Grandma cough. Mama cough. Dada cough.
Wilbur put nouns and a verb together. I don’t know if it is his first sentence but it is the first I heard.
It was Wilbur on FaceTime last week, on a Friday when I had planned to spend the day with him and his mother, but they are all sick from something that Justin brought home after a work trip. I didn’t need to catch it and so, I stayed home and got to spend some phone time with the precious boy.
And heard him practice a new acquisition.
Janus. The Roman god of beginnings, transitions, and endings. Often depicted as having two faces, one on either side of his head of usually flowing hair. He, giving him that pronoun because in my head I see depictions of Janus with beards on both faces, one looking to the future and the other to the past.
That is a good enough god for me this morning!
It is my birthday. I “should” sit down and write something. I have been having trouble doing that. Too many tasks get in the way. Too many distracting thoughts. I am monkey-mind personified.
I need to gently lead that monkey away from the myriad of distractions both within and without, the list of ways that I am not living up to my ideal, plus the list of how I can fix that former list.
And return again to that bust of Janus lodged in my head that I think I saw at the Vatican Museum forty years ago.
Happy Birthday, Julia!
We have spent this first half of January clearing out the old, sorting, parting with, bringing in some new, and a good deal of that went on in Julia’s bedroom.
To back up a bit, I have always loved making a big deal about Julia’s bedroom. Before she came home, I made a pretty girly but not over-stimulating bedroom for her in our Indianapolis home. By the time we moved to Madison 9 months later, she was firmly established as a dinosaur connoisseur and so I designed, painted and decorated a room filled with colorful dinos. She wanted them colorful and wanted her dino toys all around. That was a busy and stimulating room that she really liked. When her taste changed to all things Harry Potter, we made a Gryffindor room—My favorite piece in it was a wand shelf right by her bed. When we moved to Massachusetts, she had almost left HP behind although we hung some of the pictures she was still attached to and we hung some anime posters she was leaning towards. We put up the book shelves she always had and stacked the bins of Littlest Pet Shop critters, Lego and dinosaurs because she wanted them near. Moving house last February, we got to pick out paint colors. Julia picked hers. She decided she didn’t want books in her room (which admittedly was not easy for me) and she was even ambivalent about the anime posters. So, the room, except for the pretty paint on the walls, has looked pretty generic and like she just moved in for the last year. Some stuff on the shelves—toys and art supplies—but lots of piles on the floor with stuff she couldn’t decide about keeping and didn’t know where to put.
I think I’ve started every writing of the last two weeks with some version of “gray day.” And rain this morning, like so many others. If this was snow, we’d be up to our eyeballs.
But it is not.
I do like waking up early, before Julia (which is rare), making coffee and sitting down to write. And admittedly, the gray, rainy days make sitting in front of the usually over sunny front-of-the-house window easy on the eyes.
I started a Christmas post late on that day. Intended to be mostly pictures with a few words. When I looked at the result, I laughed at myself. The pictures were of the darling boy. Almost all of them, a few glimpses of Justin, his dad, and Julia but only because the two of them were helping Wilbur unwrap something.
And I thought, what a besotted grandma I have become! Not really like every other grandparent, but like many that I know. Not like my own parents—they had their hands full raising one grandchild and had another three who lived closer than we did and were more to their liking.
Another eve. Gray today. My christmas lights, sweet during the dark nights, don’t light up a day time room, even a gray day. I’ve finished the work of the days before—tree decorated, presents bought and wrapped, times for visits and choir and gift opening and dinner set, even cards signed and sealed even though not yet delivered. Yesterday, with only little bits to do, Julia and I drove around to deliver cookies to those who were not where they were expected earlier in the week. We stopped once and chatted and that was good. The car needs packing for this afternoon at Ed’s family, for tonight at choir, for later tonight at Cheshire’s and for tomorrow morning’s gift opening.
And what to anticipate watching someone at 16 months on Christmas? He is all eyes and questions . . tat? tat? with arm outstretched and fingers pointed. Last night, I dreamed that he was walking around the living room, secure and proud of himself. In reality, he is taking a few steps between two sets of arms when he forgets his caution.
