Monday, June 23, 2008


I just woke up from dreams...

I was going to school, and one of my professors was a famous play write. In my dream he had two books which were very old and in them were the lives of all the people who ever lived. It was his job to plan, write, orchestrate, and keep track of all the stories that unfolded.

He was a man of great ego and he was constantly frustrated that things didn't go the way he planned them to go.

He was old but not sad old, he was like Sean O'Connery in first night, noble old and I was madly in love with him. In my dream I had been having a very long love affair with him.

He broke my heart and I was sad, so sad that my ears hurt. My sister drove me to the doctor and this doctor showed me a computer screen where the the human bodies biology was broken down to mechanics. It was like the inside of a clock. She showed me my throat and my ears.

Somehow I was defective but fine. I asked her if that was the way the body really worked or was this moving picture I was looking at simplified so that people could better understand how they operated internally. She laughed and said that it was a doctors secret.

When I got home Aly and Steve were in the kitchen cooking. They were both mad at me. They didn't seem worried that I was at the hospital and they did not ask how I was. They both started in on how I was flawed, they were angry at me because I was not at home doing what they thought I should be doing.

I imagined the mechanics of my inner ear and my throat and I slowed them down until the wheels stopped turning. I then remembered a lecture I had been to long before and it played in my mind in place of the sound of Steve and Aly.

The lecture was the first I had gone to where this handsome professor was teaching. He pointed me out in a crowd of students and said, "Now look at this woman, she is split in half, right down the middle, see how she tries to hold those two halves together, she is so afraid to let them separate, as if she will leak out".

I just sat there listening and instead of feeling embarrassed I felt defiant, I was daring him with my thoughts to find something to say that would change the way I felt.

He continued speaking very quietly. Even though the room was big and there were many people, his voice was very clearly heard. He walked closer to me, or floated or projected I can't remember then he said softly "What she does not know is that it was meant for these two halves to fall away so that she could be revealed" Then he looked directly at me and said with his words that came from his mind not his mouth, "can't you see the light trying to release itself?"

I looked at myself from far away and I looked like someone trying to hold a coat together on a windy day and light was shining through my seams, still I held myself together as best I could, I knew that one day the light would win, but not today.

When I woke from this dream I discarded it and it began to fade. I logged onto the computer to work before Noah woke up. I was searching for my files when a photo of Stevie caught my eye. It was taken in the Dominican several years ago. She is holding up the "treasure" It was the insides of a plastic treasure box that Noah had just bought, it came with his new Peter Pan action figure.

I could not ignore the photo so I opened the file. The next photo that came up was one of Stevie and I on the beach. Before the trip we talked about lounging on the beach drinking from fruit. We needed this break from treatment, hospitals, and fear. This day on the beach was like a dream.

I enlarged the photo just to look at her and realized that even though we are both sitting in the same place, in the same conditions, she is lit up and I am not.

In my heart I knew that she had always been lit up.

She never had to break apart, she never had hold her pieces together her light was too strong. I was always able to see her so clear, so bright, all of her.

I think she is telling me to stop trying to hold myself together, to let go of my pain, my old beliefs, and stop listening to all the old words.

I decided to write it all down and save the photo.

I know this is an important message but it is so big that I may have to revisit this post over and over before I learn what it really means.

Thursday, June 19, 2008

Full moons and Ravioli

The Summer moon was incredible. Noah and I went for a long, long walk up to the dog park then up the first hill to watch the moon rise.

It was so big and orange and the sky was dark and full of stars. I felt like someone had picked me up and dropped me someplace new, everything looked different from up there, I wanted to jump into the sky and swim to you.

Noah and finally walked back home at almost ten in the evening. He was pretty happy to have had an adventure with me. I was pretty happy to be holding his hand under that big moon. I wanted more than anything for you to be with us. We would have stopped and had a late desert at the Skillet and called Dad to come and pick us up so we wouldn't have to walk home with bellies full of sugar.

It is so hot here now, not sure you would like it. If you were here I would buy a hammock and put it under the apricot tree. I would buy a bunch of pillows and a little table to set a pitcher of ice tea and a pile of books on.

Noah has the summer blues already, he thought that we would be having parties and camping every night. Instead we swim, make silly puppets and run errands. There will be parties and camping and even a boat trip but I am not sure how that is going to happen.

I feel so sad and heavy thinking about doing them without you.

I was talking to my mother the other day and she was off in her own reality as usual and she said some pretty stupid things, not a surprise, I wasn't even angry. I guess the thing that bothers me most is that people who have not lost a child do not understand that when you do you family is broken, it is always missing someone. It is hard to find a new normal when you feel so incomplete and sad.

