31 May 2012

Out and about for parts of the day and oh, it feels so free even though I am either on crutches or using my scooter.  Everything takes two or three times as long as it usually does, but once again, it is a fine practice of patience.  How much more do I need?  Ah, there is impatience again.
I am energized today.  I visited Julia’s special ed teacher and she gave me a large folder of math and reading activities for Julia’s summer.  I am excited to get the play room ready for vacation, but I will not start that until next week.  Bending, lifting, carrying and moving things around remain my biggest challenges.  Hopefully, by next week, these will become easier.  I’ve made phone calls -- health insurance where the grand snafu continues and another person promises to call back, an art therapist who might work with Julia this summer, a swim instructor at our local community pool who will try to arrange for private lessons (Julia will not do well in their classes for 12), and a week long bike came sponsored by the Downs Syndrome Society and promises to get Julia on two wheels within a week.  I went to the library to replenish my own stack of books on tape and to find books to start Julia’s summer.  Easy chapter books!  Junie B. Jones, Judy Moody, Geronimo Stilton, and an Amber Fairy will hopefully grace Julia’s reading journal.  I shopped, mainly for an iPad that I hope to purchase within the week.  We both are in desperate need of summer clothes, Julia more than I, but I have not tackled that yet.  Ironically, the scooter that I am using to get around operated in the mall better than anywhere else I have been.  I am now think of it as the “shopping scooter.”  On the computer, I am catching up on emails that have been hard to return in recent weeks.  
The heavy lethergy that settled like a weighted cloak has lifted, if only for the moment.  No, I have no faith that it is gone for good, or gone for a good long while, but even for the moment is a relief.  

30 May 2012

This past month, possibly due to sitting on the couch for days on end and proofing recipes, something new is growing.  
What I recognize from all the previous days is the sense of sadness, sometimes a sense of doom and a feeling that the worst is going to happen.  I still miss David and have to catch myself when I begin to believe (and believe is not the right word, maybe take for granted is better) that he will return home one day and we will have our old life back.  This feeling is not willful at all, it is just there, as if the program is always running in the background.  In fact, everything that I just noted is like something running in the background.  It is not good, but it does not roar in my ears, it just hums along.  
But with this as background, I am gaining some resilience, resilience that I have sorely missed.  Awhile back, an old friend wrote that David and I always seemed like a golden couple.  We were pretty happy with our lives together, well, I am sure that I was and I think David was, but “golden”?  David and I struggled and reached for what was beyond our grasp for almost our whole lives together.  We wanted theater, he wanted film, we wanted to write, we wanted success, we wanted middle class living in the arts, we wanted successful law careers, we wanted more children, we wanted to move back to the east coast.  And we did not just want these things, we worked in the hopes of getting some of them.  As I went through our stuff, I was struck by all the effort that went into our lives -- all the attempts, rejection letters, resumes and head shots, and resumes and writing samples.  We did not take our lot in life for granted, we did not take our blessings for granted either -- Cheshire, books, articles, contracts, grants, jobs and travel.  We worked hard for most things that we had and worked harder for what we didn’t have that we wanted.  So much rejection, so many new beginnings, and I was surprised that instead of perceiving our lives as failures and full of plan B’s, I was proud of us for all that effort.  I was proud that we could reconfigure dreams and go on dreaming.  I could see places where we might have done more or better, but we did as much as we could for as long as we could.
When David died, I said over and over that I did not want to take another day for granted, I wanted to live deliberately.  I was viewing that as a great change but when I looked at the accumulation of our lives, I saw that we had been living deliberately for years.  True those last years when David’s heart began to fail and then when we were waiting for a new one, we marked time.  We held our breath.  Our plans were not of new novels or exotic travel or another kid, but of a new kitchen and PTO activities.  It did not feel as deliberate as before that time, but I see it now as holding on tight to hope, to believing that there would be parties to give in this house and a “best education” for Julia.  The Thanksgiving of 2009 was our only real party in this house, and it has taken until now, now, lying on the couch with friends looking in to buy groceries and to do my laundry, to want to have parties here.  
This journey is long.
But I come back to the comment that we were  a “golden couple”?  I guess I imagine a golden couple as people who get where they intended to go with grace and ease -- Grace Kelly and her prince, Fred and . . .  Who skimmed the challenges of life and danced through the barbs.  I see people without fear because they have always succeeded.  I don’t know if my old friend thought of us that way.  I don’t.  But after writing all of that down, I perceive our lives together as lives well lived, not perfect but deliberate.  And maybe that is golden in its own way.  
But that is not where I started and not what I wanted to write about.  
Yesterday, I called the Wisconsin Office who administers employee health insurance.  I am insured under the state’s insurance plan because I am a widow of a state employee.  It’s no benefit or bargain.  It is self-pay and very expensive, but it is a good plan.   Julia is not on that plan which has made self-pay more palatable and possible, and she has been covered as part of her autism waiver slot that gave us intensive therapy.  Therapy under the waiver slot ends in July and I hoped to put her on my plan and get her another year of intensive and her regular care.  I inquired a few months ago, I sent the application at the beginning of May. Now, this should be no problem to add her but it is midyear, not open season, and so, I needed to justify her joining immediately.  I documented well.  I called yesterday to check on the progress of my application and found out that they had the application but had no record of me!  I was on hold a couple of times which amounted to almost an hour -- thank goodness for speaker phone -- and then told I would be called back.  (Just to note, “Ginger” said she’d call yesterday and didn’t.  No word yet today and half the day is over.)  I am sure that they will sort this out eventually and that eventually Julia will go on my plan, but it could mean a summer without therapy.
And I woke up this morning thinking of all the things we could do without therapy!  And I woke up this morning without worrying what I will do when the rejection from the LEND program comes.  
I am sure I will slip back some, maybe soon, but for today, I can deal.  I can make another plan B, a few plan B’s.  And that is the way of me that I remember.  That is the me I want and need to get back to.  I am back at least for today.

