Monday, April 28, 2008
It was so hot yesterday, there is nothing better than a hot day for me, I was made for it. Noah and I played a little catch, had a sandwich in the park (until the bee's found us), went for a swim and watched Dan In Real Life.
Noah convinced me that this movie would be really funny but it wasn't what he thought it was, I actually liked it and he lost interest less than half way through. I wouldn't put it on my top 100 movies to watch but it was sweet.
After we were done swimming Noah and I made a little raft out of pool noodles and floated. We watched birds and clouds and two lost balloons. We talked about Stevie and how much we missed her. We talked about coming back after we were done with these lives and Noah said that in our next life he wanted to be my big brother and Stevie could be the mom. He is sure we will come back on a different planet. We started talking in our new language on that other planet and called the ocean the oogily-boogily. He giggled every time we made up a new word for an everyday thing. He wanted it to go on forever, kids don't like endings.
Aly had a melt down. She is filled with so much anger not just at everyone else but at herself. I have never known anyone who did not like themselves as much as her. She wants and needs but instead of finding a way to get those things or make those things happen she complains and cries about how unfair it is that she does not have them. I don't know how to help her. I am the enemy. I don't know when she started hating me so much. I thought it was a phase but it is starting to feel like the way things will always be.
I don't like this person she is right now. She is my daughter she should be stronger, more driven. I am not the best role model for most things but I endure, I work hard, I love and play hard. If I did not I would fall apart. She just sees me as being "hard" and I am not. I am tender and mushy I just know that when life gets hard you need to put on your big girl panties, stand up straight and move forward. Lost in a puddle turns into sitting at the bottom of a well.
This thing with Stevie has brought me to my knees but I have to keep doing, keep being and I can cry while I do the dishes, ache while I write a book, and miss Stevie while I float in a pool. Life was not meant for crybabies, it is too messy and requires too much getting back up.
Maybe I ruined her somehow...I love her and I try but I just don't know what to do.
When I found out I was pregnant with her I was only 19. Steve and I were dating and having a really good time. He was my best friend at the time. I don't think it was as romantic as it was just fun and happy. I was young and weird and he "got" me back then, liked me anyway.
He didn't want to have a baby, and the timing was pretty horrible but I loved Aly the minute I knew she was there. Something in me changed. I was so terrified but I was sure. I had no idea what was going to happen with Steve and all the drama was a drag but inside me was a calm knowing that she and I were going to be OK.
When she was born she was so big and warm, so real. On the delivery table I felt so overwhelmed. I think I actually said that I wanted to go home and come back tomorrow. I was way too young.
Back in my room I was told to get some rest while they did the nursery thing. As soon as the nurse left I got up out of bed and walked to the nursery and stood at the window with the dad's and grandparents. I knew her. She was so pink and her hair was so dark. Her face was my face, my dads face, my sisters face, she was my family. I fell in love with her then and there, I fell hard for that bundle of warm and sweet. She was mine and I was hers.
If the nurses could have chained me to my bed they would have. They were trying to mother me but I wanted to take my baby and go home. I finally did the next morning against advice.
It was pure instinct, every second. It was tender and sweet in all the ways it should have been. We fell asleep in the backyard on a blanket under this old crusty tree, we lay in the bath together listening to nothing at all and we spent long days just being.
I felt so real, so important, and so loved by God.
She was this precious present I knew I did not deserve, but I thanked God over and over for trusting me with her.
She is still that present. I don't know how to love her enough, I don't know how to fix what is broken inside her. I wished she loved and trusted me but I wish more that she loved and trusted herself.
Stevie was my best friend. We were different, or at least what I felt (feel) for her is different than anything else. This does not mean I love her more than Aly I just love her differently.
Aly and I have something that only she and I can have. She was my first baby, we spent two years together just her and I. We were our own planet. She was my first real love, for the first time in my life I felt truly connected and not alone.
If she were reading this, and she never would this is what I would tell her, and don't say you should just tell her, I can't, I have tried, she can not hear me.
I love you.
I know you can not remember the days
when it was just you and I
Under the tree
me telling you stories
and singing you songs
In the bath
with all the bubbles
you would fall asleep warm and happy
I love you.
Do you remember
when we chases ducks at the lake
made cookies with green frosting
drove around in the red car?
I love you.
Do you remember shopping
for your prom dress
the morning of the prom
because you changed your mind
and decided to go?
I love you.
Will you remember
this time when I tried so hard
to be near you
to understand you
to help you
but I couldn't?
I love you.
how much I love you
how proud I am of you
how beautiful you are
how smart and gentle
you can be
the real you, the real you
hiding there inside you
I love you.
