Living in Invisible Cities

Other People's Rooms

2011-12-04T13:25:00.005-05:00

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

2011-09-22T14:25:00.002-04:00

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

2011-08-11T13:03:00.001-04:00

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

2011-07-19T12:27:00.000-04:00

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

2011-07-19T12:11:00.002-04:00

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

2011-02-06T17:32:00.003-05:00

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

2011-01-26T16:15:00.001-05:00

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

2011-01-18T17:09:00.002-05:00

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

2011-01-02T15:23:00.003-05:00

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.

Questions and Answers

2010-12-05T15:04:00.003-05:00

And then there are the questions we must answer.

How do I answer the question, “Do you have kids?” Actually, I know exactly how to answer that question. The problem is what that answer does to the asker. What it makes them feel, how it makes an open face turn into a clenched fist. Never in my life have I seen this incredible transformation occur in people. And of course, I completely understand. I understand so much I don’t want to answer. I don’t want to see the terrible effect of saying, “I had a beautiful daughter named Willa, but she died in July.”

When you are pregnant a ripple gets sent out in your local air. It enters the consciousness of everyone around you. How can it not? You are a walking beacon of impending arrival. Days are counted down. Excitement builds. So when the baby is born everyone asks about it. It’s wonderful news.

When Willa was born she very unexpectedly had Costello Syndrome. And when the questions came one after the other, “how’s the baby?” we had to learn the answer. We had to figure out ourselves what it all meant. The answer was not so simple. The question brought up things people did not necessarily want to hear. “She’s wonderful, she has Costello Syndrome, but she’s a joy.” It seemed there were endless caveats. Nothing could be clean. You couldn’t just say, “She’s great!” That would have been a lie. Willa had major medical issues and would have for her entire life. Willa would have never lived independently. There were many things that Willa would never do, have, say. Of course none of this means anything now.

So you learn as the parent of a child with special needs to make it ok for the askers. You employ every trick, you sell it. You use humor. You master the blithe toss of heavy words. You work to assuage the fear, the embarrassment and the discomfort of others because you want them to accept your child. You only speak about the hard truths with those who can truly understand: the other parents, the other families. You do everything you can to protect your child from judgment, starting at an impossibly early age. You start immediately. You start with how you answer the question, “Oh! You had the baby! How is she?”

And it makes you stronger. You start to embrace the fact that it really is ok. You learn yourself to laugh, to be blithe, to remember that she is, in fact, a joy. And then life takes over and you are a family, like any other, just with extras.

We learned so much about how to answer questions. We learned so many answers. We built an arsenal of them. I could summon and toss off the right thing to say to the friends, the casual askers, the close acquaintance, the family member. We learned to make the clothes that fit. And we ourselves were comfortable in them.

Now Willa is gone. She died. She died on July 9^th. And there are people in this world who do not know this. So it happens, often, in small talk, in chat with strangers when they ask me, “Do you have kids?” This is an answer that I cannot make fit. This is an answer that I can find no humor for. I cannot sell this. I cannot make the asker comfortable with the answer. I cannot create a world wherein the words, “We had a beautiful daughter named Willa, but she recently died” okay. It’s not okay. It opens a chasm between me and the asker. I have literally had people turn around and walk away from me without another word. I have seen the most paralyzing fear shoot into the eyes looking at me. I have seen pure panic and the desperate wish that they had never asked cloud the faces of too many people now.

I find myself talking to fewer and fewer people I don’t know. I am just trying to avoid the whole exchange. Because, helplessly, I cannot say anything but the truth. There are no options. To deny Willa’s existence feels like a total betrayal of my daughter’s life, her spirit, the fact that she fought so hard to live. Anyone with that much will to survive cannot be ignored. I will not let her be, not even if it means I have to suffer these exchanges over and over.

I wish we still observed a period of official mourning. Not in any gothic, hair pulling, chest beating way. But in the quiet but completely disclosed and obvious methods of wearing black, of not observing holidays, of muting happy occasions out of respect for the incredible loss in our lives. I want to sit out happy times for a while. I take no joy in life now. There is no joy in a world without her. I know I will find it again. Life is stubborn in its pleasures. But for now, I want to sit quietly. I want to wear black. I want everyone to know so they aren’t surprised by my loss. I want people to understand why I am the way I am.

When you have a child with special needs you fight so much for understanding. You want people to know what it’s like to live the life with extras. You want people to know what is the same, how very much is the same. And you want them to know how big the differences are so that maybe people get why you act the way you act. Why you may be tired, why you may be more appreciative of something infinitesimally small. You want people to look at you, to see you, to have a postcard from your invisible cities. Maybe they can never live there themselves but they know someone who has traveled within them. And they have had a glimpse of their workings.

When you have a child who has died you ache for understanding. You ache for arms. You ache to feel like a person again. You ache for the times when you felt like you lived in the world. When your child dies you no longer live anywhere. You are lost.

But Willa taught me everything about learning new ways of living, of recognizing new things in people, and most importantly myself. Above all else she gave me a world in which I had to learn new roads to happiness, understanding and connection. I will use everything I have to get there again. And I hope that one day I will be able to navigate these questions and answers of my life with a peace that is a testament to my beloved girl.

The New World

2010-11-09T12:47:00.003-05:00

I thought I knew about Invisible Cities. I had committed the roads between them to memory. I had the maps. I had walked the paths. I recognized the shifts in landscape, from the craggy sharp jutting shale, to the humid and salty marsh, to the long stretches that never seem to end. I traveled as a tourist. I lived in them for many years. I owned property. I fled. I set up shop. I bought postcards. I couldn't leave. I sat by fires.

I can see these cities perched on top of a flat disk, like the way we thought the world was shaped hundreds of years ago. I see my Invisible Cities like a platter, a feast. Heavy with every different person, laden with the challenges of a life with a special needs child, rich in the incredible bonds that tied everything together.

I have fallen off my world. A sea monster came and thrashed our ship. The masts smashed to splinters by cancer and death sending us reeling, toppling, charging over the side of the world.

But I am still alive, though she no longer is. I come to in darkness. My arms are empty. My heart is shattered. What was blood has dried to stone in my veins. She is not here. No matter how much I call her name. I am in a world without the sun, moon and stars. I have entered a place more invisible than I could have ever imagined. Ghosts are more real than this place. They have more life, more body, more to tell us about ourselves.

In here, (is it a box? an ocean below all other oceans? the space inside your mind where you lock the door?) time is measured in seconds since she died. The weather changes all around you but you do not feel it at all. My eyes are turning black from lack of light, the pupils pushing the iris out to the furthest reaches of a border, coloring all I see with black black black. I cannot see because she is not here. I cannot hear because it is too quiet. The only noise is the sound left over. It is the sound of absence.

When you are tumbled by waves, lost in the ocean, you must go limp. You must wait to breathe and then, seizing your moment, follow the bubbles of your life up to the surface, where you will be able to breathe again.

I’m going to drown here. So much of me will die. But I am new and do not know what that means. Because even dead I am still alive.

Willa's Eulogy; A Letter

2010-07-19T15:38:00.001-04:00

Dearest Willa,

I am at our desk sweetheart, looking out the window to the grass beyond, watching your birds and your bunnies, your butterflies and your flowers. The house is very very quiet, a mouse house, where all the sounds are littlier and the light diminished because you are not here.

Daddy and I want to tell you some things angel. This letter is to be read out loud in front of everyone who loves you because with all the hearts beating in this room the message will be carried further, will reach you on wave after wave of love and memory and feeling.

When you were home you generated our days. You were our rising sun, our endless moon. You made such light that cars driving by could see it pour out these same windows I now watch your friends through. The floors reverberated with you. You traveled over them a great explorer; from the dining room to the kitchen in the red scooter to the basement you would request trips to, to be thrilled by the darkness and cobwebs. The walls talk about you still. The sinks cry from the faucets.

Willa we have never met anyone like you. You taught us how to see the world with eyes forever changed. You taught us to see our lives with hearts expanded. Every challenge you were set you ripped through as if it were paper. Every hardship, pain, hurt, discomfort, limitation you bore with a smile and then a kiss, always a kiss as if to show us how simple it was if we remembered to just love.

You loved so much it made your heart very fast. You loved so much I think it wore you out darling. You gave us everything and we are so very grateful.

Thank you Willa. Thank you for signing “daddy” over and over, for demanding I bring you upstairs to the studio to see him. Thank you Willa for saying “mama” out loud, even the day before you died. Thank you for learning the greatest mysteries were contained in your MeMe’s purse, for knowing there are few better sights that Pop Pop in a funny paper hat. Thank you for taking into your home all the people who came to care for you, to help you, to give you love and to brush your teeth and to make you sit, then stand.

Thank you for making us better people for knowing you, because we are now Biscuits. We are better for learning about true effort, about true hardship. We are better for learning about true love, true laughter. You broke the boundaries of what could have been an invisible life, a quiet life away from the typical. You threw away all the maps on us darling. Then you made the new ones. We were all fellow travelers on your journey, we explored with you the life that could be forged from stubbornness, desire, hope, curiosity and sheer, pure joy for living. You had a gift for living.

Today we are here thinking about you. We are remembering your birthday party, your dress with the cabbage roses. We are remembering Christmas, Friday treatment, Block Island, the waiting rooms of the hospitals. We are remembering your smile and we feel again your light, we feel it continue to change us, to give us new energy for living, to forever change the boundaries we think we live with. Willa you are and will always be our rising sun and our endless moon. Willa you are and will always be our most precious girl. We love you.

She's Gone

2010-07-16T14:19:00.004-04:00

Willa Clementine Hunt
3-23-08 ~ 7-9-10

Pain Management

2010-06-22T05:45:00.003-04:00

Willa and I share pain like a stone. Hers is a boulder of tumor, all nervy sharp edges and colored like the ugly part of deepest mines. Mine was once jagged as well: the pain of fear, the sadness of diagnosis. It settled in my heart. It sank down to the bottom. Over the past two years I have worried it constantly so that now my stone is worn smooth, glossy, oval, almost polished into a gem.

Willa’s continues to grow, it conquers new territories, it takes on her whole body, turning her entire being to marble. It is as if the cancer were some mythological creature, if you look into its eyes it will turn you to stone.

The pain in my heart has almost become another heart, one that sits next to the heart I once had. This new one beats heavier, faster, with more purpose. It hurts, all the time. But it gives me the strength of new blood in the veins, more blood, more ache that tells me my body is still alive.

This past week we discovered that Willa’s tumor is growing again. The chemotherapy is no longer working. Her pain is increasing. Her pain is growing over the back of her head, arching forward over her face, shrouding her in its final awful act.

We have stopped treatment. We met with hospice yesterday. Willa is home and here she will remain. We will do everything we can to dull the edges of her rocky last weeks. We will smooth the path, pushing away the pebbles and gravel, making slick shiny slate out of this last part of her journey.

I can hear the blood rushing in my ears. I can see the blood filling my eyes. I can feel the blood pooling in my organs, overflowing, drowning me in pain. The gem heart splinters, sending off shards to every corner, constant reminder, constant hurt.

Willa and I have shared everything and now, in this new place, I realize she must go forward without me, without her father she adores. She must emerge from her shroud of cancer, hurt, and fear into a place where she will finally be free of all that. A place where she will have nothing to anchor her to the earth. She will be chiseled loose from her limitations and can join the stars, those rocks in the sky, those hopeful far off worlds upon which we gaze at night, in cool air, in hopeful dreams.

Her pain will end but mine will become a forever part of me. I will wear it always, on my face, in my hands, across the years and into the deepest folds of my life. I will wear it like an anchor around my neck, the largest granite boulder possible. But I pray that the effect of this weight is that I may never forget anything of Willa, not her smell, her expressions, her laugh, the color of her hair, the way she uses her fingers to touch, her fight, her grit, her incredible transformative power. Her pain will be shattered so that I may bear it for her and make something of it, use it to remember all the beauty that existed because she was here.

The Invisible City of Lost Pieces and Gathered Light

2010-04-24T16:34:00.003-04:00

We have been living in some dark places of late. The moonlight blown out by some stronger force of strength, the sun pounded to oblivion by a hand passing over our lives.

