Tag: family

coming home

Home.  I have chewed on the concept and the actual location of the place for a long time.  I have lived in places where I never felt at home, sometimes gradually finding enough of my people in those places to hold on and not wither away. I lived in places that felt like home, left them with every intention of coming back, never to return. There are places in-between—places where I felt some connection with the air of the place and made important friendships. Boston is one of those places. I moved from Jersey to Cambridge in the middle 70’s to live with David. He had been at Brandeis, dropping out to play in the pit band of the show, Lenny, and then just staying on.  I liked the city then and the neighborhoods in Somerville and Cambridge where we lived.  I was willing to move back to somewhere around here after we finished our degrees. David wanted NYC as home and very certainly, I fell in love with NYC and had no regrets. 

We never returned together to Boston, and when we left NYC for the midwest, I forgot that I had feelings for Boston, the place. 

And I did not quite realize, when I lived in Madison for twelve years, how much that had grown to be a home. It was a hard place to leave. Not the home that I came from, I will never be a midwesterner but the place with the people who supported me, and Julia, those first years of her with us and all the years after David left.  

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another mother’s day

I brought my laptop to Julia’s year end recital at Berklee. Berklee Institute for Accessible Arts Education.  I will not get much time to sit and type but I was pretty sure I would want to get it out as soon as I sat down. I do and we have some time until recitals begin. 

This year the musical step taken is that Julia will play her cello without me sitting with her. This is the step forward after a few taken back. Back in Madison, when Julia was playing with Martha Vallon, she always played without someone sitting with her; however, when Julia emerged from Covid shutdown, she was not willing to be on the stage alone, not willing to do her own counting or take full responsibility for what she was playing.  I see some change now.  It has been a long way back.

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truth and grace

I’ve been composing something in my head—about how Julia new placemet is going and how home is going and generally, although somewhat anxious about the world around us, I am feeling optimistic.  I thought that it might be the entry which would kick off the end of the  memoir that I’ve been working on off-and-on, although for the last few months it has been mostly off.

I hadn’t written this optimistic mostly-happily-ever-after post because I’ve been busy.  Feeling better means catching up and keeping up.  Tuesday night, I congratulated myself on getting my tax stuff together to give to the accountant.  Slowly, I’ve been feeling rather good and almost organized enough to do for myself.  

But you know, the shoes always drop. I’ve been waiting for them.

Monday night, Julia had an extremely runny nose. She had been coughing some a few days before. I gave her some decongestant Monday evening and she went to bed early. When I woke her up Tuesday morning, she didn’t want to get up.  A different kind of not wanting to wake up than usual. And so, I told her to go back to sleep and I called her van ride and her program. John, the program director, said she seemed off on Monday and asked if anything was wrong. He said she asked for quiet space. When I asked her about it later, she said she was not feeling that well on Monday.

She slept all of Tuesday, waking only when I asked about food.  She ate a late breakfast and an early supper, and after each she went back to bed and sleep.  When she woke up Wednesday morning, she seemed well and in a good mood. She got ready and got on the van without any difficulty.

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friday status

Hard week for me and for Julia, but our challenges pale in comparison to what is being inflicted upon young people who our universities invited here to study and practice being Americans.  Since law school, I have put a good deal of faith in our legal system, checks and balances, respect for the law, the ethics of judges. I don’t always agree, in fact, the republican packed Supreme Court disappoints me regularly; but I’ve believed in the process. That belief that is shattered daily. There is no way to keep up with the barage of awful news, but miss one day and life as I’ve always known it may turn completely upside down. No hyperbole at all.

This was not what I began to write but it is very hard not to follow rabbits down deep holes.

Today, I need to reset from the overwhelm of the week.  I am privileged to be able to sit back and take stock and right myself. I am aware of that.  

Morning painting after Julia was picked up, some writing, a quick vacuum of floors that have gotten very dirty in some unknown way, folding four, or is it five, loads of clothes (temporarily giving up on getting Julia to notice that an over full laundry basket is a good sign to wash clothes). I have reading for next week’s classes and writing that needs to be finished, but the sun is out, the gardens need cleaning and the sadnesses need airing before the day is finished. 

What was personally challenging and hard for us, for me should follow soon.

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the ride

Morning wait for The Ride.  Julia takes The Ride to her day center.  The Ride is our MTA van transportation for people with disabilities.  We are lucky to have something like it. Sometimes lucky; sometimes a curse. 

The Ride is safe, the drivers are helpful, the interface be it on computer or the phone are relatively effective.  The flaw in the scheme is reliability.  The Ride is notoriously unreliable.  So much so that Julia new day center does not allow clients to use The Ride to and from the center.

And I understand.

The Ride comes early, the Ride comes late, and sometimes it doesn’t come at all. A few times, The Ride has come to the wrong address and left, blaming Julia for not being available. Occasionally, they have used Lyft to pick Julia up from her day center and the Lyft driver has no idea that Julia will not be waiting outside for the Lyft car. 

