Savoring May

I rarely show pics of V here yet can’t resist sharing this recent photo of him with a friend at the equine therapy center where he interns once a week. So apropos of nothing here’s a sweet shot.

I wrote a post I didn’t publish (that happens occasionally) because it seemed so petty in light of everything going on with those I know and beyond, in the bigger world, from a racist attack in Buffalo to ongoing war to Roe to the recent victories of so many far right candidates. It was a simple homage to May, one of my favorite months. I celebrate my birthday; I also celebrate the heart of spring with all its blooming trees and flowers. In the course of the month I get to see them go from bud to flower to a lovely if bittersweet plethora of petals on the ground, another season come and gone. So I savor May for what it brings and how fleeting it is in all its beauty.

Family news, both good and bad. B graduated and is looking for a job, then a place to live. I’m still wrapping my head around the fact that he is now in Seattle. It’s taken me enough time just to settle into the reality of being a bicoastal family. On top of that a new city to learn again. Yet I’m so delighted that some of my favorite people live there and will be wonderful company when I visit.  I’m proud of and excited for B and whatever is to come. I have faith in him and his path.

On the bad side, my brother and dad both have COVID. Both cases appear to be mild, thankfully. I worry about them both but especially my father. Yet at 95 he seems to be faring okay relatively speaking. So many friends and family have been sick with it recently, with cases ranging from asymptomatic to some really rough days of flu-like symptoms. It makes me all the more aware of how vulnerable we all are, in many ways. I pray that they both will be well soon.

On the homefront some nice in person time with friends: a simple breakfast that felt monumental because it’s been quite a while since I’ve sat down with a friend in person, and it had been more months than we could figure – time taking on a certain convoluted sense during the pandemic – since I’d seen this particular friend. The winter and early spring just took that opportunity to sit outside away and only now with the recent warming do we start to gather again. It’s been so nice to be out for longer walks, seeing so many more of my neighbors out, all of us so happy to be out in our shirtsleeves with no bulky outerwear. I walked to the restaurant and nabbed an outdoor table and ordered a fresh squeezed juice as I waited for my friend to arrive, just sitting and people watching, a favorite pastime I only now realize that I always took for granted. Now I savor those few minutes on a perfectly moderate day – it will be scorching hot soon enough – to watch the world go by.

Later in the week we went to our neighbor’s quinceaneros, which is a lot like a bat mitzvah except instead of bagels and lox there’s pork and plantains, and the kids are two years older. Also no torah portion. In a tent in their backyard there was a buffet of delicious food and a DJ set up and plenty of dancing. Where do 15 year olds learn such perfect choreography these days? Tik Tok? Insta? Snapchat? I am not up on where this age group gets its info but they all dance in unison and it’s fun to watch. The DJ plays some tunes that gets us older generations up on our feet and it’s an altogether fun evening, a rare night out for T & me, all right across the street. Thankfully we were able to tap into services V receives now that he’s 21 to have someone – a very nice woman, it turns out – to come over to be with him so that we could go out.  There are some benefits to this whole new 21+ world we’ve entered that we are just starting to tap into.  

So nothing too thrilling  and yet it felt that way to me. To be out among people again.  I’m hoping to stay healthy so I can keep seeing people I love in person. 

Wishes to all to be safe and well.

hoping for love

In the book Far from the Tree (about how families accommodate children with physical, mental and social disabilities and difference) there is a section on children with multiple disabilities. A mother talks about having her adult child with complex physical and mental disabilities who went into a group home. Her son was provided adequate care – competent and conscientious in keeping him well and safe – but she didn’t feel that there was anyone there who actually loved him.

When I first read that it really stuck a chord, even though we were years from dealing with adulthood. And when I heard Andrew Solomon, the book’s author give a reading, I had the chance to ask him about that passage during a question and answer period at the end of his reading. He agreed that it was powerful and heartbreaking. I cannot recall his exact response, only that it was empathic and yet he had no real answer to this dilemma. And I was left still adrift in my heart imagining that world without love.

Years later now that V is an adult and we are just starting to look at potential homes, that question is omnipresent.  We are looking at two homes with openings for one more individual. The agency that manages the houses has a good reputation, and our lawyer encourages us to be proactive as we tour and meet with them.  Yes, it may be well managed, there may be adequate competent staff who will help take care of him and hopefully encourage him to keep increasing his independent living and social skills, but who is to say that V will be loved? 

