My sweetie
at school
Tuesday, 25 October 2011
Music is Healing
We spent the weekend at the Bridge School concert in Mountain View California.
The school that Pegi Young started 25 years ago.
The school that we moved to California for when Lu was turning six.
Neil and Pegi Young host a weekend of amazing music every year.
Lueza would sit on the stage behind the musicians with the kids and the families. This year it was: Eddie Vedder, Dave Matthews, Arcade Fire, Foo Fighters, Los Invisibles with Santana, Beck, Mumford & Sons, Tony Bennet, Devendra Banhart and Norah Jones with the Little Willies and always Neil Young.
It is always a love fest. The kids and the parents and the fans and the music and at the center, Neil and Pegi Young.
They honored Lu with a tribute video.
We stood on the stage with the families and watched.
No tears. Happy to see my sweetie honored but mostly numb except for the joy of the music and there was abundant joy.
Thank you Neil and Pegi Young for what you have done for all these children.
The school that Pegi Young started 25 years ago.
The school that we moved to California for when Lu was turning six.
Neil and Pegi Young host a weekend of amazing music every year.
Lueza would sit on the stage behind the musicians with the kids and the families. This year it was: Eddie Vedder, Dave Matthews, Arcade Fire, Foo Fighters, Los Invisibles with Santana, Beck, Mumford & Sons, Tony Bennet, Devendra Banhart and Norah Jones with the Little Willies and always Neil Young.
It is always a love fest. The kids and the parents and the fans and the music and at the center, Neil and Pegi Young.
They honored Lu with a tribute video.
We stood on the stage with the families and watched.
No tears. Happy to see my sweetie honored but mostly numb except for the joy of the music and there was abundant joy.
Thank you Neil and Pegi Young for what you have done for all these children.
Monday, 26 September 2011
This is my day today
Ten thousand flowers in spring, the moon in autumn,
a cool breeze in summer, snow in winter.
If your mind isn't clouded by unnecessary things,
this is the best season of your life.
by Wu-Men Hui-k'ai
1183-1260
Chinese Zen Master
translation by Stephen Mitchell
Wednesday, 21 September 2011
Tuesday, 20 September 2011
My Mind Is Too Full
Tomorrow we sell the wheelchair van.
We bought it 11 years ago when we moved to California for Lu to start at the Bridge School.
It was an adapted van. They drop the bottom somehow and take out the middle seats so your kid can ride in their wheelchair in the center of the van.
When I was driving I could put my right hand on her knees.
Or reach further back and feel her forehead when we were driving to the emergency room at Lucile Packard Children's Hospital at 11:50 p.m.
Or at 4:00 a.m. when I wasn't even driving her but was following the ambulance down the 280 to Palo Alto.
I knew it was the beginning of a new phase.
A bad aspiration pneumonia.
The beginning of living in the hospital.
Trying to keep her going.
And she always got better.
She loved the hospital.
She kept us going with her joy.
Flirting with doctors and nurses and respiratory therapists.
Making friends.
She always calmed me down.
This wheelchair van took us to Disneyland and Universal Studios.
It took us into the California desert in August with all of us and my Polish sister-in-law.
Somehow we had imagined that the nights would be cool.
Going to see the Salton Sea and running for our lives when the flies swarmed towards us.
Joshua Tree at 117 degrees.
Always running for the van.
It took Lueza to school for almost 11 years.
From Raffi's "Baby Beluga" to Rodgers and Hammerstein's "Carousel" or Sondheim's "Into The Woods"or "Pacific Overtures". Foo Fighters.
Christmas trees were always brought home on top of this van.
And the thrill of going to our first Bridge School benefit.
Watching the crowds with their tarps and backpacks as we headed to "V.I.P". parking.
Having no idea how much Lueza would love being there.
A life.
We bought it 11 years ago when we moved to California for Lu to start at the Bridge School.
It was an adapted van. They drop the bottom somehow and take out the middle seats so your kid can ride in their wheelchair in the center of the van.
When I was driving I could put my right hand on her knees.
Or reach further back and feel her forehead when we were driving to the emergency room at Lucile Packard Children's Hospital at 11:50 p.m.
Or at 4:00 a.m. when I wasn't even driving her but was following the ambulance down the 280 to Palo Alto.
I knew it was the beginning of a new phase.
A bad aspiration pneumonia.
The beginning of living in the hospital.
Trying to keep her going.
And she always got better.
She loved the hospital.
She kept us going with her joy.
Flirting with doctors and nurses and respiratory therapists.
Making friends.
She always calmed me down.
This wheelchair van took us to Disneyland and Universal Studios.
It took us into the California desert in August with all of us and my Polish sister-in-law.
Somehow we had imagined that the nights would be cool.
Going to see the Salton Sea and running for our lives when the flies swarmed towards us.
Joshua Tree at 117 degrees.
Always running for the van.
It took Lueza to school for almost 11 years.
From Raffi's "Baby Beluga" to Rodgers and Hammerstein's "Carousel" or Sondheim's "Into The Woods"or "Pacific Overtures". Foo Fighters.
Christmas trees were always brought home on top of this van.
And the thrill of going to our first Bridge School benefit.
Watching the crowds with their tarps and backpacks as we headed to "V.I.P". parking.
Having no idea how much Lueza would love being there.
A life.
Thursday, 15 September 2011
Lueza's Birthday Skating Party
Not sure.
We did many birthday parties at this outdoor skating rink in Palo Alto.
We shared the party with another family whose son was exactly Lu's age.
Both born in 1994 in October.
Both brain damaged at birth.
Classmates.
It was a great party.
All the siblings and parents could skate and wheelchairs on ice took over the place.