In this darkness I find myself in bits around the house. Walking up the stairs I may stumble upon an arm. Fingers are left in the refrigerator crisper. Ears sit on windowsills listening to the birds outside. I try to gather what I can find. I try to reassemble. But they all fall off again when I hear some latest medical news, when Willa is feeling ill from chemo, when I think about how much time we all have left.

And yet…

I find other things too.

I find rays of light in the flowerpots. I find glimmers of sun off water in the bathtub. I find beams sneaking under doors, around objects, flashing in corners of rooms, illuminating good things that stubbornly exist. Like Willa’s laugh, her shocking good humor, her signing “I love you” at the breakfast table unexpectedly. Then the room cracks open and light pours in like tidal waves. Waves and waves of sun filling the coffee cups, drenching our skin, blinding all sadness.

I squirrel it away. A little goes in the kitchen drawer. Some gets shoved into deep pockets. I eat a little. So that now in the places where something falls off a phantom appendage grows, born of light, determined to balance the dark.

And that’s what Willa does.

And that’s how it goes.

The Invisible City of the Long Long Fall

2010-03-15T23:05:00.001-04:00

There is that point as you are falling down the hole when you stop screaming. When the terror, though at your fingertips, recedes long enough for you to realize that you have not yet been smashed to a million pieces at the bottom.

That you cannot even see a bottom.

That you are still falling.

That you may be here for some time.

I am in the invisible city of the fall. In this darkened tunnel I can see nothing but a faint dimness ahead. It is not a light. It is the death of light. Or at least what light looks like when it is dying. And yet, and stubbornly yet, I am still alive in here. My heart beats. I can taste my last meal in my mouth. Should I be able to scream I would hear my voice. I know that the world exists up there from where I fell. People walk the sidewalks. Animals prowl the back alleys. Babies cry at night and stars, oh the many stars are out. I just no longer am with them.

Willa has a mysterious constitution. We hope we may have another year with her. I am infinitely grateful for this. A year at least! Of course there are the endless caveats soaked in legalese. We really have no idea. She has always, from her beginning written her own story. But we can hope.

I have learned some interesting things about the limits of one’s strength. I have learned some interesting things about the duality of a daily existence falling into an abyss. Endless falling, no impact. That it takes energy. That there is endless energy involved in continuing to breathe. That it takes energy to remember that the end is not yet here. (Don’t rush it by thinking too much about what is coming. It will be here soon enough.)

I have learned that it takes energy to watch television with your child instead of placing them in front of a sunset, an Easter egg hunt, a dolphin breaking water. It takes energy to give yourself liberties. It takes energy to allow for bathing, sleeping, dressing; the business of life.

Because Willa is not going to die tomorrow, only sooner than we would have ever wished. And in the meantime, we fall, but the heart still beats, we still hear the voices of those around us, we still have to eat, dress, rest and allow for all the weakness brought forth by the incredible energy lost in this battle to keep it all together.

I am falling down and down. Deeper and deeper into a world I never hoped to explore. But the more I fall, the further I get, the more I realize that it is a warren of interconnected tunnels here. There are wires lining the earthen walls, connecting to other wires in other tunnels, in other free falls. There are caverns connected to caverns reserved for parents struggling to maintain life while death surrounds them. There are the sounds of other screams down here. There are silences shared between parents who are falling parallel to each other, in our own invisible ways. We may not be able to see each other but the deeper I fall the more I feel them out there. The more I feel you all out there.

There is that dim light growing more distinct every day. The light that signals an end to all this. But it is still a long way off I hope. I hope for time. I hope for mercy. I hope for all of us to survive the fall.

When There Are No Words

2010-02-06T13:42:00.000-05:00

Yesterday we found out that Willa will die from her cancer. The tumor in her abdomen, the mass that has been growing and receding but all the while doing its terrible business in her tiny body has wrapped itself around the major blood vessels of her left side. If we proceed with surgery she will lose her leg, probably her bladder, and without seeing with the coldness of the eye who knows what else. The tumor will take her life.

I have just begun today to say these things. I have just begun to feel the words in my mouth. To taste the filth of them. To spit them out in disgust upon tables underneath harsh lights. These are the most real words I have ever said. But on the examining table it amazes me how little they seem. These words are so small. Even “cancer.” Just two syllables, lower-cased, a mark on the page.

They mean nothing compared to what I feel in my heart, in my stomach, across the scar on my abdomen, the scar where Willa emerged, the scar she would have a mirror image of should she have been able to have surgery.

What grew inside of me was pure life and what grows inside of her is pure death and there it must stay locked away, trapped, all-powerful and final.

There are words that have not been born. Made up of letters no one has ever seen. There is an entire vocabulary that parents know who have lost a child. I think that is what we see behind their eyes. It’s a language I have not yet mastered but I will. It is a purer expression of that it feels to lose your baby. To lose the life you made, the life you put all your life into.

I have no ability to express what I feel. I don’t think it is ever a thing you can share. It is more invisible than our most lost places. It is more invisible than anything I have yet experienced.

When you have language you can express your fears. You find ways of telling people what you are most terrified of and by these sentences you build roads, you make pathways, you fashion worn trails back and forth from mouth to ear, rivers of understanding flowing parallel to them. You make whole worlds of connection and hands holding, reaching out and making purchase.

With no language to do this I am scared. I am scared of the questions I have locked in my heart, my stomach, my scar. I am scared of asking these questions in words that do not express true meaning, my truest intentions, accuracy of feeling. They do not sound right as:

When Willa dies so much of me will die with her, will I have anything left?

Will I still be a mother?

Will I learn to live without her?

Can I forgive myself if I do?

If you drive past my house today you will not see anything amiss. It is not draped in black. It is not on fire. Tomorrow I will go to the pharmacy and pick up Willa’s prescriptions. I will not be dressed in black. I will not be on fire. When I drive home I will steer myself true. I will return to the driveway. I will not drive into the house. I will not set the world on fire. But inside me everything is black, everything burns, the world is ashes and there is just no way to say it, any of it. Not what it feels like. Not what it means. Nothing.

There are just no words.

In the Shadow of the Moon

2009-12-29T22:32:00.001-05:00

There’s dying from cancer and there’s living with cancer. There are two worlds, or more specifically, there are two sides of a single moon. It is out there, orbiting, changing our tides, causing domestic battles and inspiring young children. This moon lights my night. It darkens all my days.

Cancer is that strong: planetary, cold and omnipresent. I see its reflection in my morning coffee, in the face of my daughter, in the voice of my husband. Cancer exerts its own pull. These two sides, the living and the dying are in constant concert. They dance so closely you cannot tell one step from the other. They sway across the sky of my life, locked together, locking me in their pull.

Willa, today, is living with cancer. Willa, tomorrow, may be dying from it. We do not yet know which way balances will tip. I still do not know if there is a tip, if there is a balance. I think in my deepest places that cancer will do its work. That the moon is, in the end, uninhabitable.

But this is not defeat. This is life. This is the business of living with a power that you have absolutely no control over. We seek treatment, we pray, we bargain with the universe but the universe is not talking back. It keeps its secrets.

Willa has just completed her seventh week of treatment. In a month we will do another CT scan. We will assess the tumor once more, prod its corners, learn its secrets, face the damage done and ask one question. Can it be removed? If it can then we use a very particular language. We use words like, “cure.”

If the tumor cannot be removed, if it is wrapped around the vessels, if it has invaded Willa’s abdomen like a mass of snakes then we use another dictionary altogether. We do not use words like “cure.” No, that will not be made available to us. We will use words like “prolonging life,” like “palliative care.”

I had been making my adjustments. We drive into the city every Friday. Willa takes her medicine. Through the port they pour the poison and we pray. We wait. We laugh, we read stories, we play with toys. Because we make every minute count. I had found a new rhythm. I had worn a new path in the ground for my steps to follow. It was getting easier after discovering my own orbit. I could find it in the dark.

But the moon switched face. We learned this new fact. That in one month’s time we will be shown one of two faces. The living, or the dead. Only the universe knows, and again, the same stubborn silence.

This is what cancer does.

It is not the disease. It’s the surprises. It’s the cruelty in hope, in thinking, “well, we’ve got this figured out. It’s hard but we’ll get through it.” Because really, you may not. At least, not altogether.

Tonight the wind blows so cold the house moans. Lacking arms it cannot wrap its limbs around to warm itself. I feel that way too. Something has been taken from me that I needed. We live with cancer but cancer kills. We live with cancer but cancer changes. We live with cancer but cancer will exact its price.

The moon hovers in the frozen sky. Diamond-hard and winking its one eye. All my life has been frozen and smashed to shards.

But I still believe in the sun.

The Invisible City of the Kidnapped

2009-12-13T11:35:00.001-05:00

I have been shanghaied. Taken and stored in a terrible stinking rotten crate aboard a vessel I have not had the courage to name. I have waited for this since Willa’s diagnosis. We knew it was out there, on the high sea, waiting to come in on some moonless night to snatch us away and hold hostage everything we have built up as a wall of defense. We are defenseless. Willa has cancer.

Right after my last post Willa had her routine ultrasound. The Radiologist came into the room and said, “the baby has a large mass in her pelvis.” Again, the darkened quiet room. Why do we always get the worst news in such places? There was a television on in the background playing a cartoon that Willa has no interest in. She smiled at the doctor. She waved. She laughed.

I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.

Next followed the storms of diagnostic testing, the bone scans, the biopsy, the CT, the bone marrow pull… We were tossed about becoming bruised fruit at the feet of those with power. We had word quickly. Rhabdomyosarcoma, Stage III, to date inoperable.

We were transferred to another vessel. Willa will have a year of chemotherapy. Every week we now go to CHOP and she has poison poured into a port by her collarbone. She smiles. She waves. She laughs. My crate has been thrown overboard. I am barely floating, more submerged in a reeking ocean of foreign garbage and dead fish.

But still, I purse my lips and lift them above the water line inside my new home. I keep breathing. I have learned so many lessons of survival from Willa and that knowledge is being tested most acutely now. I have to hope that someone will find me out here. The waves will push me into shore. That some strange ocean animal will befriend me and share what they know of this place. I will gain new sea legs. I may grow gills to breathe.

In the hospital my heart breaks for the other parents. They never saw this coming. They had perfectly healthy typical children and then were given such news, their child has cancer. They wander about the halls with crazy eyes. They cry when pouring their coffee. They mutter under their breath and the smell of fear is everywhere on them. I smile at them as much as I can. I speak when they can hear me. I look them in the eye and try to offer calm because I know that fear. I am just more prepared for this. For us it was a fixed mark on our permanent horizon. We hoped to avoid it but now we are here.

Willa has lost her eyelashes. Her hair is following and then her eyebrows will depart too. She looks different. Her coloring is profoundly altered, her stomach swelled with tumor. Her belly button pushed out, the skin taught and shiny and horribly horribly wrong. But the weeks have passed. The medicine is running like wildfire through her veins and the mass that spelled such tragedy is shrinking.

Our goal is to remove it as soon as it is small enough. She is too young, too delicate for radiation. The protocol is chemo and extraction and more chemo. This ship will be at sea a good long time. This is my message in a bottle. I had feared saying these things out loud. I feared the permanence of writing them down, of thinking them, of sharing because when others read, hear, see, it is real. Totally, unchangeably real.

Willa has cancer.

Will we ever know the feeling of solid ground? Will she ever have a release from all this hurt? Will we continue to have the strength? Can my fingers web? Can my skin grow scales? Can my back allow a fin to break through by which to steer myself in the right direction? Or will we die, locked in these crates, the worms making a deep-sea meal of our hopes?

We are truly invisible now. No one can see us. But hearts beat in these boxes. Their rhythms will make the waves. We will make our own weather.

Prayer

2009-10-16T15:10:00.000-04:00

The night we sat in our kitchen, the words Costello Syndrome ringing in our ears, deafening, insistent, inevitable, I said to Colin, “I think these are the moments when it helps to be religious. To feel like there is a reason, a purpose for this. That there is a God that chose this and all we have to do is have faith.” But we are not. And there was to be no such reassurance. We would find that somewhere else.