29 May 2012

Almost every morning, I ask Julia if she dreamed during the night and when she answers, yes, I ask she what her dream was about.  Sometimes, rarely but sometimes, she asks me in return.  This morning, when I asked what her dream was about she said, "loving."  "Loving someone?"  I asked.  "Loving a friend.  Mommy, I want to have a friend."  This is such an emotional issue for me that my eyes immediately tear up and I tell Julia that she will have a friend one day.  I tell her that it is important to work hard on being a good friend to someone and that she can practice on me.  If we can be good friends to each other, she will learn everything she needs to know about friends.  And that is a blend of mothering and some attachment theory.

Julia lost a tooth yesterday while we were meditating.  Great time to be playing with the lose tooth with a little tongue.  After we finished our meditation, she washed the tooth off because it was "uchky" and put the plastic bag under her pillow.  I am not sure if I've done this before or if it was the uchky factor of a "disgusting, bloody" thing under her pillow.  We reviewed tooth fairy rules -- no checking on the bag until the morning, and the money belongs to her.  Julia went to bed, I went into my room to read.  And, well, of course, I forgot to put the money in!!!  Julia forgot about the tooth fairy when she first woke up and didn't realize that she needed to check under her pillow until she was downstairs eating breakfast.  By that time, I remembered my omission and was ready to tell her that it was too late to go back up.  Dodged that one.  She checked on it as soon as she got home and was happy to find some fairy money.

28 May 2012

Many, many thoughts jangling around in my head today. Labor day weekend.  Two years ago, David was still alive and we did our first post-op bike ride, and then we filled the kiddie pool and Julia splashed in the water while David and I sat on comfortable camp chairs with our feet in the water.

After David died I ignored the pool which sat in the back yard getting dirty and filled with rain and debris.  I could not bring myself to touch it and eventually in the fall I threw it away.  Today, for the first time in two years, Julia asked if we could fill the pool for her to play in.  I marveled that she remembered.  She had been pretty uninterested in it two years ago.  I wonder if she shut herself off from those days until now.  We are  talking more about Daddy, David these days.   She says it makes her sad but she wants to remember him. We are coming out of mourning.

What a time of joy and hope that was.  I can remember it so clearly.  Looking back, I see that the earth shaking shock of David's death was due, in part, to the relief that I felt after surgery and watching David recover.  I was valuing each day, and I was making plans for a future.  Right now, I want to put my arms around the me of two years ago.  Not to tell that me the future, but to give a bit more strength for the days ahead.  I have accepted more of myself, of this after-life which is becoming a new life, of the journey.  I can touch a sadness that is deeper than any that came before but I see the pain is not as searing.  I say over and over these days that I can see the light at the end of the tunnel even though I seem to remain in the tunnel.  It takes time and more time.  I keep working through my tunnel with a vengeance because I know that I have to get through it for Julia.  What a gift that child!  It might be more advanced to get through it because of me and I might find that reason given the need to find it, but Julia has been my crutch, my reason to put one foot in front of the other.  And I am not complaining at all about that.