Wednesday, 14 September 2011
Adversity
This is another post from Barbara Gill's book Changed By A Child ~ COMPANION NOTES FOR PARENTS OF A CHILD WITH A DISABILITY.
Adversity
It is a curious circumstance that only pines in full sunlight are bitten by weevils; shaded pines are ignored. Such are the hidden uses of adversity. ~ Aldo Leopold
For a pine tree a shady location is undesirable, because pines grow best in full sunlight. But somehow shaded pines are immune from attack by weevils, which eat their candles and prevent them from growing properly. When it comes to weevils, shaded trees have an advantage.
In many ways our child's disability is an undesirable circumstance in her life and in the life of our family. But what are the "hidden uses" of this adversity? What opportunities does an adverse situation offer our family, if we can only open our eyes to the possibilities?
I have learned things about how a child grows and develops that have made me a better parent to all my children. I have been led to a new career. I have met many wonderful people and made new friends. I grew up. My children are tolerant and compassionate. I am closer to God.
As Aldo Leopold learned from his careful observation of nature, everything is connected, everything serves a purpose in the larger scheme of things.
Today, I will think about the hidden uses of life in the shade.
(Thank you to Barbara Gill, whom I don't know but has gotten me through so much with her deep wisdom and compassion)
The italics were the way this page was published in her book.
Adversity
It is a curious circumstance that only pines in full sunlight are bitten by weevils; shaded pines are ignored. Such are the hidden uses of adversity. ~ Aldo Leopold
For a pine tree a shady location is undesirable, because pines grow best in full sunlight. But somehow shaded pines are immune from attack by weevils, which eat their candles and prevent them from growing properly. When it comes to weevils, shaded trees have an advantage.
In many ways our child's disability is an undesirable circumstance in her life and in the life of our family. But what are the "hidden uses" of this adversity? What opportunities does an adverse situation offer our family, if we can only open our eyes to the possibilities?
I have learned things about how a child grows and develops that have made me a better parent to all my children. I have been led to a new career. I have met many wonderful people and made new friends. I grew up. My children are tolerant and compassionate. I am closer to God.
As Aldo Leopold learned from his careful observation of nature, everything is connected, everything serves a purpose in the larger scheme of things.
Today, I will think about the hidden uses of life in the shade.
(Thank you to Barbara Gill, whom I don't know but has gotten me through so much with her deep wisdom and compassion)
The italics were the way this page was published in her book.
Tuesday, 13 September 2011
When I Left Home
The day before we left the house Lu's room was a mess.
It was a pile of down comforters and pillows.
Nothing was folded.
Nothing was made.
My younger daughter and I had decided to sleep there one night after falling asleep to "Snow White".
A favorite movie that Lu loved.
Many people made things for Lueza.
One friend whose daughter died in 2002 made her an afghan blanket.
Our neighbor across the street, who was a pediatric nurse practitioner, made her a quilt of red and pink.
A group of hospital volunteers made her another blanket.
I made the bed with all of them.
I folded each one and put them at the foot of her futon.
I arranged the pillows and placed a birthday card from my parents and our Guadalupe icon against them.
I stood in the doorway and looked at this beautiful sanctuary.
It was a pile of down comforters and pillows.
Nothing was folded.
Nothing was made.
My younger daughter and I had decided to sleep there one night after falling asleep to "Snow White".
A favorite movie that Lu loved.
Many people made things for Lueza.
One friend whose daughter died in 2002 made her an afghan blanket.
Our neighbor across the street, who was a pediatric nurse practitioner, made her a quilt of red and pink.
A group of hospital volunteers made her another blanket.
I made the bed with all of them.
I folded each one and put them at the foot of her futon.
I arranged the pillows and placed a birthday card from my parents and our Guadalupe icon against them.
I stood in the doorway and looked at this beautiful sanctuary.
Tuesday, 30 August 2011
What is healing?
Being home with my younger daughter.
Reading our favorite books together from when she was very small. *
Buying her new clothes for school.
Buying myself new clothes.
Giving medical supplies to Lu's doctor.
Picking our apples and pears.
Drinking red wine.
Doing laundry.
Walking in this air and light.
* Miss Rumphius, Peach And Blue, The Tiger Who Came To Tea, Red Is Best
Reading our favorite books together from when she was very small. *
Buying her new clothes for school.
Buying myself new clothes.
Giving medical supplies to Lu's doctor.
Picking our apples and pears.
Drinking red wine.
Doing laundry.
Walking in this air and light.
* Miss Rumphius, Peach And Blue, The Tiger Who Came To Tea, Red Is Best
Thursday, 25 August 2011
Being Home
Talked with one of Lu's former nurses. She had heard about everything from another Mom. She had recently lost her nephew so we discussed good books about grief. Mentioned Lueza's tracheostomy supplies that were still in her bedroom and thankfully she said that they would be happy to take them all because of the medical missionary work that some of the doctors do.
Went down to 730 Welch road in Palo Alto to the clinics.
Brought my younger daughter.
Two giant bags of supplies that will end up in a very poor country.
We always had so much help.
Let the Pulmonary office know that we were there.
Much hugging. No tears.
Huge gratitude for what they did.
Don't think that I will ever get over my love for them.
I guess they're used to that.
I still need to have the "talk".
What might have happened that dawn.
How could she die so suddenly.
The day I was coming home.
Some dreadful stealthy infection.
So I'm in her room a lot.
Looking at her little polar fleece tops.
Her sweaters from last Christmas.
Tiny Uggs.
Guadalupe on the wall.
Photo of Patrick Dempsey with the computer generated fake tattoo of Lu on his arm.
