30 July 2011
29 July 2011
28 July 2011
27 July 2011
26 July 2011 evening
As bazaar as it might sound, we have another funeral to go to tomorrow. David’s Uncle Walter Sarvet died last night. He has fought Parkinson’s disease for many years, and his death does not shock but the timing is unnerving. As if there is a tear in the fabric between the planes of existence and room for another soul to pass from one world to the next. Existence feels so very fluid and life very, very fragile.
We will travel out to Queens tomorrow after Cheshire collects some of grandpa’s record collection. We will listen to another Rabbi pray and sing. I will think of how it would have been if David was here, doing these things, going to these places. And I will feel as I feel. Here. Now.
Last night, we were asked if there were any words any of us would like to say at today’s service. I forgot all about this request until an hour before we needed to leave today. I know I frustrated Cheshire with my forgetfulness. I jotted a few notes, and said the following:
I want to share two small parts of Dad that I will carry with me always.
The relationship that he had with David. It was a relationship that deepened and grew through the years. David and his father shared books and movies, ideas and opinions, and pieces from the New York Times which arrived at regular intervals in our mail box. Dad did not always understand David’s choices, but I hope he took real joy from David’s achievements because David always wanted to make his father proud.
Dad loved his grandchildren. He doted on Cheshire, worrying about her choices, applauding her achievements, and always wanting to know what was next for her. He wanted always to be a part of her life. And I heard, sometimes through David, all about Wendy and Michael -- their lives, their partners and most recently their children. Dad took a lot of joy in this younger generation, I think more than he expected.
Dad was curious and kind, generous and gracious, intelligent and interesting, and I was so very fortunate to have him in my life for such a long time.
David would have been more eloquent, his text would have been richer, but I do what I can and honor both men as I am able.
At the service and at shiva at cousin Ilene’s house which followed, Julia behaved very well. She was quiet, she listened to what was going on, she did not fidget or act bored, she did as I asked. When she was able and had my permission, she colored, played with lego, and played with her leapster. This is not easy for her. I know that. She knows that I am pleased but I hope I can find something really special for her in the next days.
I know I’ve written this before, but I had wondered how to spend this week. How foolish this wondering. Life, the end of it and the celebration of it, rushes in without thought to my wonderings.
26 July 2011 morning
Tuesday. Cut off from the tedium of the day-to-day schedules, I am beginning to lose touch with day names. Is this close to the world that Julia lives in? But she is working towards recognizing day names and dates, not leaving them behind, if only for a short time.
Today is Dad’s funeral. Even on contemplation, I emotional brace, straighten my back, raise my shoulders when I need to let it flow through me. I want to let it happen as it needs to, offer comfort and goodness to those who will be bringing hurts and anger and resentment, and accept the comfort from those who have it to share. This is a tall order for me. Maybe better to call it a prayer.
I question the universe, but accept the blessing, of planning this time, the few days of this week, so loosely. I am not saying that I saw this death happening and planned my vacation trip accordingly, but I simply followed the impulse to connect the week with my sister in Virginia and the week at Chautauqua with some time with Lisa in Maryland and then days in and around NYC with few plans. I had thought of a few walks in the city that Julia and I could do, a few museums that we might visit, a show, but there were no tickets bought, no plans to see old friends, very, very little to change to accommodate this death. No jarring and abrupt change of course, just a folding in, the chance to accept, be present, and not add to the hill of regrets or resentments.
I have some anger and sadness that Dad did not see me in Florida. I could have used that gift of a last visit, but we have talked on the phone very often in the year between David’s death and his. At times, I believed that we were building our relationship, although I also believed that I was only a sharp-edged reminder to him of what he had lost. I believe that David’s death resurrected memories of David’s mother, Inez’s death and his mourning her. I may be wrong. Maybe not. I had hoped that in time we could have talked about some of that, talked about moving on from the death of a beloved partner, talked some about David’s life and his perspective on that life. When I did see him last fall, it was for a short time and with his wife, Claire. Anything about David was far too raw for me to examine closely and everything was fodder for Claire’s complaints and bad humor. And so, we talked of the inconsequential and mundane. I need to take a lesson from that and not carry the regrets of subjects not broached.
