FanCon Boston 2021

Julia has waited for two years to go to a big “Con.” We could have gone in 2019 but it was right after we moved and I couldn’t manage it. That Christmas, she wanted costumes and wigs to get ready for 2020. But like everything else the 2020 FanCon was cancelled. The 2021 FanCon was moved back and last weekend it happened. I think it was not as big as it has been; however, Julia had a wonderful time. We had 3-day tickets and she and I went each day. Julia’s wonderful therapist accompanied us on Friday evening, and Cheshire was with us on Saturday and Sunday. Masking made it a bit weird. I mean, in a superhero costume with wig and mask, I could have walked right past anyone!

Julia went dressed on Friday and Saturday as a female Deku cheer leader for UA, the Japanese high school that develops heros. In the animation, Deku is male; however, lots of young women like to become a female version of him. On Sunday, she dressed as a blue haired student at UA which may be her own character.

So, a few pictures.

Continue reading

maine

I keep my journaling in files month-by-month.  It is not as satisfying as the various soft covered writing books that I wrote in and then lined up on book shelves but far more practical and convenient.  I still carry a small paper journal but it is for quick jottings that, if I am still interested in hours later, I transcribe to this screen.  Where I was once meticulous to finish each journal before moving on to a new one, I am likewise meticulous about keep each month’s scribblings in its own computer file.  And so, it is odd for me to still be writing in the August 2021 file on September 3.  I know the intent yesterday was consolidate what I had written during our days in Maine and to publish something with the Maine photos, but I could not concentrate on a vacation summary.  Descriptions of charming towns and water and sky slipping away into explanations, systems of ideas explaining our present reality.  Trying to make sense of my own present “where.”

Continue reading

onions

We love to use the shopping bags we’ve acquired from friends. This one is from cousin Stef in Sydney. We are thinking of all our Ausie cousins who are, for the moment, on lock down. Sending love to all of you!

Home and with not much to do for this weekend.  We expect a storm tomorrow and the governor advised all to stay home tomorrow.  I am still not used to hurricanes, their warnings and their fierce rains even though I grew up with them.  The first one I remember was Hurricane Donna in 1960.  I remember weather men breaking into my favorite tv shows  and my parents shushing us to listen.  And I remember picking up tree branches after it was all over. I remember tv news and pictures of places where homes and businesses were destroyed, and some cars floating down flooded streets.  I think it may have been when I realized that humans, particularly my parents, didn’t control everything.

Julia asked if she could take some time to draw this morning, and she is still at it 2 hours later.  This is the third day in a row that she has asked for the time. Cautiously, I wonder if going back to therapies that we’ve used before is giving her something.

Back a few months, I wondered out loud to our family therapist what kinds of therapies and interventions were appropriate, helpful and useful to Julia now.  Therapies and exercises always call for me to organize and facilitate.  When I wondered out loud, I felt tired and feeling like nothing that I had done for the past two years had done much good.   When I told her last week about things I was bringing back and things I was exploring, she reminded me that I had asked the question and evidently had come to an answer.  

Continue reading

staycationing

Friday was the last day of Camp Echo Bridge.  Julia has only been at this city day camp for two weeks and I think it has been the best part of her summer.  It is an genuinely inclusive experience for her.  A very healthy mix of typical and kids with disabilities in the younger groups.  Julia’s group—the tigers, clearly a name that was made up by some of the boys—was young people 14+ with disabilities; however, it is a smallish camp and the entire camp does some things together.  The staff is careful and caring but most of all enthusiastic.  

One glitch:  One swim day Julia got bored sitting in the grass reading—she didn’t want to go into the water—and she decided to walk from the lake to the school where the camp meets.  She didn’t tell anyone she was doing it and when counselors realized she wasn’t there, I hear there was 10 minutes of panic.  I can count on one hand, this time included, the times Julia has wandered off from anything.  Staff handled it all well and low keyed.  Julia apologized and they asked her not to do it again.  I think she was also scared when she didn’t really know how to get back to the school.  

On Friday, in the sweltering humid, sunny heat, there was a camp show. Each group did something like a skit (or told jokes) and danced to a pop song.  No pressure to perform. Julia was willing to be “on stage” with her group but not willing to stand to dance.  And so, she sat while others danced.  Later, when the whole camp was “on stage”—two poles with a sheet stretched between them on part of the paved school yard—she did dance.  And she loved it. 

Continue reading

view from a different mountain

So many Facebook posts about dropping offspring at college.  Parents wondering about how very responsible children will live with strangers, pick courses and move around unfamiliar campuses, and how they will deal with empty nests.  Parents crying as they drive away. Had Facebook been available back when Cheshire was college aged, I may have said the same.  Now, I look from such a different view.  I want to hug them all and tell them—Celebrate! You are unbearably lucky!  You are so blessed!  You can see what your parenting has produced.  Your child is excited or at least willing to learn and be taught, to plunge into an interest, to make friends, to take on adventure of a new place, new people, a whole new culture.  And you can support them—financially and emotionally— in this journey.  You will certainly miss them but this, this very thing, is what you’ve trained them and yourself for.  