And V, with all his challenges – both the ones I have shared here and other worse ones I prefer to remain private – is still, in our eyes, eminently lovable.  For all the difficulties and delays he has, he is a charming young man, filled with intelligence and unbridled joy at the simplest things.  Even at times when we are too exhausted to be fully engaged, our home is filled with love for him.  And who is to say that he will get that any place else?

We feel that he is loved at school, and for that I am enormously grateful. Actually I can’t say for sure that he is loved but he is celebrated for who he is. (The school, after all, is called Celebrate the Children.) He is embraced and accepted. His strengths are emphasized over his deficits.
Since school and home take up most of his time, we know he is in good hands, that he is appreciated for the unique person he is. And when he’s not, like out in public where people can be judgemental, it’s a small part of his life, and besides, it only bothers me. He couldn’t care less.

V is very intuitive. We always describe him as having strong receptive language and limited expressive language, meaning that he cannot talk beyond letting others know his basic needs or mood. I want water, I am happy. Yet he understands so much. We are quick to shift our pronouns from “he” to “you” when we realize he is listening to let him know he is in on the conversation. Because who knows? Intelligence is a difficult mysterious thing to measure. That is one of many lessons I’ve learned on this journey. We all have some intelligence, whether it’s musical and mechanical like V or verbal and analytical like me. V and I test at extreme ends of the continuum, so it is humbling to acknowledge and appreciate where and how he shines. There is no way of assuring that others will see those strengths.

And there is no way of knowing that someone will be loved, in any circumstance. The most loving couplings can come to a bitter end, friendships fade away or fall apart, love is not a guarantee for life. And yet don’t we all want to at least start with, and strive for love in our lives, in some form or another? Whether it’s a romantic partner, or dear friends or family that are woven into the fabric of our lives? Don’t animals bring us great joy and love? There are so many ways to have a world with love in it. We often don’t appreciate when it is there, especially if we don’t have typical family circumstances.Yet most of us are lucky enough to have love in our lives.

So much of the process of getting proper funding for V’s future was emphasizing the negative. Long interview sessions where we were pulling out every painful episode, downplaying all the ways that V has been relatively stable this last school year. Having to tell his school case manager that the disability agency didn’t want to hear about what a great year he was having but rather about the few incidents where he exhibited behavior with which to judge him, to lower his scores and thus receive much needed funding for his future we would never receive otherwise. It was a brutal multi-step process that left me sad and depleted. 

So how to shift to the positive, to move forward even though everything, even love, is unknown? I have faith that we can, with due diligence, find that good fit in a residential setting. We can only hope that the direct service professionals (DSPs) who are with V when he is not in school or a day program will be kind, and more that they will, if not love,at least grow to like V and see his charms.  But that is not a requirement, and it is so hard to know although I’ve seen many more instances where caring bonds form than not. Many DSPs, whether working with seniors or adults with disabilities, grow fond of those they help, they get to know them, become attached, feel invested in the well being of those who they serve.That is the best case scenario and it happens all the time. Yet what if it doesn’t? Is there a way to know? 

Nothing is certain. We just have to hope that our lovable son will be treated well, that he will be shown kindness and respect, and if we are lucky, love.

Another Move, with Anchor

B just moved to Seattle, after a good year in Portland, He’ll have more job opportunities and family there: his wonderful aunt and uncle and cousins, I’m so proud of him for forging his path, although I wish I was closer. We text and talk a lot but there’s nothing like spending time with someone and while we are on separate coasts that won’t be as often as I’d like.

I just finished reading Station Eleven (after watching the TV series), a book I picked up in Powell’s on my last trip to Portland. It took me a while to get into it: it’s about a post-pandemic time far worse than what we’ve experienced in the last few years, and at first I didn’t want to go there because I thought it would be too depressing. But reading about the before and after, in which there is no electricity, no phones or WIFI, no way to even know if your loved ones are alive – likely not, as most people died from the Georgia flu – it’s made me appreciate what we do have. Like telephones and computers and airplanes and ways to be in touch with those we care about most. 