Be here with me
be my family
let me love you
let me help
Thursday, April 24, 2008
I went to have my hair cut yesterday. I thought of growing it long but I knew it wasn't me. I got the same wedgie bob I have had for years. While he was cutting I was thinking that a years worth of hair was gone, the hair that Stevie knew and touched while she was still here, it was all on the floor being swept away but I was still me. I am not my hair although that hair was once a part of me.
I have to remember that, hold onto that.
Saturday went well.
I woke at two am to the light of the moon streaming in through Stevie's window. I lay in bed talking to her, telling her how much I love her until I fell asleep again. I woke before sun-up the wind was ripping through the yard, the chimes were crashing. I wrapped Stevie's fuzzy pink blanket around me and sat out on the front porch like I have a hundred times and waited for the sun to come up, her sun, her day.
I made a huge dish of cheese stuffed pasta, put the house in order and spent a little alone time with my thoughts while I waited for guests. I would not let myself think about the last day. I made myself be here in this day, in this moment with my girl the way she is now. I tried to fill my empty space with love, all the love I have for her, the love I will always carry.
The weather was biting, cold, cold wind. This is not typical April weather for California, it did not seem like an accident. The day was planned outdoors but we ended up inside, standing room only but it was good, so many people so much love.
My best friend from high school came with her daughters and her sister. I remember the day her oldest was born now she is a woman. I remember he little sister sitting on my lap in a leaky diaper on the way to a high school football game, now she is a mother.
My cousin Woody showed up with a basket of some of my most favorite things so that when everyone went home I would have some comfort. Her mother and sister, and all their children were there to support me. They know this loss, they understand this gathering.
Flowers were delivered, tulips, tulips, tulips...
At the end of the day we brought the balloons out to the front yard, Steve said thank you to everyone for being our friends and our family and for loving our daughter. I said "I love You Stevie" and let my balloon go, fifty more followed, it was so beautiful, I can't even describe it. They drifted until they became tiny stars then they were gone. Every one clapped, sighed, cried.
We went inside and ate more, talked then everyone slowly made their way home.
It was good, it was right.
I am moving forward. I am not afraid anymore, I won't lose her if I live, I will just take her with me, if she chooses to come, and I think she does. I feel her love all around me, all the time.
I had a dream last night that she was a little girl, here in the house, I knew she could not stay but I was so happy to just be with her. The dream is fading no matter how hard I try to hold onto it.
This morning I was filled with Hope.
Stevie is not cells, she is not flesh and hair and breath. Those things were a part of her for some time but now she is who she has always been and I have to learn to be with this Stevie now, let her be with me in the way that she can.
This is not easy, it is the hardest thing but it is what I have.
Someday there will be understanding, each day I am one day closer.
I love you Stevie, I love you so much, my heart is no longer empty, it is full of you. I know there are so many more hard days to come, I know it will never be the same, perfect days are gone forever but I will live fully in days like today when I feel you so close, and there is a glimpse of knowing.
I wrote in my journal about the house in heaven I would build for you...I will think about you there.
Sweet dreams my wonderful, precious, favorite girl,
Friday, April 18, 2008
It is the 18th of April. Last year we were in Walnut Creek at John Muir. Stevie was admitted. She was in and out but holding tight to my hand. We just got her into a room with a big window and the view was like it is today, sunny and beautiful. I asked her if she could see it, and she said, "Yes" but I knew she couldn't so I described it to her. I told her the sky was clear and blue, the tree's were so green, I told her it was a perfect day.
She was afraid, I was afraid. Steve was in denial, Aly was holding on and Noah was oblivious. You could feel it happening, it was so close and I couldn't hold it back, with all the hope and love in the world I couldn't hold it back it just kept coming.
Late that night I sent everyone home, I was so tired, I had not slept for days and I kept telling myself all we needed was a good nights sleep. I asked Aly to stay, I don't know why, maybe I did, I just don't know.
They set up a cot for Aly and I got into bed next to Stevie. I just held onto her and she held onto me, it was all we had it is all we could do. I kept whispering, "It's Ok honey we are almost there, this is almost over" Alarms went off, medication didn't work it was awful and ugly and I was so tired, she was so tired and in so much pain.
She signed "A-S-L-E-E-P" I couln't understand, my brain was too foggy. Aly said, "asleep mom" I asked Stevie is she wanted to go to sleep and she nodded "Yes" I turned off all the lights, turned down her alarms and snuggled in.