The original mermaid painting by Flor Larios that I found on Etsy.
And now off to my dentist.
This life we live.
Went down to 730 Welch road in Palo Alto to the clinics.
Brought my younger daughter.
Two giant bags of supplies that will end up in a very poor country.
We always had so much help.
Let the Pulmonary office know that we were there.
Much hugging. No tears.
Huge gratitude for what they did.
Don't think that I will ever get over my love for them.
I guess they're used to that.
I still need to have the "talk".
What might have happened that dawn.
How could she die so suddenly.
The day I was coming home.
Some dreadful stealthy infection.
So I'm in her room a lot.
Looking at her little polar fleece tops.
Her sweaters from last Christmas.
Tiny Uggs.
Guadalupe on the wall.
Photo of Patrick Dempsey with the computer generated fake tattoo of Lu on his arm.
The original mermaid painting by Flor Larios that I found on Etsy.
And now off to my dentist.
This life we live.
Friday, 19 August 2011
Going Home
My 3 week leave of absence from this big wonderful traveling tour begins on Monday morning. My friends will be flying and driving to Winnipeg and I will be flying home.
It will be the first time I'm home since Lueza's death and cremation and funeral.
It just hit me last night that I'm stuffed full of anxiety and sadness in addition to the overwhelming joy at being able to see my younger daughter and husband. And dogs. Two big dogs that will trample me with love.
Lueza's room is there. Her futon. Her movies. Her music.
Blessings for her life.
It will be the first time I'm home since Lueza's death and cremation and funeral.
It just hit me last night that I'm stuffed full of anxiety and sadness in addition to the overwhelming joy at being able to see my younger daughter and husband. And dogs. Two big dogs that will trample me with love.
Lueza's room is there. Her futon. Her movies. Her music.
Blessings for her life.
Thursday, 18 August 2011
Burning Man
My daughter is going to Burning Man.
A friend emailed me that she would like to bring photographs of my daughter Lu to the Temple of Transition.
I have never been to Burning Man.
I have never heard of the Temple of Transition.
I have always wanted to go ever since I first read about it after moving to California but being that it is in the heart of the Nevada desert and seems so far-out and druggy (I know nothing about the actual experience) I haven't quite figured out how to accomplish this trek.
My friend is the opposite of far-out and druggy. She's raising children and running a business. She wears high heels and lovely lady suits. When I had one of my first hot flashes at a school function she magically appeared with a popsicle.
She is a "burner".
One who goes to Burning Man.
The Temple of Transition consists of 6 towers.
This information is the result of my Googling.
Each tower is named to honor a stage of life.
Birth, Union, Growth, Death, Decay.
The center tower is Gratitude.
I am filled with enormous gratitude to my friend Jennifer.
I wish I could be there.
Next year.
Burning Man.
A friend emailed me that she would like to bring photographs of my daughter Lu to the Temple of Transition.
I have never been to Burning Man.
I have never heard of the Temple of Transition.
I have always wanted to go ever since I first read about it after moving to California but being that it is in the heart of the Nevada desert and seems so far-out and druggy (I know nothing about the actual experience) I haven't quite figured out how to accomplish this trek.
My friend is the opposite of far-out and druggy. She's raising children and running a business. She wears high heels and lovely lady suits. When I had one of my first hot flashes at a school function she magically appeared with a popsicle.
She is a "burner".
One who goes to Burning Man.
The Temple of Transition consists of 6 towers.
This information is the result of my Googling.
Each tower is named to honor a stage of life.
Birth, Union, Growth, Death, Decay.
The center tower is Gratitude.
I am filled with enormous gratitude to my friend Jennifer.
I wish I could be there.
Next year.
Tuesday, 16 August 2011
Monday, 15 August 2011
The reading from Dietrich Bonhoeffer
When Lueza died, the Headmaster of my former school sent this to my father and we included it in the readings at Lu's service.
"Nothing can fill the gap when we are away from those we love, and it would be wrong to try and find anything. We must simply hold out and win through. That sounds very hard at first, but at the same time, it is a great consolation, since leaving the gap unfilled preserves the bonds between us. It is nonsense to say that God fills the gap; he does not fill it, but keeps it empty so that our communion with another may be kept alive, even at the cost of pain."
~Dietrich Bonhoeffer 1906-1945. Lutheran pastor and member of German resistance against Hitler~
"Nothing can fill the gap when we are away from those we love, and it would be wrong to try and find anything. We must simply hold out and win through. That sounds very hard at first, but at the same time, it is a great consolation, since leaving the gap unfilled preserves the bonds between us. It is nonsense to say that God fills the gap; he does not fill it, but keeps it empty so that our communion with another may be kept alive, even at the cost of pain."
~Dietrich Bonhoeffer 1906-1945. Lutheran pastor and member of German resistance against Hitler~
Guadalupe
Sunday, 14 August 2011
Beauty
I can see the green cotton blanket that we bought in Vermont. I can see the blue and white flannel sheet that I have no memory of where it came from. I can see my sweetie on her futon.
Wednesday, 10 August 2011
My Talk
On Monday April 11th at St. Bede's Episcopal church in Menlo Park we gathered for Lueza's funeral service. I had driven by the church so many times and because it was beautiful and close to her hospital I always thought that it would be the right place to come together and honor her life. We are very grateful to them for welcoming us and Lueza. We are grateful to our families and friends for being there and for Dora's class and many of the parents and teachers. We are grateful to Father Hinds and Chaplain Salying and Paul Ellison, Mr. Chen and Reverend Jane.
--------------------------------------------------------------------------------------
Thank you so much for being here.