Modern life is often exasperating and alienating and yet we find ways to connect in positive ways, amidst all the violence in the world and online vitriol.  My family helps me from feeling too socially isolated, for while I don’t see them that often I feel their love, and hope that it’s reciprocal. I’m not in a position to travel as much as I’d like or to offer as much help as I wish I could to others and I can feel bad about that.  If it wasn’t for V I’d fly out and help B settle in when the time comes, just like I did in Portland but since I was just out in March I probably will wait a few more months.  

In the meantime B will start anew, finding work and a place to live.  While he’s making these big changes and decisions he will have family, and that makes such a difference.  Especially in our family which is warm, welcoming, hamish and helpful.  B appreciates and values his family connections a lot.  I’m heartened that he feels so close to them, and that they will be physically so much closer.  I’m so appreciative of their offers to help him out on his journey, to be there for him in ways so generous and caring. 

At some point in the future we will find a residential placement for V and then we will have the freedom to be on the West Coast more often.  Like B, we’ll have some big changes in our lives.   I can feel overwhelmed thinking about that future and all the variables still to be determined.  And yet having family, including some friends who have become family, helps me from feeling too unmoored.  And having family for B will give him a loving anchor.  I have confidence in his intelligence, good judgment, self-awareness and emotional maturity. Yet I am so grateful that he has his aunt and uncle and cousins to help steer the course, that he will be less alone than he was in Portland, as well as that turned out. 

So onward B.  I have faith that this next chapter will be full of good things. And I’ll be there as much as I can. For now my thoughts and love are with him and our loved ones on the West Coast.

toward adulthood

V’s 21st birthday was in February and a lot has happened since then. As of March he has been registered with a support coordination agency that oversees all the services he will receive as an adult. We already are receiving two afternoons a week of respite and in May he will have his first overnight stay in a home, so that we can go to our neighbor’s quinceanera.

And just this week we found out the big news that he has been approved for residential services and we can start looking at group homes. That is a huge step and one we do not take lightly. Finding a home that provides the best quality care, where he will be treated with kindness and respect, a place that is a good fit for him – that will be the hard part.

The fact is that V is still the same young man that he was months ago, with all the same major challenges and delays, yet he now is in a new category with its own rules and protocol and endless hoops that we keep jumping through. I’m grateful for each step we take and services we can get, yet I worry a lot about how he’ll do in this new world.

We soon enough will see. He has his first weekend away in an adult program next month. Run by Camp Fatima, an organization with a team of dedicated volunteers, the camp is free to participants, just like the Elks Camp was during all those wonderful seasons when V attended for a week.  This will be different, though: it’s a much shorter period of time and most importantly, instead of having a 1:1 aide, the ratio will be 1:3 or 4, far less close supervision than he is used to or that he needs. (School is 1:1 or 2, by comparison.) This is the future, a bigger ratio of support to consumer, and already I am worried about how he will fare.  If he doesn’t do well how does that portend for the following weekend, when he will have his first overnight in a home, the one we planned so that we can go out?

I recognize the need for respite, and the next step of a home for him but only when it is beneficial for all of us.  It is so hard to know how V will adapt to the adult world.  We are doing everything we can, with the help of a good home BT (behavior technician) to work on independent living skills, yet still there is a long way to go.  There are so many everyday activities of daily living that he is resistant to or not accustomed to, from taking showers – he’s grown used to baths – to getting his hair cut. T cuts little bits when he is sleeping but then he wakes up and resists, so he has a raggedy back of the head, something we have covered up all winter as he wears hoodies most of the time. 

And will he adjust to not wearing a hoodie when it gets warmer? Like many idiosyncrasies, this is a sensory issue: he likes the feeling of having a hood over his neck and head. We even have short sleeved hoodies, which are hard to come by, yet even with that on the other day when it was going up to 80 degrees he nearly had a meltdown when I wouldn’t let him wear a sweatshirt. How about wearing sneakers again instead of the slip on shoes he has worn down in the back because he wears them like crocs? There are so many adaptations that will need to be made. 