Cheshire drove from Maryland to New Jersey -- one of the shortest legs of my journeying, but a leg nonetheless. Lovely to sit in the passenger seat and offer conversation and advice. Julia puttered away the day -- leapster in the car, then coloring and clay all the rest of the day whenever we were not moving. We did a bit of math work in the afternoon, as we passed time at Uncle Harold’s house. I need to depend on her ability to amuse herself today as well. Her behavior has been quite splendid overall, not perfect by any means, but then she is a kid and herself.
Last night, after suppered at a Thai restaurant with Uncle Harold, we stopped in a fancy grocery store to pick up a few things for breakfast. At the check out line, Julia noticed a funny stuffed dinosaur on top of one of the registers. She wanted to touch it but accepted my refusal to bring it to her easily. She did like what it looked liked and was talking about it. The store was quite empty except for another customer who was checking out an amply filled basket in front of us in line and we had to wait. A manager came by, asked staff to open another register for us, and then engaged Julia in a bit of conversation. She directed him to the dinosaur and he took it down and gave it to her. I thought to hold and examine, but he meant her to have it. It was very sweet. She was so happy. And I think, so was he.
The new dinosaur, whose has been named although it is a made up name that I have not retained, was tucked in bed with Lizzy when we got home and seems to have rested comfortably. Julia told us in the car on the way home that the new dinosaur was feeling badly. In other circumstances, I might have pursued that a bit -- wondering if the feelings were related to adoption and a new family -- but I let it go. Not appropriate timing.
We are staying -- Julia, Cheshire, and I -- with Uncle Harold, David’s mother’s brother. I took him up on a long held invitation to stay with him when I was out east. I have known him and his wife, Lois who died a few months before David last year, for 35 years, and although we visited them when we could, we never stayed with them. And although I had planned to have dinner with him on Monday before Dad died, I had planned for only dinner. Once again, he offered his house to us and I accepted. So, after our drive we spent a very quiet time -- two meals, some lovely time on an enclosed porch which I had never noticed before (I am sure it is a relatively recent addition to the house, but I guess it could be 15 years old. Did we always visit in winter? Possibly.) watching and listening to the rain and talking, and watching Harold work his potter’s wheel. He demonstrated making a bowl, a cup, a vase, and a small closed piece, and we looked at his sculpture. Julia was enthusiastic at times, and then at times, lost in a sculpture book that Harold was using for reference. He has a kiln as well so is able to go through all of the steps of the process of producing pieces. What fun and how lovely. Made my hands itch to do the same. I did, at times, have to keep a firm hold on Julia. I knew her fingers were itching. It is a hobby of his, taken on after retirement, but the work satisfies him. He is very happy doing it and it is pleasing. The work gets more interesting each time I see it.
Note: The new dinosaur’s name is Lukey.
Before Julia went to bed last night, she said good night to Uncle Harold. She asked how his heart was feeling and if he would live. She does it in an quirky, disarming way. The questions seem to come out of nowhere but I know her concern.
24 July 2011
23 July 2011
The pictures are not the best but the tubing pictures were beyond the real scope of my camera. Still, blurry or not, the capture a bit of joy. Julia was found by a little girl, Angel, who decided to play with her and after much swimming and hunting for critters in the shallows, they enjoyed a tube ride.
22 July 2011
21 July 2011
This says it all! Julia on a horse -- forgive me, Barbara, but I forget whether this is Dan or Lindsey -- sitting up straight, looking pretty fearless.
We joked that "farm livin' is the life for me," but I think that the incredible log house is pretty incredible sitting in the lovely hills and valleys.
20 July 2011
Julia and Leeanne rode in the back of little truck. Julia complained, yelled, and loved it.
So, not so much but complaining about the walk in the woods.
A stick helps.
19 July 2011 (evening)
It was hot today, although I heard through Ed, my contractor, that there is plenty of heat in Wisconsin.
From Ed: The furniture is out of the house. The movers ripped the leather on my leather chair. I suspect we will figure that one out but they are insured, so a fix is in order. The floor is sanded and staining tomorrow. Depending how that goes, the floors will be finished Thursday or Friday. Painting will begin Tuesday of next week. It will be Ed’s task then to get the bookcases built and in before we return. Can’t wait to see it all!
