30 March 2011

I have been playing with my printer all day. Not continually or I'd be insane right now and the printer would probably be in the street. I like to think of myself as relatively computer literate. But alas, I am merely marginally adequate. I am fine as long as I do what I know how to do and do those things over and over and over again. But give me a challenge and I fall apart.

David used to take care of those things. Damn! Why did I ever let him do that? Well, because after his fiddled with something, it worked. He would get frustrated at times, but then again, most of the time he would just figure it out.

And so, today, I figured it out.

The printer would not print in black ink. I did all I could by myself, then I went to Staples, talked to two guys, bought a new cartridge (which I really didn't need but who know?), and after Julia went to sleep, I ran a diagnostic, learned how to clean the print heads, and ended up with a printer that works now!!!

I am writing this all down in case it happens again. Not that the same thing will happen again, but when something different happens, I will remember to go and ask someone for help. Because no one can know everything. Certainly me.

I bought some new math workbooks for Julia and then tonight printed out a bunch of math worksheets that have dinosaur themes. The print outs were how I began the day, discovering very early that I could not print with black ink. Some of the worksheets are too easy, some too hard but hopefully, the variety will help the therapists and myself give her a range of things she can do. Gosh, I did this for reading -- letters and then words -- two summers ago, and now, Julia is reading. Maybe, maybe.

Mama dreams.

Today, when I dropped Julia off at clinic, another mother was there with her 10 year old boy, waiting for his therapist. Julia was her usual friendly self, chatting with the mom and the boy, eating the lunch she didn't finish at school, and telling me about the last airbender. When she went upstairs with her therapist, the mom gushed about how cute Julia is, how she has seen her before, and how she would scoop Julia up and take her home if she was available. Now, usually adoptive families can be quite prickly about someone saying something like that. As if our children are commodities to be bought and sold, as if our children did not belong heart and soul to their parents. But given that very few people have ever said anything even vaguely like that about Julia, and that this woman clearly was dealing with autism herself and undoubtedly knows what care of kids are the spectrum takes, I was quite flattered. My girl for all of her needs and peculiarities has a quality about her, a life and a spirit. I don't know what will happen to her or what she will be able to do with her life, but she can make people feel good. She makes them smile with her love of life and her clear passion for things -- well, dinosaurs mostly, and me sometimes.

We are using our morning map this week. So far, Julia like having a list of what she is supposed to do in the morning and we have not needed stress to get her to the bus. Maybe it was just time to put the burden for her actions on her. Maybe it is time I could let go of total and complete control over her every movement.

So I have my control issues as well.

This morning instead of going to see Julia's spring music concert, I went to a clinic at Waisman to observe and participate (just a little bit) in an intake interview for a family who is questioning whether their child is on the spectrum. Much like last week, I had a really wonderful time. When I think of things I might do in the world of developmental disabilities, I imagine that I could help coordinate a program, or do policy work, but I am never excited about these sorts of tasks, but to work with a family, in however limited a capacity -- ah, there is where I want to be. Again, I felt that very sure gut feeling that I was where I belonged. And so, I don't know quite how to get there yet, but here is another refinement to my direction.

Of course, coming out of the clinic and going back home, I wanted to call and talk to someone. I wanted to share the good time and say -- yes, yes, this is it! I am far enough along on this path without David not to immediately think of calling him, but then who. Who to burden? Who to share with? I texted Cheshire later but it was nothing like talking to someone. I have a bunch of wonderful friends and yet I am aware these days that I have so little to really say to anyone. I call or get called and mumble something about being okay or not okay. I sigh a lot. I ask about how they are doing. But I am so painfully aware of what I am missing.

David and I used to talk every day. We were one of those couples who called each other during the day every day, maybe even more than once. Most of the time, it was about nothing, sometimes it was about little highs or lows, sometimes it was about big things. When the call for the first, possibly compromised heart, came, David and I talked about it and made the decision as I was driving Julia to OT. Now, I miss that ease, that companionship, that complete friend. In his letter to be read in case of his death, David wrote that our life together suited him and for that he was grateful. It suited me too. And not having him, does not suit me. And more than that, I fear that I will not have that companionship again and I wonder how I will live for the rest of my lie without such a friend. I don't mean that I am ready for another partner in my life. Not at all right now. But never? I cannot even imagine it. I don't want to imagine it.

I've always wondered about people, usually old people but some younger, who say that they read the obituaries every day. Who would do that? And why? And yet, I find myself these days scanned the obits in the Times. I look to see how old people were when they died. I note that most are in their 70's or 80's, some in their nineties. I click on obits for people who died in their 50's or 40's. I note how few of these there are. And there is a little voice inside of me yelling that it is so unfair. People celebrate 40 and 50 and 65 years married. Why not us?

God, that is so strange. I mean, checking out obituaries. Really strange.

29 March 2011

It has been a rough two days. Not sleeping enough at night, going back to bed in the morning after getting Julia off. Haven't done that in months now. Going through boxes, knowing that everything that I throw out clears out a part of David. Not that 1980's tax forms and drafts of recommendations for IUPUI students would ever be looked at again -- well, maybe when I die and Cheshire and Julia are stuck with the chore of cleaning out my papers. And then, they will complain about me and need a dumpster to haul away decades of fading, rotting forms.

Still, doing the sorting myself. Getting rid of boxes and boxes of the past takes a steep toll on my spirits. I have cajoled myself into believing that these are the easy boxes -- the ones with labels, the ones that I am able to keep or toss. These are other boxes of pictures and memorabilia. Some of that just needs sorting and order -- I've never managed photo albums. Maybe albums. Or possibly scanning is more appropriate these days. There is stuff from David's father's house that David took when his father no longer wanted it. It will be hard getting rid of that -- those halmark cards that his mother saved in the early years of her marriage. Hundreds, no joke. But they were far removed from David and he did not know what to do with them. What am I supposed to do? Burden my children?

So much is a burden on me right now. I am weighed down by it today. Digging has been going on for more than a week on the Bloomfield house. I haven't called the manager to check on progress. I don't really want to know why it isn't going well. If that is the case. Oh, where is my optimistic heart? I want the house sold, the estate closed. I want to be done with electric bills and whether the lawn is mowed. It is enough to keep my own house in order by myself, for myself. And right now, I wonder why one of my siblings did not offer to take the estate work totally off my hands when David died. Some offered help, but no one offered to do the job. It is hard to think of what anyone might have done as help -- and my nephews have helped when I have asked -- but to have been rid of the whole thing and just get a check when it is all over. There! That would have been a gift. But to excuse them, as I always do, who knew it would go on for so long? I certainly didn't. What was a few more months of paying bills and annoying people? But it is turning into more than another year.

A woman on a yahoo board expressed interest in the little girl that I applied to adopt. I hesitated and did not immediately respond to her query for information. Not that she can't get most of what I know through the regular channels. But I did do a bit of searching and found some useful links -- people who had met the child especially. And admittedly, I hesitated because I wanted this girl still on the list when they start giving single women waivers. So, I could give it another go. It took about an hour of selfishness to turn back and write a bit of a note. If she wants, I will send her addresses of people to write to, pictures that others sent to me. Maybe this child will find a family. Another release, whether I want it or not.

