28 June 2012

“Some changes look negative on the surface but you will soon realize that space is being created in your life for something new to emerge.” ~Eckhart Tolle
I have really strained to live in this idea.  Some spiritual teachers would say that I should not strain.  I should just be.  
I am not there yet.  So, straining is what I gravitate to.  
This is where I am today.  Challenge:  Insurance.  Applied, after checking it out with the insurance company, in May to add Julia to my health plan.  I am biting the bullet cost-wise but was hoping to score another year of intensive therapy.  But, and it is a big but, my plan is part of the state employee plan and it is the state’s employee trust fund that needs to approve.  And they haven’t.  After calling each week and waiting for a decision, they called me today to say that there was no decision.  What appalls me is that not only are they being unfair and rathe callous to Julia and I, but I have five therapists who will be out of part of their jobs, and I could give them no warning at all.  
Contingency plans.  I don’t have them.  when it is appropriate to make them?  
Well, now, for sure.  But I can’t really give up hope until tomorrow.  
Challenge: Time.  What to do with it.  Three years ago, I gave up 25 hours a week with Julia to therapists who have done wonders with her.  I had worked with her before that and I believe that I can do it again, but I had back up back then.  For the last two years its been the therapists who have been my back up.  
Julia’s behavior is different and better and in a whole different place, but she is no companion.  She is still challenging 24/7.
And it will mean that for the rest of the summer, I will not have any of my own time.  I know, I am the mom.  My own time is not really part of the job description, but I’ve grown used to it.  
You know, I believe that insurance will come through tomorrow.  I may be completely wrong.  Completely.  But I can’t relinquish the belief.  I can’t shake the optimism.  So, no contingency plans, no moaning, no selfish kvetching for another 24 hours.  
Last week, Julia said, “Mom, that bike riding really wears me out.”  And also, “Mom, I want my Dad back.”  Brief really cogent moments.  Emergence of another kind.

26 June 2012

Summer morning in the kitchen with the dog. Appropriate behavior that most of us take so much for granted is, in reality, long practiced and finally incorporated into daily living skills.  Julia is making friends.

I meant to write yesterday but the day got filled up and I just didn’t feel like writing more about feelings after I spoke to Mary on the phone last night.  Today, I have crawled out of the pit of doom (dun, dun, dun -- sung in a descending scale) which is, in itself, very good news.  I have complained for such a long time that I’ve lost all resiliency but I have noticed that some is coming back.  Not as quickly as I would like, but some is so much better than none.  Bouncing back, which is what this feels like, is a vast improvement over wallowing in puddles of grief and self-pity for days without relief.  But be it long or short, the bottom of the pit is deep.
At church on Sunday, this was the quote on the cover of our order of service:
“People usually consider walking on water or in thin air a miracle.  But I think the real miracle is not to walk either on water or in this air, but to walk on earth.”  ~Thick Nhat Hanh
Reading that, I scribbled this:
It is that day again.
The day with the same date as the day his breathing stopped.
How simple
‘his breathing stopped.’
How this simple process of stopping ripped my life into pieces.  
A rent that does not mend.
I have filled my day with life like a drowning swimmer fills her lungs with hungry breaths.
But there are still days that I have no wish to breathe or heal.  
I want just to follow.
And there it is in words, written in ink
The strands of ideas I have not dared allowed to coalesce to full thought.
And in this moment I am the first soul to feel so much alone.
Michael’s sermon was called “Come Walk With Me” and he told of the glories and his experience of being and seeing walkers.  As he spoke, I began to reassure myself, self-talk myself back among the breathing masses.  I realize that it has gotten harder and harder to maintain my native optimism without being able to move around freely or putting my hands into dirt.  Forced foot healing has taken its toll, especially during the last week.  I begin to remember my whys.  I begin to take in air in great gulps.  I feel saved for one more day.
And I put on two flip-flops this morning and did not use the scooter to walk the dog.
I am a damned optimist.

23 June 2012

let yourself be silently drawn
by the strange pull
of what you really love.
it will not lead you astray.
I have been filled with self-pity during this week, ready to count the list of all I cannot do and all I do not have from not being able to run behind Julia to help her with her bike to not having unconditional back up in my life to not having ambitions and goals that are carefully mapped out and almost accomplished.  I have found ways of ignoring that Julia got back on a horse this week, that she rode her two wheeler, that I was interviewed to possibly be part of an interesting research grant for “lay trainers”, and that I will be a LEND II trainee in the fall.   There is the pull of what “you really love” and there is the pull from the part of me that sees only the dark and wants.  I get it!  The pull of the looming anniversary is certainly leading me astray.  It is hard to count off these days and not think of two years ago.  Hard to embrace or ignore what I remember and what I have forgotten.  The is no way but through every bit of it.  I would feel so much better to find a way to move around the pain, but the pain squelched here and now would pop up again later.  There is no way but through it.  I will sit with this pain and convince it to be a teacher and friend.
 Julia and the volunteer who worked with her all week, Dawn.  Dawn finally had to break into a jog late on Thursday and was running on Friday to keep up with Julia.  And a view of the bike with handle.
 Julia and one of the staff of Lose those Training Wheels.  Nikki was awesome.  She encouraged and entreated and had an endless supply of hints and new techniques.  Most of all, she never gave up pushing the kids on to the next level of skill.  And I have a feeling that if I don't keep Julia's skills up, she may be knocking at my door next week.
 A group shot of the kids, staff, and volunteers of the 8:15 a.m. group.
 Kids and bikes.
 Julia with certificate and bike.
 A very grateful little girl with Dawn.
Another posed picture for the archives.

