Other People's Rooms

Sometimes my mind goes walking around in rooms that do not belong to me.

I find myself wandering in a life we never had, wondering what it would be like for all of us now if Willa were still alive. She would be three and a half; she would be going to school. I see someone putting her on a bus. I see her in classrooms playing with scraps of felt. Sometimes she has Costello Syndrome and sometimes she doesn’t. Because when you start walking in impossible rooms, impossible scenarios are explored.

What if Willa had been born without Costello Syndrome? What would our life be like then? The mind enters one room that leads to another and another and another. Suddenly it races from cancer and death to living and normal, and deep investigations into what that could possibly mean because I really have no idea. Other people’s rooms wherein Willa has friends and they play with dolls, wherein I have slept, where we go on vacations as a family and Willa talks and walks and eats and sleeps and cancer is an impossible word with no meaning or application. It feels so foreign that the doors to these places close very quickly. Not my room. Not my life. It is almost as if these visions were not meant for me and so my mind catches a glimpse but will leave them behind.

Then my rooms come into focus, the rooms wherein the memories live. I see my girl, as she was, as she will forever be: smiling, in her red scooter powering across the kitchen floor, in her bouncy seat laughing. I can still feel her hair under the palm of my hand. I can smell her. I can hear her say mama. I feel her all around me.

But my mind closes the door on these rooms quickly too. They hurt so much to visit. Because they are not real. They are memory only and it is still too soon to be comforted by them. But I know the day will come. I look forward to when I can walk freely in the rooms that are mine, amongst the memories that will give me strength.

For now I find comfort in the fact that the life glimpsed in other people's rooms, the life wherein Willa does not have Costello, means so very little to me. It does not make me sad. It does not hold my attention very long. It's a digression without lasting effect. This was not always so, but I learned to give up that which I could never change. Willa's death is different. Of course. I wonder if it is a an unchangeable thing a parent can ever learn to accept. I don't really think so. But again, perhaps you learn to incorporate it. To sew it into your folds. To let it live in your heart as a certainty that gives you a different power. We'll see.

House and Home

We have taken a small apartment in the city. A place with white walls, scant square footage, not enough space to fit many things. There are linen curtains and large windows in a bay and the bedroom is an alcove at the back of the room. It’s perfect. It’s also a place Willa never saw. It feels strange to live in a place without her. It feels on the sneak. She touched nothing here. There is no echo of her laugh or her cry and the floors, though having been walked by many, never felt her foot.

It’s clean of her.

I love this place.

Then there is the house. All Willa. All echo and foot, and memory and loss, and wishing for something that can never be again. The loss keeps. A friend told me that, it keeps. It truly does.

The house has become such a vessel for me. It isn’t a house anymore. I fiercely remember the first time Colin and I ever set foot inside. We had been searching all summer. I found this place. A small old farmhouse with a large yard. It had three tiny bedrooms and as I walked through them I could see the future children. I saw the space in the living room where the Christmas tree would go. I saw all the paths of our future, the future I felt so assured of, spread out from the door ahead of us. I said to Colin, “our kids will be proud of this house.” I was proud.

I got pregnant a year later and then there was Willa. She filled the rooms with herself, her story, her fight. She saturated the driveway, the garden, the large yard with her smile and her adventures in them. She hated the feel of the grass. She loved the water on the deck in the small inflatable pool Memorial Day weekend. She stared at the magic of the Christmas lights on that tree. She gave the house to me in a way I had never expected. She opened it up to us, writing the history of our family. She made that house our home.

In the year after her passing I would sit in it, alone. I would listen to the shadows of her voice. I would see memories flash all around me. She was there on the kitchen floor as I prepared dinner. She sat on the couch as I passed by. She called from her room late at night. And her room. Well, it positively hummed with her. But she was not there and that absence built its own story. The loss created more layers in our family and it turned our home into a gravestone. Her absence stole our home from me.