Two people who have read parts of this blog have referred to the writing as therapeutic. Something which has offended me. When I search for why I was offended because of course, the comments were not meant to be so, I am once again confronted by an ego, my ego. I don't think I fancy myself a great diarist, but then perhaps I do. Perhaps just writing the story down and putting it out there is not enough. I want to be thought of as brilliant, compelling, and thought provoking. Sorting through David's notes on stories, novels, plays, ideas, lectures, classes, and such is such a sobering exercise for me. I have not worked at anything as hard as he worked on writing. Full out. Full out. Don't ever just rehearse, life is for doing it all full out. Perhaps merely laying my soul bare yields therapy, and compelling takes drafts and editing and talent.

Oh my god, this all sounds so sad and sorry. I am having a bad day but I am not a sorry heap. I have no idea of what to make for dinner tonight and that is really the biggest challenge of my day.

I hope that in a few months or a year or so, I can re-read these sorry sack entries and know how necessary they were to my moving ahead with my life. And that is the most optimist thing I can possibly say today! That, and perhaps, Chinese take-out.

26 March 2011

At attachment therapy this week, Marilyn was probing. Julia is willing to work on some of her feelings but there is pain inside of her that she doesn't want to touch. Julia is very clear about not wanting to work on her pain and I am so thankful that she is still at an age that she can be nudged, cajoled and pushed to move further beyond her comfort zone. I see Julia really refusing but at the same time moving closer to doing the work. It can be a small miracle to see.

Julia was willing to say that it was pain, fear, and sadness that was inside of her. She said that the pain was from China. Marilyn wanted to work on the pain to bring it out, to talk about it, to draw about it, but Julia was not willing to go further. She was willing to say that if there were three volcanoes inside of her (we are working on her past and her feeling using a volcano work book that has been very useful to Julia), the pain volcano was the biggest, the fear volcano was the middle size, and the sadness volcano was the smallest. I did not understand the sizes she assigned to her "volcanoes" but Marilyn thought that those sizes showed progress for Julia. She thought that the small sadness volcano might indicate that Julia has been able to share and integrate some of her sadness, and Julia is very willing to talk about missing her Daddy, her friend Abby from China, and her grandmother (Babja) who died two years ago. How I hope that we can chip away at that pain volcano and let her out from under that burden.

Julia's reading really does get better all the time. It is amazing. Like a switch turned on inside of her head! I remember Cheshire discovering reading when she was about 4 and wanting to read everything in sight. That is how Julia is these days. She wants to read things -- signs, newspapers, old letters, anything that strikes her fancy. Her actual reading is still slow and choppy, but looking at a new book she remembers many words and picks up new words quicker and quicker. She is also asking to spell. I have kept her away from the spelling work that they do in school. I didn't think it was appropriate for her to be memorizing spelling when her reading needed so much work. Mainly, I didn't want her to be turned off to reading or writing in any way. And I was afraid that boring spelling exercises, which was what was proposed, would turn her off to any spelling work at all. As it turns out, she is interested in spelling words she uses in stories. This summer we will work at a little spelling. Maybe starting with 3 or 5 words taken from what she is writing or reading. And with BIG rewards for learning them and getting them correct. Ah, tricking her into interest!

I was at a meeting yesterday about a presentation for a LEND seminar. I've participated in a very small way in some committee work that Connections -- a large statewide group -- does (http://www.waisman.wisc.edu/connections/index.php). A program director and a project manager will speak and three trainees. I have a bit to say but what surprised me was that I was able to add some interesting thoughts to the meeting. Oh, I know that sounds so lame! But here I was with people with much more experience and training in the developmental disabilities field and I was able to contribute to the conversation. I am sure I have done this before, but I noticed it yesterday. And it did fill me with joy. Maybe I do have something to contribute.

I talked to my LEND mentor about my plans for next year. I was honest about wanting an fallow year with only a bit of learning and some retained touch with the Waisman Center. I spent time on Wednesday observing an intake visit for a family looking to find out if their son is on the spectrum. Working with families is not easy work but boy, it is what I want to be doing. When I go back to LEND I want clinical work, in whatever capacity I can do. I have grown sure that I do not want to help with research or policy, I want to work with families.

And so pieces of my puzzle of next steps and how to get to where I should be are falling in to place. Slowly, and not without great deliberation and many experiences, but it is happening. I cannot forget that I see it happening, especially during the times that seem I am so stuck. Everything in my muddle of a life -- grief, family, loneliness, livelihood, home, companionship, community, art -- are a swirl right now. The change that I am committed to living in and with is hard, and sometimes I don't want to be strong enough move through the muddle with sure and steady feet. But I can, I am, and I will.

Yes, although joy is illusive and fleeting, strength is returning.

23 March 2011

So much of what I am doing this week brings home again and again the time that process takes. My process of grieving. My process of doing blissful work. Julia's process of healing. Julia's process of learning. Sometimes, just sometimes, I can quiet my terribly monkey mind, and sit with the notion of process. The idea of the journey sits upon my soul.

The other day after I put all of the black plastic bags full of David's clothes into the car but before I dropped them off, I took Julia to clinic. And in her newly minted aware style, she asked what was in the bags. I told her Daddy's clothes and she asked, "He doesn't need them anymore?" We went through a round of how he was not coming home, what happened to his heart, and how sad she/I/we are that he died. At one turn, she asked if Daddy wanted to live more and she accepted my statement that he wanted to live very much but that his heart just could not keep pumping. "It was hurt?" "Yes." "So hurt that it died?" "Yes." "How is your heart, Mommy." "Very, very strong, Julia. Just like yours."


Julia is not strong on metaphor. We were sitting together after school yesterday, talking about her day and about her being a bit grumpy. I told her that she used to be very angry a lot of the time and these days, she seemed happier to me. She agreed that she was happier. Then, I said that I thought that she was happier because her heart was healing. And she told me that her heart didn't need to heal. It was just fine.

So, I re-phrased.

I am slowly becoming comfortable with the idea of allowing myself to be much less busy after the school year ends. Slowly, as LEND work wanes, I am beginning to live without assignments now. I admit to being a little scared to cut loose from tasks outside of the work of clearing my life and our family life. I need to center. I need to touch some fundamental bottom. Lots of cleaning inside and out. Lots of reorganizing, finding new patterns and places, making this new life. Daunting, inviting, necessary. The distractions that happily occupy me will wait. I will come back to those that are vital.

Yes, slowly becoming used to this idea of fallow time as a necessity.

22 March 2011

Two boxes today and a pile.

Box one from my mother's house. Three Ukrainian blouses that she made. The one that is mine, I will try to give to Cheshire. I will never wear it. I don't think. The other two are for a child. I must have taken it for Julia. I really don't remember now. It was an easy box to dismantle and put away. Like I packed it to be.