He tasted and liked my yearly baking of poppy seed rolls on Friday at lunch. A new person to bake for is my own delight. I can hope that he remember my baking like I remember my grandmother’s Easter bread—white, not moist and perfect with butter.
I’ve been trying to find an appropriate placement, probably a CBDS, for Julia for 18 months now with absolutely no luck. If you or someone you know is going through the same challenge, especially if you live in Massachusetts but elsewhere as well, I’d like to talk to you. Please leave a comment below or email me at suzbuchko@gmail.com.
I am reaching out, looking for some help. Some of you may know that I have not been able to find appropriate day programming for Julia.
Julia turned 22 in January, and she was finished with school related programming. She was not ready for employment or further education. I hoped find an appropriate day program for her, specifically a Community-Based Day Support (CBDS) which develops and fosters core skills and vocational attributes necessary for social and vocational independence. However, ever since the Covid lockdown, it has been very difficult to find a place in a CBDS. Most programs citing the difficulty in finding staff.
At present, Julia attends programming that does not meet her needs and is not helping her to foster core skills or vocational attributes. I have been working for the past 18 months to find her an appropriate program but as this year ends, I don’t see that she is any closer to good programming than she was when she left school in January.
Julia is eligible for services through the Department of Developmental Services (DDS), and I’ve turned to their Participant Directed Program (PDP) to meet some of her needs. Julia has been funded for three days of support through PDP; however, while the PDP offers flexibility, creativity and opportunity to individualize supports for an individual, it also expect that the family will identify, hire and train the support staff.
This morning, Julia is taking The Ride, Massachusetts’ para-transit service for people who can’t use public transportation or drive due to disability. She is going from home to Elliot House and back again. She needs to be met on both ends right now. It is a restriction that can be lifted in the Spring if she does well.
And this gives me an extra two hours in my day, plus no energy drain from the driving. I did not realize that there was an energy drain until we came back from traveling. I had not been responsible for driving for 6 weeks and I felt the difference almost immediately upon taking it up again.
This morning, Julia just left, and I feel the quiet and peace settle over this house like it never has. Like the old feeling when she was in school and the bus came to get her or she went to catch the bus. I feel rich beyond measure. This is a moving on from the 11 months since she has been without programming. The Ride doesn’t give her programming, but in a sense, it gives her just a taste of her old school life when she had direction and support. I didn’t know that she would feel this way about a para bus picking her up but this morning, after 3 rides this week, it clearly does. For the first time in 11 months, I feel like the services cliff that she fell off in January is becoming a ramp.
Coming home: Get on a bunch of planes. Watch a bunch of movies and eat the weird combination of what is airplane food—My favorite food during our longest flight today from Tokyo to San Francisco was two saltine crackers with a pat of cream cheese. Exactly like something I’d eat when there was nothing else to eat in the house. Try to sleep mostly unsuccessfully and ultimately stumble from plane to plane to immigration/customs to plane and to a lovely friend who drove us home.
After thirty hours traveling, those beds in Newton were incredibly comfortable!
But to back up —
On our last night in Hanoi, we had a hot pot supper—various kinds of meat and vegetables that are brought to the table raw along with a pot of boiling broth on a heater. It’s good and I’ve liked the idea both back home and in Hanoi. We’ve eaten it a number of times in Vietnam, but truthfully, when I go out to eat, I’d much rather have the cook do the cooking instead of one of us at the table. Still, it seems like a favorite with the people of Hanoi, including our friend, Tra My.
We’ve been walking a little slower, trying to savor, trying to memorize, and still, at the same time, trying to stay in the present. We know that we are looking at things we’ve grown use to for the last time. So many streets we haven’t walked down and restaurants we haven’t eaten in. We have gotten better at crossing streets with and without traffic lights and drivers of motor bikes and cars that consider lights, lanes and one way signs as mere suggestions. We are regulars at that pho restaurant on the sidewalk half a block away from our apartment and enjoy so much all the fresh fruit juices that we drink every day.
Lots of flowers were planted during out week away in Hoi An. So nice to see them.
Chasing Joy 