Early this morning Julia and I worked. We did strong sitting, and I vowed to do it ever day possible for the journey. She has much more control over herself with the sitting as a basis. Then we did some math work. She arranged her tiles up to 60 today and counted by 1’s and 10’s by herself. She is getting better at 2’s and 5’s. We did morning parade and she seems to get “between.” I am ready to introduce before and after. I had a few workbooks to do a third activity and she picked the word book and did two pages of beginning sounds.
We picked blueberries this morning and early afternoon. It was pleasant, sweet, quiet, work. No overseer or owner to even check on our work. We took pails out of the box, filled them, put the money in the same box, put the berries in the plastic bags provided. We picked two quarts to take to Lisa’s. We ate along the way -- sweet and tart, just lovely. Julia helped with the picking for a good deal of the time and then went to the end of the bush row to catch grass hoppers. She caught a green one and a white one. Was the white one a grasshopper? I am not sure.
Julia has eaten a good lunch for the last 3 days. Farm living? Also, tonight at supper at a Chinese restaurant, she ate like she was off medication.
We visited Karen and Bob, old time family friends from Jersey days, who are very friendly with Barb and Steve, and who now live in Virginia. I brought Julia’s clay which she has not touched since we left home. She had a good time playing with it for a few hours. Leeanne was with us again today -- she is a dear girl, attentive to Julia and sweet to the grownups. Still, not a creative bone in her body. She had no interest in the clay although she watched Julia in amazement.
Karen has become obsessed with her family tree and has been willing to share what she knows with me. She also translated some of letters written to my grandmother from the 1920 to 1959. There are not that many but they have been a mystery to me as they are written in Ukrainian and French. Karen has the ability to read in both languages which is lovely for me. I have long wanted to work on a family tree and as I go through the remaining boxes of the past, I can put things aside to help me with this project. It will not be quick work.
Interesting thing about Leeanne spending the time with us. Barb asked her to come with us for company for Julia. But to watch the two of them, you would not think that Julia cared much that another child was along. And a sort of almost ambivalence went on during the entire two days, and yet when it came time to say good-bye tonight, Julia effusively told Leeanne how much she was going to miss her. After leaving Leeanne’s house, Julia again told us that she was going to miss Leeanne and that she didn’t want to say good-bye. And then I wonder what Julia sees, what she imagines or understands about her time with other kids. Clearly, she wants relationship and in some way she imagines relationship. God, I hope she learns how to do it.
This is our last night in Virginia. We leave for Maryland in the morning. Back to internet service which I have missed. Yes, I am tied to the communication. But we leave this sweet and quiet place, appreciating the pleasure of spending time with Barb and Steve and their Virginia friends. A good time in the country, away from all that we are comfortable with, but certainly in luxury. And now, time for a late night soak in a very deep bath. Did I say luxury?
19 July 2011 (morning)
Elaborating on how Julia flounders at times during our days on vacation.
At the little natural history museum, there was a very interesting volcano exhibit complete with some sound. The sound was not overwhelming or even loud, and Julia had her ear plugs in her ears. Still, she planted her feet, covered her ears, leaned hard against me so as not to have to move, and squealed. It was behavior from two years ago (but without the tantrum which would have accompanied the fear). She would not move through or past the exhibit without a lot of coaxing and would not look at or learn about the exhibit. We were stuck time. All I saw was her terror.
We had a little girl of 12 with us yesterday and will have her todays as well. She is the daughter of Steve and Barb’s friends. Leeann is a sweet girl, very country, very sheltered, a bit spoiled in the manner that her parents have been very careful with her, kept her young, and she is not adventurous. She is very kind to Julia, and Julia accepts her company and companionship. Julia adds little to the relationship. She must be told to offer Leeanne a coloring book or to consult with Leeanne about a tv show. The relationship is one sided. I am rather awkward at these times. I am grateful that another child will deal with Juila. My impulse is to thank the child profusely. I want to do something to make the circumstance more entertaining for the other child. Juila appears to be pretty oblivious to the kindness and the friendship offered.