22 June 2012

Julia did ride her two wheeler today and I was surprised.  I really didn’t think she could do it.  This is more about my current mood than her ability.  She had most of the skills -- balance, steering, stopping -- what she lacked was focus.  She could not seem to keep her eyes on the path ahead.  She was looking down and behind her, and to the side.  And when she looked like that, the bike wobbled and her lost balance.  Or bumped into a wall.  But those teaching her were determined to get her up and on that bike and they did it.  
I found a bike on Craig’s List on Wednesday night.  I bought the handle for the back of the bike on Friday.  I need to see if my old bike carrier will still go on the back of my car, or I have to buy a new one.  
The kid needs practice.  Every day practice.  I can’t do that right now with my bad foot but I’ll be damned if she is going to lose this skill.  

20 June 2012

The third day of bike camp

Julia is still very willing.  She is also doing well on the roller bike, albeit slow.  I can see that her volunteers have picked up their pace -- not jogging yet, but walking briskly beside her.  I may have found a bike for Julia on Craig’s List.  Julia is between a 20” and a 24.”  She would probably do best on a 22” but I don’t think that they make that size.  I wanted to stick with the 20” because she views that as a bike that she can handle but I don’t want to buy something new for just a year.  Truth be told, I prefer not to buy anything new until she is ready for an adult bike.  We go to look and hopefully pick up the bike after our last therapy session tonight.
The first kid of our group is riding on a two wheeler and riding independently.  He is the one who jumped on the roller bike the first day and started pedaling very quickly much to his mother’s surprise and delight.  He has fallen once and gotten right back on with cheering and high fives.  There is not a dry eye in the parent corner.  These victories are so small compared with the accomplishments of typically developing children but they are incredibly huge for our kids.  And they become “our” kids so quickly.  They come from so far down the mountain.
Second kid on a two wheeler.  This one a bit unsteady.  The first kid is learning to brake.  That makes two of the six on two wheelers and it is only Wednesday.  Julia closed out the day’s riding well, but she is not ready for the two wheeler yet.  It is her focus mostly that is holding her back.  
After bike riding, we head home and once again nap.  Julia resists laying down but if I put on some guided meditation and we half lay on the couch she falls asleep for 20 minutes or so.  She has napped every day of the camp.  This is wonderful.  Julia has only napped when she has been sick.  Even in the car, on long trips, she sleep infrequently.  It is true that pedaling a bike for 75 minutes is probably exhausting, but I also take it as another notch on our attachment belt.  

Written 19 June 2012

Second day of bike camp.
Julia was the first kid on a bike this morning.  She ran into the convention center, grabbed her helmut and went right into the “exhibit hall” while I signed another form.  She is still the slowest kid -- or maybe she is tied with one other boy -- of the bunch.  This morning she has two volunteers helping her.  One at the back of the bike making sure that that she doesn’t tip over, and the other jogging backwards in front of the bike encouraging Julia to look up and appropriately forward.  Right now she is on a break -- and they break very seldom and for a very short time -- walking over to the water dispenser, holding one of her volunteer’s hands.  Their optimism is contagious.  Thank goodness!
During camp today, Julia rides on a special tandem bike.  The child rides in the front so that the instructor can see and feel how she is steering and peddling. (dual steering and pedals).  She looks great on that bike and yells  for me to watch she passes by my chair.  
They change the back roller on her bike to force her to do more of the balancing and she has a bit of trouble tipping over; however, she is not acting scared or refusing to get back on the bike.

18 June 2012

Last Thursday, June 14, Julia went back to riding.  We took off the winter-spring term at the riding school because winter scheduling felt crazy and it was too cold.  We may not do the same thing this coming year.  Julia enjoyed being back in the barn and back on a horse.  She listened much better than they had last year.  I wonder if it has to do with her stress level.  She chatters and ignore input when she is stressed.  I could also see that her aides did not seem to feel they had to hold onto her every minute of her ride.  

Julia in our local cemetery on Father's Day before she released balloons for Daddy, Grandpa, and Jaji.  David is not buried but it is Julia's choice to go there to walk and release balloons.  There are also places where there are no trees obstructing good balloon flight.  It is interesting that Julia also includes Jaji, my father.  She never met him, but he was so excited about our adoption and he followed our China trip on our blog.  He died three months after she came home.