We are so grateful to be able to share Lueza with our friends and family and with our extended families of St. Matthew's Episcopal Day School, the Bridge School and the Avalon Academy. We thank St. Bede's church for opening their beautiful church to us.
Lueza died very suddenly on Monday morning. She died at home. She had been very sick with respiratory illness on and off for the past 40 months but she always made it through thanks to her doctors at Lucile Packard Children's Hospital. They saved her life many times and figured out how to improve the quality of her life. Because of Dr. Robinson and the Pulmonary team she got all of this extra time with us.
We knew her life was very fragile.
We knew how much she had been through.
We knew her life would not be long.
But we are in shock.
That was the bad news.
Lueza's life was a miracle to us. She survived a massive brain injury at birth but her spirit and love were not affected.
Lueza loved life and was surrounded by people who loved her. To us she was a completely "normal" child. Her sense of humor was a bit darker than most and she loved stories about death and she flirted wildly with married men. Other than that she was a happy teenager who was passionate about movies and music and friends and roller coasters.
Lueza was joyful. She woke up every morning smiling. She loved me and Jacek and Dora. She loved her half-brother Mikolaj. She adored Janie, my best friend and cousin. She loved Vilma and Jill and Sebiha and Ann and Berna and Dr. Robinson. She was crazy for her Aunt Connie and Ciocia Jola and Bozena and Uncle Rich and Nanny and Grand Dad and Uncle John. When she met my dear friend Harry she fell in love with him on the spot because he's so handsome. And kind.
Lueza loved going to the hospital. Everybody always remembered her. When I was there to visit other friends' kids, people would stop me in the hall and point to me and say: "Lueza...right?" The hospital was our special place. Chaplain Carolyn and Sandy and Carly the pain management dog.
I knew they were all worried about Lu but she made THEM feel better because of her joy and equanimity. I googled that word this morning and it is the word for Lueza.
We moved here because of Neil and Pegi Young and the Bridge School. I discovered it "accidentally" while reading a New York Times at Einstein bagel shop across from United Cerebral Palsy pre-school. A story of sublime synchronicity.
When it was time to transition from Bridge we were ready.
When it was time to leave our local public school we were ready and the amazing Avalon Academy had been started by what we call the "Goddesses of Avalon". Annie and Kinga and Lynette. Lueza was surrounded by the finest group of teachers and aides and friends.
We are so grateful.
We have been blessed with schools.
We have been blessed with helpers.
We thank the St. Matt's moms who have taken Dora whenever we had a crisis with Lu.
We have been blessed with doctors. Dr. Buchner, Dr. Peoples, Dr. Mogul, Dr. Mark, Dr. Long, Dr. Blankenburg and Dr. Robinson
We are grateful for our life with Lueza.
The words I need to say:
Be amazed.
Be grateful for this life.
Be awake to the love that is around you.
You have all surrounded us with love and food and flowers. Thank you.
We loved Lueza for 16 and a half beautiful years.
--------------------------------------------------------------------------------------
Thank you so much for being here.
We are so grateful to be able to share Lueza with our friends and family and with our extended families of St. Matthew's Episcopal Day School, the Bridge School and the Avalon Academy. We thank St. Bede's church for opening their beautiful church to us.
Lueza died very suddenly on Monday morning. She died at home. She had been very sick with respiratory illness on and off for the past 40 months but she always made it through thanks to her doctors at Lucile Packard Children's Hospital. They saved her life many times and figured out how to improve the quality of her life. Because of Dr. Robinson and the Pulmonary team she got all of this extra time with us.
We knew her life was very fragile.
We knew how much she had been through.
We knew her life would not be long.
But we are in shock.
That was the bad news.
Lueza's life was a miracle to us. She survived a massive brain injury at birth but her spirit and love were not affected.
Lueza loved life and was surrounded by people who loved her. To us she was a completely "normal" child. Her sense of humor was a bit darker than most and she loved stories about death and she flirted wildly with married men. Other than that she was a happy teenager who was passionate about movies and music and friends and roller coasters.
Lueza was joyful. She woke up every morning smiling. She loved me and Jacek and Dora. She loved her half-brother Mikolaj. She adored Janie, my best friend and cousin. She loved Vilma and Jill and Sebiha and Ann and Berna and Dr. Robinson. She was crazy for her Aunt Connie and Ciocia Jola and Bozena and Uncle Rich and Nanny and Grand Dad and Uncle John. When she met my dear friend Harry she fell in love with him on the spot because he's so handsome. And kind.
Lueza loved going to the hospital. Everybody always remembered her. When I was there to visit other friends' kids, people would stop me in the hall and point to me and say: "Lueza...right?" The hospital was our special place. Chaplain Carolyn and Sandy and Carly the pain management dog.
I knew they were all worried about Lu but she made THEM feel better because of her joy and equanimity. I googled that word this morning and it is the word for Lueza.
We moved here because of Neil and Pegi Young and the Bridge School. I discovered it "accidentally" while reading a New York Times at Einstein bagel shop across from United Cerebral Palsy pre-school. A story of sublime synchronicity.
When it was time to transition from Bridge we were ready.
When it was time to leave our local public school we were ready and the amazing Avalon Academy had been started by what we call the "Goddesses of Avalon". Annie and Kinga and Lynette. Lueza was surrounded by the finest group of teachers and aides and friends.
We are so grateful.
We have been blessed with schools.
We have been blessed with helpers.
We thank the St. Matt's moms who have taken Dora whenever we had a crisis with Lu.
We have been blessed with doctors. Dr. Buchner, Dr. Peoples, Dr. Mogul, Dr. Mark, Dr. Long, Dr. Blankenburg and Dr. Robinson
We are grateful for our life with Lueza.