Not that religion gives pat answers. Not that God cannot be argued with, challenged in his wisdom, asked for more. Children are born with syndromes, medical anomalies, challenges and futures we could never have imagined, and there is nothing you can do about it as a parent. The helplessness is absolute.

Over Willa’s 18 months we have had many people tell us they are praying for us. Many people we do not know. Many people we have never met. Word has spread in circles we have never ventured that there is a child, a family, that needs help from God. Candles are being lit.

I am so thankful for all of this. I have found myself saying my own prayers, not to anyone in particular but to whomever may be listening. It can’t hurt. I haven’t found religion in all this but I have found that there is a beauty in prayer, in the way it connects people. To know that someone closes their eyes and offers up hopes and gives energy to our daughter, an act of kindness that makes us less invisible.

So many ecclesiastic words are bandied about in regards to children with special needs. They are “angels” they are “gifts from God” they are going to teach us lessons about love, forgiveness and strength. But that doesn’t tell me why I had a daughter like Willa. I had learned many lessons previous to her arrival, believe me. I know a lot about love, forgiveness and strength.

For me, seeing her Costello Syndrome as a statistical short straw is liberating. We have no burden from this “gift.” It just happened. It just happened to us. And so we have to find a way of dealing with it.

And still, I pray. I pray for all the other families I see now who can no longer be invisible. I pray for the families who are about to be rocked to their very core. I pray for these children that their lives be happy. That they find acceptance and love and are seen in turn by eyes who will see beauty and illness, despair and deep contentment.

I pray for us, I pray for Willa, I pray that someone is listening, I pray that if I am meant to learn more lessons I am worthy of the extra knowledge and will not fail the challenge of my life. While I cannot find peace in religion I can find peace in myself. In the mash of all I feel and hope for and am confused about I do think that there is great purpose to all things. I’ll light candles too, something to light the dark and perhaps enough to see by.

Spica! And I'm Teething Too...

2009-09-02T12:30:00.000-04:00

Talking To Myself

2009-08-27T18:16:00.001-04:00

The other night, like many others, Willa and I were in the kitchen making dinner. She sat in her bouncy seat on the floor while I, in my culinary habit, walked a mile in between trips to the sink, the stove, the refrigerator in a distracted yet somehow successful rite of nightly passage. At 6:00 pm Willa gets dinner 1 (dinner 2, the sequel, follows at 9:00), and so while she is happily marooned in her seat she is being fed via g-tube. I hang her enteral bag on a cabinet knob and the pump does its work from the floor. Willa gets dinner and I make dinner in our family’s version of normal.

As I go about all this I keep up a steady stream of chatter. I tell Willa what I am taking out for dinner. I tell her that I am opening the box. I tell her that Daddy particularly loves his vegetables and won’t it be wonderful when one day you dear baby will be able to share in this meal we will soon eat. I go on and on.

It reminded me of people I saw in my pre-Willa days. People on television: documentaries or human interest stories about illness. It reminded me of something I had seen in coffee shops or hospitals or bus rides. I remembered all these women talking to children who did not respond. They were either incapable of it for cognitive reasons or medical ones. The eyes of the children seemed vacant to me. The exercise immensely depressing. I thought how incredibly sad that these women must talk to themselves, all day, all alone, pretending that their beloveds can hear them.

I stopped dead in my tracks in my kitchen. I looked at my daughter. She looked at me. I realized that we had been having a conversation, not a mommy monologue. As I had been opening the olives, turning on the water, being careful cause the stove is hot! she responded back in kind. She laughs at me. She listens. She is accumulating knowledge. She is feeling close to me, and most certainly I to her.

What I had never allowed for in my vision of those “poor mothers” was that they were having conversations too. There is no talking to oneself. If the mind be slower, if the body feeble, if the eyes cannot quite follow the linear progression of words in sentences wrapping all around it does not mean that there is no one there. They are there. In a look come the words. In a tremor of the body come the responses. In sighs and breaths and winks and tilts of heads paragraphs bloom.

I think of people catching us through night windows. A mother talking to a daughter who cannot respond and I wonder what they might think. I hope they can see how much fun we are having. How much we have to share. And I am now very much comforted by the fact that in kitchens all around us such wonderful discussions are being had. We are all connecting and connected.

Hospital III or The Invisible City of the Wait

2009-08-12T10:35:00.004-04:00

I walked her to the operating room in my arms. The sedation made her body heavier, denser, more like muscle moving through deep water: uncoordinated, sleepy. When I handed her over she reached her tiny arms up for me. My body snapped. And then, the long nervy wait for her release from that room, the place we were not allowed to follow her.

Then, for us, life in the Invisible City of the Wait. It is a place where time can only be time. It does not pass. It does not stretch. It sits upon the clocks, choking them, smothering all life out of the moving hands, the numbered faces.

You pass through a world of seaweed, kelp forests of jangly nerves, deepest underwater fears, clingy hopes and darkness. You cannot tread in these waters. There is no footing either. All senses are sharpened points. Every sound could be news. Every person could bring word. Every sight is hope of report.

But the answers cannot come. They cannot swim. Somewhere on a foreign beach, past the twisted morass you are locked in, they are baking on a beach, bleached by the sun, taking their place amongst the shells, the driftwood, the matte shards of sea glass.

In the Invisible City of the Wait you drown, choke, are clogged, wrapped up in your fear, your desperate need for your child to be alright. But they don't know this. Because while you are trying to breathe, to fight to the surface, to see the sun again through the blackened filament of panic, you appear to all others to be "holding up well" perhaps a little "nervous." You drink coffee, you pace, smile at the nurses solicitously. There may be magazines involved. Because in the end remember, this city is invisible...

Updates and a Fix

2009-07-11T12:25:00.000-04:00

It has been a weird few weeks. I had surgery this time, nothing major (double epi-gastric hernia repair, thanks Biscuits), but I am not to lift anything over ten pounds for four weeks which is a bit inconvenient with a sixteen pound girl who needs her mother’s hold for all mobility…

And then, another trip to the orthopedist this past Wednesday brought news that Willa will need surgery again. This time to rebuild her stubborn hip that will not mend on its own. Soon my restrictions will be over and good timing as poor Biscuits will be in a body cast for six weeks following her surgery. A 15 month old in a full body cast during the height of summer. Should be glorious, not to mention laundry fresh…

It’s a good time for it however. Her heart has been stable. We have managed to put some weight on her. She has been doing incredibly well since her December scare and so I stood there when I got the news and nodded with a new abandon, or resignation. I had been waiting for the next thing.

But something new happened. This sense of resignation had a ring to it. It was not soft or lifeless, quite the opposite. It felt metallic with light glinting and a steeliness I have found in other parts of me as well. This is to be our lives. This news will keep coming. I am finally, bit by relentless bit, learning to pace myself. It was the first trip to this doctor I felt no pain.

Another new happened as well. This is a surgery that should “fix” the problem. It surprised me. Fix? I had never contemplated this possibility with Willa before. Nothing has been fixable: not her heart, not the eating issues, the sleeping issues, the growth, the Costello. We can fix her hip. What a strange concept.

My daughter is not fixable. Costello has no cure. Her very genetic material is different and no pill or treatment can rewrite what nature decided to give her. I’m cool with this. It makes her who she is. An abandon, a resignation. But again, liberation. No hunting for the impossible, no hope for something that will never happen, no confusion over who sleeps in that crib upstairs. Willa is Willa.

So we have the surgeries. Some fix, others don’t. We know more are to come in our future however long we are fortunate to have one. I’m ready. All fixed up myself and trying not to lift the child that is the motivation of all my movements these days. Her hands are still on the levers. But increasingly I find that my hands cup hers, guiding more and more our flight.

Father's Day

2009-06-21T13:32:00.001-04:00

It’s cold today. Later June and still, this chill in the ground, in the roots, still holding onto the memory of winter. All ice and snow in the shoots. There are birds though. I watch them fly back and forth across the yard. Hurrying, forever employed, desperately beating wings in air. My flowers cannot gain purchase on this summer, but the birds choke the clouds with their song. And it is Father’s Day.

Sometimes, in my late-night moments, when the work of the day is done, after I have told my husband all the household news: the updates from therapy with Willa, the thoughts of the doctors from the appointments, the latest news from the CS listserv, when alone in the quiet of falling-to-sleep, I feel like today. There is a chill still in my bones. There is ice and snow and winter maybe in the marrow.

There are birds though, the thoughts of Willa smiling in her high chair, the good news, the small battles won. This tumble of day memories and thoughts are busy, forever employed, as I am as her mother. But unlike today, unlike the shoots that struggle to grow in this cold wet June, I am warmed by the man beside me. All is thaw and sun and future flowers.

I cannot imagine what this year has been like for my husband. What being Willa’s father is like for him. I cannot imagine what he has felt in his quiet falling-to-sleep moments when you are too tired to not be completely honest with yourself. I can barely wrap my mind around my own such things.

But I do know this: without him I would gain no purchase on this life, without him my daughter would not grow, without him all would be winter frost and no birds, no song, no nothing.

So I thank you and can tell you this: that little girl loves you. With everything she has. And she knows something so incredibly important, she knows something that lives in her bones, that fires the fierce warmth inside her tiny self: you are her daddy.

Happy Father’s Day.

You Just Get

2009-06-10T12:41:00.001-04:00

A little while ago I had a conversation with Kirsten about the surprises of having children. Another new mother, she has also found that while we prepared ourselves for “nothing will ever be the same” we could never have prepared ourselves for what that actually, daily, really meant.

The disappointments that come with losing all control of your life, the challenges associated with the things we do not like or enjoy about motherhood, the seldom acknowledged but palpable grief we feel over the loss of our former lives all get obscured by our children. We feel all this for them. We give all this up: control, sleep, a bit of ourselves for the children that bring us to a new place, an Invisible City for every new mother.

Until our children were born we were denied entry. The passports required were not yet assembled. But with the baby came the journey and we arrive on the shores of the Land of the New Self in which you meet, for the first time, the person you have become. It is the Land in which you are a mother.

Kirsten also said something to me in our conversation that I haven’t been able to shake, “You just get.” We do. Be it a boy when we hoped for a girl, be it Costello Syndrome rather than a typical child, be it brown eyes rather than blue, we just get. It’s a Yankee swap, the lottery, bingo. You put a hand into a bag and pull out your future. No backsies.

There are people who say that you only get what you can handle. I don’t agree. I have no gifts that endowed me with a special patience, acceptance or greater virtue. But I had to adapt. I had to change. I had to learn for my daughter because she needed me to. That’s motherhood. You change. You learn. You adapt because if you don’t you will lose the most important thing in your new life: the health and happiness of your child.

If I just got her than Willa just got me. Yes, I think we were lucky to get each other. We have both worked hard this year. Her to live and flourish. Me to break old boundaries I had set for myself and grow new distant horizons I hope to reach. And if it’s not her fault for being who she is, if it’s not my fault for having faults, if this new thing isn’t perfect than everything is exactly as it is meant to be. But that does not absolve you of the onus to improve. We can be better. And it is absolutely amazing what you learn to love and enjoy and thrive in.

In my Land of the New Self it takes me a while to find the Mother Me. We have trouble recognizing each other. So much has changed. But I take her hand and hold it tight. You just get. You just get.

The Dread Pirate Biscuits

2009-06-07T16:30:00.000-04:00

Well... We didn't have one of these yet...

The Blame Game

2009-06-01T13:13:00.000-04:00

Since Willa was born I have had an extraordinary number of people ask me if I was going to sue the doctors who did not tell me that my daughter was going to be born with Costello Syndrome. “Are they going to be responsible and pay for a lifetime of medical care?!” I have been asked if I was going to sue because I must be so angry that they did not know before she was born. I have been asked if I was going to sue because how could they have missed anything as major, as huge, as forever as this?

They want someone to pay. They want to know who was at fault. They need to point the finger and drive the verdict through them like a lance.

At first I thought that person was me. I thought I should have known. I apologized over and over to my husband. I feared he would blame me for not knowing what we were going to encounter; for not preparing us for Willa as who Willa is. Before she was born, we already knew her name, why didn’t we know this? How could I not have known?