We just adjusted his meds, under the supervision of his psychiatrist, so he won’t be so hard to wake up in the morning. Yet he still takes one medication at night that affects his appetite, so that he often doesn’t want breakfast until he’s been up for several hours. School, where he has more supports, allows him to eat something mid-morning when he finally is hungry, but how will that work for his weekend away or more in the future, when he lives in a group home?

There is so much to worry about and yet I realize how fruitless that is, and wish that this constricted knot I feel all the time could be loosened and I could look to this big new future with hope, curiosity, and acceptance each step of the way. I know that is the more skillful way to get through this next period of time. And yet I have become such a worrier, dredging up past and current difficulties and mapping them onto this still unwritten future. And yet in my gut I feel that, like the rest of us, he will learn and grow when he is in new situations where more is expected or required of him.

Fortunately I have some help to navigate the path ahead: case managers and counselors, a support group, wonderful friends and family, and for now a lawyer. I cannot write this chapter yet, only the preface in which I stand at the doorway and try to remember to breathe, to move forward one step at a time with trust and faith.

on good news

Optimist: a person who is inclined to be hopeful and to expect good outcomes.

Whenever there is good news I think of my mother, who despite the odds remained an optimist throughout her life. I didn’t exactly inherit her outlook, yet I’ve found that, now especially, with so much bad news out there, I positively pounce on the good. So after a period where it felt there would be no relief from the sad, scary state of the world, there are a few things to celebrate, the type of news my mom would have appreciated.  I still can imagine her delight at any tale where justice prevails and the righteous or underdog rules the day and the unjust rue the day. Where babies are born and new beginnings are possible.  Yes, it’s in this all too rare time of glad tidings that I think of her most, my very smart and devoted to causes mother, ever the optimist even in the worst of times and more so in the best of times. This would have been an especially nice week for her.

First there was the stunning victory in Staten Island by the upstart Amazon Labor Union which was formed by Christian Smalls, a man who had been fired and staged a walkout over a lack of worker protections, and was called “not very smart or articulate” by a senior Amazon lawyer in a memo that got leaked to 1,000 people (oops). Along with his work best friend and $120,000 budget raised by Gofundme, their totally grassroots campaign (think baked ziti and barbecues) was victorious over the Goliath Amazon, which shelled out more than $4 million in loose change on consultant fees and held mandatory meetings with captive audiences at which they urged workers to reject the union. The organizers won by being a persistent presence, letting the workers get to know who they were – fellow workers – and what they were about: higher wages, longer breaks (yes, workers do pee in bottles because they don’t have time for bathroom breaks and yes management is okay with that), paid sick leave and time off for the many injuries sustained on the job by warehouse workers. 

I have a complex relationship with Amazon, probably like a lot of people who use it regularly as much as we don’t support their labor practices.  It’s hard to give up something so user-friendly when so much in my life right now is difficult, multi-step, complicated. My cousin just had a baby and with just a few clicks I was able to send some swaddling blankets and a note that arrived a day later. And yet to support a place that is so worker-unfriendly doesn’t feel right. The best scenario would be unionizing. So I’m delighted with this victory and will try to honor my mother’s sense of optimism by hoping it is not an anomaly but a sign of more to come; quite possible since the pandemic has been a catalyst for pro-union campaigns, which are often organized by young people of color like Smalls.

The second first: a black woman Supreme Court justice (SCOTUS). Ketanji Brown Jackson, with all Democratic and 3 Republican Senators supporting her, paving the way for her confirmation in the Senate on Thursday. 

I watched some of the hearings but it was hard to stomach the way she was treated, the questions she got flung her way, ridiculous and mean-spirited pontificating, asking questions about what a woman is and racist babies and her hidden agenda to put in place critical race theory in the schools, not that the people asking these questions even knew what they were talking about.  

As reported in the Washington Post

in the four days of the hearings for Jackson’s nomination, senators on the Judiciary Committee used the words “child porn,” “pornography,” and “pornographer” 165 times. They used some version of “sex” (“sexual assault,” “sex crimes,” and so on) 142 times. They said “pedophile” 15 times and “predators” 13 times, one time more than the Bill of Rights came up. 

And in the face of that she displayed what most of us aim for, although we may fall short: remaining calm and cool under pressure and showing grace in the face of what can only be described as its opposite.  She was a role model especially for girls and young women, and an inspiration to millions who watched the proceedings.

