tag:blogger.com,1999:blog-27944854311913246812024-03-19T04:41:18.037-04:00Living in Invisible CitiesEvery day with Willa we traveled to a new place. From thinking she would be a typical child, to learning she was not, to discovering, now that she is gone, who in fact she continues to be. We live in Invisible Cities, each one more strange and beautiful than the last.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.comBlogger56125tag:blogger.com,1999:blog-2794485431191324681.post-75613674361480697792011-12-04T13:25:00.005-05:002011-12-04T13:37:17.073-05:00Other People's Rooms<style> <!-- /* Font Definitions */ @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:Cambria; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:3 0 0 0 1 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-unhide:no; mso-style-qformat:yes; mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} .MsoChpDefault {mso-style-type:export-only; mso-default-props:yes; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} @page WordSection1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.WordSection1 {page:WordSection1;} --> </style> <p class="MsoNormal">Sometimes my mind goes walking around in rooms that do not belong to me.<br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal">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.<br /></p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com5tag:blogger.com,1999:blog-2794485431191324681.post-12357602157355917892011-09-22T14:25:00.002-04:002011-09-22T14:33:41.222-04:00House and Home<style> <!-- /* Font Definitions */ @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:Cambria; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:-536870145 1073743103 0 0 415 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-unhide:no; mso-style-qformat:yes; mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} .MsoChpDefault {mso-style-type:export-only; mso-default-props:yes; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} @page WordSection1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.WordSection1 {page:WordSection1;} --> </style> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">It’s clean of her.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I love this place.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">So we moved.<br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal">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 <i style="mso-bidi-font-style:normal">from</i> anything but instead <i style="mso-bidi-font-style:normal">for </i>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.</p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com7tag:blogger.com,1999:blog-2794485431191324681.post-83070364946893080272011-08-11T13:03:00.001-04:002011-08-11T13:06:17.402-04:00For the Concerned <style> <!-- /* Font Definitions */ @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:Cambria; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:-536870145 1073743103 0 0 415 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-unhide:no; mso-style-qformat:yes; mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} .MsoChpDefault {mso-style-type:export-only; mso-default-props:yes; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} @page WordSection1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.WordSection1 {page:WordSection1;} --> </style> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.
<br /></p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.
<br /></p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.
<br /></p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.
<br /></p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.
<br /></p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<span style="mso-spacerun:yes"> </span>It even makes me feel most like myself. It is the authentic me, the honest one.
<br /></p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<span style="mso-spacerun:yes"> </span>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.</p><p class="MsoNormal">
<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Thank you.<span style="mso-spacerun:yes"> </span>Come back and visit me. I promise to remember the light, maybe even to write about it more.
<br /></p><p class="MsoNormal">
<br /></p><p class="MsoNormal">All in due time.</p> <p class="MsoNormal"> </p> <p class="MsoNormal"> </p> invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com11tag:blogger.com,1999:blog-2794485431191324681.post-48262853258725406312011-07-19T12:27:00.000-04:002011-07-19T12:29:16.847-04:00In the House Now<style> <!-- /* Font Definitions */ @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:"Cambria Math"; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:3 0 0 0 1 0;} @font-face {font-family:Cambria; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:-536870145 1073743103 0 0 415 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-unhide:no; mso-style-qformat:yes; mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} .MsoChpDefault {mso-style-type:export-only; mso-default-props:yes; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} @page WordSection1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.WordSection1 {page:WordSection1;} --> </style> <p class="MsoNormal" style="text-align:justify;text-justify:inter-ideograph">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 <i style="mso-bidi-font-style:normal">this</i>. 