I couldn’t blame booze, I couldn’t blame drugs, I couldn’t blame family history, a fall down stairs, unpasturized cheese, nitrates. I had none of those things during my pregnancy. I gave up sugar because they thought I might have gestational diabetes (which I never had). I stayed on three months of bed rest where I only got up for appointments with my obstetrician. I read all the books, I drank a lot of water, I rested, I waited, I prayed.

In the end none of that mattered. We did not have a typical child.

And I realized almost immediately after Willa’s diagnosis that blame didn’t matter either. For two very important reasons. Firstly, it was no one’s fault. Medicine is not perfect. Doctors are not perfect. We are not perfect. There are still mysteries regardless of neonatologists, fetal echos, MRI. Blood tests will tell you nothing, amniocentesis will hide the truth, neuchal translucency measurements can be questioned. In the barking, snarling early gasps of cellular development things happen that will be forever hidden from us and in these early stages all manner of fates are decided. The mysteries will never be revealed.

Secondly, and much much more importantly, Willa is not a punishment. I do not need to blame someone for giving me the most amazing person I have ever met. I am not angry that she is my daughter. I am not sad. I feel no loss. I have only thanks now for what I have been given and I embrace that which I cannot control, namely Willa herself: my mystery, my beautiful daughter and this life we all have together.

More Vocabulary

2009-05-26T10:21:00.001-04:00

I am still thinking about words. Anonymous wrote a comment that I deeply appreciated about the proper usage of Ds vocabulary. I realized that I always thought “Ds” meant “Downs” not “Down syndrome.” My eyes saw one thing and that’s what I thought it was. The comment further discussed how the usage of defining a person with Ds should be just that, a person with Down syndrome, rather than a Down syndrome person.

In the Costello community the opposite has been offered. That defining a person as having Costello syndrome, rather than a “Costello person” makes them sound as if they have a sickness when the syndrome is just the person, a defining identity trait. That saying, “Costello person” makes the syndrome and the person the same, while Anonymous pointed out that they preferred “person with Ds,” to put the person first.

Why does this all matter so much? Why so much discussion about whether to put the syndrome before or after the word person?

I find myself of two minds. Perhaps even more. It matters because words are balled fists. They land punches. But also, in the energy given over to the defining, the categorizing, the making acceptable what is ultimately not are we losing focus? Is vision blurred so you see, for example, Costello Person and not Willa?

I guess the problem is I see both. I think we probably all do. You see your child, their individuality, their themness. But you always see that other too. The features shaped and guided by their syndrome, the traits they are predisposed to.

And aren’t they both? This and that. One and the other.

It matters and it doesn’t matter. I suppose most importantly because we live in a greater world of eyes; of people who do not see the same things as us. They see the syndrome. We see our kid. They call names. We say their names. Are we trying to construct a house of words that will protect them when they are out in the world? Because when they are in our arms do we really care what the hell difference it makes whether it’s Costello Person or person with Costello Syndrome?

I think we are trying to pave something for them. With this focus on terms and usage we are trying to tell other people how to think of them. We are desperately trying to pull back the veil so they can see, all in that one moment when they encounter our family. But it will always fail. Because by the very nature of having to do any of this we are only drawing the difference more boldly. We are darkening the line. We are, in the end, not fooling anyone.

And here my other mind has its say. It still matters. We still try. We must. We are parents to these children and we cannot help ourselves. We want, like all parents do, to make our children’s lives better, easier, happier. It’s harder for our kids and for us and so we battle with these words. We write and rewrite our rules. We push language around so much with our tongue we can always taste the flavor of it. Sometimes bitter, often sweet, always there.

Before There Were Three

2009-05-03T12:59:00.001-04:00

Before there were three, there were two. A very happy two. A two that did everything together, as if all errands, all decisions all challenges were made with legs tied together, a constant three-legged race. The material that bound us would change. Sometimes it was rope, sometimes slick ribbon, sometimes the thinnest of cord. But it was always there. If you took it off, the legs bore the imprint, felt the sting of its removal. So even when unbound, the memory of the binding remained.

When I was rushed into the operating room for Willa’s emergency c-section my husband was not allowed to be with me. We felt the fibers stretch. When she was taken to another hospital at two weeks old we walked so close to one another we shared steps. When we were told she had Costello Syndrome the binding came all out of order. It shifted from the ankle to the knee, to mid-calf and then up at our throats, choking us both.

I have learned that when you have a sick child all binds can break between husband and wife, now father and mother. That which may have held in your past no longer applies to these new feats of strength. Your string may not be able to hold. Or, you would now be bound more tightly than ever imagined. That new threads would grow from this new root. That new knots would develop and fiercely protect your connection.

The only other thing that scared me about Willa’s diagnosis was that I might lose my husband. That in the shocking newness of what was terrible news we would not survive the earthquake. That mountains would be thrown up between us, that the mail would not get through, that we would begin to live under different stars.

We pulled at the binding, I heard it snap and lurch and creak with the weight of such unexpected sadness. But then I felt it pull us back together. We began to again walk step in step, though with new feet. We tie ourselves with a bow now, easy to undo should the strain prove too much, but it doesn’t break anything and when we have recovered we tie it up again, prettily. A gift of ourselves to ourselves and each other.

Before there were three there were a very happy two but now we are all one.

Living in the Land of Fear or Fearing Fear Itself

2009-04-26T09:35:00.000-04:00

There is a light that happens every evening, when the warmth of the sun has left and all that lurks are cold shadows, silver streaks and the uncertainty of your very vision. In the Land of Fear this is the light that permeates every moment, wetting the world under it, making things drip with a humid decay. Ruined houses sit in rows, each house the same, each row identical, on and on toward a horizon that never comes. This land stretches on forever.

Cats missing legs or tails or bits of ear pick from garbage left by sad lives. There are small dolls, scraps of paper with unheard or unanswered love notes on them, fish scales and bones. When you walk the streets here you must watch your step, things are underfoot that move.

When your child is diagnosed with anything, this is where you live.

I had a birthday recently. I’m older now. Again. This year I felt the change. I am different, for the first time in a long time I can feel where I am not the same. Not just in the body which bears the scars of the shift. Not just in the heart which has grown with love. Not just in the mind which bends but I have learned will not break. I am different in someplace deeper. I no longer fear anything.

What we have all been told is the worst nightmare, and what most certainly is: the loss of a child whether literal or the death of the child you thought you were to have has happened to us. Our Land of Fear brought home ruined houses filled with empty cribs, snakes curling around peeling slats and moths grown fat from shattered linens. We walked the streets. We could not get out. We could not find the horizon.

But you learn to breathe through this. You follow the bubbles to the surface. You find new light again.

And so I now know the worst can happen and I know that the very worst thing can be the best thing that ever happened to you. And it changes you. Fear lives in the deepest part of each of us. It hides there, peering out with eyes of coal. Every once in a while you see it blink. This is how you know it’s there.

This is not to say that I never feel scared, I still do from time to time. But I no longer care. I can stare back at those eyes. And I, do not blink.

Should I Stay or Should I Go?

2009-04-19T10:38:00.000-04:00

Since December we have been enjoying a relatively quiet period, no more hospitalizations or scares. Things are evening out a bit and leaving time for the normal things: therapy, doctors, trips to new specialists in Willa’s relentless drive to accumulate a legion of medical admirers. Which of course makes me incredibly and daily nervous. I am knocking on wood, I am wishing on pennies, I am dreading another stay chez CHOP.

And why? I mean, no one loves these things but what is it that really bothers me about the entire hospital stay, other than the abject fear for Willa’s life and well-being? The boredom? The lack of control? The sense of the parallel universe spinning in an orbit away from all light and normalcy and just, well, better meals? What?

I think all these things I can bear but what is so terrible is my nightly agonizing over whether to stay in Willa’s room or go home and get some sleep. This is of course after we are through anything questionable or scary. These are the nights when she is totally stable and doing her usual, which is to say, not sleeping.

When I sleep at the hospital, there is no sleep. When I go home, I cry all the way to the elevator, down to the garage and all the way home. I feel like a traitor, a Benedict Arnold of epic proportion, a skunk beyond all reckoning. I feel like I am the worst mother that has ever walked the face of this earth. I feel like everyone is watching me with disapproving eyes, they peer into my soul and condemn me. Is this dramatic enough?

It’s awful. It’s unwinnable. If I stay I am sacrificing the only sleep I may get this year. If I go I am so guilt ridden my night is riddled with bad dreams and sadness. The doctors all tell you to leave. The nurses say that they are paid for this and can go home and sleep in the morning. I have been told that it’s ok, that I am not the antichrist of mothering, that people need to sleep and she will be well looked after. And she will be, but not by ME. And so we go around again…

Willa has had 6 hospitalizations and each time this question gets no easier to answer. I am so far incapable of making any peace with this, of being decisive, of managing to take care of Willa and myself at the same time. I can’t do it with any grace or fortitude. I have no conviction. Either way it sucks and that’s pretty much all I can get to in all this.

And so I dread the hospital… For this above all reasons. I dread walking out the door and leaving Willa behind. I dread the loss of all sleep and the crushing exhaustion of a medical emergency and then the long recovery. Is there any way to make peace with this? I think I need Willa to tell me what to do but so far she ain’t talkin’.

And so I’ll knock on wood, I’ll wish on pennies, I’ll pray for good health and sunny skies and the wisdom to know next time.

My Dream Deferred

2009-04-13T18:42:00.002-04:00

When I was pregnant with Willa I spent the hours on bed rest imagining the things we would do together. We would see movies at the theater, gorging on popcorn and candy. We would investigate the gardens of Pennsylvania, prying open the petals of spring or fall pansies to look at the lady within. We would bake ill-conceived cookies and laugh at our clumsy results. We would take long walks on the shores of our Lake Galena, her in her stroller, me in my full glory parading my daughter about the periphery of a man-made lake dotted with small sailboats.

Now certainly this year has not been without adventures. We have learnt the inner workings and labyrinthine doings of the hospital. We have strolled the corridors from the MRI suite to the cardiology floor and back again. We have welcomed friends and family members who are so loving they come to us, though no one lives close by.

This past year I put aside my dreams for Willa and my time in the more immediate concerns of her health, her development, the formulation of a program for her care, assembling her team. Movies, cookies, strolls were as out of reach as Paris, the moon, long division.

But spring is here.

I heard the last churn of the enteral pump last week signaling the end of Willa’s 3:00 feed and I made a decision. I, with my daughter alongside, was going to charge the evening. I loaded Willa into her car seat. We took the short trip to the fabled Lake Galena. I put her in her stroller and we strolled. In my full glory I paraded my girl up hill and down, round bends and back again, spying the daffodils burgeoning in the woods, seeing the bluebird in the field, feeling the long forgotten sun. I walked so far I took all the skin off my toes and felt nothing. I walked so far with her that I was sore for days afterward. My dream was now my evening. My hope was now my life.

There are moments when you have these funny little successes, things that were just so banal and effortless in your previous life you cannot imagine that one day they will be your personal climb up Everest. But that walk was. That walk took a year to get to. And it was so worth it.

In the Land of the Village

2009-04-04T18:58:00.001-04:00

For the last few years before Willa’s arrival my husband and I had lived a rather solitary life as a couple. We took up residence in a lighthouse of the mind. Still projecting light and welcome, but having very few visitors. Then Willa came to live with us by the sea and since then, well, the boats keep coming.

Willa has a speech therapist, an occupational therapist, a physical therapist and a special instruction educator come to the house weekly or bi-weekly. We also have a nurse during the week to accompany us to all the many appointments and to give me a few hours of sleep the mornings I can get them since our girl would rather not at night. Our lighthouse of happy solitude has become a village of helpers, or rather trained medical and therapeutic personnel, Willa’s entourage or team.

They set the hours on our new clock, moving hands I am unfamiliar with. They populate the air with their voices, speaking to the baby in foreign tones and singing unfamiliar songs. They introduce what is to be our routine. They are the ones to reveal new tasks, new strategies, new roads for exploration. In the Land of the Village, the many are for the One. My One: my Willa.

