeeze you in. See you when you get here."
*note* Our primary care doctor has Sick Call in the afternoon, to take care of people who need to be seen the same day. You have to take whatever doctor is available, but that's ok because all the doctors in the practice know your child. Sometimes Sick Call is full and you have to wait until the next day, but if it's really urgent they'll squeeze you in.

Your child lies dying, much too young, and for a moment, amidst the terrible pain of it all, you mind is filled with thankfulness that the doctors were able to help her hold on until her sisters could get here from the opposite coast, and from another state far away, so your daughters can all be together again for a little while longer.

A Website, for All of my Fans

2008-09-15T00:02:00.002-04:00

One summer, I asked daughter Margret what she wanted for her birthday. Today's title is what she replied: "I want a website, Mom, for all of my fans."

Margret has been a fan of music personages like NKotB, N'sync, Backstreet Boys and Ricky Martin. She's familiar with the celebrity web sites, and the fan message boards. And she wanted one for her fans. When first she said it, I was amused. I hadn't really considered that she had fans. The more I thought about it, the more seriously I took the idea. Making a web page for her, after all, is well within my capabilities. And, it would make her happy.

I asked her what she wanted on her web site. She wanted a picture of her, and her name, and a place where her fans could leave messages. Oh, yes, and she wanted me to explain what Eisenmenger's Syndrome is, but say it just like she was telling the story. And she wanted a page all about Down Syndrome. And pictures of her sisters and stories about them.

I managed the photograph, and the explanation of Eisenmenger's syndrome, and the guestbook for a start. She was pleased. She already had messages in the guestbook. I read them to her, and she glowed with pleasure.

We went off to see her doctor again, and she talked about her web page. The doctor told her the explanation of Eisenmenger's was very well done, clear and accurate. I admitted to the role of ghost writer for that bit, and this doctor, Dr. N, asked me if I would come and do the lecture on Eisenmenger's for her medical students. I'm fairly sure this was a compliment, and not an actual offer, so I demurred on the grounds that I didn't have any teaching credentials, and that might be a problem.

I mentioned her guestbook to several friends, and they mentioned it to other friends, and presently she had lots of messages. I read them to her, and she wanted to reply to most of them. Some of the signers had not left an email, and were one time visitors to the website, so I suggested a message board where she could have a better chance of her replies being seen.

Soon we had a conversation that went something like this:
"OK, I added a message board. Here are your messages; (and I read them to her) What would you like to say in your reply?"

"Oh, Mom, you can say anything you want," and she took herself off to take an afternoon nap.

Feeling somewhat flummoxed, I didn't make very many replies. Why didn't she want to reply for herself? Don't know. She always managed to avoid giving me an answer to that question.

I never did get to the explanation of Down Syndrome. There are plenty of websites you can find by using Google that are quite good. I hesitated a bit about the pictures of her sisters, and wondered if telling stories was a good thing. So that got put off. I've put up a little bit of biography about Margret herself, and I'm thinking of expanding it a little at a time.

Oh, yes, and Margret asked me to write a book about her, about growing up with Down Syndrome and health issues. I told her she would have plenty of time to tell all those stories herself, and arranged a little voice recorder for her to use. Somehow she never made the time to record any. I think she was too busy living new ones to bother.

Maybe someday I will write her story out. Maybe. Only maybe.

Want to see her webpage? Click here.

Pneumonia Kills - My dad

2008-09-13T20:48:00.007-04:00

My father died of pneumonia.

He was 80. He refused further treatment for myelofibrosis, a disorder of the bone marrow where stem cells, responsible for creating new blood cells, both red and white, are replaced by scar tissue. He received an infusion of packed red cells in the spring when he was diagnosed. In July, he thought he was dying. Daughter C and I hastily made arrangements to visit him.

No one had bothered to tell him that the life span of the red blood cells he'd received in the spring was four months or a little less. Since his bone marrow was not making any new red cells, what he was experiencing was the effects of rapidly falling numbers of red cells. He received another infusion, this time of whole blood. His condition improved, but he did not like the discomforts as his body dealt with the extra fluid along with the red cells this time.

We had a wonderful visit. He was in good spirits, and glad to see us, but it was subtly acknowledged this was likely our last time together. We took a number of pictures, many showing Dad in his PJs. He didn't have much energy, and refused to waste it on inconsequentials. We chatted and told stories, laughed and hugged a lot.

Dad didn't have much appetite, so he lost quite a bit of weight. His false teeth did not fit comfortably, so he had difficulty eating normal meals. Mother tried to create blended shakes with inviting flavors, without much luck. I'd acquired a trial pack of assorted flavors of nutrient powder mix, and promised to send it once I reached home. I also promised to send the little baby food grinder I'd used with my kids to introduce them to the delights of adult foods. I thought it might make his favorite meats and veggies easier to manage.

Daughter and I went back home.

The nutrient powder stuff was something he tasted once, held his nose and gulped the rest of the serving, and refused to sample any more. The little food grinder helped some, but Dad's interest in any food at all continued to dwindle.

My dad had an aversion to the idea that he might end up in the hospital, with tubing in all orifices, body kept going by machines, but no conciousness within. He preferred to die at home. He decided he would have no more treatments. He decided he would not go to the hospital, anymore, for anything. He and Mother discussed it all, and she supported him.

We talked on the phone over the next month, more, I think, than we had in the preceding year. I lent Mom what support I could from a distance.

The day my Aunt called to say Dad had been transported to the hospital by the emergency squad, I knew. I did not want to believe. I did not want to say it, but I knew my father was dead. I prepared to travel again, flew the very next day to be with my mother.

She told me about his last morning, how he had a 'bit of a cold' and was talking, at intervals, to people who were not there. He seemed fine when she checked on him before going out to the mail box to get the day's mail. He was dead when she returned.

We dealt with the funeral, and assorted necessary errands, together, mother and I. We talked about what she wanted for the end of her life. I promised to honor her wishes to the best of my ability when the time came.

We buried Dad in the family plot along with his parents and grandparents.

Hello World - Or, What am I getting myself into?

2008-09-11T22:07:00.001-04:00

Hello world!

That's the text printed by the first, simple, elementary program I ever wrote in the Pascal programming language; and my first C program did the same. It signifies a beginning.

I've been reading blogs for weeks now, after never reading blogs before. I adore all the creative and descriptive names that folks have come up with. I've been fascinated by all the stories, philosophy, entertainment, information and just plain NEAT STUFF in the blogs. One daughter has been urging me to write, for years she has been urging me, and I have been resisting. I've tried writing in a journal, and it just doesn't happen. Before today I said, a blog? Who? Me? Nah... Never happen.

Today, I came up with a title I really like: The Incredible Gift. This phrase resonates. It reverberates pleasantly in my mind; it inspires me. These words symbolize all the good things that have come to me, over the years. In addition, I think this phrase is a suitable honor for my daughter, she who touched many lives. All the good she has done, all the happy memories she left me with, every wonderful thing she leaves behind is, at least in my mind, truly an incredible gift.

So, look out, world. This is my blog, and I've just begun.