Wendy

My son has a red lump on his left arm. It rose a bit at the site of a flu vaccine he received yesterday, when we visited the pediatrician for a benign ailment which has now disappeared. We waited for the doctor and I read the poster with charts: “Quantifying Morbidity and Mortality for Influenza”. (I know too much about morbidity and mortality, so I said yes when the vaccine was offered). A short time after, as we left, he sneezed. I asked if he was reacting to the vaccine (he was not), and, forgive me, my mind raced to the possibility of him having a rare deadly reaction and dying right there on the tiled floor. I imagine frequently that those I love will suddenly die. I see this partly as a feature of PTSD, and partly as direct knowledge which some people can avoid. This was a milder episode of panic than I sometimes experience, especially since I was already in the presence and consult of a doctor. This is a doctor who has been to the edge of hell together with me, so she understood.

When I was growing up, I always had knowledge of my first cousin, Wendy, who died long before I was born. This happened before the discovery of a vaccine for measles. She had the measles, with complications, and she died. She was five, just like Susanna.

Shortly after Susanna died, I sent a Facebook friend request to Wendy’s sister, who I had met once and knew little about, other than the appearance of her smiling young face in a couple of family photos. She accepted, herself ill and near the end of her life, and expressed her sorrow to learn that “once again tragedy had been experienced by the Freer family” in this way. Death itself is not a tragedy. We all die. The death of a child is a tragedy because of the unending pain it causes. I do not know that Susanna, in her location on the other side, laments not having lived longer. I tend to doubt that. I never will live a day without considering her absence a tragedy. My life is not a tragedy overall, but there will never be a resolution which does not include a missing piece, one which has left a hole with a painful jagged edge.

Many people think of Susanna, and feel heart- broken knowing what happened to us. Her death rippled and reached many, even those who did not know her. My family and friends grieve for her still, in their own ways. There will be times that they think about her, and times that they wish things had happened differently. For me, time moves on, but Susanna’s death is always there. It will greet me every morning, and color every event. In some ways, it will make me love a bit deeper and even seize moments I may have missed. It will make me less likely to attach importance to things which are not important. It will not remove me from life or the truth, it will make me reflect them more honestly.

This is something I wrote a few years ago.

When I go to heaven, I hope I can do the following things:

  • Make a box of macaroni and cheese for Susanna and watch her eat the whole thing. We will have come home before her father and brother from the playground (Susanna will not be crying like she used to if she had fallen or become tired, and I will not feel confused and bored, nor will I be missing her in despair like now. This is heaven, after all). We will watch an episode of “Peppa Pig” with that song in those beautiful English accents. “Peace and harmony, around the world…….”
  • Open a cassette from one of those long plastic boxes from Caldor, put it into a boom box and play it over and over again because the whole thing, every note, is perfect and all I can think of is “Again!” It may be Bruce Springsteen, or New Order. It doesn’t really matter.
  • Have many massages with hot towels and aromatherapy. Or the equivalent of that for someone without a body.
  • Talk to all of my students who cannot speak now. I want them to have the opportunity to comment on whatever we did in class, at least once.
  • Talk to my uncle and aunt who I never met, and tell them I am so sorry they lost their five- year-old daughter to the measles because I know how they felt (though they are dead, and I am hoping the dead have healed from losses. I want to do it anyway). Then jump over to thank whoever invented the measles vaccine.
  • Perhaps float in clouds made of vanilla ice cream, like I used to imagine when I was Susanna’s age. I digress.

 

 

 

 

 

Crescendo

“And then I felt sad because I realized that once people are broken in certain ways, they can’t ever be fixed, and this is something nobody ever tells you when you are young and it never fails to surprise you as you grow older as you see the people in your life break one by one. You wonder when your turn is going to be, or if it’s already happened.”
― Douglas CouplandLife After God

 

Fall is coming tomorrow. Agricultural time is even more suited to me as I get older, nothing inside of me obeys a linear system. I must stop and think a bit to remember the season, to try to grasp where I am. I am reveling in the two days off for Rosh Hashanah, though I am not Jewish. I am sorely in need of some time off, and reflection, and I always need a new year.

Autumnal Equinox, for pagans, is the balance of day and night and the point of certainty that death is happening. When I am teaching my art class, this is the season we stream Vivaldi’s Four Seasons. I skip ahead to the Autumn passage. The floating leaves represented in notes make the most sense to me. Time to turn on the music and let go as I stare at the complex sea of situations that is my job, newly scheduled and followed to the minute in linear time.

In the bigger picture, the crossover line at death is an illusion. I do not say this to try to be clever but because I know it is true. We arrive here with a mission, and make choices as to how we complete it. I have no time for or interest in activities which involve denying or ignoring this. We all come from the same place, and no one here escapes the cycle of birth/death /rebirth. No one wins. It is not a race.