The words I need to say:
Be amazed.
Be grateful for this life.
Be awake to the love that is around you.
You have all surrounded us with love and food and flowers. Thank you.
We loved Lueza for 16 and a half beautiful years.
Tuesday, 9 August 2011
Glimpse After Glimpse by Sogyal Rinpoche copyright 1995
His entry for August 22
Bereavement can force you to look at your life directly, compelling you to find a purpose in it where there may not have been one before. When suddenly you find yourself alone after the death of someone you love, it can feel as if you are being given a new life and are being asked: "What will you do with this life? And why do you wish to continue living?"
My heartfelt advice to those in the depths of grief and despair after losing someone they dearly loved is to pray for help and strength and grace. Pray that you will survive and discover the richest possible meaning to the new life you now find yourself in. Be vulnerable and receptive, be courageous and patient. Above all, look into your life to find ways of sharing your love more deeply with others now.
by Sogyal Rinpoche
Bereavement can force you to look at your life directly, compelling you to find a purpose in it where there may not have been one before. When suddenly you find yourself alone after the death of someone you love, it can feel as if you are being given a new life and are being asked: "What will you do with this life? And why do you wish to continue living?"
My heartfelt advice to those in the depths of grief and despair after losing someone they dearly loved is to pray for help and strength and grace. Pray that you will survive and discover the richest possible meaning to the new life you now find yourself in. Be vulnerable and receptive, be courageous and patient. Above all, look into your life to find ways of sharing your love more deeply with others now.
by Sogyal Rinpoche
Grace
When Lueza had recovered from her first long illness (aspiration pneumonia) at Lucile Packard Children's Hospital I took her for a visit to her regular Pediatrician who had followed the medical story through computer records and knew what she was going through.
I was feeling triumphant for my daughter. She had gotten a feeding tube which would help protect her lungs from unwanted food and liquids. Micro aspirations were occurring and we had feared that but the information hadn't been clear until that long hospital stay. There was nothing grotesque about a feeding tube. It was like a little beach ball closure and we quickly learned how to attach the tiny tube and feed her and give her medications. No more clenched jaws and screaming during medication time. She had also been started on a neurological medication that helped to relax her back and her extreme dystonia. I called it twisting and it had something to do with her brain damage. Basal Ganglia. In utero strokes at birth.
So here we were. Just checking in. A quick visit.
"You really need to think about end of life issues".
I looked at him calmly and said that I do. I've been thinking and worrying about them for seven years.
He said that she's "on borrowed time". We need to think about the end so that we can avoid a horrendous and invasive medical nightmare.
I didn't blame him for his bluntness. I didn't shun him. He had been such a great doctor with her and I know that bedside manner doesn't always come with that.
We finished and I needed to get my sweetie home.
I loaded her into her wheelchair van with a crumpling mouth and crushed heart.
I held her knee, which I could reach while driving.
She seemed fine.
Even with me doing the quiet weep she seemed herself.
The stories of her friends' deaths never made her cry or even seem upset. She just needed to hear the stories over and over.
My way was to always think about "end of life" issues.
I had discovered a website called lifeexpectancy.org and I would spend hours trying to decipher the material about kids like Lueza and how their lives were affected in terms of longevity.
I even wrote the statistician who had started the website and was one of the leading experts in life expectancy and brain damage and he would write me back and suggest articles for me to read.
I didn't want any surprises.
Maybe I could prolong her life with constant worrying.
At the least, I wouldn't be surprised.
Because of her inability to hold up her head or move or use her hands or speak or sit or roll she was in the worst category in terms of longevity.
Some kids in wheelchairs have normal lifespans because they can sit and it all goes on and on. They can chew. They can swallow and it goes into their esophagus and nothing slips into the lungs.
They can be fine.
Lueza was fine.
She was joyful.
She loved life.
We knew that every day with her was perfection.
A state of grace.
End of post.
I was feeling triumphant for my daughter. She had gotten a feeding tube which would help protect her lungs from unwanted food and liquids. Micro aspirations were occurring and we had feared that but the information hadn't been clear until that long hospital stay. There was nothing grotesque about a feeding tube. It was like a little beach ball closure and we quickly learned how to attach the tiny tube and feed her and give her medications. No more clenched jaws and screaming during medication time. She had also been started on a neurological medication that helped to relax her back and her extreme dystonia. I called it twisting and it had something to do with her brain damage. Basal Ganglia. In utero strokes at birth.
So here we were. Just checking in. A quick visit.
"You really need to think about end of life issues".
I looked at him calmly and said that I do. I've been thinking and worrying about them for seven years.
He said that she's "on borrowed time". We need to think about the end so that we can avoid a horrendous and invasive medical nightmare.
I didn't blame him for his bluntness. I didn't shun him. He had been such a great doctor with her and I know that bedside manner doesn't always come with that.
We finished and I needed to get my sweetie home.
I loaded her into her wheelchair van with a crumpling mouth and crushed heart.
I held her knee, which I could reach while driving.
She seemed fine.
Even with me doing the quiet weep she seemed herself.
The stories of her friends' deaths never made her cry or even seem upset. She just needed to hear the stories over and over.
My way was to always think about "end of life" issues.
I had discovered a website called lifeexpectancy.org and I would spend hours trying to decipher the material about kids like Lueza and how their lives were affected in terms of longevity.
I even wrote the statistician who had started the website and was one of the leading experts in life expectancy and brain damage and he would write me back and suggest articles for me to read.
I didn't want any surprises.
Maybe I could prolong her life with constant worrying.
At the least, I wouldn't be surprised.