This was how I started writing today.  Pretty ugly and very, very sad.  Julia and I came back from bike camp, meditated/napped, and then played with her ipad until her first therapist came.  The day got a whole lot better after the nap -- even though it was at 9:30 a.m.
Gotta’ be gentle with us.  The beginning of July is coming up and I need to plan for miserable.  With misery, at least for me, comes frustration, self-pity, and judgment.  None of that works well for Julia and I.  Gotta’ be gentle with us.
Yesterday, I wrote in pencil the thought that was running through my head: today is one of those days that I need to chose not to be miserable.  The temptation of the slippery slope into doom and despair looms large and I know that there is a long, steep slope staring me in the face.  Chose not to be managed by the pain but to sit with it.  Sit still without losing ground.  I feel the coming.  July looms.
Julia is being particularly hard right now.  She is not listening!  Not listening!  How many times can I ask, say, request, beg, yell!!! before she responds.  I feel like I am yelling all the time.  I plan for more time to do things, to get places, but there is no way of planning enough time.  I feel like my predominate tone of voice is raised and angry.
So much for frustration.
Bike camp.  Julia is moderately excited about starting.  She willingly gets on the bike and begins to peddle.  Right now, after 20 minutes, she is having a hard time peddling quickly enough to keep it going.  She keeps stopping.  She does not look where she is going, She looks down and behind.  She looks where she has been.  She misses turns and bumps into cones.  She rode, albeit very slowly, into the wall.  She has more core strength than ever before, but I wonder if it is enough to keep a bike going.  She also keeps chattering about the dinosaur exhibit that she saw in the exhibit hall last winter.  She chatters in part because she is nervous.  Most of the other kids are going quickly enough to cause their volunteer to jog along side or behind them.  Julia’s volunteer strolls and needs to prompt Julia to begin peddling again.  80% of kids are riding a two wheeler by the end of the week.  Today, I am feeling Julia may be in the remaining 20%.  There is a girl who is attending the camp for the third time.  She is doing well right now, but I hear the transition to a real bike is what is hard for her.
Reading through, I think that I did not avoid the slope.  It is my resilience that goes first -- no plan for Julia not listening, seeing only the possibility of Julia ending up in the 20%, and I am feeling sorry for myself.  David was in that 20% of transplant patients who do not survive the first year.  Damn  20%.  
This is more about me than Julia.  If I can, I will take a step back, take a bit more are of myself.  If Julia needs another year of bike camp, then she can have it.  Time after time, I want her on some preset schedule, and she is definitely on her own.  

14 June 2012

Mommy, take my picture.

Julia has started posing for pictures.  Last night, we were on the UW Terrace for an FUS meeting.  She enjoyed seeing the water and the boats.  After the meeting she wanted me to take pictures of the boats so that she could draw them later on.  And then, she wanted me to take a picture of her in front of the water.  She has never asked for such things.  I don’t think she has ever thought of taking pictures so that she could copy them later.  Is she becoming aware of herself, and of the world outside of her as separate from herself? I hold my breath in hope.

The summer schedule is in full effect even though I almost missed my appointment with Marilyn today and I did not plan for any on-the-go meals for Julia.  Thursdays will be our crazy activity day.  It is not too much or too difficult but it needs planning which was what I did not do today.  Where was my brain?  I was taking vacation much too seriously.  

I am coming into the second anniversary of the last few weeks of David’s life and I feel myself preparing for the onslaught of emotion.  Last year was rough.  I don’t expect it to be as hard this year, but I don’t expect it to pass unnoticed either.  While Cheshire was waiting on my hand and foot in the first days after my small surgery, I recognized what a good job she was doing and that David would not have done such a good job nursing me.  The thought spun on.  David and I had really never been ill during the entire time we were together.  Yes, there were bad colds, extracted wisdom teeth, and David’s case of walk pneumonia, but our modus oprendi for illness was to push through, do more, keep to schedules, and take as little time away from work and ongoing life as possible.  The sad thought crossed my mind that we were not prepared for heavy duty recovery from a heart transplant.  I think that I was/am more gentle on myself than David was, but I followed David’s lead on his recovery.  I did not insist that he needed to slow down.  The night that I found him on the bathroom floor, he questioned me when I decided to call an ambulance.  I was sure that I was right but there was a small doubt in the back of my mind -- a small part of me that was steeling for an admonishment from David and some health care provider who would think me silly for coming to the ER.  
I don’t blame myself for not making David take care of himself.  I can’t.  We did not know how slow he should have taken it.  He had no idea that he could not push through the pain and the reduced ability this time.  This had always worked before.  We did not know how fragile he was and really how high the stakes were.  No blame, but sadness.  Would better care have kept him alive?  I have no idea.  Maybe, but who knows if his congenital condition was really taken care of with a new heart.  There is no way of retracing our steps, but every reason to learn from those mistakes.
And so, I am more than happy to have a good nurse in Cheshire and to put myself on the couch at least as long as the doc advises.  
The other David related thought that comes up is the way that ordinary things can trigger such emotion.  A few houses away from mine, there is a front garden with tall lilies growing.  Since we’ve lived in Madison, I have enjoyed watching those lilies grow and bloom.  I remember enthusiastically pointing out those lilies to David, one of which was the lily that I carried as part of my wedding bouquet.  I pointed out enthusiastically and David politely acknowledged.  He never developed any love for gardens.  I remember that those lilies bloomed right around the time that David was re-hospitalized and died.  I remember the scent of those flowers while I walked the dog on the days after his death.  And most strangely, I have no memory of those flowers from last year.  
The buds have formed now.  They grow and they will swell in the next few weeks.  And they will bloom and fill the air with their sweet smell.  And I will remember this year.  I will remember how beautiful, how sad, how awful, and how glorious a lily can be.  I will take note of the kind and color of those flowers and next year, or the year after I will plant my own.