Our Lighthouse is now a thing of the past. There is no more solitude; there is no more stasis. Things are never where I leave them anymore. The inanimate objects of my home have found legs and walk all over the countertops. They find their way to places I would not have imagined for them. The refrigerator has new contents daily that come and go without my hand to choose them. The radio is set to stations that continue to surprise me.

There are sacrifices that surprise you in these new worlds. We have had to sacrifice our aloneness, our privacy, our hold on the unchangeability of our home. It is an incredibly small price to pay for what is gained. But still I feel the loss. It is weird to have the first noises of the day originate from someone else in your kitchen. It is strange to have people walk in the back door at the same time, every week or bi-weekly. It is odd to think that other hands help shape my child’s destiny, other hands that do things I cannot. I have so much to learn.

It is important to every so often pull the boat, the one stashed in the reeds, out from its hiding place and escape from the Village. It is necessary to put the three of us on the plank seat, grab an oar and row for the horizon, out to sea rather than in from it. We need to still confront our waves as a family, making the decisions for us, finding our way out of the storms that may surround us.

Only from out there in the brine surrounded by gulls can we turn back to shore, see the light from the lighthouse guiding us in and row for the many that wait for us on the shore, the Land of the Village we now call home.

Pace Yourself

2009-03-26T18:25:00.001-04:00

The six weeks have expired and Wednesday found us back at the orthopedists for the verdict on Willa’s errant hip. Home free? Body cast? Surgery? It was to be none of the above.

Willa will need to wear her brace for the next six months. That’s MONTHS. Immediately my brain began to whir and threw up thoughts such as: by the time this thing comes off she will have spent a third of her life in it, she will never walk at this rate, she is going to spend the long summer in a foam and plastic cast which will rot her flesh, she can still not swim…

But then there were also these: it’s not surgery, it’s not a body cast, it’s just a brace and will probably work eventually, she doesn’t even really mind it, she will need new clothes…

Which leads me to one of my many questions in all this. When you have a medically fragile child, when life will be punctuated by constant and ever-present medical issues to varying degrees, when there is no cure, no end date, no stop to the body of my daughter that insists on presenting challenges to her life and development, how are you meant to pace yourself?

I sat in the orthopedists office and was wracked by the news. Again. It was not a new feeling. Not even a merely familiar one. It was a feeling that I feel all the time now. It’s a strange sensation, sickening fear mixed with a bored aggravation. It is simultaneously visceral and mundane. The “here we go again” married to “oh my god.” And each time you have to strap the kid back into her apparatus, drive home and make dinner. It’s just life now.

So, how do I pace myself? How do I feel what I feel but not let it chip a piece out of me each time? How do I stem the flow of worry and sickening fear and morbid thoughts of death and dying? How am I to have the energy to live a lifetime of this? How do you manage to not just live your life but flourish in it? How do you not go dead behind the eyes? How do you fiercely defend your very being from your life? Or rather, how do you allow your very being to embrace the life you have, letting the new bolster the old?

Willa is one and she has been hospitalized six times. She has developed scoliosis. She has hip dysplasia. She does not eat. She is in the 0.08% for height and the 0.14% for weight. She cannot push up her head when on her stomach. She has heart problems. She needs to wear braces on her wrists to keep them aligned. She does not sleep. She almost died in surgery. She is on medication all day.

Willa is one and she has not developed cancer. She smiles and laughs. She adores her parents and throws her body at us when she sees us. She does not have Chiari malformation. She is not on a ventilator. She is able to tolerate her g-tube feeds. She is not in constant pain. She can pass toys in her hands. She can say “ga.” She is not in a body cast. She is not having surgery again soon.

Hopefully.

Each step feels like it is made by feet with the toes cut off. Each mark of progress somehow bears the mark of amputation. But progress is progress and we have made ours. And so we march on. I am learning to pace myself. Slowly.

Dearest Darling Willa,

2009-03-23T06:59:00.001-04:00

Today is your birthday my girl, the very first time we will present the candled cake, the streamers, the song. We will sing to you while you watch fire melt wax, while outside shoots are testing the loam, while buds are turning the trees red. All around us spring is happening and you are one year old.

You see sweetheart it is a celebration of your coming into the world. Your birthday is a gift and so you will receive them, wrapped in papers and ribbons you will be much more interested in than the toys within. We give you things because you have given us so much and we want to thank you for it.

Before long you will learn to wish on those candles. You will close your blue eyes and with a powerful exhalation throw that wish up with the smoke to the world. I hope all your wishes are answered. I wish on that moment too. I wish all the time. I wish for so many things for you. I won’t say them out loud. I want them to come true.

Willa, you are the daughter I had no idea I always wanted. We were made for each other kid. Getting to know you over the past year I think I have learnt more about myself than I had thought possible. I am learning about all kinds of new possibilities through you. I am meeting those I have loved the most in my life all over again through your eyes.

Your daddy and I are so deeply in love with you it has torn our hearts all to pieces like fine paper. Then the love stitched them back together again with new threads, making them stronger in the process. The pieces got all combined in the shuffle, a little of mine ended up in his, his mine and yours in each of us. We are all three of the same heart now.

On this day, your birthday, I will sing to you from this new heart, this better one. I will wish with this heart stronger hopes. I will look on you with my opened eyes. I will promise you with my whole being to celebrate you for everything you are and will be.

Happy birthday my baby. I love you so very much.

From the Land of No Sleep

2009-03-16T17:36:00.001-04:00

There is a land where you do not sleep. I live in its capitol city. I moved here a year ago. Like so many transplants, I thought it would be temporary but a year later we have settled in, the carpet wears the depressions of furniture that does not move, my eyes have baggage, my body is unglued. We live each day with no sleep to pull us together, no sleep to give our eyes their rest, no sleep to stop the hallucinations.

Willa is the sun that will not set. In this land she fills our sky with waking. She will not allow the moon to rise; she with her tiny hands manipulates the levers, never setting the stars into motion. She will not allow sleep to come. Not to anyone.

Late in our never-ending day we slip her a drug to march her off to a slumber that will not last. We may, on a very very good night, get two hours. Then she is up every twenty minutes the rest of the night. It has been this way for eleven months. Every night.

She knows it’s time, she knows what sleep is for. She just cannot sustain it at all. During the days she takes occasional Napoleonic naps (15 to 20 minutes) before marching off to conquer Europe.

Apparently this is one of those constant Costello traits. The ones we all suffer. I can see my neighbors in this Land of No Sleep from my bedroom window; all lights are on, even in the dead of night. I wave.

We hope this improves. No one can tell us if it will or by how much. And so I go about my day, not worrying about the cats I see out of the corners of my eye that cannot be there, or the people that populate empty rooms. I know my tired mind is making them up but I am too tired to care anymore that they are there, or not there as it were.

My husband and I trade off nights though we have refused to separate into separate rooms. So this of course means that neither of us sleeps ever. We’ve made our peace with that too.

I avoid heavy machinery. I no longer do simple arithmetic. I smile a lot, just so, with a slightly deranged look in my eye. The one that twitches…

Kidding.

But not by much.

And the 15 pounds of unstoppable life? The sun, moon and stars in our Land of No Sleep? She keeps going, fueled by something internal that would power a locomotive, I’m sure of it. I think it is her will to live. I think it may be that she refuses to miss anything, even if she has to see it through closed eyes, hear life through ears that are open all the time.

Just being in close proximity to her you get a little of this energy. It does rub off, but not enough. Her coal burns entirely for her. So we inhabitants of this strange land have caffeine addictions, unnatural love for pillows, loss of words. Sometimes we just can’t find things in the dark, and sometimes we get to dream.

Vocabulary Lessons

2009-03-13T15:17:00.001-04:00

I was having a conversation the other day when I realized that the words appearing in the dialogue bubble over my head were as strange and foreign as any distant language. I saw them there, suspended in mid air, hard, glistening, in bold. So much has entered our lives that is new, the I.V. pole, the enteral pump, the baby in a brace. But here too, vocabulary… These words are new, at first they hurt your brain but then… there they are, on the tongue, in the conversation, hanging above and around you like weather.

Some examples:

Costello Syndrome (Over the past year I have said the following to a number of insurance customer service operators, nurses, appointment makers, and random askers and acquaintances. I say, “ She has Costello syndrome, like Abbott and Costello but a lot less funny. This invariably gets me crickets. CRICKETS. Laugh! It’s ok. Sheesh.)

Hard munchibles (In Willa’s oral stim therapy we are introducing hard munchibles, i.e. a carrot or celery stalk to ready her mouth for the distant dream of getting food in there. Apparently my thumb is classed in this category as Willa’s new favorite pastime on my lap is to grab my digit and maul it with a ferocity bordering on mania.)

Non-nutritive suck (While meeting with speech pathologists in the early days we learnt this term, describing Willa’s oral aerobics about the bottle nipple she refused to take food through. This is a personal favorite for us as much of our life this past year has itself been a non-nutritive suck.)

Dysplasia (In and of itself not such a great thing but the word is promising. In my ear it sounds like a lost continent on which flourished beasts of incredible dancing ability.)

Afebrile (Without temperature for those who may not be up on their hospital lingo… When the nurses looks at my girl and says, “Well she’s afebrile so that’s good” I always hear the following said in the voice of Ralph Wiggim from the Simpson’s, “I’m afebrile!”)

What wonders! What strange sounds! What bizarre roads we walk down!

Upon Hearing Wonderful News

2009-03-06T17:29:00.001-05:00

One of my best friends has just told me that she is pregnant. I could not be happier for her, her husband, the future child they will have. I cannot wait to meet this person as my friend is one of the singularly most wonderful people on the earth and her child will be, well, most welcome.

And then I find it gives me pause. I think about how she will soon have a three month old, a nine month old. Her child will all too rapidly be one, an age Willa is fast approaching and suddenly the ground beneath me, that I had thought fixed, permanent and unchangeable, shifts. Fissures sparkle and I realize that I am standing on pack ice in the middle of a polar sea. A crevasse opens and on the one side I stand in mittens and hat and on the other are the mothers I can no longer sit with at the table. They will be rescued. I will have to turn back to the ship, frozen in ice, an artic explorer writing a ship’s log of fear and sometimes desperation.

My friend’s child, this unborn possibility, will lap Willa within months of being born. Developmental milestones will be tossed to the annuals of its personal history and we will still not be eating, not walking, not talking.

I haven’t quite dealt with this yet. While I managed to make my break with Willa not being the typical child we expected I guess I haven’t made the break with the typical mom I thought I was to be. I am scared that the people I know are going to have children, and we will recede into our invisible city, forever inhabitants of a place no one can join.

Today my invisible city feels empty, apocalyptic. Drifts of snow piled in cabin corners, ice on broken windowpanes and roving polar bears. My friends will soon be separated from me, my experience apart that much more from their own experience, their own commonality of motherhood, the concerns of the typical child.

Will the interest in our life, like all novelties, fade in the glare of a sun not meant to shine on what is frozen? Will the eyes of our friends soon have to look away toward what they can use, toward what they can share, away from what is so completely foreign to the child they will have lying in the cribs of future nurseries?

As Willa gets older I see ever more prominently what is not there. When you have a child with developmental delay you make all these rationalizations, well they aren’t that far behind, with the adjusted age… It’s a lie of course, and as they get older the gaps widen and you, as the mother, fall in.

I’m tumbling down into one of these gaps. I feel miniature. I can hear the chatter from the world above. I’m part of it but somehow parallel to it. I am a mother but I am not the mother my friend will be. I’m not the mother I thought I was. I’m not the mother my other friends will become. I will be wearing blue when they wear red. I will be drinking when they eat. I will see when they close their eyes to sleep.

I know I am not alone. I know there are legions of mothers like me, living in cities of their own. But this is the first time. The first time knowledge has come home to roost. I know too that chasms exist between mothers with different children. I will do everything in my power to throw lines across the void, tie together rope to make a bridge, send out flares from below, write letters and put them in bottles to float off towards horizons I can no longer reach. I will talk and share and I will be patient too. And I will congratulate my friend with great love in my heart because she is going to have a baby, a beautiful baby soon and I would not want anything less for her.