Now we are in a new place. Though the house still belongs to us. It stays in Pennsylvania. I can feel it, even from here. I can see it as if I were looking at it. It is in my marrow. I can hear it move in the changing temperatures. I see the leaves falling from the tree next door. They always turn yellow in the fall.

That first fall after she died I watched that tree change everyday. Horrified that it dare shift. Shocked that the world continued to turn on its axis. I hated that tree. I hated that it was proof time was passing without her, that we were to enter a season she would not experience. I hate that this is true still. I want to strangle time. Kill it so that it will not force me forward. But I haven’t the hands for this task.

So we moved.

There are trees on this little street. I have no idea what they will do in the weeks to come. They will surprise me. I surprise myself by how much I love this thought. It does not make me feel guilty. It makes me feel a little more free. Not from her, not from what lives in Pennsylvania, not from the crushing everyday loss. It makes me feel free not from anything but instead for something. I am open to the possibilities that stretch out before me. I know there are new paths from this new door. I cannot see them yet. My eyes are still too set to the dark, but I know they are there. I know they wait. And I know more than anything in this life that when I finally find the strength to walk out on them she will be with me, not as an echo, not as a ghost, but as my girl looking forward to see what new adventure lies ahead for all of us.

For the Concerned

Recently I have received a few comments from readers deeply concerned for my mental health and well-being. I honestly believe they care. They are reaching out to me because they see something disturbing in my posts and I feel the need to address this concern and provide a little context.

Firstly, thank you. Thank you for reading my posts. Thank you for coming here to see how I am and to take time out of what I know to be very busy lives to reach out to me. I am deeply grateful for the concern as I have been so deeply grateful for the support I have been offered since beginning this blog.

Secondly, I think it important to note that this blog began as a place for me to process my feelings and thoughts when we unexpectedly had a daughter with Costello Syndrome and all the very many special needs that accompanied it. It grew as she grew and developed as events in our lives changed, first with Willa’s cancer diagnosis and then her death.

Over this past year I have written about the grief I have been left with in her absence. I have used this blog again as a way for me to work through my thoughts and feelings. To explore what I wake up with every day, to try and wrap my head and heart around what is impossible, this loss, this overwhelming despair that comes when the most precious person you have ever known dies in your arms.

Thirdly, this blog is not all of me. It does not tell you that I wake up every morning at an early hour. It does not tell you that I work out every day, that I eat well, that my husband and I laugh at the dinner table. It does not say that I have been in therapy for a year. It does not list the many ways I daily help myself, help my husband and help all those around me navigate this new path. It does not seek to offer platitudes, nor does it offer answers for where there are none.

At the same time, I do hope something of my heart shines through. I do hope that the light that Willa left us with has not dimmed, that her spirit and the strength and power she gave me still find their way to these postings. Because I feel it. I feel it very strongly. It is exactly why I have not driven into the tree, why I have not crawled into the bed, why I have managed to avoid foreclosure, divorce, drug abuse, and the clinical depression you fear.

But let me be very clear about this. Willa’s loss is a nightmare I wake up to every morning. Willa’s loss is the weight I labor under every day. The tears are waiting to fall at every moment, the screams in my chest bulge beneath the surface. I soldier on in my life because she would be so incredibly disappointed in me if I didn’t. But I soldier on too because she taught me the value of life. She taught me that this thing is a gift we are not all lucky enough to enjoy for long. So I get up, I get dressed, I eat, I work to propel myself through my days the best I can, as a testament to the love I feel for her every minute and the strength I have to honor that love.

Another commenter asked if I can do something positive by which to remember her. If she liked animals, then volunteer at a shelter etc. I think it is a beautiful suggestion and very helpful for so many people to make something of their loss.

Willa loved to read. She loved books. Willa loved books from the moment she was born. And so this is what I do. I write. I write to bring myself closer to her, to talk to her, to throw the rope across the expanse that separates us. I write to bring her back to this world, even if for a moment. I write to make her real again, to introduce her to those unfortunate enough to have never met her. I write to keep her alive, and myself with her.