I told this about the lilies to Marilyn.  Triggers that can come back year in and year out.  And then she compared it to what kids who have suffered trauma go though when their greatest fears or anger or pain is triggered and they (and their family) has no idea why.  Behavior the seems to come out of no where, but did a parent give them a doll, a bowl of rice, a new pair of shoes just before abandoning them?  And no one -- not the child who was too young or too scared to remember -- and not the forever parents -- who were given such scant information about the child that they have no idea of their experiences before they met -- have any idea of why.  That hearts heal is a miracle when pain is so deep.

13 June 2012

dancing in the garden

These are such ordinary shots of a kid dancing around, but fooling around in a dancing sort of way is new for Julia.  I wonder if having the courage to dance with her classmates triggered a release.  She is also choosing to use the wii to play Just Dance for Kids as a reward after a therapy session.   Whatever it is, Julia is enjoying moving more.  She starts a week-long bike camp next week.  I hope that this desire to use her body in new ways carries over.

The dress she is wearing is a hand me down from Cheshire.  I've only kept a few favorites -- more favorites of mine than of hers.  At least, I think so.  Julia slides into it easily and it is so much like her.

We are still battling a sinus infection.  I took her to another doc visit yesterday and the doc prescribed a change in antibiotic.  The cough and runny nose is not a good way to start summer.  It is not warm enough to swim these days but I would have a hard time letting her swim right now.  Her spirits are not dimmed but she gets tired too quickly and sleeps too hard not to notice.

Written late on the 12th.

I stayed up way too late Monday night and then could not sleep more than 2 hours.  I was too excited about finally pulling Julia’s summer academic program together.  I’ve been looking through the ideas and exercises that her teachers sent home.  I’ve been doing my own reading, and thinking about what I see Julia doing.  But until last night it was a pile of suggestions with no real direction for the therapists.  And, suddenly all came together.  I wrote out eight exercises -- two for the reading side of her work and six for math.  For reading, she will be reading chapters in easy chapter books, answering questions, and drawing and writing in her summer reading journal.  She will also get 12 spelling words a week and go through four activities and a spelling test.
For math, exercise three reviews “first” and “last” using a 1-100 number  board.  Exercise four is reviewing “more” and “less”, and eventually “most” and “least” again, using the number board. I am trying to link “more” with addition, and moving Julia to being able to add by starting on the first number.  (If that makes sense). Exercises five and six are about subitizing numbers 6-10 using flash card with dots and a matching game.  Exercising seven is doing some addition facts, half of which are the targeted facts that she is working on in the computer program Reflex Math.  Finally, exercise eight, is a simple chart where Julia will record the reward minutes that she earns each therapist session.  After any two sessions, she can be asked when she earned “more” and “less.”  After three sessions, she can be asked about “most” and “least.”
Last night, in a fury, I wrote up each exercise in detail, made charts and graphs and flash cards.  I am so happy that it gelled before the final school bell.
I had done this sort of thing before Julia was doing intensive therapy.  I was thinking this morning that I gave up being director of Julia’s education when our therapy team came in, but there were two good reasons for that.  First, Julia did a lot of behavior work with her therapists for the first year or so.  Coloring and putting together puzzles according to a schedule were as close to school work as they got.  And sometimes it wasn’t too close at all.  Second, David died during our second summer of therapy and I did give up trying to steer Julia’s summer education.  I look back to two years ago, and I see that I was making plans and putting a few things together when David was re-hospitalized.  I did a few things last summer but I still wasn’t ready to take over again.  It feels very good to be back!
Our first book is Judy Moody who is in a terrible, bad mood and is very grumpy to her teacher and her brother.  It is a perfect book to start the summer with because we had a bit of grumpy, bad moods here today.   I put a sticky note with a question on each page for her to answer to help with comprehension.  I see that she is now looking at the question before she reads the page to make sure that she gets the answer.  I’ll have to be a bit more tricky but good to see that she is figuring out the system.
It has been a really lovely day today -- cool and perfect for gardening.  (Right, Mary?)  And I was stuck with my foot in the air because I overdid it yesterday.  I was not trekking or digging out garden beds, but sitting at a table with my foot on the floor.  And it hurt last night, and today I am not as comfortable.  So, I sat myself down again.  I am healing, it is all getting better.  I just need patience.
Tomorrow, Julia should be finished with her antibiotic but she is still not well.  Her cough is congested sounding and her nose runs with white goopy stuff.  So, is it viral?  I will call the doc tomorrow.  I had hoped to be rid of it by this time.  Julia is not as tired as she was last week, but she is not back to herself.
Tomorrow, I interview at Waisman for LEND.  

