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.
Sunday, October 12, 2008
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!
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.
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:
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)
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.
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:
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
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.
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.
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