Category: Journaling My Days

I journaled for years on paper and I expect to be doing it in some form until my last days. In short summary, I teach mindfulness to parents of kids with challenges; I garden as often and as much as I can in Wisconsin and I am working through the threads of grief six years after my husband’s death. I am very grateful for finding and chasing the joy in this unexpected life.

siloing

To The blogger of The Great Leap who wrote about her new business—The Autism College Connection—which offers advice to families who hope their children with autism are college bound:

I am a big fan of your blog and applaud your work with your son and your new business. I’m sure many will benefit. I take issue, however, with the way you described day programs. You wrote, “He was too smart for day programs that babysat young adults with higher needs.” My daughter is also smart. She is quirky and has many talents that need cultivation. She has travelled the world with me and wants all those things typical young adults want. She also needs a day program that offers her instruction, community and some fun. The staff at her day program engages with her, fosters relationships and expands the worlds for their clients. To reduce what day programs do to “babysitting” hurt to read. I expected that you understood more about the complex post-pandemic world of young adults with autism and other disabilities. It was both disrespectful to my daughter and others who need day programming, and it further silos the larger community of people with disabilities. I believe we need to stand together, cheer on each other, support the needs of all of our children and young adult, not just those in our own children’s niche. If we don’t support and respect each other, how can we expect the typical world to ever understand, accept and support our children?

To her credit, the author responded to my comment almost immediately apologizing for her clueless sentence.  

And I am proud of myself for commenting. I think that even last year, I would have said nothing, feeling confused about the disrespect and the easy categorizing of people with different levels of disability. Feeling uneasy with the thought, “what if Julia read that?” 

This morning, I feel slightly clearer. Amazing how much we all have to learn.

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transformation

At church in small group ministry, we are talking about transformation this month. And to a person, everyone  in my group had a bit of trouble with this topic. We all wanted that Disney Cinderella transformation, the magic wand that turns a pumpkin into a coach and rags into ball gowns. And we could not think of any or many transformative moments in our lives that was quite like that.

Someone suggested that it is more evolution than magic wand, and this morning, I think that so much is in the eye of the beholder. The heart of the dreamer. What and when is that magic wand moment?  And how?  Therein lies a mystery.

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waiting & not waiting

Waiting.  Big snow storm predicted for the day. Over the past two days, the outlook changed from hour to hour.  I think it was supposed to begin overnight and that got edged up and up until I decided that we could do Julia’s volunteer time at the library.  It is raining and it is chilly, but not cold enough for serious snow.  A few flakes were falling during our ride to the library but if I wasn’t expecting snow, I might not have identified what fell as snow flakes.

And things were cancelled yesterday—many school districts, Julia’s day program, CRI rowing tonight.

Even my phone said it was snowing this morning long before there was anything but rain coming down.  

And waiting to see if my persistent cough is a flu.  I’ve been coughing—sometimes more, sometimes less—for months now.  Covid recovery, dry buildings, maybe a cold.  Just on and on.  However, today I woke up with more—heavy eyes, feeling like it was a bad night’s sleep even though it really wasn’t, maybe a bit warm, and now sitting in the library, my skin is beginning to hurt and all I want to do it go to bed.

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sentences

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. 

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of roman gods, the year lived & what may come

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. 

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a cherished empty box

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.  

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process & peace

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.

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the ride

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.

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coming home

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. 

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Hoi An in the rain

And I am missing home stuff.  After a month and six days, I will allow myself such feelings.  Mostly missing is of three varieties: First, I miss Cheshire, Justin and Wilbur, and being a small part of their lives.  Pictures of Wilbur attests to six weeks of him growing.  Even at home, I don’t have an independent relationship with Wilbur—yes, he is one—and so it follows that so far away feels like I will be a stranger when I return.  Or at least, I believe so right now.

Yes, a bit of self-pity. Even during high adventuring.

Second, I miss my church community.  I get the emails!  The list serv with announcements.  A few weeks ago, I felt like I was keeping up with the goings on.  Now, I feel cut off and missing—the Ferry Beach weekend, a special choir concert, the early November Music Sunday music, the 175th birthday of the church lunch.  And lastly, I miss my HILR community—course work, lunches, special concerts and lectures.  I am grateful and happy that I’ve kept up with the one zoom class that I have—those late night class meetings have been an interesting comfort.

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