Category: Growing a Daughter

Updates and stories about my daughter from China who came home with challenges described in letters—PDD-NOS (on the autism spectrum), ADHD and RAD (Reactive Attachment Disorder). Her learning curve has been steep and therapy is a way of life. School and social interactions are a challenge. Making art is a way of life. So is a vivid imagination.

my new year

 

Frank Bowlings’ Julia at the MFA

This is a time of deep diving into chaos and it is not over yet.  

We are leaving the blue victorian house that has held us safe and warm since we left Madison three and a half years ago.  It has never been the perfect space but it has served us well through lock down and Covid, through the rough months without services for Julia and through her toughest transitions—the last of which was a bit more than a week ago when she turned 22 and aged out of school-based services.  

The end of her transition services program, Community Connections or “CC”, was marked by a pizza party with most of the students and faculty and staff of CC.  When her Inclusion Facilitator and I first talked about her party, we thought that something small with a few students would fit her best.  Something like going out to get nails done, Asian noodles and a bubble tea with a few people.  But Julia knew what she wanted and she wanted a big party with cake she made herself.  She invited me and VNM but when we joined the party and I asked if we could sit with her, she preferred sitting with the teachers and aides who have been part of this experience.  It was great to see her chatting and holding court. It was great to see her happy.

She misses everyone at CC and especially those staff members who she spent time with.  I think she is texting with at least one of them and she wants to go back to visit. Connection has always been so important to Julia and it was good to see that she had made some in this program after those last years of high school which were so isolating and difficult.

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sliding into new years

On Christmas Eve morning, I wrote: there is a feeling of the jiggling of a snow globe, of not-quite-righted-ness, possible-upsidedown-ness of the day, and also feelings of those shape shifting holidays of the early years after David died when we were untethered from what had come before and striking out, however clumsily, reaching for something that was akin to honest hope.

I had no idea when I wrote that overlong sentence that I had captured this holiday week spot on.

It began on the Thursday evening before the Friday, last day of school which was called off due to the possibility of wind, rain and ice, a storm that never materialized. Friday morning was gray and chilly but only a little rain and a a few gusts of wind.  And I put 20 bags of cookies into the freezer, 20 bags that Julia was going to bring into teachers and staff of her transition program that day, 20 bags that I had spent the best part of week baking.  

Then came the Christmas plan.  Cheshire, Justin and Wilbur were scheduled to travel to Colorado in the early evening of Christmas Eve.  Earlier in the day, we celebrated Christmas, opening presents, with a bit of Hanukkah slipped in so we could light candles together. The plan for the rest of the day was simple: after late lunch I dropped the little family at Logan Airport, and Julia and I went to the VNM’s family Christmas Eve celebration. And much later, Julia and I went to church in time for choir rehearsal and the 10:30 pm service. 

The plane did not take off at the scheduled 6:30.  Instead, they were delayed from hour to hour. I texted with Cheshire around 8:30 and she expected to board any minute. Then, as choir was rehearsing close to 10, their flight was cancelled and Cheshire tried calling and texting me.  Unfortunately, my phone was in my coat pocket back in a pew.  After we rehearsed, and Julia and I were settling into our seats for service, I took out my phone and saw the texts and phone calls.  

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perhaps it is always

Sunday morning we sang Where the Light Begins (music by Susan LaBarr, text by Jan Richardson) (a pretty version to listen to here): 

“Perhaps it does not begin,
Perhaps it is always.
Perhaps it takes a lifetime

“To open our eyes,
To learn to see

“The luminous line of the map in the dark,
The vigil flame in the house of the heart,
The love so searing we can’t keep from singing,
from crying out.

“Perhaps this day the light begins,
Perhaps this day the light begins in us,
We are where the light begins.

“Perhaps it does not begin,
Perhaps it is always.”

This is one of those songs, whose melody and words pierce the heart like an arrow.  I sang it every day at home last week to learn it. Sometimes it takes me so long to learn music, but singing it every day moved me closer to meaning. And after singing it in choir amidst many voices, I carried around a lump in my throat all day.

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the day after a terrible, horrible, no good, very bad day

Julia had a very bad day at her program on Friday—perseverating on her body that she finds many, many faults with, making lots of self-harming statements, banging her head against the wall, putting hands on a staff member.  After an initial melt down with lots of shouting, it took 40 minutes for her to gain some calm which is far longer than usual.  She took a walk with staff which seemed to restore equilibrium, but once back at the program’s building, she slipped back into melt down.  

And I did the unthinkable.  I was not available and could not be immediately reached.

I am not feeling badly or guilty about this absence, but the fact remains, her team tried to call and text me and I was not available—available to talk to them, available to talk to Julia, available to come and get her.  And my unavailability made everything worse.  And she does not have the tools she needs to self-regulate, to regulate with the help of people who know her well.  There are times when she can not regulate without my direct intervention.

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ferry beach, saco, maine

FUUSN retreat

I am all poetry and the small waves of this Maine ocean.

