work arounds

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9E740784-01C3-4054-855F-C8FE90F2BD80Last Thursday: This moving to a different state thing with someone with a disability is not for the faint of heart.  And today I am feeling pretty heart faint.  Enough so, to let go of more of what I had planned to accomplish before leaving.  Specifically, health insurance.

Explanation:  Julia will qualify for a MassHealth program.  Eventually.  My goal has been a seamless transition—leave Forward Health, WI Medicaid, on June 30; begin MassHealth on July 1.  This will not happen. (Ok, I was the most naive, cockeyed optimist ever!)  And so, I am left with “eventually.” Information I’ve gleaned from various sources (all state employees or expert advisory staff) has been cripplingly conflicting.  Ex: At 18, she can apply for MassHealth as a single adult.  At 18, I have to apply for MassHealth and ask to have her covered as my child. (I don’t qualify for MassHealth.). Another example: In January, Health Care For All  told me I could apply for Julia’s coverage when I had a lease.  Last week, the same helpline said, I cannot submit any application until we were in MA.  I’ve stopped sputtering my buts—‘but last time I called. . . . ,’ and ‘but the website says. . . ‘ —but I was defeated.   Continue reading

long weekend notes

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Weekend notes. Art, pictures, mirrors and empty frames are off the walls.  It is sooner than I expected but it was what presented itself for today when it started out cloudy, dark and wet.  After two boxes of art/pictures (with another two to go), I am finished for today because there is sun and a chance to sit on our deck and tap on keys.  We have not had anytime outside in this lovely space this spring.  Granted, there may have been a few appropriate days that we missed.  Trees have fully leafed out, the grass is extraordinarily green, the peonies are poised to burst with just a few more days of sun and a million ants, and the lily of the valley . . . another one of my favorites . . . blooms!  Thankfully, a friend brought by cuttings from her flower garden last week and I kept the vase—all of mine are packed.  I have what I need for lily of the valley to come inside.   Continue reading

bullet points of now

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So much moving, nothing stops time, nothing stops emotion ebbing and flowing. There are lessons of impermanence around every corner.

The bullet points of the now:

-We have a place to live!  Last Thursday, Cheshire and I saw the first floor of an owner occupied 2-family victorian house, 3-bedrooms, good kitchen, laundry hook-ups in basement, off street although not garage parking and relatively close to stores and restaurants and pretty.  I made application on Friday, was rushed along when another prospective renter expressed interest, the RE agent called me (in Indianapolis, thank goodness, we don’t need land lines anymore) and broke the good news.  Lease signing, check sending, other document signing was a stuttering flurry over the next few days.  I think I can safely say that we have a place to live in Newtonville. Continue reading

making application

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Yesterday, the sun rose although we needed the bathroom light to brush teeth close to 7:00 o’clock.  Two hours later, there was dim light in the distance to the north and all else was dark. We had wind and shaken new leaves falling.  Storm.  Thunder rolled in.  I sat with legs over the arm of my leather overstuffed chair, a pillow at my back so very aware of the moment and its passing.  Six weeks minus one day.  Are Madison storms  different from the storms on the east coast?  I think so although I don’t remember how.  I remember our first Indiana thunder storms — fierce and furious.  Storm drains filling so quickly and rushing so fast.  Cheshire in First Grade in the south of town and us stuck midtown Bloomington.  No cell phones then (except on tv), all we could do was wait. I don’t remember what storms were like in NYC or Jersey.  Or Boston for that matter.

I will make comparisons.

With renewed vigor, curious about what we could find, Cheshire visited 4 apartment yesterday after her work day.  The last place she saw in the north of Newton, is the first floor of an owner occupied two-family, heavily wood-worked, excellent stove, 3-bedroom house.  The fireplace may work and there is a place for our desks and Julia’s art supplies.  I am making application.  Perhaps we have found the new home.  The school—it is Newton North—I will do some writing to PTB in the next month and then much more when we arrive.  Perhaps that beautiful building will serve Julia well, if not, I will ask for transfer to South.  Yes, more questions that I am trying to love.

moving van in 6 weeks from today

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“No, no, there is no going back.
Less and less you are
that possibility you were.:

Wendell Berry’s words are in my bones. Indeed!  I have done this before —picking up my stuff, going someplace else, starting again, but never before have I so observed the process.  Never before was there so many balls being juggled with the hope that I can catch them all when gravity kicks in.  Never before has it been so bittersweet and hard.  I bleed bit by bit from Madison every day.  

I am almost the tiny man in a midair jump in the tiny painting that I have on my bedside.  There is no guarantee that he was land on solid ground.  I am not yet in the air but I am no longer on solid and familiar ground either.   Continue reading

night to remember

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Night to Remember is a prom-like experience designed to celebrate kids, teens and adults with special needs. Participation is completely free of charge, and includes dresses, tuxedos, make-up, hairstyling, jewelry, corsages and boutonnières, limo rides, a walk down the carpet with a cheering crowd, photography, a gift bag, snacks and a night of dancing!  It truly is a night to remember!”

It takes awhile to get ready at home, including a quick dye of her lightened hair to  match her dress.  Then I insisted on the tradition mom pictures at home.

Continue reading

on sunday

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Muta, the cat, wants to sit on my chest as I type.  He wants to lick my fingers and get closer.  He purrs very loudly.  I’ve put him down twice.  There is little time for reflection right now and I should not let this go.  Still, is it Muta who really knows what I need?

Yesterday, I drove to the burbs of Chicago to see Julia’s Optometrist and Cognitive Therapist.  Dr. Z’s staff did a batch of eye tests with something akin to computer games, replacing some of the more traditional looking testings. Using a computer allows for a record of the tracings of Julia’s eye movements as she reads or follows directions like looking reft to right as quickly as she was able. The results are startling. I wish I could compare it to my own eye movement tracings to Julia’s.  Of course, just seeing Julia’s results and having them explained are enlightening.   The testing provide some of the why’s of Julia’s challenges.   Continue reading

liminality

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a3288989-70cb-4510-a4d7-ae7eed0af2a6.jpegAnother liminal stage of this unexpected life.  Ah, nothing like a perfect word.  (Thank you, Anne, for giving it to me.)

First note, when we moved to Madison twelve years ago, it was to be our permanent home.  David and I had given up an east coast replant and saw Madison as the just about perfect midwest place to be for-almost-ever.  Okay, there were the winters (100 inches of snow our first winter here) but other than that, it has been pretty perfect place for the three of us.  Continue reading

just today’s scribbles

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So much change, so fast, none of it bad but all of it pushing over the edges of comfort.  I start and scribble and then leave it.  And then, change again, making what I scribbled about before irrelevant.  Compassion, especially for myself, is my current practice.  I need to go to the gym, pamper myself some, we need to go to the movies and indulge in ice cream.  I can understand Julia’s ups and downs; I need to understand my own.  

Julia, by the way, has good and bad days, needs to check every day that we are taking all of her books and stuffed toys, and that she will finish the school year at West High, but she is doing pretty splendidly.  

Right now, I am always tired.  Transition is exhausting. Continue reading

a few days in and around boston

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Spring break.  Tuesday through Saturday.  Boston environs.  Pictures now, reflections later.

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First morning in Boston and first Dunkin’ Donut.

The cutest apartment in all of Boston!  A carriage house to a very beautiful old Victorian.  No, I didn’t get it.  I didn’t even get inside to look at it.  The rude RE agent cancelled our appointment after I arrived.  We did, however, climb stairs and peek in windows.  Universe, I’m putting you on notice that this apartment’s twin is my wish list.  Please. Continue reading