I hope our children can become correspondents, from one city to another, one world to the parallel one. They can send letters across. Children can do anything. I have to gather the stationary, hoard postage, ready my girl for reaching out from deep places and taking hold of friendly little hands; the hands of her future friends.

Back on my ship, frozen in ice I finish my entry and walk up to the top deck. It is the permanent arctic night and up above plays the aurora. I see impossible colors and shapes. There are others who see these strange phenomena too. I have to remember that. And to these mothers I look now and extend my mittened hand once again. I feel fearful but warm, excited for what I will discover and sad at heart for the distance between old friends and myself. I feel numb sometimes too. But I look up, and there is the aurora, there is Willa, there is my life and my greatest joy.

What Our Eyes Are Trained To See

2009-03-01T09:22:00.000-05:00

I read to Willa and say the same words over and over in multiple stories: cat, bird, red, black. I am training her eyes to see what she may someday recognize as part of her world. I am inhabiting her vision with the characters who will walk beside her. On future outings down future streets she will see cats in curtained windows, scarlet cardinals sounding out from the willow tree. She will know what they are and this will make her world larger because of it.

There was a time when I had no idea what ginestra was. I passed tables upon which sat their olfactory payload and was robbed by my own ignorance. Then I went to work for my mother-in-law at her flower shop and discovered it. Ginestra is the most shockingly gorgeous smelling flower on the planet. It is completely unassuming, slight even, but will fill your head with visions of a better world.

I have written before about living in these invisible cities. That since having Willa I see all around me now people I had not noticed before. I see so many Downs children, so many kids with cerebral palsy, so many different faces, different limbs, different abilities for walking, talking, eating. I see you because I see myself, my child and am a raw open wound of sensitive to how people see us.

To be invisible to the eyes around you is a cruel fate. A thing worse than anything. Because you live, you breathe, you see.

I tell Willa about cat, bird, red, black. I also tell her Costello, different, not all the same, beautiful, endless beautiful.

I stop at window boxes and smell the ginestra. I take every opportunity. Spring is coming and I will show this to my daughter and show her other flowers too. Because once you know such things you never go back.

My eyes had not been trained. But I learned. All of our eyes are hungry for new information, new sights, new words that will satisfy the person behind them. We forget that we are smarter than we think. We can improve.

It doesn’t make me a better person but it does make my life better, having my eyes see what they were ignorant of. To look at what is in front of me every day, adding color to my world, new visions of what already exists. It rounds out the picture. It fills the frame. Having a daughter with special needs and a medically complex constitution has done nothing but open the blinds for me.

I see you.

Do you see me?

Hospital II

2009-02-17T17:49:00.000-05:00

There you are, sitting bedside, after having been through it. And what do you feel? When the fear and panic have passed, when the battles have been fought and apparently won, when you are on the walk home to health and your routine, you sit there, bedside and you feel one thing so crushingly and immediate you cannot fathom how you will be able to stand it: boredom. You are bored to fits.

All the articles have been read in the magazines, you already made your fifth walk of the day to the cafeteria for coffee, you have no more questions to ask of doctors or nurses, your minutes are gone.

I have to come up with something for these times. Something in advance. Because when you are there you are too exhausted, too out of your element, too pale for thinking. Crosswords require the alarms to not sound on the monitor, writing requires leaving her alone in the room, television requires no commercials because I cannot stand the frantic pace of TV in the hushed world of the hospital room.

I don’t sew. I don’t do mathematical equations for fun. I don’t know how to manicure my nails. I wish I could have the presence of mind to listen to language tapes, learn Mayan history, memorize the calls of the North American Songbirds. Cause you have all this time...

But I find myself buying M&M’s from the vending machine, going to the bathroom, again, making a phone call to my husband with absolutely nothing at all whatsoever to say. I reread Us Weekly looking for clues in paparazzi photos that may tell me something larger about our world. I find nothing, I’m getting fat on M&M’s, I’m bored with a shockingly empty bladder. Time to go get some more coffee.

Surprise!

2009-02-14T12:37:00.001-05:00

This past week we took Willa to her first orthopedic appointment. My Costello tarot cards have been functioning quite well lately and so I saw scoliosis in our future and was predictably serene when the doctor informed us that Willa does, indeed, have it.

However, I was not prepared to hear that the ball of her left hip was not in the socket, apparently never has been, and she will need to be in a brace for the next six weeks. If that doesn’t work, full body cast, if that doesn’t work, surgery.

Now, this is not a life-threatening situation by any stretch. It’s not ideal obviously, not good even, but most likely we will be able to fix this problem and prevent other much more severe issues from developing. It was good we found it when we did.

As I was trying to cram Biscuits into her infant seat which did not accommodate the new “extras”, with her pleading and disquieted eyes, in a busy parking lot, with her stroller starting to plot its big escape down an incline, I paused to think… I was upset. Actually, pretty significantly upset.

Why? I know all about Costello surprises. I know that they will come, frequently, and with great force. I know my cards are more some kind of ancient riddle, churning out only so much information and barely hinting at the other realities that lay in store. I know that she’s going to be ok with this, that her doctor will be able to help, that it’s six weeks, that it’s going to pass.

But I wasn’t ready. And here I am confronted with a vision of my future, I never will be.

So what now? I think I shall have to toss my cards in the air and watch them come down like feathers, and blow away. I cannot rely on them anyway. They assist in nothing. All my research, my questions, my reading up, my preparation will at many points in this life come to naught. There will be surprises I had not forseen. But this is where I remember the joy of having a child like Willa. Life is like this, for everyone, at all times. I just get more reminders.

And so I look at my girl in this brace and see her future healing. We are all healing…

Hospital

2009-02-08T10:04:00.000-05:00

I’ve never been to Las Vegas, Atlantic City, Reno, none of the fabled lands of the casino, gambling, lights. But I have ideas… I imagine great sweeping expanses of noise and machines and tables and comfortable footwear and no windows, no clocks. I imagine casinos are where time stands still.

Hospitals are like this. You enter the doors under duress, altered, attired in whatever you were wearing when things got too bad to stay home any longer. When you are admitted, an interesting word in and of itself, you commit to being a member of the ecosystem, microcosm, parallel universe that is the hospital.

There is no outside air. Vents whir and dispense their own weather. It always feels the same. There may be windows but you soon realize they are an illusion. These are covered in darkness, shrouded to protect the ill. Through them you will get no sense of what is happening outside. Or if you do it only serves as a stark reminder that there is a world functioning out there that you are separated from, held apart behind glass.

The clocks mean nothing. Hours pass as if minutes or days. It changes. Time itself is changeable and unpredictable. You catch yourself at moments standing in a tunnel. You can see the beginning and the end but are never sure where you are in between. All the numbers of minutes and hours start to blend anyway.

You are surrounded by numbers: temperature, blood pressure, dosage, weight. They tumble out of drawers, fall off walls, pour around corners, leap from pages and mouths and forms you are meant to sign. They clutter your mind and disorient you.

You, in your not right clothes, in your not right mind, in this not right place. It is easy to go dead behind the eyes. To let go. To gamble at these tables without any remembrance of your life on the outside. That world seems so far away now. Dramas happen every minute in here. Dramas we hope never to play any part in. There are miracles too and children. Lovely beautiful funny dopey silly children who still run and laugh and cry and scream in equal order. They seem to be the only ones who can maintain themselves; their childness.

Adults are crushed under the weight of this other world. Without our privacy, our things, our rules, our control we spin like insects missing wings, broken, unmoored. So we have to look to children, seek out their eyes. In them we see an antidote to the pressure. We see maps to lightness, the absence of fear.

Children are so rarely in control of their lives they thrive in these environments, they know to become like liquid in these worlds. They find all the cracks in the façade and one way or another they break through.

How I Made the Break

2009-02-04T16:00:00.000-05:00

I have read a few stories now of parents dealing with their children’s diagnoses. The same word keeps coming up in the following phrase: “I was devastated.” Yes, I was devastated too. But I look at this word now and think how incredibly nothing it sounds compared to the violence of emotion behind it. It’s almost a dam against comprehension. Cities are devastated by natural disaster and tweens are devastated Joe Jonas will never love them and the word means the same to each.

I was devastated upon confirmation that my daughter had Costello Syndrome. But here is what that really meant:

It was June. Willa was again in the hospital and every day I was riding the commuter train 2 hours down to Philadelphia to spend the day with her then come back in order to sleep. Rinse, Repeat. This had been going on for a week.

One morning while getting dressed and readying myself for another day on the Cardiac Care Unit I paused. I realized I was alone in the house. The neighbors were at work. The air outside was not yet hot with the day, the windows were open and I could see the tender green of the neighboring trees.

I started screaming. Not crying, not wailing, not asking why, no tears. I just screamed with my entire body behind it.

I broke the dam of devastated. I broke capillaries in my face. I screamed for everything we lost in this storm. I screamed for the disappointment. I screamed for the things we would never have. I screamed for the places we would no longer go in life. I screamed because I will never be the mother of the bride. I screamed because my daughter will never share romantic love. I screamed for the grandchildren I will never have. I screamed and screamed and screamed.

And then I finished getting ready and I drove to the train, took it the two hours to Philadelphia, spent the day with my daughter and then came home to sleep.

Rinse, repeat.

And I never went back.

The Noro Diet

2009-02-01T12:51:00.000-05:00

Trying to lose those stubborn 5 lbs left over from baby? Here’s a tip ladies, contract yourself some good ole fashioned Norovirus and watch that weight just flush itself away…

You’ll be back in your bikini in no time, just ingest some infected vomit or fecal matter, wait two days and whammo! Every last bit of fluid you had in your body will be expelled with the force of a thousand tsunamis. 100% effective 100% of the time!

Testimonial:

Hi, my name is Heather. I have a ten month old who puked in my face and gave me the Norovirus. Wow, I’ve never been more sick in my life but I look great! Thank you Noro diet!

Willa a.k.a Biscuits a.k.a. The Nibbler a.k.a. Willard...

2009-01-29T18:54:00.000-05:00

Meds

2009-01-28T16:37:00.001-05:00

The photograph above is part of our nighttime ritual. Turn on the dishwasher, turn down the heat, shut off the lights, draw Willa’s meds. These take us from 9:00pm to 6:30am, peppering the evening and deep night hours with their interruption. Those tableaux of weirdness I mentioned before? This would be one.

My husband will not even take Tylenol if he has a headache and I know looking at this layout every night on our countertop makes his brain collapse a little each time. He cannot believe it’s ok to give a baby so much medication, ok for a baby to have so many tests and procedures, ok for a baby to have radioactive materials pumped into her like water. And I say, “Look at her, we feed her through a tube, none of this is ok.”

And it’s not.

It’s not ok.

During the first real scare we were ambulanced (is this a verb?) to the local hospital. Frustratingly (if not dangerously), because of insurance and liability issues we have to be taken to the nearest medical facility. Never mind the fact that they do not even have pediatrics. Never mind the fact that Willa is way way more than they can handle. Never mind the fact that each time we are sent there we waste five to six hours waiting for the transport that will take us to CHOP (Children’s Hospital of Philadelphia and the most unfortunate acronym I have ever heard) when the baby is failing. It’s a nightmare and this past time we found ourselves in the ER I found myself doing something that shocked the hell out of me.

The ER doctor looked at Willa and began ordering tests, blood work, cultures and all manner of time-consuming, unnecessary and misdirected busywork leading us down lost avenues and forgotten streets. I knew that he was leading us there and so I said, “No. I don’t want you to do any of those things. I just want you make sure she is stable and arrange for the transport to CHOP.”

Now I never in my life would have thought I would do something like this. I’m no shrinking violet but I was brought up to allow figures of authority to do their bit and listen quietly while that bit was done. Not anymore. I’m learning what so many of you already know. When it comes to medicine, all bets are off. You have to trust yourself when you know things are not ok.