We must have fallen asleep, the nurses left us alone. At about four in the morning I felt her squeeze my hand tight, three times. I asked her if she had to go to the bathroom and she shook her head. I fell back to sleep. I was dreaming that someone was telling me to go lay down next to Aly so I did, it was like sleep walking. I closed my eyes for just a minute more then I was wide awake. I went to check on Stevie and she was unconscious. Her eyes were half open but her pupils were not moving, she was not responding.
I woke Aly. I went to the nurses station and asked for cleaning bedding and bathing stuff, I also asked for a pair of scissors. I came back and cut all Stevie's clothes off. Aly and I washed her body and rubbed her with lotion, satsuma from her favorite place. I called Steve and my sister to come, I knew she was gone, her body had enough.
The doctor came in and told us it was time to let her go. Steve lost it. I yelled at them to get all the monitors and wires off of her.
I pulled off her oxygen mask and kissed her and cried all over her face. We were all crying and telling her we loved her. It wasn't soft and beautiful it was heartbreaking and terrible. I didn't want to let her go but I had to, it was my job to let her go.
She took a few breaths and she was gone.
I am sitting her crying terribly hard. I had to write this but it hurts so much, too much.
It feels like I have to keep letting her go when what I really want is to have her back.
No more writing I have come undone, I have to find a way to let this part of the grieving go and learn to celebrate her life. I don't know how to do that, I don't how people live through this, it is more than a person should be asked to do. I don't know why she had to live through what she did and then die...it is just so painful, so wrong, so unfair. She was so good.
Wednesday, April 16, 2008
Teresa is one of my best friends. She came into my life just when I needed a friend like her. It can't be an easy job for a person to befriend another in deep mourning. She wrote me emails everyday, and drove 100 miles to bring me chocolate cake.
She has been not only my friend but my sister and my mother. She finds way's everyday to remind me that I am here for a reason, that I am not alone, and that I am loved.
She convinced me to go to Disneyland after Stevie left. Anyone who knows me, knows I hate Disneyland. OK I am not human, whatever. I was having a hard time leaving the house at the time, a really hard time. I don't know how she did it but a week later I was driving my big red Nitro to Anaheim to hang out with Mickey.
It was the best thing for me and Noah. We were both hurting and he was missing his mommy. I was having a difficult time connecting, and believe it or not a difficult time being in love with my kids, I was so afraid of the power of that love.
This trip was all about Noah and I connecting. We got up early and got on rides,
ate candy apples and hung out until the park closed to watch the fireworks. We played until I was physically exhausted.
I remember having a sword fight while waiting for the monorail to take us back to the hotel. Noah put his sword down and said, "Who are you and what did you do with my Mom" I wanted to cry and laugh at the same time.
(Noah has never known a time when his sister was not sick. There were weeks when he did not see me because I was at the hospital. He stayed with Stevie and I in Atherton while she had treatment at Stanford that last time, he went with us to the hospital everyday.)
When we got back to the hotel Teresa made me tea and washed out my bloody clothes (feminine protection failure) and put me to bed. She told me how proud she was of me and what a good mom I was.
I don't think she really understands what she did for me that summer.
She will be here on Saturday, she will drive the 100 miles even though Passover is Sunday and she has a million things to do.
What do you say or do or give to a person who holds you together, who shows up when it is darkest and most sad, who gives and gives and gives?
I guess you say Thank you and I love you.
Tuesday, April 15, 2008
I remember the day we were told, the drive home was so long. The sky was cloudy, it looked like rain not like spring. I sat in the backseat with Stevie, held her hand and kissed her, told her not to worry that it was going to be fine we just needed to get the tumor out and she would be all better.
I made myself believe it.
I had to call my family and tell them and I did. We had to see doctors and make appointments, I got online and took a crash course in neurology and cancer. I cried until I threw up. I sat with Stevie in silence on a lime green sofa out here in the sun room, looking at nothing, saying nothing, just being with her.
Two surgeons, one aggressive and not as available, one very calming, kind and ready to get to work. I let Stevie choose but I was glad when she chose Dr. Calm. The surgery was scheduled and she did well. He couldn't get the whole tumor but he got what he could. He was afraid of doing permanent damage to her brain stem.
I can't write all the details yet it hurts too much to remember that time in that hospital, seeing her with a swollen face and all those tubes.
The plan was to follow up with radiation. We did. It was terrifying and the decadron was horrible causing her to swell up to twice her size and make her an emotional wreck.
We were told the tumor was dead.
Life went on, just in a new and different way.
In 2003 right before her sweet sixteen we found that the tumor reanimated and needed to be taken out again. We went to see Dr. Aggressive. He got it all out, all of it. It should have been a slam dunk but the first doctor was not as seasoned and not as sure. She should have been home free.