I am so used to urging Julia from activity to activity at home that I forget how reticent she is about moving out of her complete comfort zone. Left to her own devices, Julia would watch tv, play with her leapster or video games, play with clay or draw all day. I (and her line therapists) are constantly pushing her into different activities, and she pushes back a little bit and then transitions to the next activity. This is the reason for schedules, the reason we talk about transitioning all the time. This basic behavior, this desire for sameness and non-involvement, is exhausting. I can feel that I am driving this child on, controlling every move she makes, and her lack of initiative is frustrating. My eternal hope is that she will find the activities outside of herself stimulating and fun and will eventually want to do them herself, without my prompting. And sometimes, it appears that she is moving backwards -- I’ve had to help her get dressed all summer if I want her ready for our morning therapy. I renew my resolve to direct her each day, but wonder if I will have to do this her whole life.
On one hand, I am searching for the path to walk for the next years, my new life, and I proclaim that I am not looking for some ego gratifying task, not the glory road. I say I will be satisfied with the mundane if that is my lot. If I can find some joy and meaning and a means to deepen my spirit. On the other hand, I worry that Julia will always need me to push her through her days towards some learning, some experience, and to bed at night.
Julia has been on a horse every day we’ve been here. With a saddle and also bareback. The bareback seems especially good -- lots of balance work. Julia was scared yesterday but today was easier. Barb has the lead at the horse’s head and I hold on to Julia from the side. Both of Barbara’s horses are big and their walk is quicker than Julia is used to, but she is enjoying it.
Julia does complain a lot. A lot! About everything we do. It is all strange and new and out of her scheduled activities. And so, the walk in the woods was accompanied with lots of Julia noise. Still, she did it, she got through it, it will be better the next time.
It was hot today, each thing we did took lots of energy. We went to a local museum of natural history. Small and compact but with a few dinosaur skeletons, some good animal exhibits, and some explanation of soil and rocks. A number of good exhibits that could be touched, more than most bigger museums. Julia touched. Julia had trouble with the volcano exhibit -- too real, it was film, too noisy, too intense.
Julia away from her scheduled activities flounders. She seems more autistic, she is more willful, harder to control. She is small and control is easily managed even if I have to pick her up and carry her somewhere. I try not to get in the position of physically moving her because she will not be as easily moved when she is 15. We must work on discipline, listening, following directions now, so the behavior will be imbedded by the time she is 15.
We’ve done math work once; drawn in her travel journal twice; did morning parade once. It is hard getting any working time in at all -- it always seems so awkward. I hope it gets easier as the traveling goes on. I theorize that the strange new activities will not seem as foreign if we have some standard work to ground her.
I am explaining myself to those who ask, defining the new time, asking opinions, gathering ideas and information. This does feel like a quest.
17 July 2011
Very present. Is that what travel does to me? When I cast my sensors inside looking for might have, should have, could haves, ought to’s, I cannot find them. Just now. Just sitting on the porch of Barb and Steve’s house in the middle of no where in Virginia. Aware that the dog follows me and keeps an eye on what I am doing. Aware that I look at the surrounding trees and wonder at their growth as if they were part of a garden only to remember that no one cultivates their varied sizes and shapes. Aware of the stillness and quiet, so much that an approaching car or truck, and probably a pick up, can be heard for almost a mile away -- and the mile away is almost on the property.
Barbara wonders if I can feel comfortable here. I wonder if I look completely uncomfortable. I like the quiet. I admit to being antsy about not understanding the rhythm of the days, looking for cues of the life. But I am more comfortable than not. I like the stillness. I can imagine a great garden here. I can imagine working on it.
The dog gets up from the porch and takes a run in the front-of-the-house field. He is a city dog, grown and raised in Kearny, New Jersey. He too is adapting to this space and freedom, the sounds and the quiet. He is doing okay. I can’t compare him to a country dog. I don’t know any. I wonder how Latkah would do.
Yesterday, Barb and Sheila, my niece, took Julia on a short horse back ride. Julia sat in front of Sheila on a big western saddle and Julia listened and followed directions. Julia helped brush the horses and was very patient as they were readied. Before the ride and when they were gone, I sat with Ruby, who lives on the property, whose husband once owned the land, and who has an informal life-estate to the small piece of land that their trailer sits on. Mr. Gibson, who has since died, and Ruby have watched over the land and the house and barn since Barb and Steve have owned and built here. Barb and Steve coming down every month or two to see the progress on the log house that they built and then to enjoy, get away from New Jersey, have benefited from having someone on the land, and Ruby has been able to keep her home.