Because of her inability to hold up her head or move or use her hands or speak or sit or roll she was in the worst category in terms of longevity.
Some kids in wheelchairs have normal lifespans because they can sit and it all goes on and on. They can chew. They can swallow and it goes into their esophagus and nothing slips into the lungs.
They can be fine.
Lueza was fine.
She was joyful.
She loved life.
We knew that every day with her was perfection.
A state of grace.
End of post.
Monday, 8 August 2011
Healing After Loss: Daily Meditations for Working Through Grief by Martha Whitmore Hickman
I found this book while on tour in Spokane, Washington.
Martha's daughter died suddenly at 16 after falling from a horse while on a family vacation in Colorado.
Here is the entry for January 22~
It is over shaky ground--this journey between the relationship we had when the person was alive and the relationship we come to have with the dead. We don't know what to expect, don't even know what we're looking for. Are we fooling ourselves, conjuring up the possibility that we can have a relationship with someone who's died?
Perhaps it is a little like a first-time parent who, anxious that something may go wrong, has to keep going back and checking on the baby. Is the baby all right? Still breathing? Still peacefully sleeping?
After a while the parent becomes more confident. The baby really is there, and safe, but as with other miracles, this miracle of birth takes getting used to. Perhaps in like manner comes the slowly dawning confidence that in the mystery of living, it is possible to have an ongoing relationship with the dead.
I will open my heart in trust that, in ways I do not now understand, my loved one will continue to be present in my life.
by Martha Whitmore Hickman
Martha's daughter died suddenly at 16 after falling from a horse while on a family vacation in Colorado.
Here is the entry for January 22~
It is over shaky ground--this journey between the relationship we had when the person was alive and the relationship we come to have with the dead. We don't know what to expect, don't even know what we're looking for. Are we fooling ourselves, conjuring up the possibility that we can have a relationship with someone who's died?
Perhaps it is a little like a first-time parent who, anxious that something may go wrong, has to keep going back and checking on the baby. Is the baby all right? Still breathing? Still peacefully sleeping?
After a while the parent becomes more confident. The baby really is there, and safe, but as with other miracles, this miracle of birth takes getting used to. Perhaps in like manner comes the slowly dawning confidence that in the mystery of living, it is possible to have an ongoing relationship with the dead.
I will open my heart in trust that, in ways I do not now understand, my loved one will continue to be present in my life.
by Martha Whitmore Hickman
Saturday, 6 August 2011
Changed By A Child: Companion Notes For Parents Of A Child With A Disability by Barbara Gill
I discovered this book in a Barnes and Noble on the upper West side when I was still living in New York City. It is a profound guide. It always sat on my bedside table and once when Lueza spent many weeks in the hospital I ordered about 15 of them to give to all of her doctors.
Here is page 24.
Story
All sorrows can be borne if you put them into a story or tell a story about them. ~Isak Dinesen
You hear the sound of your voice explaining what has happened, describing the events in painstaking chronological detail. The person listening wants you to jump to the end. In his tensed body you can hear the questions: So what happened? What's the point? But you need to lay it all out, to say, Well, first his blood pressure was high, but the doctor said not to worry. And then we noticed he was sweating a lot and drinking all the time. He seemed to eat constantly, but he was very thin. By now it was September. I made an appointment for a physical and we couldn't get in until October. October 12. I remember because it was Columbus Day. And then...
You need to hear your story out loud so that you can make sense of what has happened and what is going on now. You are like a spider, your words the filaments of sound, lines you are spinning to attach the web of your experience to a corner of the world. In this way you connect the thin gauze of this new, incomprehensible event to the solid wall of what your life has been until now. In this way, telling your story heals you.
(written by Barbara Gill)
Here is page 24.
Story
All sorrows can be borne if you put them into a story or tell a story about them. ~Isak Dinesen
You hear the sound of your voice explaining what has happened, describing the events in painstaking chronological detail. The person listening wants you to jump to the end. In his tensed body you can hear the questions: So what happened? What's the point? But you need to lay it all out, to say, Well, first his blood pressure was high, but the doctor said not to worry. And then we noticed he was sweating a lot and drinking all the time. He seemed to eat constantly, but he was very thin. By now it was September. I made an appointment for a physical and we couldn't get in until October. October 12. I remember because it was Columbus Day. And then...
You need to hear your story out loud so that you can make sense of what has happened and what is going on now. You are like a spider, your words the filaments of sound, lines you are spinning to attach the web of your experience to a corner of the world. In this way you connect the thin gauze of this new, incomprehensible event to the solid wall of what your life has been until now. In this way, telling your story heals you.
(written by Barbara Gill)
Friday, 5 August 2011
Sanctuary
Most of the time I do not feel any emotions about what has happened. I work in my show. I feel grateful. I read my Jane Austen book. But today it just hit me again as it does sometimes. And I am brought low. I miss my daughter. I miss my other daughter. Too much.
I am in northern Canada wondering what my life will be when I get home in the winter.
It is the feeling that took me into that church in Eugene, Oregon.
Lighting candles.
And the church ladies seeing my face and asking if I wanted to speak with the priest.
I was so amazed.
Yes. I wanted to speak with the priest.
And she sat with me in a pew and we just talked.
She spoke of her teacher in Divinity school who had lost his severely disabled son at a young age.
She remembered his grief.
She told me that most days emotions flow quietly and we can be okay and that sometimes it stops and we are overwhelmed.
We must stop.
That is how I found her.
A young Episcopal priest who just moved across the country to this small church.
And me on tour in Eugene weeks after my daughter died.
She comforted me.
She gave me succor.
Life can be so sweet.
I am in northern Canada wondering what my life will be when I get home in the winter.