Box two crammed full of bank statements, paid bills, insurance policies and receipts, and house buying and selling. None of it less than 5 years old. I went through it all, shredded and threw away with only a few things saved. I threw away many, many scraps of paper that David had written on. I cannot fathom saving every scrap. The man was a writer. But I am also acutely aware that there will be no more scraps made and I wonder how much I will miss that illegible scrawl and for how long. I've never been able to read it. There was a time when I had to ask him to read his own love letters to me. Could not make out the words. Another part of me is faced with the reality of his complete disappearance forever. Another few cells give him up.

Making room. Making room. So many years ago, I wrote that nature could not stand a vacuum and that I would wait. Quietly. It was after we had decided to give up the attempt to have a second child. Five years later, Julia became ours. The process of giving up, letting go, healing, and discovering took a very long time. Grieving was part of that time as well. But there was joy again after that time. And I wonder if there will be joy again.

21 March 2011

When I went to pick up Julia today at school, her principal -- the most approachable man on the earth -- told me that Julia came to him this morning to tell him that two girls were fighting on the bus on the way to school. She told him that the fighting upset her. I had to ask him if he meant my Julia came to talk to him. And sure enough, it was my Julia! He said that another child came in afterwards and told him the same story.

We were both amazed that the awareness Julia showed and the appropriateness of her action. When I asked her about it tonight at bedtime, she told me that she told her teacher and her teacher advised her to tell the principal.

And she followed that direction!

She told me that she felt very badly that two girls were fighting. She game me their names and told me that they were hitting each other after yelling. This is something that she could not have cogently repeated last year.

As for me today. I packed up, delivered, cleaned another manuscript box and refiled. I read somewhere that in order for new things to happen, you must make room for them. Maybe I am doing that -- making room for the rest of life.

As I was going through papers, I found some of my mother's mother's information, and a slip of paper, in my mother's handwriting of her father's date of birth and death. So far, I have nothing else of her father. And there I saw that her father died at 53 -- It could have been 40 or 60. In our family, his death left his wife a widow with two small daughters (the oldest Julia's age) and a son (from a first marriage) still in Ukraine. And the story from that time was how my grandmother scrubbed floors to make enough for them to survive. 53. I wonder how old my grandmother was. 53. I wonder how she grieved. I don't remember her in anything other than black or very dark blue. And that was 20 years later. Most of my family is long-lived. This grandfather who I grew up without knowing was never talked about when I was a kid. It had been too long before to remember much, I guess. 53. And I am feeling a kinship now with a woman I never had an adult conversation with.
Spent the morning bagging up David's clothes.

Now I completely understand why, in the two and a half years after my father's death my mother did nothing with his clothes. She didn't need the closet and I suspect she just closed the door and didn't look. I don't intend to die soon, so I can't do that.

David's clothes are in a separate closet in the room nominally known as Cheshire's bedroom. It is the third, smallest bedroom in which Cheshire's furniture and belongings not yet claimed live. She sleeps there when she visits, and it is a very convenient guest room at other times.

David took over the room, installed the old desk he had given me as a wedding present, set up a computer and used it to write in. Later, when health information multiplied, divided, and procreated, he organized information, prescriptions, gadgets, and recipes in and around the desk.

And now, it is time for me to clean it up.

Cheshire and I had removed clothes from David's drawers last year. Easy stuff, underwear, jeans, old sweaters, and the chatski of life. I am not sure why that was relatively easy to do and the closet was so hard. But it was. I am not going to hazard a guess. A theory.

So, I bagged work and casual shirts, cleaned and pressed, pants, better sweaters, shoes, jackets, ties, and suits. The suit that David was intending to wear to our nephew's wedding, the wedding that we missed because David was already in the hospital during his last hospital stay, hung cleaned and in its plastic envelope. Probably on the same hook that he has put it. I folded it all in half and slipped it into black bags.

I paused as I folded that last clean suit and a blue tie that he particularly liked. Should he have been dressed in those after he died, for his cremation? I vaguely remember the decision not to. To use a shroud. Now, I hope that someone, with a wedding to go to, finds that suit and pairs it with the tie.

All in bags now. In the trunk of my car. Headed for St Vinnie's. I know some of the clothes could have been sold or at least given to a consignment shop. I have no heart for that. None at all.

I left just a little -- an old jean jacket that David didn't wear anymore but was part of our NYC life and his leather jacket that weighs a ton and was his winter jacket whenever he could get away with it. And his light robe. Maybe I will get rid of these too in time.

When I first thought about getting rid of stuff, of cleaning after David's death, I thought I could do a clean sweep. I thought I could do everything once. Go through clothes, books, papers, and the rest just once. Purge, save, label. Once again, I have been humbled by my brand of naivete that surfaces over and over. Nothing is done once. At least, by me. It is layers. Onions, ogres, and me.

And today, that means 6 black plastic bags of clothes, and one garbage bag full of medical information that David no longer needs.
The cat just came downstairs with one of Julia's hair pompoms in his teeth. He puts it down, licks his paws and then sets upon the serious work of batting the pompom around and catching it. And I am finished with breakfast and making reservations and spending money on our Disney World trip. I just need to rent a car for the end of the trip when we go to visit David's Dad and Claire. It will be a quick overnight visit but we should be able to have a meal and a bit of time together. If I get myself together, I will bring down pictures and the program from David's memorial. But I will only give it to Dad if I think he can handle it. I don't mean to hide anything from him. I would like to share that time but I don't want to drag him back to those days. He is sounding a bit better these days when we talk on the phone -- I don't know whether it is moving on or if it is because he is away from Jersey. Florida might not press on him as heavily as his Union home.

Saturday was a spring day! Julia and I worked outside after her therapy was finished. She helped me pick up fallen sticks and pile them, and then pick up the leaves and garden waste that I raked. There is still a bit of snow left around the compost bin so it is tricky getting compost in without slipping, but she filled the tub again and again. We worked companionably for more than an hour and we cleaned three of our garden beds and part of the front lawn. Julia is very excited about spring -- spotting emerging bulb plants on our walks. She remembers snow drops and crocus from last year. Oh, this has been a long winter for us.

Then on Saturday evening, we went to Randall School for the revamped International Dinner. The person who has chaired the dinner for years wanted change but couldn't seem to do it herself. We started the process of change in the beginning of the year -- a co-chair, a change from a weekday to the weekend, a change of location from Franklin to Randall, and a change of vision. No longer would our most "international" flavor be pizza! Although there was pizza to please many children. The sign up sheet seemed stuck at about 50 for most of last week, but a sudden surge at the end put us over 100 and on Saturday it looked more like 200 people were eating together. One of our principals did a cooking demonstration, an African dance group performed, and a group of our kids of Hmong ancestry also performed. There was easy access to the playground for kids to go out after they ate and a generous spirit in the air.