Yesterday, we went to a private swim club that is a bit west of us.  Amy and her family belong and invited us.  Our community pool is not open until school is out (14 more days) and it was hot, hot, hot yesterday.  Julia had a wonderful time, playing with Amy's daughter who is the soul of compassion.  She stuck with Julia even when other friends were there.  In fact, she seemed to draw Julia into the small group of girls that were playing and splashing.  Julia's dino squirt guns added to the fun and Julia was able to share and take turns.  Is this enough of a reason to abandon the community pool and join the private one?

And finally, this morning, Julia hogged the computer to play her reflex math game and I felt the need of that iPad that I want to buy for her.  I hope that I can pay for it from a state fund that I will get and I am a bit hesitant to get it before the money comes through, but on the other hand, I would love to set up a bunch of features for her before she finishes school.  I could float the cost for a month.  I am still convincing myself to buy it asap.

Yesterday's excursion was my first on my own.  Or more on my own than before.  Amy met me at the pool's entrance and parked my car for me so I would not have to walk too far.  I sat in the hot sun, couldn't go in.  I wondered about all those people who never go into a pool.  Those who sit and sweat -- gosh, I would hate that.  I can shower now but I cannot soak my foot and that includes getting into a pool.  I will do it for as long as I must but after that, I am getting into the pool!

I was also drug free yesterday (although this morning the pain was sufficient enough to take a pill) and clear enough to drive.  Today, not so much but it is getting better.  I can take a few steps today and we will walk the dog later on with my scooter.

After the pool, we did a grocery run on our own.  I used one of the motorized chairs at the store and Julia rode around on my scooter.  So, maybe we should have left my scooter at the curtesy desk like I did when I went shopping with Cheshire, and I am sure there were comments or thoughts by other shoppers, but, you know, who cares.  We did it, it was almost fun, and Julia behaved pretty well.

I made dinner, feeding Julia calf's liver without comment from her.  I felt the need for some, the vitamins and minerals liver contains are good for Julia as well.  I was a bit surprised that she ate it without comments, but she likes the fried onions that I heaped on top.

27 May 2012

8:51 am.  I hear Julia reading in her room.  We are both still in bed.  The day needs to begin.  Two weeks of couching it and the necessity of slowing down came at a good time.  Could not have given it to myself.  Pity not to understand my needs, but what a blessing to be provided with the time.  Got through the night without drugs and I am very comfortable.  If I can get through the day, I will feel ready to drive.  I am clear and have energy.  Ok, I can't move around with that energy. Pushing self pity aside, I see the path immediately ahead and I am ready.  Welcome summer!  Another 15 days and Julia will have days filled only with me and therapy.  I can imagine such plans!

26 May 2012

It is odd to take a break from writing here.  In some way, it is a habit that is very hard to break.  And I know that I will be back.  Just in a while.  
Since surgery, I have been following doc orders and taking it very slow.  Yes, still tv.  British soapy drama when I cannot find sci-fi.  A friend has a new website that needs proofing, so I am helping with that.  I sent in an application for a second year of LEND yesterday, meeting the deadline.  No one acknowledged that I sent it, and there has been no word from my mentor.  It is an exercise.  Most probably futile, but it is one of the things I’ve been thinking of as a choice for a next step.  Somehow I could not just let it fall aside.  For better or worse, they must reject me before I can move on.  Working on the short statement of my interest clarified ideas for a future.  It would be very nice to do as I propose -- figure out how to be a parent partner on an interdisciplinary diagnostic and/or treatment team that serves families with neurodevelopmentally disabled children.  I am almost sure I can do it.  I would be good at it.  
The thread is out there now.  
Julia is rising to the challenged of a mother on the couch.  I’ve asked her to do everything from taking in the garbage cans to locking doors to fetching and carrying everything that I cannot hold in one hand.  She balks some, like any self respecting 11 year old, but she does more and more.  
Julia’s teacher sent home the log in information and password of the math games that Julia plays in school now.  Randall School is on some sort of pilot program with Reflex Math.  Math facts connected with catchy games.  Julia is pretty awful at it right now but she wants to play.  Who knows? This might be the summer of math facts. The last three summers have triggered big gains in her learning: 2010 reading, 2011 counting.  Summer seems to be the time to build the critical mass necessary for her to take a leap.  I meet with her teacher next week to get her advice on what to do with the summer.
We work on a family tree for class -- the usual uncomfortable situation for n adopted child.  For Julia, it is not awkward because she accepts without question that she has a China mommy and daddy, and her family which is me and Cheshire.  This is the understanding of a younger child and until she questions more, I will let that be her reality.  She asks, “Did you miss me before you knew me?” and “Was it hard for you to wait (to come and get me)?”  So, there is some understanding.  There is a volunteer assignment to bring in some ethnic food that is something of your ethnic heritage.  Julia understands that our family is Ukrainian, Jewish and Chinese.  She says that we are all those three, and to the extent that I hope that she identifies with all three backgrounds, our whole family needs to take it all on as well.  I don’t know if I will be able, but I would love to send in a plate with Jewish, Ukrainian and Chinese food on it.