This surgery was hard on her body. The price for removing the tumor was a loss of balance, an uneven gate, pain that would not go away that she rarely complained about. She had to learn to eat, read, walk and talk all over again. It seemed worth it, to have her forever, for her to never have to worry again.
There was so much fall-out from the tumor but she just kept moving forward, dealing with it all, finding new ways to make broken things work.
She graduated to 1 year MRI's, it felt like an incredible milestone. It felt like an old story we would tell, half wanting to forget but bringing up anyway to remind ourselves how blessed we were and how precious she was.
On the day of her 1 year MRI, just a couple days before Thanksgiving of 2006 she told me she did not want to go, that she knew something was very wrong. This is not the first time she made predictions that were 100% about her body and her treatment. I can't write them all now, I think it would kill me.
The MRI showed a new tumor, larger and in her cerebellum. Surgery was the day after Thanksgiving. She was terrified. I stayed up all night with her, holding her, assuring her and praying.
They removed it all but it started to grow back before the surgeon had time to sew her back up. The pathology was a mystery. They still don't know what the hell it was. They do know that it was caused by the radiation. The radiation she did not need to have had I chosen the right surgeon. She is only one of three people in recorded medical history who this has happened to. A benign tumor turning in to a highly aggressive tumor like this, for these reasons.
We did radiation again, more of the enemy to fight the enemy, it is all we had. Then there was chemotherapy. It was all very horrible. It was everything anyone who hears the word cancer fears. She was tortured. She spent the rest of her life in a bed, hospital, or wheelchair. She never ate food again, drank coffee or read a book.
In April just five months after surgery she died. I still can't believe it.
We went to the hospital because I was so afraid, I knew she was dying and I could not do it alone.
I can't write anymore.
Sunday, April 13, 2008
Today feels like the right day to tell part of Stevie's story. I will write as much of it down as I can before it hurts too much to tell.
Stevie was born in 1987, big hair was in and I listened to Cyndi Lauper. I was 23 years old. Aly was just two when her little sister was born. In July I was in a very bad car accident and my head went through the windshield of our truck, I was not wearing a seat belt. Aly sat on the bench seat between Steve and I, no carseat we didn't think she needed one, no one thought to make it a law yet.
Aly and Steve were fine and I was pretty beat up, stitches a banged up bloody head but a baby that weathered the accident just fine. I did not know at the time and I would later find out that I had fractured my pelvis in three different places.
On the night of the 22ND We went out to dinner with Bob and Pat. there was an Italian restaurant that made labor pizza. I was over-due and thought I would give it a try. On the way to the restaurant I had some contractions. I kept it to myself not wanting to jinx them into going away. I felt good, happy, I knew the baby was coming soon.
After dinner we went for a long walk under a sky full of stars. The days were still hot but the nights were perfect. On our way home in the car I knew my water was breaking. It didn't hurt, just a trickle of warm that I could not stop.
At home we tucked Aly into bed and stayed up timing contractions. I felt really good, full of energy, I thought we had a long time to go. I called my sister and she came right over. We hung out talking, contractions getting closer. Steve thought we should get to the hospital but I thought we had time. My sister and Steve made the decision that we should go to the hospital, I bought time with a shower.
When we got to the hospital it was quiet. The nurse was sweet and Steve flirted with her while I went to the bathroom. In the bathroom labor became intense. Steve and the nurse talked about jazzersize and how firm she was getting and I went into transition.
They helped me into bed and the nurse announced we were ready to have a baby. It all happened so fast. They turned the bed into a chair, brought in lights and instruments and paged the on-call OB. I didn't even have time to take my socks off when I started pushing.
The doctor announced that her head was "right there" and I reached down instinctively as she was born, right into my waiting hands. I lifted her to me and said "Oh Happy birthday Stevie"
Things go as they will all the mess cleaned up, warm blankets brought in, the baby shuffled off to the nursery for washing and weighing. I was taken to a different room with a big window and a yellow curtain that separated me from the mother next to me.
Steve went home to sleep and make the phone calls. I waited impatiently for them to bring my baby back to me. I knew the baby they brought in was mine, she was the only one in the whole hospital that was born weighing 10 pounds.
Steve came back with Aly all dressed in purple with a funny little water-spout pig tail on the top of her head. She held her sister and said "Ohhhh" I am not sure she quit understood what was happening but she did know that she was somehow connected to this warm bundle of pink cheeks.
Steve and Aly went home, my room mate was discharged and it was just Stevie and I. The sky was amazing, the night was so peaceful and perfect. She woke up and looked right at me, right into me and I knew...