It is the feeling that took me into that church in Eugene, Oregon.
Lighting candles.
And the church ladies seeing my face and asking if I wanted to speak with the priest.
I was so amazed.
Yes. I wanted to speak with the priest.
And she sat with me in a pew and we just talked.
She spoke of her teacher in Divinity school who had lost his severely disabled son at a young age.
She remembered his grief.
She told me that most days emotions flow quietly and we can be okay and that sometimes it stops and we are overwhelmed.
We must stop.
That is how I found her.
A young Episcopal priest who just moved across the country to this small church.
And me on tour in Eugene weeks after my daughter died.
She comforted me.
She gave me succor.
Life can be so sweet.
Tuesday, 2 August 2011
Tuesday, 19 July 2011
Dream
I have been begging my subconscious to please let me dream about Lueza. I would like to stop having anxiety dreams about losing phones or getting lost in strange cities and I would very much like to spend some time with my daughter in my dreams.
The first dream was hard to remember but had something to do with suctioning out her "trach" and all the virulent looking fluid that poured out into the suction catheter.
About 5 days later I dreamed that I was cleaning and cutting her nails with my nails and I accidentally tore off a little piece of her skin on a finger and made her sob. There was blood. And extreme guilt.
The first dream was hard to remember but had something to do with suctioning out her "trach" and all the virulent looking fluid that poured out into the suction catheter.
About 5 days later I dreamed that I was cleaning and cutting her nails with my nails and I accidentally tore off a little piece of her skin on a finger and made her sob. There was blood. And extreme guilt.
Friday, 15 July 2011
Eugene
The first city that I started back at work with the tour was Eugene, Oregon. A gentle place. Quiet streets with overgrown lawns of new spring flowers. Signs for psychotherapy and massage and bodywork. Woke up one day with a heavy load of grief in my chest. A strong physical sensation of despair.
Walking seemed to be the way to go. Get out of the hotel room. As I was heading back on a different street I had one thought: I must find an Episcopal church. I'm not a religious person in most ways but it was important to me that my daughter have an Episcopal service and when she lay on her futon where she had died I called the Episcopal minister from my other daughter's school to please come and read prayers around her. Lueza had loved prayers during 2010 and I had always taken the little icon of our Lady of Guadalupe and hung it on her IV pole whenever she was in the hospital. I am obsessed with all things Catholic. Rosaries and religious medals of saints and images of the Virgin Mary. The idea of ritual. Amulets. Beauty.
The priest gathered the five of us around Lueza's bed and we read prayers.
So I'm walking on this street in Eugene thinking I must google Episcopal churches. And of course the next block it appears. I need to ring a bell. There are ladies at a little desk in the hall. They show me where the entrance is. In the front right side is a place for candle lighting. This is what I needed. Hanging over the rows of votive candles is an image of Our lady of Guadalupe. I stuff some dollars into the slot, light my candle and sit in a pew and weep. When I've stopped and it is silent I hear: Christ is dead. Spoken by a man in the back of the church. At first I think maybe it's a kook and then I realize that it is Good Friday and it is the hour when this is spoken by the priest.
I feel peaceful again and go back to my room to google the rituals of Good Friday and the speaking of these words.
Later that day I get an email from a friend who also lost her disabled son very suddenly and she said that she had lit candles for Evan and Lueza in Los Angeles.
Walking seemed to be the way to go. Get out of the hotel room. As I was heading back on a different street I had one thought: I must find an Episcopal church. I'm not a religious person in most ways but it was important to me that my daughter have an Episcopal service and when she lay on her futon where she had died I called the Episcopal minister from my other daughter's school to please come and read prayers around her. Lueza had loved prayers during 2010 and I had always taken the little icon of our Lady of Guadalupe and hung it on her IV pole whenever she was in the hospital. I am obsessed with all things Catholic. Rosaries and religious medals of saints and images of the Virgin Mary. The idea of ritual. Amulets. Beauty.
The priest gathered the five of us around Lueza's bed and we read prayers.
So I'm walking on this street in Eugene thinking I must google Episcopal churches. And of course the next block it appears. I need to ring a bell. There are ladies at a little desk in the hall. They show me where the entrance is. In the front right side is a place for candle lighting. This is what I needed. Hanging over the rows of votive candles is an image of Our lady of Guadalupe. I stuff some dollars into the slot, light my candle and sit in a pew and weep. When I've stopped and it is silent I hear: Christ is dead. Spoken by a man in the back of the church. At first I think maybe it's a kook and then I realize that it is Good Friday and it is the hour when this is spoken by the priest.
I feel peaceful again and go back to my room to google the rituals of Good Friday and the speaking of these words.
Later that day I get an email from a friend who also lost her disabled son very suddenly and she said that she had lit candles for Evan and Lueza in Los Angeles.
Wednesday, 13 July 2011
Another Gift
One of my closest friends sent me a poem that she wrote for Lueza when she got the news. I read it during the funeral service.
Dream Side
Lueza runs
because she's given me miles to walk.
She swims
in the space joy holds
when it's Christmas
and sings in the solitude
of a leaf among trees.
She dances in circles
around a place in the heart
where humor is born
and love is awakened.
It's a space she owns,
between knowing eyes,
a laughing heart,
and trusting arms.
Her eyes search out good company.
Her smile shares recognition
of what it takes
to hold the universe
in the cup of one's hand.
Her thoughts
discuss human paradigms
on the dream side.
Where true understanding lies.
Where seekers worn out feet
yearn to arrive,
experiencing the sacredness
of time,
struggling to leave uncertainties behind.
She wishes them well.
Dream Side
Lueza runs
because she's given me miles to walk.