When you lose a child you die. When you lose a child with special needs your life dies with you. Your future. I am working to rewrite my story to allow for the change. But it is going to take a long time. It is going to take the rest of my life. I have made peace with that fact. It is the only honest thing I know right now.

When you lose a child you do not go to therapy to find a solution. You cannot fix this problem. You cannot find a diagnosis and therefore, there is no cure. You go to therapy to develop methods of coping. You go to talk. You go to say things you cannot say anywhere else. I fear that I say too much here. I fear that my grief is overwhelming and difficult to understand.

But I cannot give up on the task at hand. I write invisible cities because I see the need for a voice to come out of these places, even if it is ugly. I see the need for us to be able to talk openly about things that are never discussed. Be it the realities of having a child that is never and will never be like other children, whether it is about the stares we catch, the conversations we overhear about children being better off never being born different, whether it is about babies with cancer, or whether it is about the ugliest thing of all, the most unnatural of realities, the death of a two and a half year old girl who smiled and blew kisses up to the moment she died.

We need to be allowed to talk to each other. To hear each other. To listen to the experiences of mothers and fathers who live this every day. We have to offer support to each other and we sometimes have to offer the suspension of advice. Because I can give you nothing but my own story. I have nothing to say to your grief, to your loss. I have no answers for your struggles or your fears. All I can give is another voice and a hand in the dark when you need it. You have given that to me too, just by letting me exist and certainly by letting me say what I need to say. I will not censor myself here. I cannot.

Because readers I censor myself every day in my life. I do not tell people about my daughter if they do not ask. I do not talk about my pain with family members because they are so incredibly scared for me. They want so desperately for me to be happier again. And because they hurt so deeply themselves. I do not talk about the shocking and unwavering pain I feel when I see a mother yell at her kid in the grocery store or the knife in my heart when I see children playing. Because it is too much. It is too much to tell people, to bring them into. It is not fair to compare the daily concerns of parents everywhere to my life now. We live, indeed, in separate worlds. So I will continue to write from my invisible cities. Because I have to.

Do not worry about me. I have learned to take on my grief, to wear it like clothing that cannot come off. It is not always a terrible thing. It keeps me warm. It even makes me feel most like myself. It is the authentic me, the honest one.

Remember always that grief is a ridiculous burden. Most so because of how impossibly individual it is. No two people will ever bear it the same way. No one knows what another really feels like, how it feels in their respective heart. Remember too that there is a terrible myth that time heals this. It does not. Time does nothing but move forward. There is a distinction to be made between healing and acclimatizing. One becomes accustomed to the hurt but it never fades, it never disappears. Any parent who has lost a child will tell you, that there would be no greater loss than the loss of the grief, it is the connection to our beloved children. It is the pain in our side from where they were taken and though it may be brutal it is our precious burden.

Thank you. Come back and visit me. I promise to remember the light, maybe even to write about it more.

All in due time.

In the House Now

I have to pack the hearts away for a while. They beat too loudly. The windows vibrate with their feeling. I trip over them on the way down the stairs, they spill from the cupboards to pool on the floor. They multiplied so quickly because there was just too much feeling. There was too much pain. So the one replicated, over and over, trying to take the pressure off. But everything stifles. I need a break. I need quiet and the space to not feel so much. I need the brain to reassert itself. Am I trading one problem for another? What will the brain do with this information? Will it even know how to process the memories, what we saw, what we feel? Maybe I have to just let it have its shot. Take a shot brain. Deal with this. Will it sit in the middle of the house like a pip? The stone in the center of the fruit? Will it dictate plans and strategies and methods for coping? Will it attempt to parse out a before, a during, an after? Perhaps I should pack everything away. Pack up the kidneys, the lungs. Put in small boxes my fingers and toes. Clothe my arms with poster tubes and lay my legs in storage bins that can slide under the bed. I’ll put my head in the freezer. Why use any of it anymore? What good is it to me now when she is gone and I can no longer feel her in my arms, no longer make new memories for my heart, for my head, for any of it, to feel at home.