Ruby handed Julia a bucket and a bunch of black eyed peas to shell, and after asking a few times and showing, Julia happily helped shell the peas, as if she had been asked and done it her whole life. Here is something that I never think of doing. Here is something that Julia can do well and without effort. I marvel at the opportunity for experiences that I cannot give her. Cannot only because it is not something that I imagine.
Last year, when I wildly proposed a half way house in China for girls who were on the road to adoption, and the notion that I might travel with some of those girls back to the States to lecture, Barbara proposed putting us up here in the wilds of Virginia for short periods of time. Right now, I can almost see, very clearly, in fact, a bevy of Chinese girls shelling peas, playing with kittens, digging in a big garden and being put to sleep in the upstairs rooms.
16 July 2011
Are we there yet?
Julia put the familiar kid question together yesterday as we headed for Traci’s house in Ohio. Are we there yet? It was a new question for her and it was an exciting one for me. Are we there yet? There is a future, there is more than the present, the now. Yes, it is an immediate future but future none the less. Are we there yet? The question sounded so like a neuro-typical kid.
We stayed in Ohio last night at the Smiths’ house. They are one of our China families who have become such family to us. I still marvel that we went to China with strangers and came back with much more family than a new daughter. We are spread out rather far and wide, and usually only get together once a year. This year the reunion is the weekend after Julia and I return from vacation and so we are not making the reunion because I don’t think I can make another long drive and miss more therapy. I question the decision because I enjoy our families so much, but after the last two days of driving, well, it makes some sense.
Julia played with Jaden who is 5 and ever so smart. Julia manages to keep up with a 5 year old, but unless Julia’s maturity excellerates in a year or two Jaden will leave her in the dust. Jaden taught Julia a video game that we don’t have and they played legos that brother Kevin collected. Julia wanted to stay and keep on playing, which was very sweet. I can pray that she develops and matures, she wants friends so much.
Julia and Jaden -- China sisters forever! Jaden came home to the Smith family the same time that Julia came to us. We all travelled together and it is amazing that it is almost 5 years since we met these girls!
Video games. Yes, she is interested. Should I be really happy or not?
I was good for me to talk to Traci and Scott -- trading some ideas. They let me go on and on about a few things, and I woke up this morning with some more refined ideas. How thankful I am for these friends.
We drove all day today. Long, hard driving on highways that eventually turned into city and town streets, all taking way too long. The first hundred and fifty miles were torture and knowing that it was only a third of the days journey added to my dismay, but just before 7 this evening we turned into the long gravel drive that mark Barbara’s and Steve’s log anything-but-a-cabin. Their house sits on top of a hill with magnificent views in all directions, horses to watch from lovely windows and comfortable nooks to curl up with books or coloring. The cell phone reception is awful and their is very little internet. I have not been cut off from my communication addictions in years, not even in developing nations, but the idea of a real break from my everyday is charming. Maybe necessary.
Two days away from the regular every day and there are stirrings.
13 July 2011
11 July 2011
10 July 2011
08 July 2011
07 July 2011
06 July 2011
11:29 -- It was just about now, a year ago, that the heroic effort to re-start David’s heart began. Whenever I think of this moment, I am flooded with images and feelings, and also an after-fact that I learned from my sister. That once they bring in the paddles and injections, and army of personnel, the battle is almost assuredly over. Very few people whose hearts stop and do not almost immediately re-start are revived. I did not know that. When I think of it, it makes me both sad for the wasted energy and effort and cost of all the expensive means being used, and also grateful to those who rally and try. Try incredibly hard. How many times a day, a week, during a career, but very little success. And still they work at it.
I’m sitting on a bench by our little bay, two short blocks from my house. How fortunate to live near water. How spectacularly wonderful right now. I can sit on a city bench -- that old kind with concrete side and old planks of wood making the seat. David and I and Julia and a few times friends sat here. Evening walks. With the dog. We inhabited this space. And it is nice to be where we inhabited together. It feels right to be outdoors.