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. </p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com5tag:blogger.com,1999:blog-2794485431191324681.post-83068334947721792702011-07-19T12:11:00.002-04:002011-07-19T12:14:09.929-04:00The State of Things<style> <!-- /* Font Definitions */ @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:"MS 明朝"; panose-1:0 0 0 0 0 0 0 0 0 0; mso-font-charset:128; mso-generic-font-family:roman; mso-font-format:other; mso-font-pitch:fixed; mso-font-signature:1 134676480 16 0 131072 0;} @font-face {font-family:Cambria; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:-536870145 1073743103 0 0 415 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-unhide:no; mso-style-qformat:yes; mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} .MsoChpDefault {mso-style-type:export-only; mso-default-props:yes; font-family:Cambria; mso-ascii-font-family:Cambria; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"MS 明朝"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Cambria; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} @page WordSection1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.WordSection1 {page:WordSection1;} --> </style> <p class="MsoNormal">Grief has made a mute of me.<span style="mso-spacerun:yes"> </span>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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I’m having trouble moving forward.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I’m having trouble wanting to move forward.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I’m lost in the woods. Around me are the violent pops of boughs breaking. The grotesque lullaby rings in my ears. <i style="">Rockabye baby…on the treetop…when the wind blows…</i></p><p class="MsoNormal"><i style="mso-bidi-font-style: normal"><br /></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I keep getting sick.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I keep taking antibiotics.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I haven’t had this many courses of antibiotics since I was a strep-prone child.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">How am I going to clean out your things?<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Can therapy help?</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Can moving to New York?</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Can Pilates?</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Can nights out?</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Movies?</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Talking?</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Writing?</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Is there any help? Is this possible?</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">What will I create?</p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com3tag:blogger.com,1999:blog-2794485431191324681.post-57504573191575876992011-02-06T17:32:00.003-05:002011-02-06T17:38:06.354-05:00Molecules<style>@font-face { font-family: "MS 明朝"; }@font-face { font-family: "MS 明朝"; }@font-face { font-family: "Cambria"; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: Cambria; }.MsoChpDefault { font-family: Cambria; }div.WordSection1 { page: WordSection1; }</style> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Before the morning of July 9<sup>th</sup> 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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">And then that day came.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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. </p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I live in Pennsylvania. There is no ocean here.<span style=""> </span>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.</p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com6tag:blogger.com,1999:blog-2794485431191324681.post-5044677838859818362011-01-26T16:15:00.001-05:002011-01-26T16:16:17.977-05:00The Invisible City of Lead Weights<style>@font-face { font-family: "MS 明朝"; }@font-face { font-family: "MS 明朝"; }@font-face { font-family: "Cambria"; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: Cambria; }.MsoChpDefault { font-family: Cambria; }div.WordSection1 { page: WordSection1; }</style> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com5tag:blogger.com,1999:blog-2794485431191324681.post-36006385097979956892011-01-18T17:09:00.002-05:002011-01-18T17:09:59.327-05:00Heart Walk<style>@font-face { font-family: "MS 明朝"; }@font-face { font-family: "MS 明朝"; }@font-face { font-family: "Cambria"; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: Cambria; }.MsoChpDefault { font-family: Cambria; }div.WordSection1 { page: WordSection1; }</style> <p class="MsoNormal" style="text-align: justify;">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.