She swims
in the space joy holds
when it's Christmas
and sings in the solitude
of a leaf among trees.
She dances in circles
around a place in the heart
where humor is born
and love is awakened.
It's a space she owns,
between knowing eyes,
a laughing heart,
and trusting arms.
Her eyes search out good company.
Her smile shares recognition
of what it takes
to hold the universe
in the cup of one's hand.
Her thoughts
discuss human paradigms
on the dream side.
Where true understanding lies.
Where seekers worn out feet
yearn to arrive,
experiencing the sacredness
of time,
struggling to leave uncertainties behind.
She wishes them well.
Sunday, 10 July 2011
Thank you cards for our sympathy letters and notes
I googled the etiquette people.
No way out.
You must write everyone back.
I came up with a compromise.
I had a card printed up that would communicate the body of our feelings. And then I wrote something on each one.
It was a labor of love.
We had been overwhelmed with kindness.
Extremely grateful to work on this "project".
Sunday, 3 July 2011
Letter from my niece
On Monday my mom and I built a little altar made out of colored stones at the heart of Miraval's labyrinth. These pebbles joined dozens of other carefully piled stupas left by other pilgrims as a visible marker of their personal prayers. We dedicated the altar to Lueza. In a moment of silence, we visualized her spirit playing happily among the lapiz, rose quartz, jasper and pale green aventurine. As we walked the labyrinth, a monarch butterfly circled the center and danced among the pebbles.
There is no way to follow the path out of the labyrinth without encountering sharp turns when you least expect it. The truth is, we are still in shock and cannot begin to imagine the emotions that you as a family, mother, father, and sister are going through.
That night my mom had a dream. She saw a girl with brown hair, face covered with her hands, her back towards other children receding in the distance. "Ready!" she calls, running after the other kids. As she takes her hands away from her face, she is all smiles and laughter.
When my mom woke up, she realized that the girl was little Lueza, whole in body and heart.
Please know that we are with you in prayer and love in these challenging times.
(This letter became part of our funeral service for Lu)
There is no way to follow the path out of the labyrinth without encountering sharp turns when you least expect it. The truth is, we are still in shock and cannot begin to imagine the emotions that you as a family, mother, father, and sister are going through.
That night my mom had a dream. She saw a girl with brown hair, face covered with her hands, her back towards other children receding in the distance. "Ready!" she calls, running after the other kids. As she takes her hands away from her face, she is all smiles and laughter.
When my mom woke up, she realized that the girl was little Lueza, whole in body and heart.
Please know that we are with you in prayer and love in these challenging times.
(This letter became part of our funeral service for Lu)
Saturday, 2 July 2011
Friday, 1 July 2011
No Idea
After taking two weeks off from work I spoke with my husband and daughter and told them that I needed to let my job know what I was planning to do. They were getting by with two different understudies but would need to hire somebody to replace me if I decided to take a longer leave of absence. My 14 year old daughter was the first to answer: Go back to work Mommy. It'll be good for you. My husband continued: Go back Mommy. What are you going to do here?
There was a lot I could do there. I could be at home with my family. I could be in my sweetie's empty room and grieve and weep or whatever I was supposed to do. I could spend time with my other daughter who was about to finish 8th grade after 10 years at the same school.
I left.
I took their advice and went back to work. I had no idea what I should do. I had no idea if I could walk and talk on the stage or if I would tip over. I had terrible stage fright at certain times and didn't know if it would come back and get me.
I went back "on the road". Like a circus person.
I could work and I could be alone.
I could wander around cities.
I could light candles in churches.
I could ruminate.
I escaped.
There was a lot I could do there. I could be at home with my family. I could be in my sweetie's empty room and grieve and weep or whatever I was supposed to do. I could spend time with my other daughter who was about to finish 8th grade after 10 years at the same school.
I left.
I took their advice and went back to work. I had no idea what I should do. I had no idea if I could walk and talk on the stage or if I would tip over. I had terrible stage fright at certain times and didn't know if it would come back and get me.
I went back "on the road". Like a circus person.
I could work and I could be alone.
I could wander around cities.
I could light candles in churches.
I could ruminate.
I escaped.
Wednesday, 29 June 2011
Happy child
Tuesday, 28 June 2011
My daughter's Facebook account
When we arrived at the lakeside lodge in British Columbia last night we connected our phones through the wireless service and there was a message from my daughter's Facebook account. It was linked to me so that I could navigate it for her. Mostly they used it at school. Mostly it wasn't used. But it is still there in cyberspace and they wanted to let her know that she has been away for awhile and they welcome her back. She also has friends waiting to be accepted. What do I do with my daughter's Facebook? The word shrine comes to mind.
Sunday, 26 June 2011
Me and my husband
We are alone together for the first time since our daughter died. I have been traveling with a theatre tour and he has been at home with our other daughter. We spoke about everything that happened the night she died. The particulars. The doctors said not to bring her to the ER. There were too many sick children and our daughter was too vulnerable and everyone knows how long you stay in the ER before going up to a room. They said to bring her to the clinics in the morning. She would see her Gastroenterologist and her Pulmonary doctors. It would be preferable. Nobody knew.
Saturday, 25 June 2011
In the beginning
My beloved daughter Lueza died on April 4, 2011. She was born on October 2, 1994. Her brain was injured during her birth. It was the birth from hell. Broke my water with a long hook. Pitocin. Epidural. On oxygen lying on my left side. And then something went horribly wrong and she was wrenched out by forceps barely alive. Emergency team from NICU was called at some point and they intubated her and took her away. My husband and I were left alone in a bloody room. A fancy private hospital on 5th Avenue in New York City.
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