She Is Their Sister

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

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

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

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

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

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

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

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

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

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

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

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

Prophetic? Nah, just vivid and unforgettable.

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

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

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

Valentine's Day was Very Sad This Year

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

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

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

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

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

A Little Lovin

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.

Battling Demons in my Mind

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

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

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

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

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

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

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

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

My Sister Is Having My Baby

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.

Margret's Kids

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

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.