Part of finding my way as a mother has been finding my way as an untrained, unskilled and highly emotionally invested nurse. I can insert an NG tube into my baby’s nose, put it in her stomach and tape the outside section to her face in less than a minute. I can draw meds perfectly, I can administer them in the dark, shutting off a pump, disconnecting tubes, flushing lines and getting the feed rolling again before the alarm goes off. I can insert a g-tube into a hole in my kid. I can identify when Willa is tachycardic. I can talk my girl through an MRI, an X-ray, a DMSA, a VCUG.

It’s not ok.

I never wanted to be a doctor because I never wanted to have to do any of these things, make any of these decisions, live with consequences. What if I had been wrong in that ER? What if I make a mistake with her dosages? What if I have to decide to let her live or die?

We don’t even take Tylenol, but we have a girl who takes everything, needs everything, will have every test, will need every procedure.

So what is ok? Different things different days I think. It’s ok that my husband and I talk about everything. It’s ok that we demand what’s best for her; even if we are using what information we have at the time. It’s ok that I can learn new things. It’s ok that I know I’ll make mistakes. It’s ok that I am scared of very little at all anymore. It’s good even.

It’s a morass: medicine and its world. But we are in it, whether we like it or not. I’m not a doctor, or a nurse, but a mother with an interesting skill set. Now if I could only figure out how to work my crock-pot I’d be unstoppable.

Section

2009-01-20T16:05:00.000-05:00

I need to tell this story because I need to write it down and look at it. It has itself rewritten my body, the mark of the surgeon forever a part of me now and so in order to stop late night images I have to do something else with it.

After three months of bed rest my water broke at 1:00 in the morning on Easter Sunday. While little bunnies were depositing candy and eggs in country corners I was loading myself into the car, deeply relieved, incredibly excited, mightily anxious and just thrilled that the nightmare of my pregnancy would soon be over and the baby would finally be here.

Things went strange pretty quickly. I progressed to 8 cm in an hour. And then Willa’s heart rate slowed, and slowed more. There wasn’t time to wait out the extra 2 cm and so I was hurled through the hallways of our small maternity department and into the OR for the c-section.

While the gurney was breaking through the doors I remember thinking, I can still feel these contractions. I told the anesthesiologist. When they made the first incision I looked at him and said, “I felt that.” He said, “Does it feel like pressure or like burning?” “Burning” I said. His face was partially obscured by the mask but I saw he blanched. I saw his eyes. I knew then that I was in trouble.

Throughout what followed I remember trying not to scream. I did not want to frighten Willa in her first moments in the world. They strapped down my arms and my legs flailed. I yelled because I could not control it. The pain was beyond all reckoning. I felt every moment of my daughter being taken out of me.

Through the viscera, the rank fear and the straining for a hand to hold (my husband had not been allowed in the room, he was outside closed doors listening to what was happening) I still waited for the cry. I needed to know she was ok and that cry was going to tell me all I needed to know. She cried, she howled. I passed out.

So now I carry this mark. It pulls the skin slightly in this funny way, not very noticeable but to me it’s a sentence with a strange new punctuation, something invented to suit a new purpose, a mark that rewrites all meaning. I look at it everyday and remember how it got there. It makes things clear for me. All that came before its presence no longer exists. Life began at that mark. In fact life was taken from underneath it, and lived, and sits on my lap and howls still but with new vigor, new purpose. We all have new purpose.

It reminds me too that we can survive anything, we can take it, we can walk through fires and though we may bear the scars ever afterwards, they only add to our story. They write wonderful new chapters. These are titles to poems of daily life. Willa is my poem and the mark that marks her entrance to this world and the terrible experience it was only reminds me of the strength I have to continue. We all of us. All of us. This is the strength of motherhood, of parenting interesting babies and singular lives. We are simultaneously both: alone in our unique circumstances and just like everyone else in what we have the capacity to endure.

Since Willa arrived I have met wonderful mothers. Women who walk through fires everyday that so many of us could not imagine and what you will continually hear from them is this, “I’m just like you.” And so we must support each other, for our sameness, our differences and the ways in which little marks mean big things. We all have a story to tell.

Another Country Heard From

2009-01-17T15:37:00.000-05:00

We thought we had a lot going on. The adjustments, the difficulties, the laughing, the crying, the silent struggles, the hot new joys. We thought we were the sole helmeted travelers exploring the centers of this swirling new universe, just born from the particles of infinite space and time. And then I caught my cat straddling the baby in her bassinet, ever so nimbly eating the tubing from the feed bag, while the feed was going through the pump, while Willa slept soundly, while we were talking in the next room, in broad daylight, plastic and all. I looked at her, she looked at me and I knew, ok so I guess I’m not the only one making hay…

Ever the opportunist, our cat, The Panda, has been making some personal discoveries on her own these days. The most wondrous being the ins, outs, and contents of the feeding apparatus Willa came with. The baby may have stolen the laps, may have shut the doors of the bedroom, she may have turned the doting eyes of the two parents in her general and forever direction but there is a bag filled with the wonders of free food and it sits there as if from a limb high in the bassinet, just ripe for the picking. It sends a chill down my spine.

I’m sure you can imagine: a quick game of word association if you need help: cat, baby, bassinet, smother, accident, death etc etc… And so life gets a little more complicated for The Panda. At 9, 12, 3 and 6 she is shooed into the basement to wait out the hour-long feed. She is watched, monitored and disciplined. None ideal as far as she is concerned and she looks at us with saucer eyes, “Why?” I tell her, “Panda, the last thing I need from you is a guilt trip. We all have to make adjustments.”

Well, she’s made hers. I caught her again Wednesday. This time she had managed to disconnect the bag tubing from Willa’s extension on her g-tube (this is not made to be disconnected so easily, it’s a plastic nozzle that snaps into the extension, the extension goes right into Willa’s stomach via button. Is this the same apparatus that was so recently a near death experience you may ask? Yeah, that one…), she had pulled it onto the floor where she was busily eating as much of it as she possibly could before getting caught.

I honestly couldn’t even get mad. I was just plain impressed. Again, Willa never even woke up. Now, if I sneeze two rooms over it will wake her. If I put the dishes away in the kitchen it will wake her, if I walk too heavily, if I touch tin foil, if I need to make a phone call, if I think about doing laundry, all will wake her. But a cat pulling off her feed from a hole in her body? Apparently, no biggie.

And the universe expands…

Retarded

2009-01-06T21:36:00.000-05:00

I read the letter detailing Willa’s many current and future (potential) symptoms due to her syndrome and came upon this sentence: “Willa will be mentally retarded.” Now I grew up in Massachusetts and can spot a Scarlet Letter when I see one and at that moment I saw it, the large R emblazoned across her onesie, the final diagnosis of her mental capacity and perhaps even of her as a person.

As I have enumerated before, Willa has a lot going on, she’s our baby with extras but this one, the “mental retardation” piece has been an interesting one for me as her mother. When we read “The List” I felt a cold chill go through me when I saw that she would be “retarded.” (I keep putting the word in quotes because it is so profoundly not my word. I will stop but please place them there at your convenience.) Why? Why was this the thing that so devastated me? Willa has a 17% chance of getting cancer for God’s sake and yet this nasty ugly word was the thing that made the tears run hot and steady.

I saw the faces of future kids in her future school, mocking or ignoring her. The people on the street looking away from the family that had such a cross to bear. I hear the second person addresses changing to third person addresses, from “How are you baby?” to “How is she?” I saw my future embarrassment and shame, the shocking and constant assault to my vanity and in that the memories of our own childhood treatment of these kids, our adult inability to see what is in front of you.

When I was a young Girl Scout our meetings were held in the special education room of the local small public school. When we, ablaze with badges and hopped up on cookies entered this room we did not make eye contact with the other kids in the hall because they would call us retards for just going in there. We were tainted. And the children with special needs who inhabited the room during regular school hours? I was terrified of them. They were the ultimate other and it appeared that people did not like them. And so, I kept my distance for fear of their stain and the unpopularity it signaled.

As an adult you want people to ooh and ahh over the very devastating cuteness that is your offspring. I was picturing Baby Gap adorable and wanted the world to feel likewise. VANITY! My God, I am ashamed to even admit it but I have to, it’s true. You want people to sneak photos of your kid on the street, steal glances at their perfect form and claim that they have never ever seen a more adorable child, how can I even bare being the mother of such a perfect example of the human form?

Instead I have doctors who do not look at her, do not engage with her because what is the point? At hospitals I see parents of children with Downs who look away and are amazed when I make eye contact and smile. Their faces betray their habitual treatment, people do not do this, strangers do not make contact. The parents smile back at me with deep surprise and my heart breaks. For all of us.

Now let’s flip this coin over. There is the other side too.

We just watched Tropic Thunder. After the controversy I needed to see what the hubbub was all about. So we watched. We also watched the Public Service Announcement that appeared in the DVD extras at the very end of all browsing, the equivalent placement being in a shoe box, placed in a larger box, buried under furniture in the basement of an abandoned house. A cute little montage of children and adults with mental disabilities with an uplifting message about acceptance and respect. (My God, you could see the meeting where this was discussed and approved. It made my stomach turn.) And I was struck by the feast or famine nature of this whole thing. Either you are maligned, dismissed or ridiculed or you are canonized as a living saint teaching all us mentally proficient people a transformative lesson about love, and the way to a fulfilled life. It’s insulting.

Willa is no saint. She’s no retard either. The word is such a black mark because it functions as an indictment, of her future and of her potential. It attempts to say who she will be and what will happen to her. Rules accepted only by the uninitiated. And this is the important secret that no one tells you. It’s all a lie. It means, and I am understanding this more and more, it means absolutely nothing at all: ash in the wind, a fallacy.

What does this mean for my intelligence? The fact that I have a nine month old running my house, getting me to wash her, carry her everywhere, entertain her at will, live for her favor… This kid knows what time it is.

Thanks Willa, for teaching me about this word. It’s important. But you are a little devil and all the more wonderful for it. I promise you will always be my beautiful and completely untainted, unblemished, unbowed perfect daughter in my eyes, nothing less, nothing more.

2008-12-28T12:50:00.000-05:00

The First Real Scare

2008-12-28T12:48:00.001-05:00

And there we were, going along; waxing rhapsodic about diaper changes and then the house of cards comes down. I had only slightly understood what a house of cards is. I am now intimately familiar with this architecture. It’s funny, there’s no foundation.

I’ve been quiet on this page since the earliest December because we have been in the hospital. Our Willa, ever the adrenaline fiend, thought she would give us a good ole fashioned scare and teach us a Christmas lesson of love and gratitude. Didn’t particularly need the lesson but thanks anyway baby.

The morning of December 5th I awoke to the voice of my husband saying, “Oh my God.” This has not boded well in the past. For good reason. And now we had this sight to rocket us up and down to Philadelphia to Children’s Hospital at 6 am: she kicked out her g-tube overnight and the stoma had healed over. She smiled.

Long story short, g-tube was replaced in office by surgeon, sadly not in her stomach and the two feeds we emptied into her abdominal cavity combined with her meds produced a very unfortunate reaction. The baby went blue, her pupils would not react to light, she would not respond to me and she went very quiet.

She had emergency surgery to fix the tube and clean out her abdomen but by then she was a mess. She required a blood transfusion, she spiked a temp of 104 degrees, she wasn’t breathing and her heart rate was through the roof. She was also in terrible terrible pain.

It was the first time we were scared for her life and it was a singular experience to put it mildly. Colin and I stood like scarecrows at the foot of her bed while the doctors worked on her, tubes and wires leeched to her tiny frail body. She looked like a doll thrown into a thicket of brambles and just as unreachable. A piece of my heart broke off.

We then spent two weeks rebuilding, slowly slowly recalibrating everything. Her meds, her feeds, her calorie counts. Rather than bouncing back there were bouncelets. But she’s home, smiling again and she picked up a few new tricks in the hospital.

She’s yelling. Baby’s first vocalizations of any great volume. Willa yells, then looks at us with the greatest wonder. “Yes, you did that” we say and again, always, with her whole face, eyes and body, she smiles.

Our Christmas lessons of love and gratitude? Love your children and be thankful for them. They can be taken away. It’s that simple. The piece of my heart that broke off took its own journey this month. It came back to me carrying a suitcase plastered with foreign stickers of exotic locales. But it came back. We all did. And I am so very very happy.