You are living in the best of times.

heat wave

Vegetable gardening.

A 3-day heat wave was predicted.  It might last longer.  It will not break sooner.  We missed the first heat wave here and lived it in Maryland where our nights were air conditioned.  Then, there were a few hot days about a month ago and our air conditioners were still in the basement.  I could not bring them up alone and I have not yet found a handy person like my Ed of Madison who knew my house better than I did.  Of course, this is not my house, except for the term of my lease, and my handy person tasks are few.

Cheshire and Justin brought one unit from by basement at the end of last week, just in time for yesterday.  And I did what I have done since I moved to Wisconsin and met the cold:  I closed up the house, windows closed, blinds and shades down, doors to rooms not used closed tight.  And left the air conditioner on through out the night.  This is so odd for me, I sleep with open windows, but the house is cool, even the bedrooms are tolerable.

Good, hardworking little machine.  Thank you.  And thank you for the grace of children who will do those tasks I am unable to. 

Continue reading

china sisters

Traveling again!

It  is telling that after two years I only noticed on Friday morning at 4:30 a.m. that my street has no street lights.  We are catching a 6 a.m. plane Boston to Philly and then a later plane to Dayton, Ohio.  It was China Sisters Reunion weekend.  A Facebook post announced that this is the 16th reunion if our trip to China is included.

Ah, a trip to China.  I am still marveling that Julia and I have not gotten on a plane for more than 2 years.  How is that so?  

And yet, we were picked up and dropped off at Logan and entered into the swarm of early morning travelers.  The check in lines and kiosks buzzed with people.  People everywhere!  Carrying and pulling, asking questions and commenting excitedly, making people noises that made something of a soundtrack as we made our way to the departure gate.  I remember but I am hearing it all for the first time.  Like riding a bicycle, we quickly adapted to the old routines—printing boarding passes, finding security, getting into the TSA line, showing identification and pulling down each of our masks for a moment to make sure that the picture on the ID matched the person carrying the ticket.  Julia asked if she had to take off her shoes and we both forgot to take our phones out of jacket pockets. 

Continue reading

summer profile

Facebook  memories pop up:  3 years ago today, we were at Coogee Beach in Australia; 4 years ago we were cruising in Alaska; 5 years ago we were in the lovely town of Orta San Giulio in Italy and 6 years ago, we were with Julia’s China Sisters in Ohio.  We are going to Ohio tomorrow and I hope for some fun.  But today I gather my thoughts to write where Julia is these days and ask for help.

This morning I arrived at sudden clarity after months of confusion and muddle, and maybe a little hope that some of my greatest concerns could work themselves out. Nothing has worked out “by itself.” There are no answers this morning, but I can see where we are with Julia’s life, the little that is going well and all the rest.  

This was excruciating to write; however, necessary.  The four weeks of ESY (Extended School Year) have not gone well.  Every week Julia has had some days of refusing to do the work of the day, threatening self-harm at school and having rough mornings or evenings at home. Nothing I have done at home in previous years is working.  Before the school year and the new transition program begins, I need to work out some things that help  Julia.  She is NOT going to blend in and get adjusted by herself.  She is NOT going to transition without effort.  She is still on high alert and on the brink of meltdown every day.  She is as hypervigilent and affected by trauma as she was 12 years ago. 

Continue reading

traveling

Lily Pond at Longwood Gardens

We are home and . . . .

We left on Friday, early in the day.  There was the threat of rain but there was also Longwood Gardens, one of my favorite places in the entire world, a bit more than an hour north.  On the way home.  Almost.  It never rained but it was cloudy and clammy.  Julia complained, but I was not to be dissuaded from indulging in the garden.  We did some walking, less than I would have liked, more than Julia wanted.  Compromise!  Beds of color do not impress her, but the water fountain with musical accompaniment was pretty thrilling.  Best of all was when I found the plant that is her favorite.  I almost didn’t find it.  It was in the very last exhibit, behind the green house, in a corner of the water lily ponds.  Mimosa pudica, also called the sensitive plant.  The tiny ground hugging plant with leaves that fold at the slightest touch is of never ending fascination to Julia.  And she was thrilled we found it.

Continue reading

miracles & lessons

Our set on a cloudless evening

Emergence.  I’m reading Rev. Kimberlee Tomczak Carlson’s blog post on the topic.  As well as her wise words, there is a quote from Ursula Goodenough, scientist and religious naturalist:

“[T]ales of natural emergence [are] far more magical than traditional miracles. Emergence is inherent in everything that is alive, allowing our yearning for supernatural miracles to be subsumed by our joy in the countless miracles that surround us.”

To both of them, I respond: I didn’t know that emergence could be such a thing.  As attached as I am to the metaphor of chrysalis with all its possibilities of gooeyness and dissolving, I have given very little thought to emergence.  Yes, I know there is, or hopefully will be, a butterfly at the end of metamorphosis but Carlson shines light on the miracle of emergence, the process of claiming change.  She says:

[W]e forget how miraculous we are. The sheer improbability of our existence escapes us, and we need butterfly garden-shaped reminders. Thank goodness there are small miracles surrounding us.”

Continue reading