</p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com2tag:blogger.com,1999:blog-2794485431191324681.post-33315138380924983562011-01-02T15:23:00.003-05:002011-01-02T15:35:58.756-05:00All the Things That Died<style>@font-face { font-family: "MS 明朝"; }@font-face { font-family: "MS 明朝"; }@font-face { font-family: "Cambria"; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: Cambria; }.MsoChpDefault { font-family: Cambria; }div.WordSection1 { page: WordSection1; }</style> <style>@font-face { font-family: "MS 明朝"; }@font-face { font-family: "MS 明朝"; }@font-face { font-family: "Cambria"; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: Cambria; }.MsoChpDefault { font-family: Cambria; }div.WordSection1 { page: WordSection1; }</style> <p class="MsoNormal">Willa died. Then our car died. Then our phones died too.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I nodded. “That’s right honey. Willa died.” B. ran to her mother’s legs. She buried her face in bare knees and cried.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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. <span style=""> </span>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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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?<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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. <span style=""> </span>And again, that means that she really is dead and gone. She isn’t coming back. I can never have more.<span style=""> </span>I will never have any more of her.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">And so it does, even on the dead.</p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com7tag:blogger.com,1999:blog-2794485431191324681.post-82593860590187000332010-12-05T15:04:00.003-05:002010-12-05T15:06:59.233-05:00Questions and Answers<style>@font-face { font-family: "Times New Roman"; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: "Times New Roman"; }table.MsoNormalTable { font-size: 10pt; font-family: "Times New Roman"; }div.Section1 { page: Section1; }</style> <p class="MsoNormal" style="text-align: justify;">And then there are the questions we must answer.<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.”</p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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?”<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.</p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">Now Willa is gone. She died. She died on July 9<sup>th</sup>. 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.<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.</p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.<br /></p><p class="MsoNormal" style="text-align: justify;"><br /></p> <p class="MsoNormal" style="text-align: justify;"> </p> <p class="MsoNormal" style="text-align: justify;">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.</p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com5tag:blogger.com,1999:blog-2794485431191324681.post-87891700978176543502010-11-09T12:47:00.003-05:002010-11-09T12:54:55.371-05:00The New World<style>@font-face { font-family: "Times New Roman"; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: "Times New Roman"; }table.MsoNormalTable { font-size: 10pt; font-family: "Times New Roman"; }div.Section1 { page: Section1; }</style> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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.</p> <p class="MsoNormal"> </p> <p class="MsoNormal"><br /></p><p class="MsoNormal">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.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">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. </p>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com8tag:blogger.com,1999:blog-2794485431191324681.post-8985938013080093402010-07-19T15:38:00.001-04:002010-07-19T15:38:23.879-04:00Willa's Eulogy; A Letter<p class="ecxMsoNormal">Dearest Willa,</p> <p class="ecxMsoNormal"> </p> <p class="ecxMsoNormal">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.</p> <p class="ecxMsoNormal"> </p> <p class="ecxMsoNormal">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.</p> <p class="ecxMsoNormal"> </p> <p class="ecxMsoNormal">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.</p> <p class="ecxMsoNormal"> </p> <p class="ecxMsoNormal">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.</p> <p class="ecxMsoNormal"> </p> <p class="ecxMsoNormal">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. </p> <p class="ecxMsoNormal"> </p> <p class="ecxMsoNormal">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. </p> <p class="ecxMsoNormal"> </p> <p class="ecxMsoNormal">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. </p> <p class="ecxMsoNormal"> </p> <span style="font-size: 12pt; font-family: 'Times New Roman';">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.