Yesterday, I started a post about the last week—challenges, transition planning, things that stoked my unhappiness and my anger.  Granted, they were things that inspired forward movement and the business of the next months.

But this morning I walked the beach in meditation.  Walked with some friends after reading the beginning of a Pablo Neruda poem:

The Sea

I need the sea because it teaches me.
I don’t know if I learn music or awareness,
if it’s a single wave or its vast existence,
or only its harsh voice or its shining
suggestion of fishes and ships.
The fact is that until I fall asleep,
in some magnetic way I move in
the university of the waves.

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an equinox

Two weeks old

I went up to Cheshire and Justin’s house on Wednesday with the promise of holding Wilbur for an hour or two.  Two weeks old and not spending too much time with eyes open.  He had a doctor’s appointment earlier in the day and it tired him out.  He nestled in my arms, moving his extremities the way a new baby does—random and without purpose.  Amazing how dear such movements can be.  And I cannot help but remember when his mother was that age and we brought her home to First Avenue in the East Village.

All is well at Wilbur’s house.  Baby sleeping in adequate chunks of time; his bodily functions all working at full tilt.  When else is farting charming? He has a good suck, fills his diaper regularly and cries in protest every time his little body is without clothes. Mama and Papa are content, and not as exhausted as I remember being.

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like no other

So, here we are.  The 25th of August.  On my calendar the day is marked as Cheshire’s due date and although I am completed schooled in the idea that due dates are approximations and not to be planned around at all, my eyes opened this morning and I am all expectation.

I cannot compare it to my own due date either to give birth or to meet my child.  I cannot compare it to first days of school—mine or my girls. Not wedding days—mine or Cheshire’s. The plans for those days seemed solid.  We had set paths that only needed to be followed and at the end of the aisle was a known quantity. And it is not like meeting someone and falling in love—those dates are never circled on a calendar. There may be some hazy hope but no definition expectation.

This waiting time is all possibility and unknown. How will he fit into our lives, take up our time, burrow his way into our hearts. This is the possibility of a new reason to open eyes and start the day.

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last week

Garden sprite

I began this when I woke up and drifted to my favorite chair to write a bit before getting back to a few more z’s.  Finishing up about twelve hours later.

It is the darkest part of night. A lone cricket in my little, dry vegetable garden sings intermittently.  A very slight breeze comes in through a dining room window.  The breeze and the cricket’s song are all that breaks the solemn, velvet of the night.  

A week ago plus a few hours, I dropped Julia off for a week long camp. Amazing. The week and the weekend before went so well.  Again amazing.

The last day of camp, the units put on a camp show for caregivers.  Last year, Julia would not participate in the show.  This year she did!  Not anything amazing but dancing and singing with her cohort.  At the end of the show, the counselors acknowledged those campers who were aging out this year.  This can be somewhat of a trigger for Julia—she has always hated talk of growing up and getting older.  And of course, this was an announcement of transition.  Well, she did great!  She took the tee shirt offered, hugged her counselors and sat down.

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prayers & carrots

Leftover 4th of July firework

Prayers!  Maybe a few thoughts too but definitely prayers!  Please. I don’t necessarily believe in a micromanaging god that will rescue me although I’ve always been partial to the BVM.  A touch of divine intervention would not go unappreciated.

Backstory: Months ago when Julia’s transition program began, she was adamantly opposed to talking about future work, employment, volunteering, etc.  This went on for what felt like a long time.  Some of it was fear of new experiences and more transitioning and some of it was just plain digging in her heels.  She digs deep.

The one employment that Julia was always willing to talk about was working at a Comicon—now rebranded as the FanExpo.  This is something that she has mentioned in her IEP meetings for years now, and something the I dutifully tried to talk her out of as an unrealistic aspiration. I mean, Cons are 3 days long once a year in any given place.  This is not a career!

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summer bounty

A big bowl of tomatoes—so many that I can save a small bowl for the next two days (there are more ripening behind those I picked today) and throw the rest into a big pot to make a simple sauce that I will freeze for the winter.  I have refrained from cooking inside during our heat wave—hot food never tastes good to me when it is hot—preferring to grill a bit of protein on my small electric grill (A nod of thanks to Cindy for gifting the grill to me when I left Madison.) and making huge salad with bought greens and herbs from the garden.  Everything from the garden has more flavor and vegetables melt into one another so much more companionably than their supermarket cousins.

I let the tomatoes cook down for hours and what is left is the sweet essence of summer.  I expect the pleasure long after I’ve pulled up the plants and cleaned the garden for winter.

We are quiet today with nothing planned.  Some drawing, a load of wash, some editing for me and reading. Julia plays her music—Ukulele chords are just beginning to make an impression and she has a new cello piece.  Then, Julia picks up her basketball and bounces it around the house until she becomes bored.  She wants to go to the small park around the corner.  She wants to go alone, but capitulates to my entreaty to go with her and sit far away.  I am.

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