11:43 -- they had been working on David’s body for more than 10 minutes now. At first, I stayed in the room. Then the room filled with more and more people and machines. More vials of drugs pushed into syringes sat on the bed stand. I stepped out -- did someone ask me to? At first, a nurse or nurses, assured me. “Don’t worry” or some such thing. I didn’t. Scared. Very much so, but not ultimately worried. We had gotten through so much up to that point. This was another bump, another challenge to rise to and recover from.
11:46 -- They finished by this time. They asked me to come into the room and to tell them to stop the artificial means of keeping David’s body alive. For a moment I wondered whether I should tell them to keep going until Cheshire got there. She was on her way. But why? He was not alive. There were no words to say, even looks to exchange. Just a body, his to be sure, but a body that was being kept alive by others massaging his heart and pumping air into his lungs. And so, I said stop. And then, I let go. Then, I cried. I wailed. I did not know I was capable of such emotion in front of strangers, but these were the people who had tired so hard to make him live again. Were any of them strangers? I heard someone “call” the death for 11:45. My reference was tv doctor shows but there was no question what was said and what it meant. I don’t know if that is what the death certificate says.
I have never been one to cry much. I seem to have saved up years of tears for this death, for the remembrance. Sometimes I wonder if I will ever stop.
Cheshire came. It was very soon after the “call.” I think the room was rather empty by that time. She saw me from the door and she knew. I don’t know if anyone stopped her before she came to the room. We stood and either side of the bed and cried. We held hands some. I must have explained something. We cried.
Someone asked -- a nurse set to watch over us -- who she could call. My first impulse was no one. No one needed to knew this sadness, this complete loss. But she insisted and I handed her my phone and asked her to call Lisa. How awful it must be to make such calls. How hard is it to be a stranger who is calling probably the closest person to the grieving about the death. I have no idea what was said. She may have stepped out of the room. And then, she was telling me that Lisa would come. But who else, she wanted to know. And I asked for Mary. Mary, just a town away, not hundred of miles. And Mary was there before we left David’s hospital room, hugging us and soothing. I do not even know what I interrupted. I don’t know what she put down to be with us. And she stayed the day, the evening, and was back the next day. Lisa was with us by nightfall. And Linde, Cheshire’s dear friend, by the next.
After a long time, and no where near long enough -- I probably stopped crying for the moment, stopped touching David’s body, the nurse (and I guess she could have been a social worker. The nurse who stood by me in the hall after a time when, I am sure the end was guessed, might have been replaced by a social worker. I have no idea who that person was, what she looked like. And I feel badly that there is no way to look back and say thank you.) asked us to move into another room, a quiet office type room where bad news is delivered and families grieve. Just down the hall. And we would be allowed to see the body again. They would clean up the room. David’s room. Put the room and the body in order. Assurance. I did not want to leave. They let me stay. Who is the they I write? Maybe the nurse, maybe Mary, maybe Cheshire? I remember more than one voice urging me to leave, but assuring me that I could stay as long as I needed. The lessons of death, the needs of the grieving, the shocked, those who wander in a limbo land are probably well known by all on that floor. That acute care heart floor. David’s room was a step down from the heart ICU, but steps away.
When they were working on his stopped heart. At first, a nurse assured me that as soon as they got it started again, they would be transferring him back into the ICU. “We need to stabilize him first.” Or something like that. Much later, that day or another day, when I spoke with one of the doctors, he or she said made reference how they had managed to start the heart a few times before. And the knowledge, the full awareness, that David had never been out of the woods, and that for all of the progress he had made, his condition was much more fragile that he/I/we had understood, flooded in. His heart had stopped two nights after the transplant, when he tried to get out of bed and fell. I knew that. I cannot remember the words now, but that phone call in the middle of the night, included technical words that meant, he died but we managed to bring him back. I had conveniently, in the intervening time, filed that information very deep inside.
And the night of the rush to the ER the week before his death, they had “lost” him for a few moments during or after the move to the ICU. Again, words of science were used and I allowed myself to let the information go deep.
So, when the nurse told me of the transfer back to the ICU as soon as they could get David’s heart started, I was more comforted than I should have been. This was going to be like the other times. I thought that David was going to be very disappointed at the regression back to the ICU, but we would become more patient, work at our patience to recover.