I have given birth to three children. When Aly was born I could see myself in her and every generation of my family, she was my family. I was young so becoming a parent was over whelming but I knew we were going to be OK, I knew her.
When Noah was born he was funny looking, all long skinny legs and big red testicles. He was so damn pissed. When I held him to me he quieted and again he was my family, me, and I knew him, felt like I had waited too long to finally be with him.
When Stevie was born there was a weight, a heavy sadness. I did not know her she felt bigger than me, older than me and I felt like I was so unprepared for being her mother. It may have been sleep deprivation but I heard her say "Here we go" I cried.
I cried for a very long time. I was told it was the blues but I knew it wasn't. I was mourning.
I held her so close, I made so many promises. I slept with her, I kept my hand on her little chest when she slept and counted her breaths. There was something so intense that connected me to her.
She was a quiet baby. She loved to nurse and sleep. She loved to be held and kissed. She was not interested in walking right away and would have never walked if we would have just strapped her to us, she would not have minded. I use to joke that she was a princess in another life and her feet never had to touch the cold ground.
She also didn't feel the need to talk. She and Aly had a secret language and Aly was more than happy to translate. Aly seemed sincere and Stevie seemed to agree and so it was. Aly would say "Ah, my fremd Stevie said she would like another potcycle" So we gave them popcycles. Aly would say, "My fremd Stevie said she wants you to read us another story" so we read another story.
When Stevie slept she would stop breathing then take a deep breath and begin again, the doctor told me the problem was me paying to much attention to how she breathed. When Stevie was about six she began getting strange fevers and tummy aches, she also bruised very easily. The doctor told us her blood results were fine, she was fine. Later she began getting bad chest colds that would not go away. The doctor told us she had asthma and put her on a steroid inhaler. Stevie started snoring and having more and more problems with the asthma. More meds were added and her tonsils were removed when she was seven. My gut instinct told me we were in for some big trouble.
My mother was (is) a hypochondriac, has some mental illness and a chemical dependency. She could also be accused of Munchhausen's syndrome if they had that term when I was a kid. I mention this because it affected how I proceeded with Stevie's care. I kept taking her to the doctor they kept rolling their eyes and telling me I needed to relax. Instead of pushing harder I was convinced I was truly my mothers child.
When I was seven my mother told me I was diagnosed with a brain tumor. I believed it my whole life until my twenties when I requested copies of my medical records and found it was not true.
We moved back to California in 1996. I was sure it was a good move because the weather here was so much nicer than the 206 days of rain we got in the pacific northwest. I felt like Stevie's lungs would dry out a little.
She got sick more and more. The medication they gave her for the asthma didn't seem to work. The snoring got worse and worse. We were told she had severe sleep apnea after a sleep study. the cause was obesity. She was not obese, maybe a little puffy from the steroids but she was perfect as far as I was concerned.
When we took her to the orthodontist to have braces put on our dentist freaked out. He told us that he had never seen a mouth like this before. He suggested she have some therapy for tongue thrusting and repaired her teeth. I took her to see and ENT who told us she had Pierre Robin syndrome. This meant that she had an underdeveloped lower face, this was causing her teeth to do what they were doing and might be causing the breathing problems. We were referred to a pulminologist who knew a little more about this. She suggested a bronchoscopy.
When they did the procedure they thought they could see a tracheal cleft, another marker for PRS. She changed the meds, got another sleep study and Stevie was fitted for a CPAP. This is a machine that breathes for you should you forget by pushing air into your lungs through a face mask. She hated it.
We thought her lungs were crappy and she kept getting pneumonia (at least once a year) because she was aspirating. The cleft would need to be repaired. Stevie did a bunch of Pulmonary function tests that were very abnormal. I told the pulmonologist that I had a weird dream that she gave me an x-ray that she had taken of Stevie and I could see a perfect ball in her throat. We were referred to Stanford for another look.
During all this Stevie complained of seeing double, and throwing up every morning and sometimes after lunch. I also noticed that one of her pupils was dilated a little more than the other. The pediatrician told us that she was fine. I challenged her and felt myself curl up inside as I said "Peggy do you think she has a brain tumor? I read online that..." She told me to stop reading online that Stevie's apnea was obstructive not central.
At Stanford a little Asian man who looked about twelve scoped Stevie. He was an ENT resident and asked more questions than we had ever been asked. I gave it all to him, it had been four years of not knowing what was going on and I needed to vent, damn them if they thought I was crazy.
I was talking he was scoping, he said, "No cleft but this kid has a paralyzed vocal cord, she is actually paralyzed on her whole right side in here, not even a gag" I exhaled, I thought we were finally getting somewhere that we could fix what ever it was. I asked "so what does this mean?"