The State of Things

Grief has made a mute of me. I have not been able to talk. I have not been able to be who I am right now, or rather, to share who I am with the world. I hide behind a face I do not recognize.

Sometimes it feels like I have been shattered into bits. They rub against one another, shard to shard. The scratching and further chipping of the pieces causes sharp pains, makes terrible noises. There is dust accumulating on the floor and tabletops from the friction. Dust of me. Dust created from where once I was whole.

And then I am a stone. I have sunk to the bottom of the lake. I blink. No one sees me. No one ever will but the fish, other tenants of this murky water polluted with stagnant grief.

I’m having trouble moving forward.

I’m having trouble wanting to move forward.

I’m lost in the woods. Around me are the violent pops of boughs breaking. The grotesque lullaby rings in my ears. Rockabye baby…on the treetop…when the wind blows…

When I was a child I fantasized about coming upon rooms forgotten by decades of family life. Old nurseries draped in covers. The odd shapes of things obscured beneath dusty linens. There is the rocking horse. There the dollhouse. It seems like it would be treasure to find something like this. Now I have it in my own house. Her room, a monument to our loss, a place so difficult to enter I hold my breath as I pass by the black door. There is no treasure in that room. The treasure is what was lost.

I keep getting sick.

I keep taking antibiotics.

I haven’t had this many courses of antibiotics since I was a strep-prone child.

Nothing is curing me. I cannot be helped. I went to the doctor again and they told me to rest. Her eyes were sad as they looked at me. Her eyes said everything I already know. I’m sick because my daughter died. I’m too sad to be well.

How am I going to clean out your things?

I am in so much pain I think about driving myself into a tree. Just so I can see her again. Just so I can hold her.

I am in so much pain I fantasize about walking into the ocean and letting myself be swept out to see. So I can talk to her. So I can feel free of the loss.

I am in so much pain it keeps me anchored to my life. There is no escape. I cannot cut myself free from this. I am on a course and must follow it through. I am committed to being alive. I made a promise.

Can therapy help?

Can moving to New York?

Can Pilates?

Can nights out?

Movies?

Talking?

Writing?

Is there any help? Is this possible?

Or can only you assemble your pieces, learn to breathe underwater, fashion new homes out of forest boughs? Certainly only you can discover the depths of the pain, the grief, the loss. And only you can make it into your life. Break it with your hands in a battle of molding.

What will I create?

Molecules

Willa was in treatment for cancer eight months before she died. We knew she was going to die. We knew before we began treatment. We fought it: in our hearts, in our thoughts, in the choices we made for her care.

We fought the truth that she would die in everything we did over those eight months. I bought her clothes. I made plans for a family vacation to Massachusetts with all her grandparents. I found books I knew she would love when she was a little older. They did not stop the clock however. I have shoes in her drawer she never grew into. We never made it to Massachusetts. The books have pristine bindings and collect dust on the shelf. She still died, or I should say, regardless.

Before the morning of July 9^th I was haunted by what that day would be like. I thought about the possibilities, the scenarios, the furniture in the room, who would be home. How would she die? What would I do? Would I crumble? Would I scream? Would I just go dead? I wondered all the time about that day, what it would bring, how we would survive it. It consumed all my dark hours at night. I was haunted by my fear, my panic.

And then that day came.

It was a beautiful day, sunny, summer. The kind of day people wake up and are thrilled about for all that it promises. It was a Friday. And our daughter died right in front of us.

I remember thinking, “so this is it, it’s finally the day. “ But this means nothing. You don’t even know what’s happening. And you won’t for a long time. Sometime after the funeral, maybe a week or so after, that’s when you start to catch up. It’s the worst time. Because the pain is a kind of cushion. You go into a coma of grief that muffles what you really feel. You are barely even functioning. But there comes that time, about a week after the funeral, when your body starts to want to catch up. When the truth of what happened starts to come into focus. Then you’re really in trouble.