</span>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com11tag:blogger.com,1999:blog-2794485431191324681.post-82583805091257156922010-07-16T14:19:00.004-04:002010-07-16T14:35:36.110-04:00She's Gone<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUgf0MrrLZB7lAD5NZnSRAaAowhlidfy9tfImPSCNcvJuzvoB-0kYsNoETGQ_q0i9g_nZBGG1SulyDVZwfb2nEWl6cWOElWoT_y1bIo90bgjazmxygOCQNqMdt6geoMK4VrPO5KxMnlQw/s1600/IMG_1955.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUgf0MrrLZB7lAD5NZnSRAaAowhlidfy9tfImPSCNcvJuzvoB-0kYsNoETGQ_q0i9g_nZBGG1SulyDVZwfb2nEWl6cWOElWoT_y1bIo90bgjazmxygOCQNqMdt6geoMK4VrPO5KxMnlQw/s400/IMG_1955.JPG" alt="" id="BLOGGER_PHOTO_ID_5494573961420400034" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLLlLOwu72rwXk48T6W2iF7AGaD5itk8ku7iOIhlMatK6AR1zstcnJsG0T90JhvfDTaEx5TKEMr0_1Pw91WgA2HPMKU_C3Bglw5bKdB7-O9qifZKpNguKhynZnotRRMJwRMzByvYX0umQ/s1600/IMG_0454.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLLlLOwu72rwXk48T6W2iF7AGaD5itk8ku7iOIhlMatK6AR1zstcnJsG0T90JhvfDTaEx5TKEMr0_1Pw91WgA2HPMKU_C3Bglw5bKdB7-O9qifZKpNguKhynZnotRRMJwRMzByvYX0umQ/s400/IMG_0454.JPG" alt="" id="BLOGGER_PHOTO_ID_5494571112956325218" border="0" /></a><br /><br /><br /><div style="text-align: center; font-weight: bold;">Willa Clementine Hunt<br />3-23-08 ~ 7-9-10<br /><br /><div style="text-align: center;"><br /></div></div>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com17tag:blogger.com,1999:blog-2794485431191324681.post-87890784101151689992010-06-22T05:45:00.003-04:002010-06-22T05:48:54.617-04:00Pain ManagementWilla 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. <br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com15tag:blogger.com,1999:blog-2794485431191324681.post-11154505918131782812010-04-24T16:34:00.003-04:002010-04-24T16:46:40.529-04:00The Invisible City of Lost Pieces and Gathered LightWe 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. <br /><br />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.<br /><br />And yet…<br /><br />I find other things too. <br /><br />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.<br /><br />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.<br /><br />And that’s what Willa does. <br /><br />And that’s how it goes. <br /><span style="font-weight:bold;"></span>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com8tag:blogger.com,1999:blog-2794485431191324681.post-2529578480494882942010-03-15T23:05:00.001-04:002010-03-15T23:05:57.012-04:00The Invisible City of the Long Long FallThere 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. <br /><br />That you cannot even see a bottom. <br /><br />That you are still falling. <br /><br />That you may be here for some time.<br /><br />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.<br /><br />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.<br /><br />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.) <br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com19tag:blogger.com,1999:blog-2794485431191324681.post-59408701536340901142010-02-06T13:42:00.000-05:002010-02-06T13:43:30.373-05:00When There Are No WordsYesterday 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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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: <br /><br />When Willa dies so much of me will die with her, will I have anything left? <br /><br />Will I still be a mother? <br /><br />Will I learn to live without her? <br /><br />Can I forgive myself if I do?<br /><br />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. <br /><br />There are just no words.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com24tag:blogger.com,1999:blog-2794485431191324681.post-53163934032567351362009-12-29T22:32:00.001-05:002009-12-29T22:35:57.022-05:00In the Shadow of the MoonThere’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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.”<br /><br />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.”<br /><br />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.<br /><br />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.<br /><br />This is what cancer does. <br /><br />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. <br /><br />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. <br /><br />The moon hovers in the frozen sky. Diamond-hard and winking its one eye. All my life has been frozen and smashed to shards. <br /><br />But I still believe in the sun.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com7tag:blogger.com,1999:blog-2794485431191324681.post-5405543735513504282009-12-13T11:35:00.001-05:002009-12-13T11:35:58.032-05:00The Invisible City of the KidnappedI 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.<br /><br />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. <br /><br />I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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. <br /><br />Willa has cancer. <br /><br />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? <br /><br />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.