18 May 2012

Five days post-op and ready to see the doctor this morning for bandage change and advice.  I have been sequestered on the second floor, primarily in the bedroom with occasional bathroom visits.  It is so weird to Pain meds have kept me comfortable but unable to concentrate on anything other than very junky tv.  I am diving into the streaming world of dystopia sci fi and enjoying the luxury.  A friend noted on Facebook that she was a bit envious.  I would be too, but it takes a day to melt into the comment and smile.  
I am here and dammed it if I don’t want to be “there.”  I have a great lesson in being present, living now.  I squander it for hours at a time complaining of my inability to reach for more or turning away from the pleasures I have set aside to indulge in.  Reading Lisa’s blog post describing airport waiting corrals the ego chatter.  I sink in an enjoy again.
Cheshire has been taking good care of me and Julia, cooking, cleaning, caring for the dog, getting the kid ready for school and bed, fetching for my pleasure, as well as doing her part to clear the basement clutter and relieve me of the accumulated baggage.  I wonder at the good fortune of having a daughter who is willing to nurse her sick parents.    I did nothing to deserve such care, although so little is due to just deserts.  
I was crazy bored most of the day yesterday but today seems to be about settling into a mellow acceptance.  Silly all those feelings -- I must be as still as I can be for 6 weeks for the best recovery.  I can be anxious about the time and drive myself and everyone around me crazy, or I can accept it.  Possibly, enjoy the time.  I have volunteered to do a small sedentary task for a friend.  I have a few books in a pile.  I can explore a new blog/website.  I have some email to return.  I have a recommendation of another tv show.   I don’t even have to make excuses for laying around and “doing” very little.  Life is not so bad.

13 May 2012

Mother’s Day.  What a holiday for sadness.  The best emotion I can rally is relief, and that is colored by the end of life as I knew it.  
My mother demanded recognition for holidays.  She wanted cards and gifts and gratefulness.  I constantly fell short and was punished.  Instead of making me a better gift buyer, card sender, and dutiful daughter, the punishment grew calluses.  I could conveniently forget to buy, to send, to visit.  I never asked why it was so important and that still mystifies me.  
For myself, it has never been important to have it all, whatever all was, on some designated day.  We could open Christmas presents after we made coffee and got the video camera ready, we could celebrate private holidays on convenient days, and if someone forgot, forgets, it matters very little.  And so, David and I were well paired.  He was also hounded by a father who demanded recognition on the exact day.  He and his father exchanged checks on birthdays for years.  I admit that the checks were useful in the lean years, but he never needed David’s check, and in the lean years it did seem like the check that came to him should be squirreled away to send back a few months later.  I once suggested that David do just that -- send the very check that his father sent to him, back again.  I imagined they they could avoid wasting a few checks a year by designating check the official birthday-anniversary-father’s day-new year gift.  The suggestion was not appreciated.  It would have created too many waves, and David was willing to be compliant to avoid complications.  
And so, we came together swearing to be low key and without those sorts of demands.  And for the most part, it worked out fine.  Granted, David was not the best of gift buyers, and when I was sad or stressed, there might be no gift at all.  I hardly shop when happy.  Negative feelings do not send me to the stores.  But all of that was fine.  A kiss, a wish, maybe a dinner the next weekend, were always enough.
But, and another but, celebrating mother’s day and father’s day from the time since Cheshire was born was sweet, possibility made sweeter by our reluctance to conform to those hallmark holidays.  It was the non-celebrated parent who bought the card or the gift, who urged the child to sign or write or make the craft.  My favorite mother’s day gift was being given the day free to plant in the garden with time for a bath afterwards and a Sunday supper with a movie.  David gave me the day, took care of the kid, cooked and found the movie.  It was all done for me.  Such a gift, such gift.  It was the thought, the honoring of a wish.  Effortless.
I was intent on ignoring mother’s day this year, but unless I went to the mountain top, I can’t see how I could do it.  And Cheshire is coming out today to take care of us for the week.  She would tease me for ignoring the holiday, and so, I will cook something nice for tonight’s dinner.  Yesterday, doing a very big food shopping, Julia and I heard an announcement in Copps that there was a cake decorating craft for kids to do for their moms.  Julia wanted to do it and I brought her to the table.  The nice lady guiding the kids, encouraged me to go away while she worked with Julia.  I resisted for a moment, but the woman was kind and Julia wanted to make a surprise.   I went to pick up cereal and tea.  Julia was pleased with her work and is excited about eating the cake at dinner tonight.  Sharing it was Cheshire as well.  Still, I miss very much today the mother’s days of planting or of a few words on a home made card urged on by David.  I understand how single moms could struggle with some of these same issues and generally, I can find solutions like, I am sure, they do, but there was a time when for me mother’s day included a father.  I have not gotten past or through this one yet.  At least, not today.  