PTSD (the way I understand it, I am not a doctor) is kind of a state of having trauma frozen in your body and mind. I might be carrying on with my day as I need to, but little pieces of memory float to my consciousness and make me fearful and anxious. It has been a big relief to see it this way, very unsticking. I believe I have healed some. Looking at frozen fear is the best way to turn it away.

In my nonlinear fashion, this is something that happened to me three years and five months ago.  I am in the hospital room at Maimonides in Brooklyn. Susanna’s body is still breathing, but attached to tubes and machines. This is before the attempted brain scan which would not be completed. This is after the conversation with the brain surgeon who has told me there is nothing he can do. He has hesitated and floundered over those words, a part of his job no one would envy, and my jaw as well as my heart and soul have dropped through the floor. Somehow, I have sat in this room and decided that I will move my body and walk across the street to buy coffee. I have said this to my Significant Other, but he has not heard me. He is millions of miles away from me, and I believe he will always, from this day forward, hate me because of what I have done. I have not saved Susanna, and I have remained alive. I must be a horrible person, as I have always suspected. As I walk through the lobby and into the street, and back again, I am sure everyone is looking at me and knows my daughter has been sentenced to die. I have been forever changed by this day. This will always be true.

An hour or two later, I have been consoled by a nurse in front of the room where the brain scan is to take place. She has given me cold cranberry juice. I have also been consoled by a couple from Bangladesh in traditional dress. They have told me their son, who is nineteen, is in a similar situation, and they have prayed for me. These are memories of love from strangers which have sustained me, in retrospect.

Soon after, I have said good bye to Susanna. I have held her hand and said this: “If you can come back, I will be waiting, but if you need to go I will understand. I will always be with you, and I will never forget even a minute of the time we have been together”. A man working has overheard me, and has softly mumbled “Oh, God!” and is crying.

In the time since, I have realized that if you witness someone cross over, this is a part of your mission. This is intimate, and important. If someone tells you about being present for death, this is sacred as well. These are the thresholds, the places where we can feel our true home.

My daughter was here, and when I was sitting in the hallway, having been given the cold cranberry juice and the prayers, I watched across glass as people who had come running tried to start her heart again. They tried for a long time, but she had to go. She died. This did not happen because I am a bad person. It just happened. I could not save her, any more than the sad brain surgeon, and I survived.

Fall again, and Susanna’s brother has just called from downstairs to inform me that he has lost a tooth, a molar. He is four feet and nine inches or so and will be joining his school band. We are here and Susanna is there, for now. We will see the leaves turn, because that happens on this part of earth. We will listen to them fall, crescendo, and be gone until next time.

Losing My Religion

My year of graduate school is almost over, the end in sight and the glorious weeks of steamy weather and solitude coming into view. I have rediscovered television again, already. Except for I Love Lucy or Roseanne when I am drinking my coffee in the morning, I have not had the time or patience to watch anything. I have settled into The Handmaid’s Tale on this long weekend and sucked the last drops out of the six episodes available so far, getting lost inside and looking up details about the cast, production and soundtrack on my phone during the commercials. No wonder I do not watch TV like I used to, this is how involved I get.

I read Margaret Atwood’s novel during a television- free time in my life, when I read books and went places and spent more time with people in cafes (pre-internet). I checked it out of the Brooklyn Public Library in Grand Army Plaza, where I used to hang around when I had no money but time to spare. This was before I met my S.O. and had a family, and before I knew firsthand about life ending in death. I did know about the dark side of human nature but I had a narrower perspective on it.

So much to become irate and disgusted about in the story. But this is a story of the world. Fiction, but with real correlations. I do not watch this and feel grateful to be free as much as I feel revolted about how humans full of greed and evil damage each other. Freedom from this is not a privilege, abusing and exploiting others is crime. The world is a hotbed of corruption and unspeakable abuse, and this seems to have always been true. Sometimes I feel done.

When the scenes turn, in the first few episodes, to times “before” and “after”, I follow the emotional shift. I too have had my little girl taken from me, and console myself in reverie of carnivals and making pancakes. I want to hate the government, or someone, for this, but my enemy is none other than death and destiny. They are here and now and not dystopian. Death and loss are everyone’s fate. But eventually I do feel grateful that I have experienced this loss in the world I live in, where I have a job and home and a good deal of personal power.

I live with my beautiful, healthy surviving child and a partner who loves me from across cultures. He has seen things which I cannot understand, and never will, about human nature and injustice. These are his stories to tell, and sometimes he tells them to me. None, though, are as heartbreaking as what we have survived together. The cruelest part of the universe is the part which gives you a child to love and then that child is taken away. We found each other and had a son and a daughter. Susanna’s life was very short, and we remain.