And people cooked! At different times which people were lined up getting food, I was aware that some food items were disappearing, but each time I became anxious, another family with another interesting dish appeared. There were not a lot of leftovers, but for awhile there we were reliving the loaves and fishes story.

This last month has been so tense in Madison. The plans for this dinner were not made as a way to bring our community together after all of the political upheaval but it seemed to serve that function. This too, made me so very grateful.

Julia was overwhelmed by the crowd but she handled it quietly and most appropriately. She spent lots of time drawing on the paper taped in table sized sheets on tables. Later, another adult helped her find some legos and she and two boys sat in a corner building animals and empires. Yes, I wished she would watch the dancers and enjoy the hubbub, but Julia handled herself well, and was ready to go home when it was time. Oh, and she also willingly put the legos away when she was asked to.

Last year, we did not go to the international dinner. David had just gotten his new heart, and I was consumed with him. I picked Julia up from school the day of the dinner and saw the signs on the door at Franklin. I remembered the two years before that when we had gone, and flashed forward to this year when life would be back to normal. My memory of coming into Franklin, seeing the sign, and thinking those thoughts is very visceral, as if it was yesterday.

So Saturday was bitter sweet. No old normal for us and no one to share the evening with when it was all over and we were home, but still there was joy. Illusive and fleeting. The planning and work was good, the camaraderie was good. Finding a new way to be together as a community was good. Forcing myself to serve as MC without expecting myself to be perfect was also good.

18 March 2011

Last night, before the sitter came over, Julia was having some supper and I explained that Bethany was coming over. "Are you going to a meeting tonight?" Julia asked. And later, "Are you going to talk there?" These may seem like easy questions but they thrill me because it means that Julia is thinking outside of herself and her immediate needs and wants. Gosh, it mean a whole lot of things!

I ask Julia about school every day and she is now used to rattling off a string of things that she does, some specific like the kind of math game that she played or the book that she read and some most like lunch, playing outside, or coming home to me. I love when she tells me that at the end of the day she gets on the bus and comes home to me. Yesterday, she told me that she went to social studies class. Social studies?!!! Well, I bet she has been going to that class, whether it is outside of her regular classroom or not, since the beginning of the year, but finally, yesterday, she could tell me that it was different than doing math or reading.

Another incredible leap!

I do wish that David could see this progress. Julia has made so many giant leaps this school year, and I know that we have been working towards these things since she came home, but now I am seeing them. I do hope that there is consciousness after death if only so that David can see how far is little girl has come.

Last week, Marilyn was filling out insurance forms and she asked Julia why she came to see her. Marilyn is our attachment therapist. Julia told her because "I love you." She added that she was "working on our family" (my explanation of what we do at Marilyn's) and "learning to be nice." This is the beginning of an awareness, a seeing herself from the outside -- reflection, for heaven's sake!

Last night, as I left from the grief group meeting, the air was decidedly spring -- damp, earthy smelling, fertile, and I remembered vividly walking the dog one March night last year, smelling that smell, thinking that David had gone into the hospital in winter and would come out in spring even though it was only a few weeks that has passed. We had talked about grief triggers at the meeting and there I had my example perfectly set before me. I could feel my own hope from last year, the promise of spring and a new heart. It was a punch in the gut but at the same time brought a smile to my face. I do remember hope. Physically, at least.

Last night's meeting was very small and so those of us there talked much more than usual. I found myself talking about my niece, Jennifer, who killed herself when she was 19. I realized how her death and my grieving her death is still so much a part of me. How long has it been? Almost 10 years? But there is still residual anger, frustration, and great sadness for a child who had not had the loved that she needed to survive. And great guilt for not insisting on giving that love to her. I do not mind the guilt -- it is my reminder that I can do something. That every child deserves an adult who is fully committed to them, who will love them no matter what, and who is their rock of stability in the world.

I had not connected grieving for David with grieving for Jennifer. (I did connect it with the old losses of Jon and Jim -- 20 years ago and I still talk to the both of them.) But the connection is there and easy to access.

A year ago today, David came home with his new heart. It felt so very good to have him home and all three of us under one roof. He talked to Cheshire when he got home, and seemed so happy sitting on the couch and having dinner.

17 March 2011

A warm grey day today. Nothing pressing after the morning's meeting. It is almost spring, still snow on the ground, work to be done. I am sad. Sad the way one can be in spring before any of the riotous color bursts forth. I cannot forget winter.

An internet friend wrote in a comment to my last post, that most likely this child will not get another chance at a family. The last thing I wrote to the person advocating for me was that I hoped that M's family would find her soon. Now, I am almost embarrassed to have written that. This child was abandoned in spring of 2008 and her file is stamped November 8, 2008. She must have gotten on to the shared list soon after that time which means that she has been on the list for over 2 years.

In two years, no one has petitioned to adopt her except for me. Of course, someone might have and also been rejected, but in truth, I don't hear that many people are rejected as agencies seem to pre-qualify families before submitting letters of intent to adopt. And I just rather blithely wrote that I hope her family finds her soon. I need to be careful with my heart, that is true. But then I think of this child.

I don't know.

16 March 2011

Yesterday, I found out that the LOI (letter of intent) I submitted for an older child in China was rejected and I will not get PA (Preliminary acceptance) because of my age. I meet or exceed all of the requirements for the new single adoption except that I am too old by four years to adopt this particular child. And no waiver. At least for me.

I am heart broken. Four years too old seems much too small an amount of time to deprive a child who will be turning 11 in less than two weeks, who has been on waiting kid lists for more than a year with no interest, and who would have been a lovely daughter and sister in my family.

But there you have it. Of course, the rules might change in the coming months or the next year. In that case, I might be granted a waiver, but it will not be for this child, who will remain waiting on a list thousands of children long and whose special need and late abandonment have probably scared many families away. I am disappointed and feel sorry for myself and for Julia, but even more, I am very sorry for this child who will not have us. We could have been her family.

Last night and early this morning, I was really considering crawling back into my rather comfortable life. I was working on my final LEND presentation and reflexively thinking about what I should do for next year. After the rejection, I was angry and started thinking about living for myself and my family and friends. That little pot of money saved for adoption could fund a very nice vacation -- well, more like 3 vacations. Or some extravagance in the house renovation. Or, I don't even know -- something that had no strings attached to generosity. Generosity in a cosmic sense. That generosity that I've resolved to embrace, that I feel most happy when I am embracing. Why take more schooling about children in need, why look for work addressing the needs of children, why push to create something that would address those needs. Why not just concentrate on Julia -- "cure" her and move on to something much more fun.

Okay, I am not stewing for days about this. Not even hours. Just what was running through my head as I assembled my draft powerpoint. Then I read another blog post: Choosing to be Uncomfortable (http://www.wearegraftedin.com/2272/choosing-to-be-uncomfortable/). It was a quick slap on the cheek, a bucket of cold water, a shoulder shake. Of course, I cannot forget those kids! Those kids that are forgotten by so many fuel me with such a passion. Maybe it is not as easy as adopting one more -- as if that is easy. There is something that I need to be doing. Just need to find out what that is.