In the midst of all this, via texts and emails I learn of the birth of one then two cousins in the span of a few days. Two brand new healthy beautiful beings launched into this crazy world. Both with middle names honoring loved ones no longer with us, linking to ancestors in a most meaningful and heartfelt way. With the love and commitment that went into doing that, the happy families, the sense of hope and possibility; my mother would have been kvelling.  

I know she would be thrilled by all this good news, that it would buoy her spirits as it did mine, coming as it does after the daily reports from Ukraine that has taken up most of the news coverage of late. As the child of socially conscious Russian immigrants, she’d be heartbroken by the daily headlines, and heartened by these other stories– not ignoring one for the other but taking it all in with more focus on the upbeat than the down.  I admit I’ll never be the optimist that she was and yet it’s nice to stop and catch my breath and revel in the good news of the past week

Side effects

1. The 11 hour dental appointment

V takes medication at night to help him go to sleep. We spent many years of sleep-deprived nights trying all sorts of alternative treatments but when it comes down to a major sleep disorder like his there is usually no getting around taking some sort of medication. After much tweaking, V has an effective cocktail that includes several meds, none of which are sleep aids per se but all of which have drowsiness as a major side effect. Since the challenges around the pandemic we’ve added a new med to the mix which help with sleep at night and calm during the day.
V usually succumbs to the cocktail (“Warning: may cause drowsiness” is a good thing : ) so he goes to bed earlier and sleeps longer and wakes better regulated. However, the drugs’ impact lingers through the early morning: he is a little harder to wake up, and he often is very thirsty.

So when he was scheduled for dental surgery requiring anesthesia (he can no longer go to the dentist without it due to excessive fear and anxiety) and the instructions state emphatically NO FOOD OR DRINK before procedure my concern is how we are going to get him up so early and then keep him from drinking water when he gets up. So we plan ahead very carefully: we’ll wake him up minutes before we have to get in the car (the appointment is for 6:30 am) and hide every glass and container that could possibly hold water. The plan works and he gets up, uses the bathroom, gets dressed and gets in the car, still groggy.

We get to the hospital and sure enough there is a water dispenser right in the waiting room so I have him stand in the hallway with me until his name is called. I am so relieved that we’ve gotten him to the appointment with the requisite fasting. Success! I think, the hard part is over. But that’s just the beginning…
He is promptly given a large dose of anesthesia – he resists the shot as much as he can but eventually the medical team maneuvers it into his arm. He fights it for a few minutes – we’re told that patients sometimes have hallucinations when first getting anesthesia – and then succumbs to the strong sedative effects.

Three hours later he is out of surgery and we’re told to come to the post-op room to wait for the anesthesia to wear off. One to two hours, as the forms I read so closely had told us. T and I both go into the room to wait with him. We sit surrounded by people who are also dozing after surgeries. One by one we hear them awaken and the nurses offering them something to eat and drink, giving them their postoperative instructions, asking how they are getting home etc. It’s a big holding cell and we are but one small part of it.

Only V doesn’t wake up. Could this be the extra large dose of anesthesia, the medications he takes at night still in his system or likely some combination that completely knocks him out? After two hours, I cancel a 2 o’clock appointment I was sure I’d be home for. More hours go by and still we can’t arouse him. I tell the host that I won’t be able to attend a meeting scheduled for 5 pm. Five hours later we are able to get him to open his eyes, only to shut them again. After most of his life doing anything we can to get him to sleep, here we are trying anything possible to get him to wake up.

The rules are that he cannot leave the hospital until he can stand up on his own. By the time he lethargically says that he needs the bathroom, we find that his legs are still wobbly. A nurse wheels him to the bathroom in a wheelchair, he comes back and we wait some more, the room now practically empty. We watch as one shift of nurses leaves and another set arrives.
Finally at around 5 pm, we’re able to rouse him. We leave the house at 6 am and return at 6 pm, exhausted in different ways from V, who practically collapses into his favorite chair, refuses all food and drink, then eventually stumbles up the stairs where he goes back to sleep for another 10 hours, still feeling the effects of the sedation. And to think I was worried about the fasting.