We were in Maine when that happened. When I am in times of worst pain I go to the sea. I grew up on the water and must have learned it there. When I am most in need of care I have to be where I can see the ocean, sit next to it, hear it, smell the salt and perhaps be reassured by its incredible, permanent power. This force that is so much larger than me.

This time the sea was no match for my grief. But I am glad we went. I was glad that when I was first feeling the truth of Willa’s death I was not home. I was in a place where I could just let it wash over me. Let everything wash over me, in wave after punishing wave. For me it had to be this way.

You realize that on the day she died there were still molecules in the air that had been in her body. That we were in a room filled with air that we were sharing. That her breath still hung about us, holding us. Its last embrace. Things still smelled of her. Her voice was still in the rooms. Echoes of her life immediate.

These molecules are all gone now. We have only ghosts of all these things. The loss is stupefying. All the preparation, the hope, the blind desperate hope of parents who do not want their children to die, the clothes that were never grown into, the books unopened, all the things that lay for us in a future we knew we would not have eat at me like cancer.

I live in Pennsylvania. There is no ocean here. I want to go to the sea again. I want to look at the water and talk to Willa. I want to feel the spray from the waves on my face and imagine that they are a kiss from my girl, salty yet sweet and powerful. So very very powerful.

The Invisible City of Lead Weights

There used to be a lightness to me. There were even moments when I became a dirigible and viewed the world from a lofty effortlessness that came with happiness. Things used to be easier for me, like walking, like moving my arms, like breathing and showering and eating and talking. Now when I speak my words fall on the ground like stones as soon as they leave my mouth. Attached to my arms, my legs, my fingers and ankles are lead weights. I wear a weighted jacket that compresses my chest when I lie down. I can feel it crushing my ribs. It makes it hard to sleep.

Where once there was a relationship with gravity that allowed for the occasional flight, now there is only the pull of the earth, holding me firmly in place. My feet have to be peeled off the ground. It takes great effort and so more often than not I just stand in one place feeling myself sink into the floor, the dirt, the sand. There are deep impressions of my feet in front of the sink, in front of the stove, in the shower outlined in cracked porcelain and just inside the door of Willa’s room. I stand in these places and cannot move.

I used to see the world around me, but my eyes are too heavy now. The tears that constantly run from them are pieces of marble. You hear them clink clink clink in the sink, you see them collect in a concave depression on my pillow. They blur all vision.

I used to see people who stood in one place. They looked like lampposts, gravestones, markers for other people to navigate around. They just stood there, in front of the laundry, at the outskirts of a party, at the dinner table. I could not then see that they too were held down by lead, burdened with immeasurable weight. Just trying to remember how to untie the strings, or, trying to discover how to make the knots tighter.

In the Invisible City of Lead Weights we are never alone, though we have no idea of this. Our thoughts do not travel, and none come to us. The air around you grows stale without use. From overhead comes the faint sound of propellers and you just hope that one day you will be able to fly again.

Heart Walk

Today I take a walk in my heart. Crawl through vena cava and ventricle. Revisit all the old places. I feel my love for you all around. It pounds in my ears. I take a seat in the chamber and watch the scenes from our life as they play out across the walls. Blood cells slip through my fingers. In the air they flit and hover like ash, or petals. Remember when you were inside me my heart was right above you, an apple on the bough? Your heartbeat was the first thing we heard, no, saw of you. The senses are befuddled translators in such subterranean things. I close my eyes and let the atria beat out the code. It goes over lines made of vein, filled with ash and petals. I must be careful. I am a platelet. If I stay too long I will seal something that needs to be kept open. But you, you are my heartbeat, insisting you are still here.

All the Things That Died

Willa died. Then our car died. Then our phones died too.

A month after we were on Plum Island. It was hot but perfect and August. B. hadn’t seen me since all this and she took me around the rented cottage, pointing out all the things about it that fascinate a three year old. This lasted a while. She knew that Willa was dead. She knew that it was something very big.