14 March 2011

Julia report: Julia had a very abbreviated school day. She was home by 11 a.m. Although she wanted to get right to the wii to play Super Mario Brothers, we sat down to write a schedule. Julia took over writing and put the date at the top of the board and then wrote numbers down one side. When I asked what she wanted to do, she wrote "game" beside number 1, and "Sweet Valley" beside number 2. Julia wrote those words! With no prompting from me!

Now, not to be carried away. Her at home therapists and I use the same white board to write her schedules every day. Her teachers and aide have used schedules at school and her OT and Speech therapist have done the same. We have all encouraged her to draw her own schedule, and her at home therapists have encouraged her to write it, but she has never of her own volition done what she did today.

Big steps.

At both OT and Speech Julia worked very hard. She played a matching/mystery game with Annie and was quite patient and rule-obeying. For speech, she went through a number of exercises, some better than others, but at the end she and Linda worked on a number of pages filled with faces. Julia had to identify the emotions of the people from a small list. Julia was able to identify all of the correct emotions and was also able to come up with alternatives that the people might be feeling. Julia is still far from using this ability in face-to-face interactions -- she does not study people enough. But she could not do what she did today a year ago.

Again, steps.

Today, I met with a kitchen designer who is bidding on cabinets and countertops. I liked what he did, but nothing incredible. I don't know whether I need incredible. I am falling for the "more expensive" cabinet line. Of course! But keeping an open mind. I have another bid coming in but it is with a designer who disappointed me last time around. The second designer often works with my contractor and I can get a "good deal" with his company, however, he has not been responsive to what I want, and is slow, slow, slow. Wondering what I should be doing? Talking to more designers?

On other fronts, there is a good possibility that a door that seemed to be a crack open will be slamming shut. I promised myself to trust the Universe on this one. And trust is not easy when I am getting an answer that I did not want.
The Chinese adoption authority announced last night that single women would again be allowed to adopt. Lots of restrictions, but an incredible breath of fresh air!

12 March 2011

I love getting comments. I love it when friends stop by and just say, "hi," I'm thinking of you. It is so cozy to read a few kind words before I start to write. I do appreciate it. Really, I have so much to appreciate. Friends who call to check on me. Friends who make sure that I am doing a little something. You know, I am busy, I have many tasks, but I get lonely -- I know I can be a complete bore when someone says, how are you. I tell them. I hope my friends don't stop asking.

Today, after therapy, Julia and I went out for some shopping and a movie. And she did great! We both need some spring shoes -- or new shoes in general. Somehow Julia has really plugged into Sketchers, and because the store we go to does a one pair of shoes at full price and the second at half, when I buy shoes, Julia's sketchers are not extraordinarily expensive. They are cool.

We found 4 pairs for her to try on and then I made her pick her favorite. This is still hard for her, but she did it. We did a bit of elimination so it was down to two pairs to chose between. And then she carried the box around with her as I shopped. She found at two grownups to share her news of new shoes. Oh, that girl can be friendly.

And then we went to the mall to buy some spring clothes. I usually don't take Julia shopping, in fact, I avoid it like the plague, but . . . BUT she is tall and skinny and I really don't have a handle on what size to buy for her. So, armed with ear plugs in the ear, Julia and I ventured into "children's place," a clothes store. They were have some sales and I had some coupons. We picked out a pretty dress -- sort of for easter and dressy dinner. Dress: size 8. We found sweat pants -- well, sort of, sweat pants, fancy stetchie pants: size 6x. We found a few shirts: sizes 8 or 10 for length. And an adjustable skort: size 8. And, bring on a drum roll, a pair of spring pants and can roll up to be capris. This is the first time that Julia has tried on and agreed to buy (and wear!) pants. We have been inching towards pants with leggings under dresses and skirts, and stretch pants with sweaters, but these are real, button and zippered pants. But sizes are still crazy -- anywhere from 6x to 10, depending what the garment is covering. I swear we tried on at least two or three of each item in different sizes before we put something on our pile. The dressing room was a mess by the time we left.

Now to see if she wears those pants.

And she looked so good trying these clothes on.

It was more like going shopping with Cheshire when she was about 7 or so, than going shopping with Julia last year.

Small step for Julia, giant step for my sanity.
Just to add a bit to this after two comments from long time readers: I am not a shopper by any means. I hate malls and would rather walk around with hole-ly jeans and underwear rather than to take time to shop. Online shopping has proved to be boon, but when sizing it tough, I just gotta see it on. And so, to be able to go to a store and try clothes on seems really wonderful.

The other kink in the thread here is that with school, home, and Julia and no David, I've been too busy with chores and necessities to make time to shop. I also haven't felt like it at all -- not that I ever feel like shopping but the resistance has been much higher. And the shoes I replaced yesterday showed it.

There was a bit of time right after David died that I thought I was getting into retail therapy, but I think that was just the shock and severe disassociation. Smile. It was really not me at all and lasted a very short time.

11 March 2011

A discussion with a Waisman person who shares some of my interest in trauma/child development / developmental disabilities and who has run programs for a long time here. Picking her brain about what next for me. Finally, finally, I am not so needy that I feel like I am whining about what I can't do. I am not begging for answers, but listening to possibilities.

Not articulate here.

She told me about an early childhood certificate program, she told me about the advantages of a second year of LEND, she talked about getting a masters of social work if I intend to take a bunch of courses anyway. She talked about taking courses versus looking for experiences. She reflected back to me what I told her in a very thoughtful way.

How I was interested in learning more, how I am looking to do a unique task that there is probably not an existing job, that I want to learn and experience outside of my life experience.

And so I ponder, and do not expect a simple or direct answer. But I ponder structured v. unstructured time for next year (school year), course work v. experience.
My dear friend, Lisa, posted this prayer that she wrote on her blog (http://ponderingonthepath.blogspot.com/) which she submitted for a book on grief:

Essence of healing, of strength, of life,
Gentle me into the next moment.
My heart is open and breaking,
My mind has lost its bearing.
I trust you are ever with me,
Your presence abides within.
Hold me in this crossing
From what has been to a new way of being.
I pray this with gratitude for all I've been given
And for what is yet to become.

. . . "Gentle me into the next moment" . . . I am looking to learn how.
Yes, changing the blog design was a good decision. There is nothing like looking at the face of my smiling girl before beginning to write.

Yesterday was a very active healing day for me -- a morning phone appointment with my energy healer, an afternoon appointment with our attachment therapist (talk about working with Julia's trauma has immense healing powers for me), and an evening grief group meeting. I drove home after the grief group and felt well medicated in a non-medication way. The road of healing and growing is so long. I am seeing and feeling how I gave up so much personal power and personal path to concentrate on David during the long wait for a heart and then after the transplant. Tracing back before that, I am seeing for the first time that I've been a caregiver for much longer and much more intensely than I ever imagined. I've never considered myself that much of a mother or nurse, but I've embraced those roles but not without pushing down some of my own spiritual ambition. I regret none of this -- becoming a decent mother and a strong companion and helpmate have been the lessons of my life. My soul healed from my early life experience and my heart opened. Without David and my girls, I wouldn't have a heart ready to be truly ambitious for the rest of my life this time around.