He flippantly said "Well it could be tumor but with this much damage she would be dead by now"
He ordered a CT scan.
I was gardening and I heard a voice say "Get ready" that was all.
We took Stevie in for her CT, it took a very long time, I felt myself beginning to panic. It was a Friday. On Monday April 19Th our Pedi called and asked us to come in. It was 7:30 in the morning. I knew.
She sat us all down in the exam room, the scan was on the counter next to her. Her eyes were red and swollen, she had been crying, she was undone. She said directly to Stevie "I am sorry honey but you have a brain tumor" We fell into a heap and sobbed. I demanded to see the scan and she put them up on a light board. There at the base of her scull, in her brain stem was that perfect ball I dreamed about.
Well, I have hit that wall today. I am going to go and throw up and I will finish more of this story tomorrow.
Saturday, April 12, 2008
This is going to be a strange post, fair warning. I am in some weird place with the memorial coming up, relationship stress, and regular responsibilities. I can't explain what I am feeling right now, maybe it is just more of the same stuff I have always been feeling just in a different combination.
So last night I was relaxing in our stinky pool spa. Most pools smell like chlorine, I happen to like that smell, it reminds me of summer. Our pool has a big padded vinyl cover that keeps the heat in when we are not using it. The cover gets sweaty inside the pool and the water absorbs the smell of the sweaty cover, a musty moldy smell. When you get out you smell like it too. I degrees. I decided I would empty the whole pool (it has been a year since we did a full drain and fill) the power has to go off to the pool and the water needs to cool. Last night was the last of the really warm water before the big drain this morning.
It was about ten O'clock the sky was clear, deep indigo, a half moon and the big dipper right over my head. Isn't it funny that if you look at the sky long enough it seems like there a million dippers. Under that sky, with a quiet neighborhood fast asleep I felt very relaxed. I meditated hoping for something incredible to come to me. I started talking to God and to Stevie and then I was just talking to anyone who would listen. This talking is internal, just so you don't get a weird picture of me naked in my backyard in a little pool babbling.
I was asking why it was so hard to communicate with Stevie, why I couldn't just "see" her and the answer was "it is too dense there"
I asked, "what does that mean, dense?"
The answer was "all the particles are packed so tightly together so make something that looks solid and touchable"
I asked "so what are you"
the answer was "I am not packed so tightly I am everywhere"
"Oh no, not like a petal on a flower and the fuzz on a fallen lollipop?"
"Nope, I am just everywhere, I am spread out, it is just different"
So I asked "How does this work, how did I get so packed tight"
"All the particles just came together to make you, it is a miracle"
"Wait a minute how does that work?"
"It just happens, it is random"
"No way, what about DNA, we are connected, I look like my mother, my daughter looks like me, we share creativity, likes and dislikes, what about that?"
"DNA is a code, it is also a magnet it helps bring the particles together, it attracts them but they are not the same they are just what is attracted"
"I don't get it"
"Well you are an artist, you mother and father were artists, your grandfather and your daughter you are all artists but you are different kinds of artists. You have the code or magnet for creativity and that attracts those kinds of particles, but different ones, your own. Every person is a unique combination of these things, they may seem similar and it may look like a pattern but it is still very random, no two people are ever alike"
"So what happens when we die?"
"The particles are released and will come together in a different combination to create a new person"
"That sucks, I don't like it, what about personality?"
"All energy is one thing, there is just one, at times different parts of this energy are doing different things but they are still one thing. You are physical right now, you are experiencing this one moment in time, in this combination, it is not the first time and it will not be the last
time. What you call personality is just the experience of this combination."
"Again, this sucks, this means I will never see Stevie or be with her again, this was it, this random life, this random experience, fuck that"
"You are Stevie, she is you and you are something so much bigger, complex, and complete. When your physical body dies you will be with her again as one whole. The two of you may combine in ways that bring you back together in a physical way, and it may not. The two of you have similar energy, share experience particles, when the magnet pulls, the two of you may be pulled in a like direction as two different people or as one person."
"What about heaven? is that some kind of Santa Clause thing I have to deal with?"
"Heaven is just the slow separation of those particles. When your physical body dies it slowly decays and all of that organic material becomes part of the physical world again. When your energy leaves this body it too has to slowly change and separate, it takes time. There is a space where you are still the memory of that combination and every combination you have ever been, this recipe is a new kind of energy that may attract the same way again"
"So trying to talk to her is a waste of time?"