All singin', all dancin'

Before I write anything, I have to post this video.  Taken with my iPhone, this is my best video job ever.  Ever!  For the spring concert this year, Julia stood with her class and played her recorded.  For the school talent show, Julia sang and danced with her class!  
I was so happy to see her sitting with her class before the song without a teacher or aid.  She started doing the movements with her class and got up and moved to the stage when she was supposed.  I know that two of the girls closest to her were helping her out but trusting peers to help is pretty impressive too.  I know that she had a slow start learning the dance with her class.  Deb, her special ed teacher had some concerns that Julia was unwilling to get up and try dancing.  We were thinking of making a video of a practice and have Julia practice at home -- I think that Julia has a hard time watch and copying movement that she sees as too fast -- but before Deb had a chance to make a video, Julia was dancing.  
These are of Julia’s class waiting to begin.
 Julia has spotted me in the crowd. If all she had done was sit with her class without help, that would have been enough.  Dianu.

Julia is on the far left when the video starts.  When she gets up to go on stage she winds up in the third row and there are only glimpses of her now and then, but each glimpse is precious!  Ok, none of these kids is going to use this video to apply to a high school of the performing arts.  

Big problem.  I can't get the video to load.  I need some expert advice~~

12 June 2012

Last day of school

Getting on the bus at 7:00 a.m.
Ok, has to check out bugs before the bus pulled up.
 Getting off the bus at 9:50 a.m. and with another bag full of stuff from her locker.  This is the third bag of stuff!  Where did they put it all??
 And this picture is blurry, but look, Julia is looking right at me as she gets off the bus.  And right after I snapped the picture, she gave me a big smile and was happy to be home.

10 June 2012

We began Julia’s Summer Reading Journal last Thursday.  She was home sick but she was also a little bored, so why not?  Relatively the same format as last year but this year she is reading easy chapter books.  We started with Judy Moody.  Chapters are about 10 pages and there are a few pictures.  I prepare the chapter with sticky notes with questions to be answered a the end of most pages.  She will have help with the reading and questions from either me or her therapists although it is not hard to imagine her reading to herself and answering the questions.  When she finishes the chapter, she draws a pictures in the journal about the chapter and writes a sentence.  She checks on the spelling in the book and in the questions as she writes.  Big change, or a potential big change -- Julia is drawing pictures of the real characters and not their dinosaur counterparts.  Also, she decorated the cover of the book and it has cats, dogs, sun, sky, and grass.  No dinosaurs.  I am sure dinosaurs will make an appearance but this is an interesting beginning.  
Muta is finally able to join us for most of our day.  He was such a fierce little one last week when we brought him home, that I couldn’t let him alone with the dog.  I kept them separated for a few days, gradually exposing them to each other.  Muta stopped arching his back and hissing at Latkah, Latkah stopped barking, and the last two days have been hot and possibly it has not been worth it to fight.  Right now, they are both napping in the same room.  I feel highly successful introducing this new family member.  

09 June 2012

A few weeks ago, just before foot surgery, I asked Ellen about my lack of interest in writing.  It did not worry or scare me, but change never fails to arouse my attention.  She  said that I might be needing some break and when I was able to work in my garden again, I would begin writing again.  This morning, I spent about 45 minutes deadheading and cutting back dead blooms.  Not strenuous or creative but out with my plants.  I feel no rush of inspiration, but it did feel mighty good to be editing my garden beds. 