I paced outside his room. Craning my neck to see what was going on. I remember the paddles, the shocks, and no heart beat but no easing of the effort. Was it five minutes in or 10 that someone asked if I should call someone? It was forever and it was not soon enough. I called Cheshire. What did I say? To come right away. That something was happening. To ask Maria to come over. To call Cathy. And then, I worried about her. Doing what she had to do to leave Julia and driving to the hospital knowing that her father was dying or dead. Did she know that?
It could have been hours, standing there outside the room. The room that was busy with people shouting orders, trying what they could, pumping, clearing, shocking, looking at monitors. Hoping. Hoping. Hoping. The nurse put her arm around me. I was still so strong and sure that it was going to work. That I would see his eyes flutter open and a wan smile cross his lips. And I heard a woman say, “Is there anything else anyone can think of to do?” And murmuring. My mind raced; I did not breathe; I was numb; I was sure there was one more idea; I knew. I knew. I knew.
And then they called me in. And I stood at the foot of the bed. For an instant, I thought to move to the head, with them, the professionals. But I knew, when I stood for the merest of moments that it was too late to stand anywhere close. I was where I needed to be.
Stop. Yes, they could stop.
In the room that the nurse ushered us into -- Cheshire, Mary, and I -- I knew that I needed to make phone calls. There was a moment when I did not want to tell anyone. Again, I was aware that this awful thing that had happened might be contained between the three of us in this little room. No one else need know, need be sad. No one else need be concerned. For moments I wanted to spare the world. Our world. I wanted everyone else in the world to believe that David was still alive. And by some magic he would be for them for a little more time. At the same time, I was aware that there was a hospital full of people who knew -- at least those who cared for David -- there was my neighbor who knew that something critical was happening and my friend Cathy, who would replace Marie to take care of Julia. Lisa knew. Mary knew. I could not contain the news, the knowledge. My image was that of trying in vain to collect spilled milk.
At some point, the phone rang, and Mary took it from me and answered. I think it was Lisa to tell me she would be there that evening. Is that true? How did she arrange it so quickly? I called David’s father first. It was as soon as I could, as soon as I was in enough control to manage talking. It was the most horrible call that I have ever made in my life. The most awful of conversations. What are the words to tell a 92 year old man that his son was dead? Dad almost immediately started blaming the doctors, the choice of the heart transplant, our trust in our doctors. Looking at it now, I see a reaction to David’s mother’s death 30 years before. I believe that she suffered the same pretty rare heart condition from which David did, and although there was absolutely no way for her doctors to find or correct the condition, those doctors had made mistakes. Their mistakes may have been justified, may have been likely diagnoses, but they were wrong. I don’t remember his anger about that. I did not see it. I do not assume that it was completely unexpressed, but I do not know and probably will never ask. Maybe some of our situation was the same, maybe mistakes were made, but the mistakes, if there were some, were studied guesses and best efforts. I cannot fault those who made them.
But David’s father was angry, almost angry at me, certainly almost scolding, and wanting very much to blame. This was hard for me. Harder than I knew at the time.
I called my sister. I called home to tell Cathy who was with Julia. I called Marilyn, our attachment therapist, who was on vacation on the west coast. It was rather awful to call, but I needed her help and I could not stop myself. What should I say to Julia? What should I not say? I caught her off guard -- as if she was supposed to know -- and I could hear in her voice that she had been on vacation far from the worries of the children she heals. But she talked. She gave me herself and was willing to let me take her time as I needed it. I was the one who cut the call short when I realized that I knew what I needed to do and how to do it. I realized that my instincts were fine. I remember asking for or wanting from Marilyn magic words. I remember the absurdity of the idea.
And after a time, someone came in the room and explained that they had cleaned up David’s room and that we could go back in if we wanted and stay as long as we wanted before the body would be brought “downstairs.” Did that say that? Or do I just remember it as that? Mary and I went in and Cheshire stayed behind. She was finished with the body. I cried some more. I touched his hand, his face. I kissed his cold face. He was so much there. So much himself. And so dead. So far away. So not there at all.
Our stuff -- what he had at the hospital, my bag, and computer were in a neat pile to be picked up before we left. Which we did. Mary did it. It was when I saw the back of his neck begin to turn blue from a pooling of blood that I could move on. Move on. I hardly did. I moved as I was directed, only with some of my own efforts.