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.
I wrote this piece for the memoir class I am taking. It is the last of five garden related pieces. I is also where we are today, where I am. And so, I’m putting it here.
I am a gardener.
I notice what goes on in gardens: flowers and vegetables and herbs, perennials, biennials and abundantly blooming annuals that don’t stop until the first frost. I notice trees and bushes, decorative, productive and the volunteers that can be the bane in a gardener’s vision. I notice what the bunnies are eating, what cannot survive without six hours of sun, what the weeds are choking out and what thrives in a microclimate close to a dryer vent on the north side of a house. I know which tulips were planted as bulbs last autumn and which were planted full grown two weeks ago along a walkway with a carefully planned casualness. I admire the window boxes on Beacon Hill—lush, overfull and overflowing, miniature landscapes in harmonies of pinks and creams and lavenders punctuated with trailing greens.
4:00 a.m. My own witching hour. Up in the dark and out of bed, leaving my VNM sleeping peacefully.
We, Julia, VNM and I, have had Covid this last week. We were all ready to go to the wedding of the daughter of a dear friend, trek to Cleveland to party and see old friends, when I felt ill on Wednesday morning. “Felt ill” lacks the drama of the experience. It was more like getting slammed to the ground and wrestled into stillness. I managed to get Julia up and out, dropped her at Elliot House, drove back home and crawled into bed. I begged out of a class to make Yaprakia and skipped choir rehearsal that evening. I asked Julia’s therapist to pick Julia up, stay out of the house with her and drop her when their session was finished. During the day, I held out hope that I would recover quickly from whatever it was that I had and still get on a plane on Friday; however, by the evening I gave into the inevitable and by Thursday morning, I tested positive for Covid and cancelled all our plans. I was pretty sick—temperature, head ache, body ache, awful cough, loss of smell and taste and a few other symptoms I’d rather not describe. During the next four days, I ran through almost everything, apart from severe breathing problems. I was fortunate to call my doctor in time for a Paxlovid prescription and this morning I took the final dose. Symptoms did not retreat as quickly as they came on but after three doses, I began to feel more myself albeit very tired and still coughing.
VNM fell to the Covid test on Friday, and Julia on Saturday. Julia has had a deep cough and had taken a lot of naps, but otherwise is symptom free.
So, we’ve had a long weekend of naps, soup, cough and cold medication, water and juice and tea and more soup.
“It’s Wisconsin,” Julia said Friday morning as she stepped outside. As if Wisconsin was a season or a a weather description like sunny or cloudy. It was cold yesterday and overnight and this morning it is colder—cold enough to run a bit of water in the kitchen sink to make sure the pipes don’t freeze.
But it is hardly Wisconsin.
And I check myself to see if I miss those brilliant sunny and frigid days in Madison.
Yes, somewhat. What I miss is my people, my community, my chalice circle, my Quest group, Julia’s teachers and therapists and some very good friends.
I do not miss the cold. I could feel nostalgic for every one of those people if temperatures there never once dipped below freezing.
We are a week in the new house. There are fewer piles of boxes in the corners, there is a somewhat comfortable arrangement of furniture in the living room, there are some books on shelves.
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.
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.
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.
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.
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:
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.
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.
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.