But it is such a dance -- the discipline of learning love and the cultivating of a free spirit. It is such a discipline -- moderation. Moderation and balance. Moderation, balance, and a wild and crazy life is what I have planned.

On with the road.

10 March 2011

A few, hopefully brief, thoughts about grief.

A friend posted pictures of her family's celebration of mardi gras. Her children's heritage makes such a celebration very appropriate in the family. She posted a few pictures of her kids with masks, of herself and husband, of the food she made and the table she set. They are simple, lovely, incredibly happy pictures.

I don't have pictures like that this year. The last pictures that resemble that are of David walking the hospital hall holding on to the metal tree of medication being pumped into his body. He has a sheepish smile and Cheshire is beside him. It is not a particularly jubilant picture viewed objectively, but when I looked at Pat's pictures, I immediately thought of that picture of David and Cheshire.

I like having pretty pictures to post on this blog, to frame and put on shelves, and I have scolded myself often for not taking more. Yet, even when I've snapped photos, they are flat, they don't look like those I describe above. I don't yearn to post them for any reason but to mark the time.

Yes, and now I recognize this as grief. Some one out there is probably saying, "duh!"

When I was a teenage, my mother's uncle and then her mother died. It was the first loss in our family, maybe even in the circle of relatives and friends that we grew up with. I think that both my great uncle and grandmother were older, and certainly more battered in some ways, than the older relatives of our friends.

My mother tried to lay down some grieving rules. Lots of black clothes for a year, no tv or radio, no going out to party, and more. There were four children in our very American household ranging from 8 to 17. Adapted traditional Ukrainian, or maybe just any old country, mourning was not going to be our pattern. And I don't remember that she really stuck to her own rules, let alone enforce them. She wasn't going to replace all of our clothes, or her own. She wasn't going to insist on setting ourselves apart with black arm bands. After a week, she wasn't going to separate us from the babysitter-styled tv watching that we did, nor did she really try to tone down Christmas and our holidays. But now I am beginning to understand the impulse of traditional mourning, and although I could never conceive of imposing it on anyone, let alone myself, I see where it comes from.

I remember my mother telling me how her mother had imposed the year of mourning when her husband, my mother's father, died. The girls, my mother and aunt, then 7 and 9 (I think), wore black for the year. I think my grandmother dyed their clothes. They wore arm bands, and I don't think that my grandmother ever wore anything other than black for the rest of her life.

My mourning is different, but I am seeing my own patterns. Boring cooking that is repetitive and easy. Yes, there are comfort salads and soups, and we eat them all the time. Actually, I think that my cooking would suffer a great deal more if it were not for Julia needing to eat.

I have a closet of clothes that I never touch. What I wear is always clean, but it is the same jeans and sweat shirts over and over. I need new shoes but just can't see going to buy them.

We watch movies, but no tv -- nothing that brings reality in to the house. I think I've had enough of the real.

And music, I've only recently begun to listen again.

Mine is an organic, very much of myself way of grieving. Probably not really different from anyone else's way, probably not different from much more traditional rules. But only because it comes from the inside do I understand what my mother tried to force us to do so many years ago.

A-ha! Now I get it.

09 March 2011

It snow again last night. Rather, it s-n-o-w-e-d again and again and again. I am so tired of snow.
Did that convey a whine?

I thought this morning how it didn't snow last year while David was in the hospital. I hope that I will forget about this sort of comparison next year. When I do it now, it is not volitional. It comes unbidden. And the thoughts are not awful either. They just are.

This is what is running through my head today. Thinking about money for next year. I would like to earn enough so that I can (1) buy private health insurance for both Julia and I, instead of buy it for myself and having her on the state insurance she gets with her autism therapy, and (2) pay for the life insurance that will ensure Julia's future in case something happens to me. And do both of these things without changing the quality of life. Actually, I can't earn it all because it is more than Social Security would allow me to earn and keep benefits, but most of it.

I don't really want to get a job -- and please, I know how that sounds. But how else? So I put it out there to the universe today. How else can I earn that money?

07 March 2011

I changed the design because it was time. Before last year, I would change the blog design every few months, and had a good time playing with digital scrap booking for pictures as well. Certainly, I had no intention of keeping the last layout for so long, but it seemed to fit with the last year. I also love those pictures of Julia. And then, who had the time. Or the inclination. And with my new laptop coming just a handful of weeks before David's transplant, I have had no time or energy to re-learn photoshop.

Then, this weekend, I just needed the change.

A few Julia things before I fade away into self indulgence. I got an email from school today about Julia's behavior. It think this is the second alert that I've gotten this year, which is a miracle in itself. But the message today was the Julia was unable to do her work in the classroom because she was angry and being disruptive. It was not a tantrum or a meltdown but when asked to calm down in the hall she went limp and sat on the floor instead of listening.

So, mother guilt flooded in and I know I have been making more demands on Julia at home -- putting silver ware away after we run the dishwasher, making her dress her self and get ready for bed. And consequences, mostly of losing toys to the top of the frig for a few days, when she does not listen and respond. This may not seem like much and is awfully age appropriate, but it is new for Julia.

And we are losing our lead therapist as well after next week. The transition is going well but it is hard to have someone leave our lives, and lord knows, Debby, who has been our lead since we started intensive therapy, has been grafted into the family in lots of ways.

I went into school just before the end of school and met with Julia and Deb, the special ed teacher who works with Julia a number of times a day. Julia was all apologies and very willing to say she was wrong. I am looking for understanding. I think we will get there, but I am a bit stymied as to what to do. Cutting back on some of my demands is first.

Two steps forward . . .

When I came into school before the bell and could watch a bit of Julia in gym. Right now, they are doing a unit on dance using one of the computer dance games. Julia participates at times, but when I saw her, she was standing on the foot mat, not paying attention at all, and picking at her fingers. Her aide was standing nearby but not interrupting the behavior.

I know that an aide cannot constantly be in Julia's face and I don't mean that I constantly check on her, stimulate her, helicopter over her when she is home, but I felt a jolt of electricity run through me. Julia still has so many needs. If she is compliant, she can fell through the cracks and get pushed along. No one, really no one at all, is doing that right now, but I can see how it would happen.

And for a minute, I wonder about homeschooling. Then again, after two years of running PTO and doing very, very little of in school work, I am ready to go back to trenches volunteering. In the classroom, in the hall, in the lunchroom, in the library. To help Julia connect, to remind her to connect, to keep others aware of her needs.

Now to change the pace -- yesterday, Julia and one of her therapists made tissue paper flowers and hung them in an archway. When they finished and hung them, Julia couldn't wait for me to come downstairs and see their handiwork. Her excitement about sharing her new decorations was intense. She wanted to know which was my favorite, and was wild about this sign of spring.
Also, Julia reading grows every day. I am amazed at the words she is remembering. And she is comprehending better and better when she reads. Tonight, as we watched the beginning of Ponya, she wanted to know what all the beginning titles said. And recognized a few words herself.

