Friday, October 31, 2008

I Made It Myself

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.

Thursday, October 30, 2008

Fearless DUKW Driver

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.

Wednesday, October 29, 2008

Margret's Crafty Mama - Earrings

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.

Tuesday, October 28, 2008

Darling New Baby Girl and Mom Need Some Help

I made an Edit to remove links because the post about baby Claire is gone from the other end of the link. I don't know how baby Claire is today because I didn't keep checking the links over the years.  It made me to emotional to go back and read again...   But my point that sending cards can put a little extra "bright" in someone's day when they are most in need of it is still valid.  If you know someone who needs a card, send one, or someone who needs a phone call, pick up the phone and dial. The amount of effort you are giving is worth ten times that (at least) to the person on the other end.

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!

Monday, October 27, 2008

A Vignette by an internet friend and poet

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.

Sunday, October 26, 2008

Margret feet with Bunny

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.

Saturday, October 25, 2008

More Time. Better Time.

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.

Friday, October 24, 2008

Somebody Loves Me, and a little philosophy

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.

Thursday, October 23, 2008

Happy Girl

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

Wednesday, October 22, 2008

Early Intervention

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.

Tuesday, October 21, 2008

And a Little Child Shall...

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."

Monday, October 20, 2008

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.

Sunday, October 19, 2008

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.

Saturday, October 18, 2008

Laundry, Then and Now

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.

Friday, October 17, 2008

Not Much Money? Make Do

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.

Thursday, October 16, 2008

A Lot of Hope

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.

Wednesday, October 15, 2008

A Little Logic

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.

Tuesday, October 14, 2008

Margret and her sisters

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.

Monday, October 13, 2008

A Working Guardian Angel

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.

Sunday, October 12, 2008

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.

Saturday, October 11, 2008

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.

Friday, October 10, 2008

How Hard Can it Be?

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

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

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

Here is Margret's obituary, slightly abbreviated:

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

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

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

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

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

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

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

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

Thursday, October 9, 2008

Margret and Frank Sinatra

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)

Wednesday, October 8, 2008

The Mask and the Terror

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.

Tuesday, October 7, 2008

Time to Remember and Give Thanks

Husband and I went to a memorial service in September for parents/families of children who died. Held in the auditorium at the hospital, it was beautiful, moving, and I cried lots. The registration table held many many individual packs of tissues as well as the registration materials. These people were ready for me.

The program artwork featured butterflies and dragonflies, with a poem on the inner cover that set me sobbing just reading it through:
Like the butterfly who lights beside us
like a sunbeam -
for a brief moment
its glory and beauty
belong to our world -
but then it flies on again.

And though we wish it could have stayed
we are so thankful to have seen it.

There was music played by hospital staff - cello, violin, keyboard and 2 voices - doctor, security guard, and 3 music therapists, more music - by Hugworks, Jim Newton and Paul G. Hill, a welcome by the bereavement coordinator, a Call to Remember, read by a chaplain, "I Believe" performed by Hugworks, a physician's tribute read by one of the doctors, "I Know Your Names"

Then the remembrance, where a staff person read names while pictures were projected on the screen at the front. The names were in groups of 10. The photos showed the children... the smallest a tiny tiny premie whose hand was maybe the size of a quarter, fingers wrapped around his daddy's index finger, the oldest my Margret.

My husband sat next to me, but on my other side, I sat next to a girl of about 7 or 8 years. She had been sitting with her Grammy and Mom in the row behind, but moved forward a row to sit next to her cousin. Her baby brother was among the lost. When his name was read, both she and her mother screamed and cried aloud. I patted her back, and gave her a tissue. When tears ran freely down my cheeks at my daughter's photo and name, she patted my knee and whispered to me, "Don't cry, you'll be OK."

After the names came a reading of "We Remember Them", from Gates of Prayer, "If I Could" performed by Hugworks, a reading of "Waterbugs and Dragonflies" a story of metamorphosis

Afterwards, there were helium filled butterfly balloons, was space where the parents could get together and talk, and have coffee and snacks. I chatted with the mothers of two young ladies who died of cancer, ages 22 and 23.

I tried to write about the memorial before, and kept dissolving into tears. It didn't help me that husband found the particular arrangement of Over the Rainbow/Wonderful world medley that they did - it's on youtube, by Israel Kamakawiwo'Ole - and played it multiple times. (probably because there are many versions of it on youtube) It's beautiful, but it makes me cry. Here are a couple versions...

http://youtube.com/watch?v=PL-uL2M3xvM

http://youtube.com/watch?v=Hh2vre3YwM4

Monday, October 6, 2008

Fixing smiles

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.

Saturday, October 4, 2008

Supportive Family is Important

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.

Friday, October 3, 2008

October Is Down Syndrome Awareness Month

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.

Thursday, October 2, 2008

Bitter Sweet Celebration

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

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

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

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

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

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

F speaks on Margret

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

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

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

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

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

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

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

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

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