Dad is doing OK. He has this thing in him that protects him from the hardest parts of life. It is a survival mechanism he was born with that has served him well. Dad lost two parents, a brother two nephews and a niece and his grandmother and various other relatives. His family was not built for longevity.

He also had a hard life, he could have easily absorbed that and not become the person he is now but he was able to move past it and move forward. He does not hold carry anger and sadness very long. He lives in the moment.

It makes me so angry. I am the opposite, I hold onto everything, I am an emotional pack-rat.
I keep journals, write in blogs, and have a secret hiding place for stories in my heart. I had a pretty difficult life myself and instead of letting it all go I pile it high and used it as a place to see the rest of my life from.

I have some incredible memories, things that might seem silly to anyone else but mean everything to me. Everyone collects something, I collect stories.

I am thinking of the night Noah and I went out to the hot tub at the beginning of winter and the tree's were bare. The dawn sky was this eerie purple and everything felt wet and foreign. It was unusually quiet and we both just sat there in that surreal moment knowing we would never forget it, and we haven't.

I remember the day you made ravioli from scratch. You were so careful to do everything so perfectly. You were wearing that white chef's coat Matt and Ann gave you and your hair was pulled back in a pony tail. You were so damn happy that day. The sun was setting and the kitchen was tinted with that warm orangey-pink glow. You were so skinny, you had finished treatment, the Decadron was gone and we thought we were finished with all the tumor stuff.

You told me that week that you were finally happy with your body and your life. That was the year you wrote to Cornell about the food science program.

You won a cooking competition for those ravioli and everyone was so proud of you. When you left I had to cash your prize money. I have it hidden and I am waiting for you to tell me what to do with it.

I am not like Dad. I can not just set down the heavy parts of life and keep walking. Instead I am a rickshaw driver and they are all passengers on my bike. Some days I stop and talk with the best and some days the most awful need to talk too.

There must be a reason for this.

I am trying to understand it so I don't resent dad too much. He feels that my being such an emotional being is a weakness and maybe he is right.

There will never be a time when I will let any of you go. I am keeping it all. That does not mean that I can not or will not have a life or that I want to trap any of you here in this world it just means that I choose to be the keeper of those memories. I will build a mental treasure box for them.

On nights like last night when the moon is that big and my soul is wide open I will find a quiet place to explore all those treasures in hopes that I will find you there again and again.


Sunday, June 15, 2008



Noah and I made dad breakfast in bed for fathers day. Noah made the coffee and I made crepes. I thought you might appreciate that! I also went outside and picked cherries from your tree and put them on the plate so dad would know they are from you.

I wish you were here.

I love you,


Friday, June 13, 2008

Pink Sky

Oh my, the proof just got here. Iva was here too but she missed the delivery by about a minute!

The book is small and sweet.

There is one tiny typo in the book no one will ever find but if you do write me and I will send you a pretty pin.

I hope Stevie is proud, I hope where ever she is she knows that this book was made with all my love and the love of so many people.

It is hard to see Stevie and Brianna on the bio pages they should be here with us celebrating.

Hey you two out there in the Everywhere it happened...thank you.

I am going to open up pre-ordering on for all those who have been patiently waiting.

Thank you to everyone for all the kind words and encouragement.


Monday, June 9, 2008


There is someone I care about deeply who is walking a down a long dusty road. She know things but the details are not hers yet. She has instinct and a mothers heart that is teaching her to grieve already.

Her daughter has brain tumors and treatment has stopped. There is no magic number of days or years but it is decided that she will live with these tumors until she can't anymore.

Decisions had to be made, the bravest and most difficult, and she made them for her daughter in the most loving ways, and for all the right reasons. I envy her clarity and strength.

I called her and tried to find words I already knew did not exist. I am on the other side now wanting so badly to reach out and fix this for her and I know I can't.

It is karma or a complete circle of sorts that I said all the wrong things. I couldn't even have a conversation that made any sense because I just kept seeing my journey with Stevie play in my head like an old 8mm film and I couldn't concentrate.

She must think I am an idiot or worse and I feel like worse today. Shouldn't my experience have made me the perfect person to be there for her?

I prayed for her daughter last night and I prayed that she would somehow find it in her heart to forgive me someday, I let her down.

There is nothing to say to a mother who is where she is. "I am here" comes close but it isn't enough.

Fuck Cancer.