At one point we were in a little room off the living area. They had stored their bikes in there. Out of the window you could see the driveway. She pointed at her car. “Our car died.” She looked at me. Her eyes widened. “Or car died too” I said. She had started to really circle the thing now. I knew it was coming. She had said the word.

We left the room. Moments later we were all in the kitchen, Colin and I, her parents. We adults were pouring wine and opening bottles of beer, salting fish to wrap in aluminum foil for the grill. B. said, “Willa died. And she’s not coming back.” Her eyes panicked. She had said it in such a strong clear voice. It was a phrase that had been worried into diamond hardness in her mind. It came out a gem, uncomplicated, sheer, ruthless in its beauty.

I nodded. “That’s right honey. Willa died.” B. ran to her mother’s legs. She buried her face in bare knees and cried.

I remember this all perfectly. I remember the stunted sound of the waves coming up over the dunes, the radishes next to the salt and butter, the phones ringing in other houses. I remember the light. Perfect summer night light, still warm, moving toward orange and pink. It would be light for a while yet which felt wonderful because it would be cooler but not dark. The dining room table was wood. It was beautiful and used and dark and covered with sand and wet and crumbs. I remember the smell of the salty fish. I remember the wine in the glass, water forming to slide down a stem I hoped I would remember not to snap in my fingers.

These are memories made after Willa died. I will not have any memories of Willa that are new. Only memories created around her absence. Colin and I have photographs, videos, toys, clothes, medical records. We have the crib, the car seat, the highchair. But we have been cut off from bringing Willa with us into our future. She won’t touch anything new.

Willa died. Then the car died. When we took the car seat out of it her sunglasses were revealed. That’s where they were. There were stains on the upholstery from the times her feeding tube came detached in transit. And we left the car. We bought a new one. She never saw the new car. There are no stains in it Willa made. It is our car now, Colin’s and mine. Not Willa’s.

Then our phones died too. Colin and I used our phones almost exclusively to take pictures of Willa and video. All day while he was at work in the city I would send him updates. So he could see what she was doing. Because she was so funny. Because she loved to be on camera. Because he missed her so much. Our phones were choked with images of her. Then they died. We had to buy new phones. She is not here to take photos of anymore. There is no new video. She never held these phones. She never saw all the wonderful things they could do. She would have wanted one. I know. She would have thought they were absolutely magical.

Someday we will try to sell this house. We will move to a place she never lived. Those walls will not echo with the sounds she made a long time ago. There will be no phantoms there of memories. She cannot touch the taps. She cannot bathe in the tub. She cannot make marks and stains and crumbs because she died. And she’s not coming back.

It scares me because there are my memories, the ones that live in my mind. And then there are the photos, the video, the pictures of her. Which is more reliable? The pictures start to invade the place memories live. Do I really remember that or am I making it up based on an image I have of her? Which is real? Which is more real? If all the memories become those of the static page, or the 30 second video, will I forget the more nebulous ones? Will they take over and destroy what cannot be corroborated?

I look at the pictures. There are only so many. There will only ever be a very specific number. That will be it. I can get no more. No new pictures will bring Willa into the future, will flesh out her life, will expand the time we have with her, will break the incredibly sharp limits of her time here. We only have so many. I am so scared of what that means. I am so scared of thumbing them to death. Of working the images over so many times that they take her away from me. They take away my full, rich, deep memories and replace them with this limited version. And again, that means that she really is dead and gone. She isn’t coming back. I can never have more. I will never have any more of her.

We just saw B. before Christmas. She loved the locket I was wearing, the one with Willa’s picture and a lock of her hair inside. “Willa’s hair was very short. Mine is long” B. tells me. “When she grows up it will be long. “ For a three and a half year old just because she may never come back doesn’t mean she doesn’t still have to live by the same rules. Hair grows.

And so it does, even on the dead.