08 June 2012

I read that without a clear image of what it is that you want, where you are headed, there is little chance of getting there and doing what you want.  So, ask and you will receive, but ya’ gotta’ know what to ask for.  You need to ask!  You need to know.  At the same time, asking doesn’t mean living in the future where the asked for is received, or in the past where the request may have come from.  Present in the present.  This is what has been jangling around in my head for a few days.  Sometime it is perfectly clear, sometimes it is utterly confusing.
Julia is sick.  Sicker than she has ever been.  It started as a cold three weeks ago, then relented some and then last weekend it became worse again.  I kept her home from school on Wednesday and saw the doc.  He guessed a sinus -- guessed because her sinuses were not painful at all -- and started her on antibiotics.  By Thursday, her sinuses were painful and she complained of a headache.  By Thursday late morning, she seemed to be feeling better and there was an activity at school related to the school talent show that Julia didn’t want to miss.  She swore that she was feeling better and so we packed up a lunch and I drove her to school.  She really did seem like she was okay.   I left, she went into the lunch room and opened her lunch, and put her head on the table and said she was too tired to eat.  I got the call less than two miles from the school and turned the car around and headed back.  I think she may have had the shortest school day on record!  
It was a bit embarrassing picking her up -- bad mother!  Can’t even tell when her kid is really sick.  She came home and took a two-hour nap, and was pretty slow for the rest of the evening, AND went to bed on time.  Yes, Julia is sick.  Actually, I kept her home on Thursday because during our strong sitting, she was perfectly still.  Meditating in perfect stillness -- yea, the aim, but never the practice around here.  She was really too still to get on the school bus.
It is now after 9 in the morning on Friday and she is not up yet.  Yes, she is sick.  Hopefully, a quiet weekend and drugs will get her better.  
The shame of it is that school ends next Tuesday and these last days are all about partying and fun!  Today, there is a picnic/field trip and the class will be outside exploring all day.  These are also her first sick days this year.  
On the positive side, Julia being stuck at home, slows me down.  I have been over-extending my moving about at the beginning of the week, but with Julia sick, I hang out with her, reading while she sleeps and watching movies when she is awake.  We are slowly cleaning the play room, to ready it for the summer.  Something that I would have done in a day or so myself is taking three or four days.  Julia hates when I throw anything away -- used notebooks, filled workbooks, little reading books that she brought from school a year ago.  Some of it I have to let her save -- how do you stop a kid from saving books no matter their future use or value?  Reorganizing is always good for finding lost treasures.
We also took down everything decorating the walls in that room with the idea of putting up new stuff.  Julia has been coloring this year and drawing in notebooks so there is not much to put up these days.  I love decorating that room with Julia’s work and themes of our work.  We have to talk about what will go on the walls this summer.  Maybe we need a trip to the craft store and/or the dollar store for ideas.  
Looking  back to 2010, which I have been doing lately, finally able to read what I wrote in the days leading up to David’s death, it is amazing how far Julia has come.  I was still writing about Julia memorizing Dr. Suess books and just about two years ago, I wrote that Julia used a number in casual conversation for the first time.  This summer we will be reading simple chapter books and working on addition/subtraction facts.  I didn’t even know that we would get this far.  We will also be doing more work on time, money, and learning her address and phone number.  There are plans to work on a map of our neighborhood -- and that may be something to use as a decorating theme.  Julia wants to take pictures.  I have an old point and shoot, and her ipad will also be able to take pictures.  Maybe, maybe!!
We had a potentially busy day yesterday that was cancelled, and today, I was supposed to interview at Waisman.  I’ve wanted that interview and I was sure that I wouldn’t get it.  When it came through on Tuesday, I was guardedly excited.  I hated canceling but everyone that I know -- yes, everyone! -- is busy today.  After calling a few people and brainstorming with Amy, I decided resolutely to reschedule the interview.  I also decided last night, to surrender all apprehensive feelings about my project being rejected.  There  it is, living in the past and future and ignoring the present!  I am going to get to talk to these wonderful experts about figuring out how I fit into the world of scientists, teachers, and therapists.  Mary said this to me -- I get to talk to all these smart people!  And I do!  Whether my project gets accepted or not, I will learn something by just talking.  When I interviewed at Wiasman in 2010, it was weeks after the heart transplant.  David was recovering and life was looking very sweet indeed.  The LEND program felt like a desert after a big meal, and although I was highly stressed, I think I was jubilant during my interview.  During the year that I did LEND, the work became a lifeline that held me together.  In one sense, I have no idea how I appeared during that year.  I know that I was more open and ready to share my experience with Julia and more willing to share my opinion about almost anything.  I did not have to talk about David, heart transplants, death and grieving there.  When asked, I told people about David but I didn’t share much about my dark days.  I needed the Waisman Center and LEND to be a refuge.  I am in another place now, I am grateful and excited to be able to share my ideas.  I would like that community to become my work community -- or at least train me to have a similar work community.  It is a lot to ask -- to learn and work in a place and with people with whom I do not belong by any conventional standard apart from my passion.  Is passion a qualifier?  Oh, I hope so.  
And so, back to the beginning.  Knowing what I want and living in the present.  
First though, a few weeks back -- maybe two -- when I was sure that I would be getting a form rejection from Waisman (of course, that is still a possibility) and I moaned about what my next step would be, I was able to let the Waisman project go.  I consigned it to the universe.  I left it in the hands of god.  I let the door close and waited for the windows to open.  I doubted that anything would happen but it only took days for other opportunities to appear -- working with the Autism Society, a school project about bullying, a short course on yoga for kids on the spectrum, and a note from someone doing mindfulness training.  So, i know that the universe doesn’t revolve around me, but it was like something bigger storming me with comfort, possibilities and comfort.  I felt truly blessed.  Had I not been able to let go of the potential rejection, had I dug myself in on the idea that Waisman was the only option that I wanted, would I have recognized the blessings.  Really, I think not.  For moments, I was able to live as I want -- alive and in the present.  Oh, to have the right stuff to live that way every day! 
Now, I am almost written out, and I didn’t muse directly about asking for what I want or living in the present.  I woke up a few nights ago and wrote: I want to live with Lisa and do something with her.  I want to also have a bedroom in Cheshire’s apartment to use one week a month.  Now, I look at these two statements and wonder.  “do something”?  “a room in Cheshire’s apartment”? “a week a month”?  I know when I wrote this down, my idea was very clear, and now, I cannot capture the idea.  What was I thinking about?
A commenter wrote that she was able to understand her widowed mother’s desire for a new relationship, in part, because of what I had written.  I would have written this next bit after the comment but I never know whether anyone checks back to comments to see if I replied.  It was so sweet to read those words.  Thank you.  I had so little understanding of the widow’s experience before David died that I am almost ashamed of myself.  But I had no way of wrapping my head around the pain that grieving brings.  How to imagine the impossible before it happens.  How to imagine the emptiness that rents the soul after a good relationship ends.  Again, thank you.
I’ve been writing this all day.  It is after supper now - early meal of rice noodles, sesame dressing and raw vegetables.  There are cookies -- home made frozen dough balls from the freezer -- in the toaster oven.  Julia is reading a Judy Moody book.  She answers the  comprehension questions I put at the bottom of each page on little sticky notes (reading teacher advice).  She starts her summer reading journal tonight with a picture and sentence about the chapter.  Then we will walk the dog and eat our cookies while we watch Ponyo.  Sick as she is, I take such pleasure in having Julia to myself.  I take pleasure in this slow, sweet day.  Next week will be time enough for diving into the fray.