"No, she is still the memory of who she was when she was physical, each particle like each cell in a body has a memory, it is made up of the whole. One of your skin cells holds the memory of your entire physical body, your code, this does not go away it just gets added to. What you have shared in this life is recorded in her and in you. When you speak to her you speak to every particle that made her and they each feel that love and connection"
"I am sorry but this is not what I hoped for I wanted there to be a heaven where she would be waiting for me, and we could see and touch each other again."
"Be patient, it is even better than that"
This took about half an hour. I was bleary eyed and freaked out that I didn't drown in the pool. I felt a little Kooky, wondered if maybe this is what goes on in the heads of people who pee in public, live out of shopping carts, and yell in the streets about potato salad and enemy fire.
We all do this internal dialog thing, and I needed answers. Maybe I was talking to myself, maybe I was connecting to the bigger picture, I just don't know. I do know that there was a few minutes of contentment.
Friday, April 11, 2008
The house is crumbling like a stale cookie. I keep fixing it and another part starts to peel, fall, crack. Today we had a handyman out to fix the leaky roof and replace a large part of the ceiling that got water logged with rain over the winter. I noticed there is a crack in the new tile floor in the kitchen by the refrigerator. How did that happen? Did someone drop a very heavy head of lettuce?The bathtub is leaking again, the dogs chewed up the trim around the back door, the floor I laid last summer is starting to separate in some places.
It still stands, this old creaky house, it could just give up and cave in on itself but it won't. It has sheltered four families, it has watched children be born and children die. It creaks and moans and I tell it, "I know, I know" I dress it up, apply bandages, glue, and paint and it keeps me warm and safe.
I am living in the studio now. I get up at 5:30 make some tea, find an apple and just hang out and make art. When Noah comes home I convince him this is a nice place to do homework. After dinner I come out here to relax. I write, I blog, I make plans, I pay bills, I design. This house has offered me a place to be me.
At night I sleep in Stevie's big bed, surrounded by the tree's she left on the walls. I talk to her while I stare out her window at the stars and if I am really lucky the moon. I fall asleep saying, "I love you so much"
The back yard is pretty, Stevie's cherry tree is full of hard little green nubs that will become big fat red cherries soon. I bought that tree for her as a present after radiation. She wanted to be able to see cherry blossoms from her window. She died when the last of those delicate petals blew away.
Everything makes sense some times, it doesn't mean it is right or good but there just seems to be a pattern, an order created by an author, a scientist, a God. This house is so human, the cells in my body are so much like the galaxies in the universe, petals and raindrops fall just when they are suppose to. I sleep in a forest like I told Stevie I would, waiting for her to come back from her adventure with the white pony, the little boy, and the Everything.
The 19Th is getting closer, full circle. I will have lived each season without her. I have healed I just don't know it because I have so much more healing to do.
The view from my life boat tonight is a pale evening sky that is taking forever to turn black, a horizon that is an imaginary line. The water is warm, the sea is calm, my companion is a crow that cries when I cry. I am not looking for land, I am content here floating, thinking and missing my sweetness.
Stevie you are still beating in my heart, I listen, I listen, I listen...mama.
Wednesday, April 9, 2008
The balloons I ordered came in and they are wonderful. I wish they were something I was ordering for graduation or a 21st birthday instead of an anniversary of the saddest time.
I am working, making little figurines that remind me of Stevie. I think she would have loved them, maybe she can see them from where she is and she does love them and she is the one who wakes me before the sun every morning to make more. I am growing fat sitting in one place sculpting and eating peanut butter. I don't care.
The red tulips are up. I thought they were gone but a dozen of them found a spot to bloom. The single pink tulip is still standing in the garden I made for Stevie, my heart breaks when I look at it, so pretty and fragile, so alone, so strong.
I have to write the page about Stevie for the book tonight. I have put it off until the very last minute. What can I say that I have not already said a million times? What words can I find to comfort a mother who is reading this book because she knows her child is going to die or has died? What words would comfort me? There are none.
I guess I will tell her,
I know it hurts, hurts so bad you just want to close your eyes and stop breathing. I know everything you believed is falling away and the thought of never seeing your child again is an agony of the soul. I know that these are your darkest days...
Does it get any better? Well little by little normal creeps in and you find yourself doing all the old things again, maybe you wonder why you do them, what the point is really but it is like you are in automatic pilot and you just do. You get your appetite back, you are able to drive your car, do the grocery shopping and kiss your other children good night without falling apart.
You start sleeping, you might go back to work, you might even try to have another baby. None of these things make it hurt any less or replace the part of you that is lost but it makes the time go by.