I feel good after writing all of this. Worried to be sure, but seeing my own record of progress. For myself, I am struggling holding on to the last few months as PTO president. My ego is becoming a bit bruised as the new administration seems more than eager to take over. I love this, but at the same time, . . . hell, I am human.

The less than adequate presentation of last week still stings. I am wondering whether to let the Florida conference folks know that I'd rather not present. I have a feeling they have more than an adequate number of presenters to fill the time. But this does let go of one of my LEND goals.

My neat tax refund that I was so happy about disappeared today when a very late form from one of my investments came in. The amendment will be fine, but no refund.

I am living in last year's times. I looked back today again, to see what was happening last year at this time. I feel measures of pride and pity -- I did try my best to share and process and keep myself sane. Reading the words and the spaces between them -- oh, it was so hard. We/ I was so determined to get through. I realize too something that I had forgotten, that until David got sick in Julia with the gall bladder infections, I had no intention of giving up. That last week, I was so scared and almost sure at time that we would lose him, I lost so much of our optimism, our fight. And that is what I have been left with after he died.

Looking at the posts from last year at this time, I can read them without tears today. I can just see where I was. I can understand again and for the first time, the process.

I can see how someone going through this process of loss and healing could grow to be wise in more of life. I hope that is the path that I am on. Surely someone could benefit from my becoming wise. Surely this wisdom of which I speak has value.

06 March 2011

Bought airline tickets to Orlando for April. From Madison for Julia and I. From NYC for Cheshire. Yes, we get to see her for part of our week away. So happy! Sent my information to the conference chair to reserve the on-property Disney room for an additional 3 nights -- 5 nights in Disney! Julia and I will add a quick trip down to see Grandpa and Grandma with an overnight at Deer Field Beach and hopefully a visit to the ocean for a dip and some sand play.

Very excited for spring break!

05 March 2011

Julia had therapy this morning and I cleaned out a closet. Little by little -- why wasn't I graced with a magic wand!? The mundane, the mundane. It is a simple idea to get my house in order. Profound at the same time. The feng shui idea of trapped and stale chi -- life force -- needing to be stirred up and moved is very real to me these days. I clean a closet and there are pieces of the old life sitting, taking up space, and not of use to us any more. Sometimes getting rid of those things -- be they old cans of shaving cream or a can of beans that I will never use -- is just laden with emotion. A stirring of the chi. Sometimes it just makes sense to throw away expired creams and heart burn medication. Always I feel just a small bit of free when I finish it.
And to anyone who would imagine that I am throwing away memories, or pushing David from my life as I purge and sweep, clean and simplify, I am not. It is true that so many material things seem to hold small memories of David, but he does not need things now. Neither do I need those things to have him live in my heart. And that is the only place that I need to keep pieces of his time with me.

I disappointed myself badly yesterday. It was the class I was to give the report on hippotherapy and I was just not sufficiently prepared to do it well. I have been listening to lectures, reports, and demonstrations all school year, and although I am quite confident adding to any discussion, I am not ready to present in a cogent, entertaining and enlightening manner myself. I needed more time, I needed more of a script, I needed practice. Right now, I am not sure that even with the time, script, and practice that I would have done a so much better. And so I wonder how much energy I should be putting into this kind of communication -- Better communication was one of my goals from the beginning of the year. I thought of it mostly having to do with writing but in truth, there has been very little writing to do. Instead, there has been an emphasis on presentation and I have fallen into line and taken it on. But I don't know. My confidence flags and I wonder if I can ever be effective at it.

After therapy, Julia and I went to an international festival downtown. We drove past and parked near the capital and went to pick up prescriptions. I explained, once again, the reason for people being on the outside, marching, listening to good music, carrying signs. When I was finished, Julia asked if the governor was going to "wreck Randall School" and if he was going to take away the dinosaur books from the library.

Maybe I was a bit heavy handed. But it is nice that she is listening.

Thursday evening, I went to my church's grief group for the first time. It was a hard day to begin. I was pretty fragile, once again in the mode that an unexpected bump could set off tears. Yes, it was good to do a bit of explaining and then listening. A very young woman spoke of losing a dear friend to murder, and all I could think of was how unfair it was that she has to feel such pain. I could talk about what happened physically to David and then later about his last monologue, but not about our lives together. It will take time. Time. Time.

There was a grief group formed last autumn and, at the time, I had not lived through the suggested 6 months after the death of the grieved one before I could join. The group was also full and the facilitator put me off until this spring group started. When he got back in touch for the spring group, I was prickly and not enthusiastic. I was blaming the facilitator for not allowing me to be part of the group when I thought I was ready. This was via email and really, even if there had been a tone when I typed my email, it was pretty tame. But inside, I was snide and snarky.

No more.

I am sure I could have used the Fall group -- I was at a different place and could have used the support and feed back then -- but I am at this place -- something fragile and doubting and terribly steely and strong -- right now that needs boosting and gentling. As I prepare to subtract some of the busies from my daily round and think about adding other chores, I do need some guides on the next steps of the journey. And when the facilitator asked for our purposes for coming to the group, that is what I stated: I want help with the next steps. I am not looking for cure or an end to grieving, but just a bit of support and counsel as I take another step or two. The path of mine is a great labyrinth of spirals, twists, and turns. I go over the same ground time and again but each time it is new because I have changed. I see the same differently. I grow.

Mere weeks after David died, I felt that this journey after him was such the adventure. Hard and somewhat bitter without him, but an adventure nonetheless. I hold to that idea. Tears streaming down my face. I still hold to that ideal.

Julia surprised me at the International Festival. She sat through a Russian musical group, Taiwanese puppets, Chinese dancers, Greek dancers and Ballet Folklorica. It wasn't until the last that she an anxious to leave, and even then, once the dancers caught her attention, she enjoyed the show. I noted, with my old parental pride, that she was much more responsive to the Russian musical group that the two girls behind us of similar age who complained to their grandparents, kicked the backs of our chairs, and needed to leave in the middle of the performance.

Julia can fixate on unusual things -- or rather on inappropriate things. She gets stuck -- on the dropped handkerchief of a Chinese dancer, or the story line in the Taiwanese puppet show that left a child dead after being eaten by a magical tiger -- and that feels related to her challenges, but she is growing. Some times I see too much of where she is not -- not playing with age peers in an appropriate way, not engaging in "team" activities, not on grade level or anywhere near, not ready to join a dance group or play an instrument, not ready to further her cultural knowledge. These are all things that would please me and, in a sense, would make me look good as a parent, would add to ego. And are, I do see, so unimportant, so not what Julia needs to grow into the best person she can be. And it amazes me how she works on that every day. And I can take my cue from her and do the same.

These days, I feel like I live with a six year old. Understanding, abilities, memory, maturity. And that is not so bad.