2. Movie Time

On the positive side, I’ve taken advantage of V’s generally earlier bedtime to go to one of my happy places: the movies. It’s not as good as being in a theater (although I don’t know if I’ll ever be as enthralled to be so close to so many people for a prolonged period of time) but it is a way to transport myself after a long day. Even 10 hours at the dentist’s. It’s also fun right now to have viewed a number of the films vying for awards this time of year.

2022 Academy Award nominated movies I have seen so far:

Don’t Look Up
Drive My Car
The Power of the Dog
West Side Story
King Richard
The Hand of God
Being the Ricardos
The Lost Daughter

Summer of Soul

I liked some more than others, loved a few, and would recommend any of them.
Drive my Car was probably my favorite, just because it was the sort of not much happens but so much happens that is the earmark of a great short story (it is based on one by Haruki Murakami). Plus Checkov has a leading role. Summer of Soul is fantastic in every way. West Side Story had that brilliant score and lyrics by Leonard Bernstein and Stephen Sondheim, and wonderful choreography. Olivia Coleman (The Lost Daughter) can do no wrong and the performances and cinematography in the Power of the Dog are riveting. Flee is animation for adults, a heart wrenchingly moving story of a family fleeing Afghanistan.

On the top of my figure out how to stream list: Belfast, Parallel Mothers, Licorice
Pizza, CODA.

Hoping that we can – as much as possible – sleep well and wake up easily.

Portland: 3rd time a charm

Are those roses real? Are those trees really flowering in March? Was I really away this past week? Just days ago a free woman in Portland?

Back home, still recharged and energized from a wonderful trip to see B. I have mostly memories as I didn’t bring much back with me beyond some local coffee and chocolate, books from Powell’s, and these few photos taken on my daily wanderings. It was great to see B in person and have time together. Walks in Washington Park (where the Rose Garden and Japanese Gardens are located); in the Pearl district where the hotel is; in B’s neighborhood in the Alphabet District. He really landed in a perfect location. And after three visits I’m getting to know his part of the city better. Lots of down time at his place and at the hotel, where he brings some school work to do since my room has a good work space.

I loved having my own hotel room. I know people who travel all the time get sick of hotel rooms but after being stuck at home for far too long I found it absolutely delightful. My only disappointment was that I had hoped to see more dogs since it was a Residence Inn with pets welcome. The room was a suite as big as the studio apartment I lived in for 12 years. Anyone who has lived in a studio has a different sense of space. Well before tiny houses were ever a thing, small apartments have been a longstanding way of life, especially in urban settings.

You realize that you can sacrifice square footage in exchange for a low price or a great location,
that people really don’t need that much space when they live in the middle of a city.
So I look at B’s studio and I think, it’s perfect! It’s smaller than mine was but it has a cute little eat in kitchen and a room big enough for a bed and sofa and a decent sized bathroom, and it is in a fabulous neighborhood with everything you could ever need or want a walk away and any other destination in the city can be reached via electric scooter – B’s favorite way to get around – or a great public transit system. Just right for someone in his 20’s.

So much works in Portland, only the terrible homelessness crisis keeps it from being an ideal city. Yet in terms of urban planning (public transportation, bike lanes, low density) it feels eminently livable. What does “livable” even mean? In practical terms, I like that I am not terrified every time I cross the street that someone will come speeding by; I like the way drivers slow all the way to a stop, and smile at you, like they were glad that you were out for your walk and causing them a ten second delay, the opposite of the Jersey attitude of racing ahead, seeing stop signs as mere suggestions and red lights as optional. Portland operates at a different pace, friendly, less frenetic or congested yet still with all the resources of a big urban setting.

Solo in the city was so much a part of my life for so many years, so it was nice to get out for walks – only one rainy day, pretty lucky this time of year – and explore or simply set out to a destination, like  Powell’s Books, where I spent several hours total over the trip browsing through books. I also got a 3 day guest pass from B to go swimming at his gym (near my hotel), which was a real treat. I haven’t done lap swimming since Labor Day, and it was a great way to start the day.  Travel can be all about adventure, it can also be about comfort and ritual, if even for a few days of getting up at the same time, going for a swim, eating a good breakfast (included with my stay), heading out to see B.