One day you wake up and run a few errands, get your hair cut, have lunch with a friend and you didn't once cry or feel like you were going to throw up. The drive home is hard, you feel a little guilty and wonder if you are starting to forget. Within two minutes of that thought you break down and realize you have not, you just took a little time out to be an alive person, the kind of alive person who can have lunch with a friend and cry all the way home.
I don't know what it will be like in the years to come, I just know that this year has been horrible. It is not as bad as watching your child suffer and die but it is a very close second. Part of you knows the pain and suffering for her is over but yours is just beginning. The heart wants what it wants and it wants a child to touch and kiss.
If I can survive this I can survive anything. I am knocking on wood because I don't think I could bear to lose another child but other than that everything else seems pretty small in comparison. I think I could climb a mountain, fight a grizzly, get leprosy.
Most women my age are trying to find themselves, lose weight, save for a face lift or a tummy tuck. Me, I am just here. I know I need to find happiness to survive so I breath Noah in try my best to be in the moment with him. I try my best to get closer to Aly but she pushes me away so full of something that only she can sort out. The thought of sex or a relationship seems so unreal, it takes to much energy I am no whole enough, there is not enough of me for it. I can not give like that, I am too selfish now.
My studio is so bright and beautiful, I don't know why it took me so long to give this to myself. I don't know why I always crowded myself into a dark room, a place no one else wanted. One morning I was laying in bed wondering what I would or could do to make my life a little nicer. I thought to myself "I would have my studio in a sunny room, with lots of work space, big tables, shelves full of my hoarded supplies" A little voice said, "then why don't you just do it?" That little voice would not let me say "I can't because..." Instead it challenged me, dared me and I did.
Was it Stevie helping me move forward? If I sit here and believe that then I am filled with such love and longing to kiss her cheeks and say "Thank you thank you" If it was just me daring myself then good for me.
I wonder what she is doing? I wonder if she sleeps, eats, sings, runs, floats around in the universe, dreams, plays, has people who love her where she is. Does she miss home, does she remember having auburn hair? Can she see me in the tub reading her books?
Oh this life such a strange thing.
Thank you Stevie for all your gifts, even the little bag of Burt's that I teased you about. You are lovely, your heart is so good, so pure. How did I get so lucky to be loved and to be able to love someone like you. I just wish I could have a little more of you.
Wednesday, April 2, 2008
My Aunt called me late last night.
She was crying and saying all the things that I have said, that I still do, and there were no words to comfort her, I didn't even try. I know that there are only two things that can truly comfort and one is the ability to give you your child back the other is to show you where they are now. If a person can not give you those two things than words fall away.
I have read a few books that have comforted me for short periods of time. I have wanted the words there to be true and for the person who wrote them to really be as good and loving between the lines as they should be.
These are hard days. Loosing a child is not normal so there is not a normal process to go through. This thing is messy and all over the place. There is guilt, regret, sorrow, pain, confusion, empty places that stay empty.
My heart was breaking for her but there was nothing I could do, and I knew it too well.
A parent who loses a child is one of the most broken people you will meet. We try so hard to hold ourselves together with string and tape, we get up every morning and put one foot in front of the other no matter how heavy our heart it and how much we want to lay sleeping because that is the only place where we can be for a moment where there is some kind of peace.
Some of us work harder than we should because hard work is an escape. Some of us throw ourselves into a cause because we need someone or something to take care of, we need to be needed, feel useful. Some of us find other ways to numb this pain that only hurt us more.
The bottom line is that there is no short cut, no escape, we have to come to terms with the fact that we can not change or fix this thing. We are where we are, we have what we have. This time our strength as mothers can not lift the car or pull the child out of the alligators jaws. This time our strength as mothers will lift and pull us from this dark and hurting place and allow us to find beauty and peace again in a world where our child is not.
It does not seem possible but I know it happens. God is all loving, I am still pissed at God but I know in the recesses of my heart and soul that I am still loved and that one day I will wake up with a heart that is less heavy. I fight it now because I fear that less pain means less memory but I know I can have both I just have to walk down this dark winding path first.
My daughter did not leave me, she was not taken away. Her body simply could no longer contain her soul and she had to leave it. She is still here with me, I feel her now. I still beg the universe for more but everyday I feel closer to understanding. I fall back a step but I think I moving forward little by little.
Aunty and anyone else feeling lost in this dark forest of endless night and tears, there is light up ahead and it is not a new empty place. This is really a circle we are walking and we will end up where we started in our same lives but we will be different, we will know what some people will never know and that will carry us through the rest of our days stronger and a little more blessed. This is a gift our children give us and we give ourselves. We were chosen and we chose this most sacred of lessons.