04 March 2011

I have been trying hard to expand Julia's movie interests. Oy. Not easy. Dinosaurs and anime -- even the anime is a great step forward. A few weeks ago we started watching episodes of an old tv show called Avatar: The Last Air Bender. It took a few times before Julia was hooked, but she got there and she was willing to watch a show about people -- albeit people with peculiar powers -- but not dinosaurs, people. Then last week, we watched The Black Stallion. Horse movie. Tonight, we started Fly Away Home -- geese this time. And she is liking it -- Well, a story about a little girl who raises orphaned geese?? What is there not to like?

Of course, I forgot that the girl's mother dies in the first scene. God save me from children's stories in which a parent dies, disappears or goes missing in the first scene. Sometimes that death of a parent first scene seems to be the only way to launch a heart warming, kid meets incredible challenge story. Aren't there other challenges in kids' lives? Just rescuing geese eggs and raises the birds wouldn't have been enough?

Anyway, she is loving the movie. I think that in time, Julia will be areal animal lover.

Funny Julia story: Julia is pretty much in love with books these days. She is also incredible curious -- a real adventurer, I tell her. And then she tells others. When a therapist asked her to bring a reading book, Julia brings 6. She rummages through the book cases looking for books that she can either read or draw in. She periodically goes through my book piles, bag, and desk for reading/coloring finds.

A few weeks ago, just before the teacher sick-in, Julia emptied her reading book box in school and brought it home. There must have been 8 or 9 books that should have stayed in school, but Julia wanted to make sure she could read them at home. Then, on Wednesday, she brought home 4 or 5 new dinosaur books. I supposed that she had gotten them as part of library time, but then yesterday, I got the following: Julia brought home some Dinosaur books on Wednesday I think. We actually need those at school for her science class project. Would you be able to send them back on Monday? Nicky didn't realize they were going home.

Well, that's my girl. I will get those dinos books back to school asap. Hording books not the best behavior, but hey, it is not bad either.

03 March 2011

And the day is over and I am going to bed.

Heart Day Anniversary

Th picture is one I took as David and I walked into UW hospital. I love the expression. It is so much him that day.

Once again the anticipation of the day has been worse for me than the actuality of waking up today and getting the day started. I know that I will track this day compared to last year. I will wish for it back. My heart may break in a new way. I will remember it all. Cheshire getting amazing flights to be with us so quickly. Calls and messages. The kindness of hospital waiting staff. Other families waiting. My friend, Cathy, visiting us as we waited. The feelings of irrational hope and utter terror.

And later it will be tomorrow. And I will have lived through today.

Now that I know the end of the story, it is all so very sweet and poignant. Now that I know the end, our bravery feel like so much more that I thought it was. We did not know we would lose the war, we were concentrating on the battle and our battle cries were fierce and loud.

And now, I am singular. I am ready. I continue to believe that I do almost anything. I have lived through the death of the most important person in my life. I am not through the tunnel of grief, but I am sure that living through this time has churned up every shred of strength that I have within me.

I cry but I am still fierce and loud.
End of February pictures. I took my camera for a walk to Amy's house and so Julia took hers. It is a little kids camera and I've never figured out how to download the pictures, if I could. Julia has never cared before today.

She got such a kick out of taking pictures of me as I was snapping her. Just maybe there will be some pictures of me. Someday soon.
She checks out her handiwork. And I get a good shot of her dinosaur mittens, a gift from one of her therapists.

And every so often I get a good one. Picture, that is. Of the girl I see all the time. Of the smart, funny, loving child that wakes up next to me every day.

02 March 2011

I indulged myself and for an hour I read posts from last year. Tomorrow is the anniversary of David's transplant. I read the before and after posts and was plunged into those days. Whew, what we went through! We were so brave and daring. What adventure! In some way, I feel like we were mere children when we got that call. Was it just last year?

As I was reading, I had to let go of the crazy hope we had. And there is so much of it. Overflowing every post -- the certainty that David would get his heart and life would return to some normal. I believed like a newly baptized believer. I regret none of that -- I don't think I could have endured so much stress and worry any other way, but at the same time, I wish I could cup my own naive and believing heart in my hands and protect it from what was to come. to have such hope extinguished -- yes, I remember that as well.

I remember also that a year ago today, a young man was living the last evening of his life. He would die and his family would very lovingly donate his organs. The family's message to David, received by me last month, goes unanswered as of yet. Today was the first time I thought to answer. There was a heart in a young man, who lost everything even as he gave our family new hope. There is no way that I could thank them enough. But I can write. I do feel the pain of having to tell them of David's death. I know that they will be saddened by it.

That day, those days, of telling people that David died was so awful. Telling his father was the worst -- to hurt someone so much, some completely, and to have no way to help or make better. Such pain, such sorrow. I hated being the bearer of those tidings. If I could have held it to myself and let the world go on without pain, I would have done it.

So, these thoughts the day before the beginning of the anniversaries of this year, were bringing me to a sober point. Sad and weepy, but not despairing. I can wish for last year again, wish for 10 years ago again, but more of me understands that the time is past, that what is left of David is inside of me and the girls and those who loved him. But a bit weepy, knowing as I certainly do now that "we will not see the likes of him again." Smile. That quote -- an instruction in David's "in case of death" note. That on the day of his memorial, we should all say that to each other sometime that day.

And then, in the midst of weepy, Cheshire called with an errand for me. I had to find an old passport of hers and overnight it to her. The task which should not have been difficult was harder than needed to be because what she wanted was in David's purview. And I have not sorted and gone through all the files.

And suddenly, with that clean shot of light that occasionally appears, I knew my plans for the next school year. I have been debating what to do, what to "sign up" for. Another year of LEND with a big project, some volunteer work for ARC, looking for a job related to the disability community, or stripping myself of outside responsibility to drift a bit and set things to right. Looking in David's file draws that, much like mine, are only understood by he who set it up, gave me pause. I have so much to do to sort and clear the piles and boxes.

And that is my next task. There is the work that must be done. And so, I will turn again to those tasks. Full knowing I have written this before, and in truth, have done little pieces of it, but it must be the task coming next. I will clear. I will take days going through boxes and draws. I will linger over old writing, tear up over pictures and restaurant receipts, and I will try not to save more than I must. I will throw away everything I can to save Cheshire and Julia the task of throwing away on some future day. But I will save what is dear.

And I will take care of myself. It has finally dawned on me that I have forgotten how.
The only thing that I can possibly post on FaceBook is political. What else is this important? Walker's budget is appalling -- giving business and the rich everything they could want, on the backs of our children's precious education, plus deep cuts in medicaid that will take medical services from our poorest and most needy citizens. Wisconsin arts funding has disappeared. This is not the state that I chose to move to three and a half years ago.

So, on a very personal note, should I really be deciding on kitchen cabinets and new windows? Do I really want to invest in a much meaner, leaner, and family unfriendly Madison? Are the very reasons that David and I decided to make this our home going to disappear?