Is life worth fighting for? I know it is. Whatever falls in my path I do believe I have a purpose, and I am equipped to follow it through until the last day. During these last years of my life, during which I have been bruised and broken, I have lived the most real days. Life is temporary and difficult and painful, and no one here gets out alive. Still, there are things to be done and justices to be served. And, in the bigger picture, there is a plan which cannot be seen from this plane.

Last night I was involved in my Hulu marathon, and S.O. uncharacteristically came upstairs and offered me one earbud attached to his phone. “Listen to this. This is beautiful. Maybe you know it”. It was REM’s Losing my Religion, and that is beautiful. My man has discovered the same band I discovered I high school, on this night so many years later, in a language and country which are not his first. I can only say to him that they are from Georgia and do not play together anymore. I want to explain how Michael Stipe’s voice makes me feel when I hear it, but words escape me.  He does not need words, he hears it himself. Because of these moments I am hopeful. Sometimes I know we will survive.

Brave Face

Busy lately, and suffering from too much Brave Face. The face that masks pain in order to get work done, in order to make an appearance when I must. I wear it only sometimes for others, more often for myself. I want to be more whole than I really am.

There is a small piece of construction paper taped to the kitchen window in front of me, about the size of a playing card. At one point it may have been a mauve color, now faded to a dusky yellow about to blend into the stickless masking tape framing and attaching it. On this paper is a flower, a daisy or perhaps a sunflower, sketched in ballpoint pen by Susanna. There was a sister piece beside it before. This disappeared at some point, but there is a smudgy residue near where it once was. The sister piece had a poem written on it, some variation on “rain, rain, go away…..” My two children had constructed this arrangement on a rainy summer day on which they wanted to go out and play. At the time, I had no idea how long it would remain, or how I would feel looking at it tonight. We can perhaps only envision what we can handle.

There will come a time when this house will not contain the remnants of my daughter living here. There will be a time when nothing belonging to her, or to me, or anyone in my family, will be here, at least in this physical plane. Maybe another dwelling will rest upon this plot. Maybe, many things, I don’t know…….

Last night, I dreamt that my son and I were on a summery back porch, visiting a new blonde family with many children. I have no idea why they were blonde. Maybe because the scene was a bit Barbie-ish. This was a happy dream. And, a little girl climbed into my lap and fell asleep face down across my chest. I felt her warmth, the feeling I have been needing. Susanna. I am deeply sorry that I had to go to sleep to feel that, but she was there.

If there is not a rainy day, there is not a song about one. Without this absence of her, which stretches out into unthinkable depth and length, there would not have been a her to love. I put on the Brave Face, because I do not always know how to explain this to people. Pain and love intermingled, this is what I really want to be talking about. It can be challenging to focus on what seems mundane, which almost looks like everything.

I no longer believe I have to resolve anything before I motion forward. I make as strong of a presence as I am able. I speak with all I can muster of what is real, and right, and kind. This world is not for the faint of heart. In spite of how difficult it is to live sometimes, somewhere inside of me are endless fields of wildflowers. Meadows and mountains, and eons of hope. Life is fleeting but love is real. This much I owe to my Susanna, to speak of her and us while our presence is still remembered. Life is short for everyone, but was extra short for Susanna. I will hang on and go about things with four eyes, four feet, two hearts, two souls. See you in the flowers, my baby.

War?

It is the biggest battle, the battle with the self. I see it everywhere. People fighting, obsessing, causing strife. People working hard to create a pretense. I see it, on a clear day, as the fight we come here to witness and attempt to resolve. I especially include myself. I want to be finished, emerging as an airy wisp of completion. I have little interest in being a warrior anymore. Yet here I am, sitting on my horse for another day, holding a sword. I have come here with things to do until the last day, and then I will do what comes next, eternally.

I say this because no one has told me not to be sad anymore. No one has told me they are tired of hearing about my little girl, or the pain which does not follow me like a shadow, but more accurately lives within all of my cells as a part of me. Maybe, people might think this, which is not of my concern. Maybe, some people have long ago moved on and remember Susanna as an occasional passing thought. I think about her every minute. When I do not know I think about her, my heart thinks for me during the seconds in between. This is my job because I am her mother. This does not change with death. She is outside of the line of vision for most people, but never for me.

Last night I dreamt that Susanna was here with me, in our place of strength in the kitchen. I consider this part of my kitchen a power vortex. Here, we used to bake and cook together as she stood on a chair. We opened the jars of herbs and spices just to inhale. The magic surpasses the recipes. Supernatural events have occurred there which I will save for another day. Instead, dwell on the picture of Susanna sticking her hands into flour and savoring what that felt like on her fingers.