06 June 2012

Here we are all pointing in the same direction.  Nature, nurture, or the way I hold the camera?  Does this meet my yearly goal of posting pictures my myself here?  Oh, my girls are beautiful.
We picked Muta out on Saturday and returned on Sunday to take him home.  Considering how slowly I am still getting around, this was an excellent plan.  By Sunday morning, Julia was super-excited to bring the cat home.  She had to wait until after morning therapy and a trip to the grocery before we headed to the Humane Society.

Muta, also known as Daniel, was waiting for us.  I did what seemed like a lot of paper work before the Humane Society released him to us.  As I was signing and waiting and paying fees, I couldn't help but think that Muta's file was so much better and more accurate than Julia's had been.  Why can't we be "humane" to humans?

The kitten mewed on the way home but I wouldn't let Julia take him out of the carrying case.

Once at home, Muta proved he could live up to his name.  When Latkah came over to sniff and check him out, Muta hissed and arched his back.  He tired to swipe at the dog.  And so, for the moment, Muta is living on the back porch and Latkah is in the house and not allowed on the back porch.  Lots of love and treats are being distributed and we are hoping that good family relations will commence soon.

Latkah is none too happy about being on the inside looking out, but I am trying to avoid hissing, barking, grand chases, and general bad behavior from the pets.  