Saturday, June 7, 2008

Still Pissed


I am still pissed. I am still waiting for something, something that will make this right, something from you that will let me know it feels like one thing but it is really another.

Tonight I need you to hold me together because some days it feels like my life is unraveling. There are these things I have that I know I should be grateful for but I am not as grateful as I should be. There is too much missing, it is hard to see what I have when there is a big hole in the center of my life, in my soul.

I don't want you to see me like this because I want to prove to you how strong I am. I want you to be proud of me but it is also defiance, I want you to know that I can take anything and won't break.

I am broken.

It is so fucked that when you are brought to your knees you still have to find a way to look up and say "thank you" Maybe I don't have to but I can't spend the rest of my life on my knees looking down.

I know how to work hard, and I do. I know how to smile when I don't want to and I do. I know how to love the love the children I have and I do. I don't know how to pretend that it never happened, I don't know how to pretend she is OK, I don't know how to just believe anymore.

This is all up and down. Tonight is a down. It is not the sobbing kind of down it is a calm questioning, a deep sorrow that just lives in the middle of me now. I don't want to make friends with it and I don't want something false to cover it up.

I once felt like I was like a bright star you could see from heaven, that you knew my name, and you watched and cared for me.

I am not so bright anymore, if you want to care for me now you will have to come look for me.

I can do the work, I can make this life amazing but I need you to help me through this part help me believe again.

Tuesday, June 3, 2008

Your camera

I was using Stevie camera today. If she was here in her body she wouldn't let me touch it. She saved and saved for that camera and it was expensive. I tried to use it after she got it and we got in a huge fight. I called her a stingy little brat. She told me to buy my own. We were mad at each other until the next morning and it was forgotten.

One day I was in her room with her, she was reading all about the eight million features the camera had and slowly going through every single page of the four hundred page manual. I picked up the camera and started taking pictures of her. She looked so pretty and I wanted her to see herself in that moment, I wanted her to know how I see her. Instead of getting mad at me we tried a couple of the features like sepia, macro and slow shutter speeds. I had no idea that those were the last pictures I would have of her. I enlarged a couple of them for her funeral and I printed one on balloons for her memorial. She was wearing her favorite teal t-shirt, the one I wear now, it is so soft, just like her. I found them saved on the computer, she saved them all it broke my heart.

So I have been using her camera at first I asked permission soon I just used it as if it were mine. It started going nuts taking only five photos on four batteries. I finally ordered an adapter for it. I got it in the mail a couple days ago and decided to photograph the Halloween figurines with it.

All was going great for about five minutes then it started shutting off over and over like it did when I used the batteries. It finally hit me that maybe she was trying to get my attention. I said out loud, "Stevie is that you?" I then told her that I was sorry I was using the camera but she couldn't use it anymore and I thought it would be OK. I told her I would stop if she wanted me too. I asked one last time "Is this you?"

I shut the camera off for a few minutes and sat there thinking about her, thinking about one of my favorite books "What Dreams May Come" and how Christy keeps trying to reach his wife from the after life and instead of her being comforted by his attempts she feels pain, when he is close to her and she can feel him so strongly it hurts her, she remembers and it is too much for her to bear.

There is a part in the book where Christy is talking to a psychic that his son has brought home. His wife will not hear it, can't believe it he wants so badly for her to know he is there but she gets angry. Then there is a scene in the movie where she is on her hands and knees on a hill with a big tree, the wind is blowing and she is so sad. Christy tries one more time to reach her, he kisses her, and she can feel it but it breaks her and she screams for him to leave her alone.

In What Dreams May Come she can not be with him the way he is after he has left his body, she can't believe that he exists after and the strong sense of him magnifies the loss instead of comforting her. In the book she kills herself not to be with him but to not have to be without him.

He finds her in the hell she has made for herself and risks his soul to save her or to be with her where ever she is forever even if it is hell.

It seems like a deep thing to think about while you are sitting with a camera on your lap in the middle of the day, smiling dollies all staring at you and waiting, but I think that I sometimes refuse to believe she is with me when she is most with me. When she is most with me it hurts because it is so clear and real that everything has changed and there is nothing I can do but accept it.

I told her not to stop trying, even if I cry. I told her I will learn in time to understand that when I feel her that strongly it is because she is close and not because she is gone.

I turned the camera on and it worked fine, all day, and the photo's were beautiful.

I love you Stevie, the tears are only because I miss you so much and I am so frustrated that it is taking me so long to learn how to do this, to figure out how to be with you in this new way. Be patient with me lamb-chop, I am doing my best.