The Center Falls Apart, The Diaper Cannot Hold

2008-12-02T17:00:00.000-05:00

I have managed to avoid the scatological in my musings here but this mum can stay mum no longer. I spend the predawn hours, covered, her ass to my elbow in poop. I knew parenting required its pound of flesh, and pee, and vomit with the inner workings of various mucus membranes being common parlance of my day. But we’re talking about bowel movements here that are beyond the realm of all that is holy. She’s 14 pounds. That’s it. Our cats are larger and in no way capable of this level of production.

A lot of my time is spent teasing out what’s Costello, what’s Willa and what’s random. There are all the medical considerations and then the developmental. We see so much through a doctor’s lens, or a therapist’s. Days are spent addressing issues that have nothing to do with parenting per se. We are bunkered in what I imagine mission controls the world over must look like: charts, important telephone calls coming in, a vague but persistent sense of threat.

But in those morning moments, wherein all is disgusting and bleary and bad smelling I feel most a mom. I suppose this is just to say, parenting is gross. Really really gross. It’s something we all share whether our kids have a syndrome or not. It’s the universal. If you had told me when I was on my three month’s bed rest that these were to be the moments I would cherish…well… let’s just say you might not have been invited back.

But they are. I do cherish them. She fusses, she relaxes, she wants me to kiss her feet and then she may actually, if I’m lucky, fall to sleep for a while: warm, comforted, freshly diapered and sweet smelling once again. I love her. I mean I love her with a passion that I have never felt. Even if at the same time I am desperate to wash my hands.

It’s the feeling of inclusion that most strikes me. When you have a baby that there are no books on you find a real challenge in recognizing yourself in anything. The books just do not cover this. I asked every doctor I met in the hospital in the beginning the same question over and over again. “Should I be reading parenting books? Or do they just not apply?” They never gave me an answer. None of them, and I asked many many doctors.

But how could they answer that? They didn’t know what I was really asking. My true question was, “Am I a mother? Is she a child? Are we just those simple things too?” I didn’t realize it at the time but that’s what I wanted to know. I had paged through my What to Expect and I just wasn’t finding anything applicable. I trolled Amazon for books with the keywords “disability, special needs, Costello Syndrome” to no avail.

I was an outsider amongst outsiders. My daughter did not have Down’s, did not have Cerebral Palsy, no Autism, no Noonan’s. If you had told me when Willa was in the NICU that these were to be the syndromes I would envy…well…let’s just say you might not have made it out of the room alive.

But sometimes I do. And again, it’s for the inclusion they offer. For a knowing nod of the head once in a while in a waiting room, for a doctor’s experience and for the absence of the following common exchange, “She has Costello Syndrome.” “Huh. I’ve never heard of that…”

And then there was poop. We all know poop. It’s something to laugh about with other moms. They have nothing to feel weird about nor intimidated by, not wanting to say the wrong thing, not knowing where to put their eyes, or how much to ask, not wishing to offend. We all of us belong in the “parenting is gross” moments and I thank God for them.

Diaper changes.

Yet again, who knew?

I.V. Pole

2008-11-26T06:50:00.000-05:00

I’ve been thinking quite a bit about Morandi’s still lifes. Well, even more about Morandi I suppose and how he painted those same few bottles, vases, fruit bowls, containers of varying description for decades. He chose his palate early, he found his subject and he adhered to them faithfully. But these still lifes transcend. In this one it is a portrait, in this other a landscape. The every day objects of his small collection anthropomorphize, they grow outside of their function, they stretch the confines of their purpose. Morandi saw something more in these little objects and he found in them a life’s work.

We bought our house a few years ago. Spent the many hours painting the walls, hammering in the pictures, reconfiguring furniture. We took the time to step back and consider it. We locked it all into place. In all our iterations of how the bedroom would be set up never did we picture it with an IV pole. That was to come later.

Willa came home after her first month in the hospital to a fresh delivery from the medical supply company. We had an enteral pump with which to feed her, syringes, bags, tape of mysterious origin and an IV pole. That was the thing that stopped me in my dusty tracks. The IV pole is a serious thing.

For one, it’s large. For another, silver, new and gleaming. I’ve only ever seen these in one of two possible places: hospitals or movies. Which was I in?

It stands sentinel now in our room at the head of Willa’s bassinet. As she feeds overnight from her eight-hour ordeal, and ours by extension, the pole holds her pump and bag aloft. One of the many images of my life that sets a tableau of weirdness. It’s almost a normal scene: baby asleep in bassinet next to mom and dad’s bed, but wait, what’s that?

Everything in this house is just a little slant.

In the middle of the night I see it, the light from the street lamp setting off its curves, casting a bizarre shadow on the wall behind me. It morphs in my exhausted eyes into a beautiful tree, then a curling snake, a high rise for praying mantis, a robot of the future, an elaborate assistive laundry device.

It’s all in how you look at it.

This, all this, is life taking its own shape. There is the introduction of something new, throwing off all the corners, bleeding out the frame, forever twisting sight into a new reality. Even when we can order all our images, stack all the boxes, put in line all our life’s plans and intentions, they may decide themselves, “I am not a still life. I am a landscape. I am a portrait.”

Morandi painted his beautiful paintings in his bedroom. He had a set up to facilitate this, right there at the foot of his bed. In a little room, making little paintings of little things whole worlds were traveled, peoples met. I look at my room now and know that I have only just begun to see things in their new way. My eyes have been forever changed for objects. In this place they mean so much more than their function, their original purpose. Their meaning transcends and in order to see the beauty in all these new things, the beauty that I learn every day is stubbornly there, so must I.

Dear Breast Pump,

2008-11-23T09:25:00.000-05:00

Listen, I think we need to talk. This just isn’t working for me anymore. I’ve tried to figure out a way for us to move forward, spending more time together, making things special, remembering that you only want the best for me and my baby… But it hasn’t been good for a while now and after seven months I just have to know and trust myself that we need to let this go. We tried. There’s nothing you can say to me anymore. I wish you well, but goodbye…

And I swear to God it takes this level of commitment to get this infernal contraption out of my life.

Willa does not eat by mouth. She was never that into it as we say, it’s a universal Costello trait that held true and so I have been pumping since the day she was born, every three or so hours for seven months now and I am done. It’s killing me.

I looked up weaning in my trusty What to Expect The First Year and Jesus H. Christ; I haven’t been guilted this much since catholic school. You would think I was holding a meeting with the baby saying, “Look, I don’t love you as much as I should and I am going to take something away from you now that is incredibly important all because I am a selfish bastard who can never provide you with what you really need. Let’s just get that out of the way now.”

The other charming advice centers on how you are going to have an emotional meltdown as you sacrifice this bond with your child, throwing it away to oblivion, never to reclaim the closeness again. Once you sever the emotional attachment of breastfeeding you are half the mom you used to be. Well, sure I have an emotional attachment to the breast pump, in fact a codependent very unhealthy relationship but still… I will be happy to see the back of it.

Why do we do this to ourselves? Why? I mean really. I agonized over this decision for weeks, pumps attached to breast, wrestling with the decision. Then I told my husband. I asked him if he thought I was a bad mother. I sat on it more. Then I broached the subject with Willa’s nurses, on separate days, independently, testing out the words, listening to how it all sounded, “I’m thinking about weaning Biscuits.” I’d pause. “I mean, it’s been seven months and I am just so worn out and I’m not really producing any more and I think she’s gotten the important start she needed.” I wait again. I expect them to turn towards me, mothers themselves, nurses by profession safeguarding the health and well being of their young charges, I expect them to say, “You have to be kidding. Are you trying to kill your daughter?”

But they don’t. Not at all. They say, “That makes a lot of sense.” My husband says, “You did a fantastic job.” My heart tells me that it is just as full of fiery love for my girl as it was when the contraption pumped away. My breasts say, “Save us.”

And the rub of it all? Baby responds better to formula than to my breast milk. She’s more comfortable. She pukes less. She’s fine. Just fine. There is no haunting look in her eyes pleading me not to abandon her, there’s no hesitation in her grasp of my index finger. She appears to love me just as much.

So, bye bye breast pump. Thank you for our time together but now that it’s done I release you, and more importantly, I release myself.

xx

And Then a Plank in Reason Broke or Who knew?

2008-11-17T16:37:00.000-05:00

My first trimester was punctuated minute by minute with one of the following: vomiting, gagging, dry-heaving or at the very least an overwhelming nausea. I carried plastic bags in the car in which to retch while driving. I accustomed my coworkers to having me stop mid sentence, stare blankly into the middle distance for a second, then sprint to the bathroom to rattle the corridors with the sounds of my puking. It felt as if I had the worst hangover of my life for three straight months. Nothing I accomplished in my collegiate years could have prepared me for the brain crushing magnitude of this. Little did I know, these were to be the best days of my pregnancy.

At 13 weeks I went, alone, to my integrated screen. We all get these now, or at least our obstetrician's recommend them. I chatted with the technician about how, "Yes, this was to be our first. Yes, I feel awful. Isn't it all lovely?" I laid back and luxuriated in another ultrasound, peering into the hushed world of my growing child in the warm dark room these things happen in. The tech stopped talking. I noticed she was taking the same measurement over and over again. She was concentrating. I began to be scared.

An increased neuchal translucency. That's what we had. An increased NT. I met with the genetic counselor who informed me that this could mean Downs or another trisomy. That this could mean a heart deformity or a chromosomal abnormality. That I should have an amnio to investigate. That, then again, everything could be normal.

I had all the tests. The results stubbornly came back fine, every time. I continued to be relieved and tried with all my power to avoid the concern in my husband's eyes. To blot out all worry, all questions, all feelings something was wrong. I was angry with anyone who asked me about it. I was hell bent on normalcy. Then I went into premature labor at 23 weeks. I spent two weeks in the hospital. I took the drugs. I barely moved. I prayed to what I now knew was a daughter to stay with me. I begged her to keep living inside me because she was going to be fine. I held onto the roundness in the dark willing it to give her strength and I tried not to cry because I did not want to scare her.

Three months of bed rest followed. "The baby is normal. The baby is normal." The new thing that punctuated every thought, that kept me company through the long winter days. Finally the waters broke and Willa came. Well... the baby was not normal.

Willa's first month was spent in the hospital, diagnosing. We were lucky. Someone knew what it was. Our girl has Costello Syndrome. It is an incredibly rare gene mutation that happens randomly, causing all kinds of issues. There is not one system of Willa's little body that is not touched by difference, by some level of difficulty, by irregularity. She will have developmental delay, mental retardation, she runs a 17% risk of having cancer, she will never be independent. Our baby will be a baby for a long time. And then, our children have amazingly sociable and sunny personalities. They have a marked sense of humor, they are short, they have heart problems, they have long memories and remarkably well-developed fluid reasoning skills.

There are also so few people with Costello (1 in 30,000,000 that's million... It seems almost statistically impossible to get this syndrome. there are 300 people diagnosed in the world. That's world...) that we have no idea what to expect for her. Each child writes their own story, each child has their own combination of health problems, learning difficulties, personality traits, personal style, taste in music, age when requesting a cell phone or designer jeans. These kids are kids too you see.

Try telling all this to the lady behind the counter at the market who says, "Oh! You had the baby! Everything ok?"

Well...

You learn something very important about people very quickly. Everyone is willing to take your lead. I do not burden the casual askers with too much information but I always tell them the truth. To friends and family I tell the whole long list. A list that is longer than the one above. It takes a while to explain it all. But there is happiness still in my voice as I tell it because this girl is a keeper man. I love her.

I have all kinds of opinions about medical technology. I absolutely ask the question, just because we can, should we? I have alot to say about keeping such pregnancies and not keeping such pregnancies, about our role as parents starting at conception and the terrible responsibility of playing God.

But none of that matters now. Willa sleeps near me. I can hear her breathing and that hand I dreamt of holding on a dark night in the hospital reaches out for me. All that matters in my life is that I hold it and lead her far enough for her to be able to push me aside and walk on her own. Some day...