During the dream, I knew she had died but I had never lost sight of her. I was explaining this to various people, this fact that I could see her all of the time. I was greeted with some perplexed faces but I was heard and believed. The question I had was: “Can’t I send her to school? I can see her. I can touch her. I have not lost a thing.”. When I woke up, only for a second, I saw a shape by my bed. I do not know in which dimension it was, but it was Susanna. She was there to show me that she did not go away, and I believe her.

There have been many times in my life when I have felt like it was my purpose to shine pure hope and optimism over others, exuberantly. I love that. I am proud of that. But I no longer wait to be restored to something I used to be. While we are all still hanging around in linear time we go forward, we cannot unsee what we have seen. We cannot return to an earlier state without carrying all the wrinkles and the history. I will rise to the challenge of whatever battles present themselves today, and my biggest hope will be to battle with grace. Like a sage. Like a crone. Like the person who has grown streaks of silver hair and has cracks in her heart, like me.

Love, Not War

I am still waiting on joy. There is a type of peace coming intermittently, rolling like waves together with grief. The crests sometimes peak higher than they used to. My tendency toward hope and optimism has survived and proven itself. The sun comes up every day still greeted by me. But I miss Susanna always.

Memorial Day seems like it should be a smaller holiday in the scheme of the calendar year, but a holiday still and difficult. In my dream universe I have a rambling farmhouse full of kids and extended family. A combination of The Waltons, Eight is Enough, a hippie commune and the seaside home of Jenny Fields in The World According to Garp. Memorial Day there includes marching band parades, watermelon, strawberry shortcakes and a patriotism which allows for pacifism and feminism. The inhabitants have free hearts and souls and are not crippled with sadness or ill will. I have mimicked this fantasy to the best of my ability in my real world home. Yet I do much better on an average day without the perceived societal pressures.

Summer is coming soon. I look forward to the promise of peace as I have more time for reflection and solitude (and more Susanna time). The truth be told, my school year life in special education is rife with commotion, long days heavy with human interaction and unfortunately violence committed by children. I come home to a partner and son who love me and need me to show up for them. I look forward to some more time to ponder and be.

When I was a child, my family’s many holiday traditions included a huge party, a parade during which kids strung streamers through spokes of bicycle wheels, the intentional shaking of grape and orange cans of soda and planting flowers for relatives at neighboring cemeteries. The cemetery was not sad for me, as I did not yet know anyone who had died. Forgive me, but I do not want to remember death today. I do not want to remember that my little girl was buried somewhere in Brooklyn. I do not want to go to ceremonies to hear guns fired and I do not wish to dwell on fighting and war.

I do want to remember things though. On Memorial Day and every day. Remember that we are here to learn peace and love via arduous pathways. That we are all ultimately part of a whole. That my daughter and all of the spirits and ancestors are a thought away, loving us and helping us. War and pain are real but so is love. And love lasts forever.

The Wheat from the Chaff

There is no goodbye. Not in terms of Susanna. Two years ago yesterday was the day my daughter was buried during a day-long driving rain. I was hoping she would like the chapel with stained glass, and the winding pathways in the picturesque historical cemetery. We invited a clergy person who asked my son to pray for his sister and spoke some words to everyone which I do not remember. I believe he waved a censer with fragrant fumes. I hope it was frankincense, a scent which has since come to me while sleeping and become my favorite healing incense. I remember him chanting and speaking of returning to Jerusalem. I imagined a puzzled look on Susanna’s face, my daughter who lived her whole life in Brooklyn.
When it was time to leave that chapel we were asked to drop roses onto the white box. I knew no one wanted to be first, so I went up and placed mine immediately so I could go home. I rode in a limousine with family and friends as we left, but my soul had bailed and run away already. Cemeteries are for ancestors, dead people. My daughter is not there.
Everyone’s life is unique, and so is everyone’s grief. To me the ground is a place to plant seeds and sit on at the park in May. When I smell soil I feel a reverence and a deep sense of mystery. Somewhere in my consciousness I know we come from the earth, our original mother, but I can only handle scratching the surface. When I want to be with my daughter I am more likely to find her by opening her dresser drawers. This is where I have washed and folded all of the clothes I bought her. This is where I am still her Mom.
Do you know what I can say good bye to? Things I no longer want or need. Petty concerns over societal achievements. Activities I have pretended to like because I think I am supposed to. False security. Self-criticism and messages of self-doubt. The sun is slowly creeping back into my life again, and I am here to greet it however it appears as someone who is free. I am forever changed and even forever sad, but also terminally dedicated to what is real and important. “Separate the wheat from the chaff”. That line comes from the bible but I remember it from the David Lynch film, “The Straight Story”. It is a fact based story about a man, too old and blind to drive a car, who rides his tractor to see his dying brother. It takes kahunas, this life, no time to waste. But all that is worthwhile does not die.