My sweetie

My sweetie
at school

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

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.

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.

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.

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~


Every time we went to the hospital we would bring our little icon of the Virgin of Guadalupe. I had found her in one of the California mission towns that I had visited with Lueza. I can't explain it. I am not Catholic. I am half Jewish and half Episcopalian. But I love rosaries and prayer beads. I love icons. We would bring "Guadalupe" in the hospital bag. Mommy's computer and charger, Lu's DVD's, my pillow, pajamas, book, creams and lotions, diapers, phone and Guadalupe. We would hang her from the metal pole that gave IV fluids, antibiotics and liquid feedings. It was our way of controlling this anonymous hospital space. We needed ritual of some sort. She brought her beauty and gentleness into Lueza's room.

Sunday, 14 August 2011


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.

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


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 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

Saturday, 6 August 2011

Quan Yin


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.

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


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.