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com12tag:blogger.com,1999:blog-2794485431191324681.post-30325443972375977422009-10-16T15:10:00.000-04:002009-10-16T15:11:22.422-04:00PrayerThe 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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com5tag:blogger.com,1999:blog-2794485431191324681.post-26536388033407599662009-09-02T12:30:00.000-04:002009-09-02T12:35:53.959-04:00Spica! And I'm Teething Too...<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht7BEBNHCU5tfsxbW7pxGngFBk8LZFA_Df9o-9VvzO4EUKKDDU41xZU30_LlDCOjs0Y02tu9o9pxGYiXO9jzUN2uJbd_QMMk0ruFeUKwOeYzTDNxh6pgzr_tm88sGzLMfX0chTBnKmODg/s1600-h/IMG_1292.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht7BEBNHCU5tfsxbW7pxGngFBk8LZFA_Df9o-9VvzO4EUKKDDU41xZU30_LlDCOjs0Y02tu9o9pxGYiXO9jzUN2uJbd_QMMk0ruFeUKwOeYzTDNxh6pgzr_tm88sGzLMfX0chTBnKmODg/s400/IMG_1292.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5376909424289214130" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtYQZEyv1D-9GKpAUpgi9LzGyhPxOioouFDLiY3sICj4i0Hfx3229JSYpLkn6odYy7u_mEjUK9Z1sG7ruQtr2CxXzP_B5I0K3ykh-bXOPscEvcuZY1V8OvVN9MxQFsgRgcB0YT48mrq3o/s1600-h/IMG_1290.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtYQZEyv1D-9GKpAUpgi9LzGyhPxOioouFDLiY3sICj4i0Hfx3229JSYpLkn6odYy7u_mEjUK9Z1sG7ruQtr2CxXzP_B5I0K3ykh-bXOPscEvcuZY1V8OvVN9MxQFsgRgcB0YT48mrq3o/s400/IMG_1290.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5376909419290203458" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbTz4KT3Of9Cogn-dSexxUX3mot-BsabsQ4BAPtzC2atGNID1_tQjaQg35WxA0tBDKYP4Wjl2liUYFu-2KNmo7G_9TXcLjgHPpbV0djIIdERywu0e1O0bs5sUX9uu6UWtnq_pOjmbC7rE/s1600-h/IMG_1312.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbTz4KT3Of9Cogn-dSexxUX3mot-BsabsQ4BAPtzC2atGNID1_tQjaQg35WxA0tBDKYP4Wjl2liUYFu-2KNmo7G_9TXcLjgHPpbV0djIIdERywu0e1O0bs5sUX9uu6UWtnq_pOjmbC7rE/s400/IMG_1312.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5376909410830320034" /></a>invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com9tag:blogger.com,1999:blog-2794485431191324681.post-73848852421226971402009-08-27T18:16:00.001-04:002009-08-27T18:18:33.845-04:00Talking To MyselfThe 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.<br /><br />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 <span style="font-style:italic;">opening the box</span>. I tell her that Daddy particularly loves his vegetables and <span style="font-style:italic;">won’t it be wonderful when one day you dear baby will be able to share in this meal we will soon eat</span>. I go on and on.<br /><br />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.<br /><br />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 <span style="font-style:italic;">opening the olives</span>, <span style="font-style:italic;">turning on the water</span>, being careful <span style="font-style:italic;">cause the stove is hot!</span> 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.<br /><br />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. <br /><br />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.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com3tag:blogger.com,1999:blog-2794485431191324681.post-29737236035732093972009-08-12T10:35:00.004-04:002009-08-12T10:51:11.945-04:00Hospital III or The Invisible City of the WaitI 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.<br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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...invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com4tag:blogger.com,1999:blog-2794485431191324681.post-56004279799154508872009-07-11T12:25:00.000-04:002009-07-11T12:26:18.750-04:00Updates and a FixIt 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… <br /><br />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…<br /><br />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. <br /><br />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. <br /><br />Another new happened as well. This is a surgery that should “fix” the problem. It surprised me. <span style="font-style:italic;">Fix</span>? 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. <br /><br />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. <br /><br />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.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com1tag:blogger.com,1999:blog-2794485431191324681.post-39405477005852438992009-06-21T13:32:00.001-04:002009-06-21T13:33:40.223-04:00Father's DayIt’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.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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 <span style="font-style:italic;">her</span> bones, that fires the fierce warmth inside her tiny self: <span style="font-style:italic;">you</span> are her daddy. <br /><br />Happy Father’s Day.invisiblecitieshttp://www.blogger.com/profile/04308859528075340554noreply@blogger.com1