11 May 2012

I am going to have a bit of foot surgery done next Monday.  Last night, I told Julia about it, letting her know that Cheshire is coming home to take care of us for the week and that my recovery will take a bit of time but only because it is on the foot.  
Julia asked, “What about your other foot?”  
She would not have ever asked that kind of insightful question even a few months ago.
We’ve had a few tough weeks of behavior.  What I am seeing these days seems to be the sun after the storm.  I am hoping the insightful growth.

07 May 2012

I have been calling this my fallow year, and at the beginning I imagined that I would have days of quietly sitting and reading and writing.  I equated fallow with intentional contemplation.  Unfortunately or perhaps fortunately, so far there has been little contemplation and reading.  The tasks of cleaning out body, soul, and house have taken up so much time.  I am coming to the end of sorting and storing of documents, pictures, and memorabilia.  Most of it is in plastic file boxes which are neatly stacked in the basement store room.  There is still a bit of a mess in the main portion of the basement, but Cheshire will be taking some of that to her new apartment, and later this summer I will have another yard sale followed by hefty donations to St. Vinnie’s.  For now, I need to clean and straighten what I’ve done, to give the house a good cleaning, and to switch gears.
I am having foot surgery next week.  Cheshire is coming out to help me during the week, and this will give me some forced down time since I am supposed to stay off my feet as much as I can for six weeks.  Maybe I will get my contemplation time in and feel fallow.
The surgery which is very minor, just inconvenient, is throwing a kink into applying for second year LEND.  I did not leave anything to the last moment but no one has had time to talk to me, the morning coffee I planned with my mentor for the 21st will be impossible to make because I will not be driving.  Not driving for a week and a half means that meeting with any of the LEND staff, which is strongly advised before applying, will be impossible.  And the initial deadline for applying it May 25.  So, even if I can cram in a meeting this week or on the 22nd or 23rd, I will have little time to prepare a strong statement.  Coupled with that, the email with the application attached (which I received late last week), said that they were contemplating 2 second year students and there are at least 6 people who have expressed interest.  Generally, family trainees do not do a second year, the training is probably much more valuable to students who are helping professionals, and I have the feeling that I do not have the support that I had last year.  There is some ego workings that I am battling and some frustration that no matter how timely I tried to be with my questions, that I will have to rush meetings and application, but at one point today, I felt a calm knowing that this is merely but one door and I can only work as hard as I can to get what I want, and then I have to trust that the outcome will be for my highest good.  
I have ideas and possibilities for next year.  I’ve been confused, pondered, and considered.  I am beginning to put myself out there, apply and ask, and allow the answers to come back.  A few weeks ago, I asked once again to adopt from China.  I was interested in a child whose special need makes her particularly difficult to place.  It will also make her life in China difficult.  She is older and her file was first prepared when she was a toddler.  The agency which recently returned her file told me that not one person other than myself had asked to look at the file.  Still, China would not consider me for this child -- too single and too old.  The decision saddened me, especially for this child.  Too bad that a single, old mother is not better than an orphanage.  
It is a door closed.   
I applied and was accept into the Quest program at FUS.  It will mean two years of deepening spirituality and intentional community building.  
A door opened.
My mother’s house closed and the money is in the bank.  I hoped that this would mean an end to estate work; however . . . . and isn’t there always a “however”  . . . there are two outstanding claims that my homeowner’s insurance is handling.  Although insurance is taking responsibility, the estate cannot be closed while the claims are open.    One of the claims may take a year or two to settle.  And so, I continue.  
This is a door I would love to close and it resolutely remains open.
And so, I will try to view my participation in LEND the same way.  Tonight, I am not so mellow, I lean towards taking any decision personally.  But, if I am meant to be there, they will accept me.  If they think the slot better filled by someone else, then I will find something else.  Acceptance and participation would give me a path.  Not an easy or a clear path, but some structure as I figure out the foreseeable future.  Maybe I am meant to use a path, maybe I am meant to walk in the woods.  
I want most of all to be able to turn and face the wind.