03 June 2012

Foot is better but still on the couch for a few hours each day to reduce swelling.  At three weeks after surgery, I can tool around a little in the house, get from the back door to the car, and feel comfortable in the shower with a crutch.  I can scoot four or five blocks.  And tonight for the first time in three weeks, I willingly go downstairs again after I put Julia to bed.  I go downstairs to get my ice pack that I am still using even though I am beginning to see the veins in at least a part of my foot.  The toes are skinnier sausages and there is a bit of throbbing when I tool around a bit too much, but it is improving.  I am thinking that this is the last “renovation” for a good long time.  For the past year, and yes it is almost exactly a year, when renovations started, and just a bit more when the grand clean-out of the basement started.  For the last year, there has been something going on that prevented the ability to do little things, hang a picture, sew a curtain.  There has been some bit something that has not permitted me to settle into, nestle down deep, into this reconfigured house.  I think my foot is the last of the renovation.
Ordered Julia’s Ipad today.  I want her to pick out the color of the Otterbox case.  Strong case and insurance, I am trying to guarantee long use.  She is still going very strong on the reflex math.  Last week, she told someone at school that her favorite thing to do in school is math.  Amazing, and I do believe her, but she is still really awful at it. Still, I cannot help but believe that she prevail.  Not too long ago, when I spoke with Ellen, I asked Julia’s spirit guides, through Ellen, if we should concentrate on survival math, teach her to use a calculator and not expect her to understand or learn much theory.  Her guides said, no!  No, Julia should keep at the math, that she has a math aptitude.  I tell you that one is hard to believe, given how long it has taken to get to very simple addition, but I am willing to keep it going.  
Tomorrow will be time to organize the study and get Julia’s programming together.  I have math ideas to organize and reading comprehension to lay out.  I will put together a few folders for the therapists, and decide what I will work on with her.  We will go back to book journaling but because she is into beginning chapter books and because she is writing more, the journal will look different.   I am hoping to find an app for calendaring that can merge with my calendar and be a bit of fun for Julia.  I have a conversation app that looks very good, and a picture based scheduler.  Still looking for something to reinforce and learn more about time telling and money counting.  I am hoping that i can find as many game based apps as I can, and that Julia will want to do these  activities on our road trips instead of using her leapster.  The leapster has been great, but it is time to move on.
We picked up out kitten today after finding him yesterday at the humane society.  Another orange which both of us seem to want.  I’ve been looking on Craig’s list but for some reason it never worked out.  Yesterday, we went to a Friends of Ferrals adoption fair and finding nothing, went to a humane society adoption site which was close by.  There waiting for us were four orange kitten who were 10 weeks old.  Abandoned at two weeks they have been fostered, fixed, vaccinated, and chipped.  Chipping sounds very good to me after losing Didi Chi.  Don’t want this one walking away from us.  We will also buy a collar today and get it on him as soon as he gets home -- not that I am going to let him out, but not going to run the risk of a cat not wanting to wear a collar again.
We are thinking of naming him Muta.  Muta is a big, fat, warrior cat from Miazaki’s The Cat Returns.  The woman at the humane society said that orange cats tend to be very big cats and so, Muta may be perfect.  Plus, Julia enjoys putting sounds together when she names toys and Muta sounds like one of her names.  And it is so cat-like.
I am listening to Joyce Carol Oates’ A Widow’s Story: A Memoir.  Another writer losing a spouse.  I am somewhat jealous, like I was with Joan Diddion, both women had so many more years with their partners than I did, both women were so much older than I am.  And Joyce was engaged to be remarried to a long time friend within 11 months of her first husband’s death.  Some critics were more than unkind about this “betrayal” as Oates did not mention her forthcoming marriage at the end of her book, but I have a more-power-to-you,-girl feeling.  I wish I had an old friend like that who was free and wanted to partner me.  Both women were also successful writers and skinny, neither of which is really part of my jealousy but had to throw that in since these are my conventional envies.  
Apart from my jealousy and our so many obvious differences, the feelings described, the days lived through, the depth of hell descended to are all too familiar.  And that Oates and her first husband met in Madison, and much later lived outside of Princeton relatively close to where Lisa’ s family home was located makes so many scenes described more like something a friend told me rather than a great writer’s memoir.  When Oates talks about turning onto a specific road that I know well, I felt a rush of familiarity that I do not deserve.  Like Didion, whose style is completely different, the description of near madness, irrational thinking, deals with the universe, very magical thinking, and punch-in-the-gut pain speaks directly to me.  As if I can only recognize my journey as real, human, and rather ordinary if I read that someone else went through the same things.  And two thoughts on this -- I can hear my mother’s voice telling me how I made a mountain out of a mole hill.  I need descriptions of other grief journeys to prove to myself that my grief is within the normal boundaries.  I need to make sure that this was my mountain.  And it was.  It is.
Second, it is just comforting not to be unique.  It is not hurt less, but there is some comfort.  In so many other situations, when someone tells of their similar circumstances now or in the past, there is a comfort that warms a heart, something to be indulged in together.  These memoirs are comforting but if there was a way to undo, walk away from, and deny the journey, I would be doing it with gusto.  But I listen, with attention, sometimes with tears in my eyes from intimate understanding -- yes, I was right there.  I lived but I was as broken as she describes.  And perhaps, I read for the assurance that this is another widow who survived, who thought she could not live without her partner, who thought that she was nothing she could do without him, but survived and found some life afterwards.  It is a small crutch for me.  Another small hero.
I was almost amused to hear her talk about people who suggest or state that they are sure that the widow will do as her dead partner wanted.  Some suggest that they know what the dead partner wanted.  Those are such foolish people!  For the last two years, the hair on my back has risen stiffly with such suggestions.  I was usually too timid, possibly afraid of ruining David’s image to those people, to say something caustic in reply, but I thought it.  And not a one of them was right,  David would have never wanted me to act as those people said.  
People say very stupid things to widows.
Oates also talks about now knowing her husband in some ways, and that thought echoes in my head.  Partners know and don’t know.  Intimates cannot climb behind that eyes of the beloved, and there is always a part of the self that is unknowable.  I have wrestled with this as I went through David’s papers.  I kept thinking of questions that I never asked, I kept thinking of comments I never made, explanations that I never demanded, even dreams that I did not know, or drafts of writings that I did not beg to read.  Oh, I knew a lot.  We talked a lot, but never enough.  I did not know David completely because I always assumed that there was time to discover more.  Maybe that is something about such a love -- that there continued to be more that the lover wants to know, that the relationship keeps inventing the partners over and over.  And therein is the tragedy of death, the learning, the inventing, the questions have to stop.