Using The Ride for the past 15 months, I’ve come to understand how and when to communicate with the dispatchers.  If I find out that a Lyft vehicle will be used, I call and ask that the driver be given specific instructions. No one likes doing this. When The Ride fails to show up and I call the dispatcher for an immediate re-schedule, I refuse to be transferred to a department where I can lodge a complaint.  I don’t want to complain, I want the ride.

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birthday girl

She had a very low key birthday because I have been confined to the house or hospital since New Year’s. However, my VNM, aka Ed Childs, brought home her favorite take out, bought her a lucky 2025 bag of Japanese beauty stuff and nifty socks, and served us strawberry short cake for dessert.

And just like that, the little girl who I met when she was five and a half turned 24.

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off oxygen

This morning I woke up ready to take off the oxygen. Just ready.

Healing was looking good on Sunday. The nurses and techs were encouraging me to move about the house, to do a few things, nothing extravagent but easy chores.  Christmas still needed to be put away. Ed and Julia had brought up my 4 christmas boxes and I had taken down a little bit a few days before.  I needed to straighten the boxes, put away garland and some of the lights, and then tackle the tree.

And I felt ready.

These sick days have found a rhythm of nurse and PT visits and meals and phone calls and email.  After lunch and a nap, I was ready to tackle christmas. I was puttering when a pain crept up in my chest. It bloomed on the right side of my chest and radiated into my jaw. It was not intense but present and different from anything I had felt before.  I debated whether to call the nursing line, remembering vividly the mistakes of not calling that David made.

And I called.

I relayed my information but the nurse was not too concerned.  She said she would push up my afternoon visit but to otherwise just continue as I was.  Then, 20 minutes or so (my time awareness of the next few hours fractured. It was 20 minutes, it was 2 hours.  I wasn’t 2 hours but it might have been much longer than 30 minutes). Then, the pain happened again. More intense this time, longer, and did not immediately fade.  It retreated very gradually, especially in my jaw.

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healing

Eleven days into the new year and I have been sick each and every day.  What a way to begin something new no matter how artificial the construct of time and new years are. 

So, first off, I am home and have been since late Tuesday, arriving by ambulance because I was attached to oxygen. I am participating in a Home Hospital program. I am still technically a patient of Newton Wellsley Hospital—my wrist band and IV port prove that—but I am getting my care and monitoring at home. I needed to meet some health criteria—after lots of tests to rule out other causes for my condition, I was found to be relatively stable and treatable —as well as home condiitons like a supportive carer.  I wear a very sensitive arm band which is constantly monitored, two nursing visits each day, PT and PA visits and daily deliveries of meds. It felt like too much activity the first day to keep track of everything. Meds are delivered by the nurses when they visit but I must coordinate for myself the early morning and late night meds including five times using the nebulizer during the day.  It felt like too much to take in and actually do on Wednesday and I was quite grumpy about it all.  It didn’t help that my cough was still wicked then and answering either in person or on the phone was tortuous for everyone. 

For me; however, this is a great program. I am home.  Julia, who had a hard time when I was in the hospital, is doing much better with me home. Other than the visits and care that I am getting, there is nothing more that a hospital stay could offer me.  And I have my best carer, Ed, seeing to what I need.  I feel a bit guilty for all the cooking and shopping and cleaning up and caring for Julia and just making me as comfortable as possible that he has done.  But it is lovely having his support.  He is much more than taking-up-the-slack these days. 

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RSV

Yesterday, after hours in an emergency room bay, I was put in a holding area, hooked up to monitors and oxygen, and told I might be moved to a room later on in the evening.  It had been a long day and I was hungry, head-achy tired and still coughing but the day of oxygen cleared some of my brain and I felt a shift to giving into this process of being sick. 

My not-feeling-so-well of new year’s eve blossomed into just plain sick the next day. The seasonal cough that humidifiers and inhalers and gallons of water could not conquer shifted into something else — a dry hacking that would not stop.  The cough and chills and body aches and an exhaustion that drained every ounce of will power out of me.  

The beginning of January is probably a good time to be sick.  Julia’s activities, as well as mine, are on hold for the holidays. We had gotten through almost all of the seasonal visiting and partying. I was looking forward to a few days of lying low; however, not quite as low as I was laid. 

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consequences

New Year’s Eve has always been a veguely uncomfortable holiday for me. I’ve never been to Times Square to watch the ball fall, I don’t favor loud parties, rarely have I gone out for diner and dancing. We never built any traditions for the evening which didn’t bother me at all until I was alone.

I think I was happiest when I was working in restaurants or when David and I (and one or the other of the girls) went to movies and maybe somewhat of a quick dinner out. The turning of the century was a good NYE—a bunch of friends gathered at David’s father’s house in Jersey. We were living in Indy then and we still had NYC friends, some with small children. We cooked a nice dinner—I don’t remember what. Wine and maybe champagne. We sat in the kind of dining room that I knew growing up and ate on Dad’s good china, lifting his best wine glasses. One friend didn’t accompany his family because he was a computer guy and needed to guard his hard and soft ware if the worst case of Y2K predictions came to pass. Another friend announced that she was adopting a baby from Vietnam—the baby who now has one year old twins of her own. 

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