My sweetie

My sweetie
at school

Monday, 26 September 2011

Nature heals too

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
Chinese Zen Master
translation by Stephen Mitchell 

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.

Thursday, 15 September 2011

Lueza's Birthday Skating Party

This was probably in 2007.
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.
It was a great party.
All the siblings and parents could skate and wheelchairs on ice took over the place.

Wednesday, 14 September 2011


This is another post from Barbara Gill's book Changed By A Child ~ COMPANION NOTES FOR PARENTS OF A CHILD WITH A DISABILITY.


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.