There are schedules and rituals at home as well, but I feel so burnt out from them. There’s also a lot of worry, every morning hoping it will be a good day, that V will be well-rested and well-regulated because when he’s not it affects everything. So leaving T in charge of V, for which I am grateful,  and having four full days to spend with B I feel some sense of balance rather than this lopsided existence where how I am is a reflection of how V is. I don’t know where B will end up permanently but wherever it is I’d like to be nearby much of the time. Which brings up complicated issues if we find V a group home in NJ and B remains in the Pacific Northwest. We don’t have the resources for a bicoastal life.

But I’m getting ahead of myself. For now, I am so glad that I was able to get on a plane and get out to be with B on his turf, to spend quality time in person with my wonderful older son. I miss him already.

In Person

It was so great being with family for my dad’s birthday that I decided to move up my planned spring trip to see B, whom I miss very much.   I hunker down and figure it out quickly: finding a cheap fare, using a few soon to expire free hotel nights from my credit card, and just like that I’ll be on a plane next week. (Since we once again have some afterschool help for V, it should be a relatively easy four weekdays for T.)

I’m excited to be heading out to see B so soon. Yet in that excitement I easily digress to things I can’t control in these tumultuous times, like the behavior of my fellow passengers. The only remaining spots on the flight at this late date were middle seats in the back of the plane.  Hopefully it won’t be as bad as the last flight where I was also stuck in the middle and my seatmate, who was binging anime, very begrudgingly let me get out to use the bathroom, as if needing to get up on a 6 hour flight was unreasonable.  What if this time it’s even worse? A scenario plucked from one of those awful headlines I’ve read about people losing it on planes? A middle seat gives me double the chance of sitting next to that person. These are pointless diversions I realize yet everything feels heightened since Covid. Crime is up. Traffic accidents, injured pedestrians, and yes, incidents on planes. Life doesn’t feel as safe or civilized anymore and so I am less relaxed about travel. Excited to land; nervous about the getting there…

Back to what I can control:  following my impulse and instincts for a change by following my heart to the West Coast where I can have real shared time with B.  After being with my family this past week live and in-person I keep thinking about how good it felt to be around other people, to share meals and conversation and downtime, where you’re just hanging out or going for a walk and you have lulls and then an interesting conversation happens – there’s time for the ebbs and flows of life.  That’s the part you can’t get from keeping up through text or calls or even Zoom: that visceral component of being in others’ company.

So it will be great to have the time to focus on B, shifting gears from the usual routine, where so much of my day-to-day life revolves around V: after I’ve spent some time writing here there’s lots of laundry and housework to do and follow up emails and calls related to his future as well as little things that occur on a regular basis, because we are not just his parents and caregivers but also his advocates and voices for what he can’t communicate:  This morning he needed one of those emails to his school team saying that he didn’t eat breakfast because he doesn’t have the verbal skill to explain himself, to say ”Good morning guys. It took me a while to really wake up this morning and I wasn’t hungry yet when I waited for the bus so I’ll likely need to eat the snack in my bag later this morning.”  Our explaining this is an added layer of communication a typical kid wouldn’t need. Of course the typical 21 year old would fix his own breakfast and make his own lunch or pack a snack – skills that are especially challenging due to V’s impulsive relationship with food and his need for someone to help him with almost everything he does.

All to say V takes up a lot of space in my life. My heart is another story. There’s lots of room for B there, where I adore and am proud, occasionally get frustrated or disagree yet overall feel like whatever part I had in creating this wonderful person I gladly take some of the credit. 

So this week I’m in limbo. Dealing with V stuff while already starting to think about what clothes and outerwear I can squeeze into one bag to deal with temperamental March weather. Already thinking about all the walking I’ll be doing back and forth from the hotel and B and then wandering around Portland. Already struggling to come back to the here and now. Because travel requires planning it is hard not to dwell in the future.

There are parts of that future I welcome. After I return it will be daylight savings time and the days will grow longer and warmer and hopefully as Covid numbers continue to go down, there will be more opportunities to be with other people. If all goes well it may be possible to get out of winter isolation. I like my solitude, I am in fact grateful for alone time, and yet I realized being with my family just how isolated we are most of the time. I appreciated how it felt to be with others. My brother and sister-in-law are the type of hosts that make sure you are so comfortable and at ease (as well as well-fed and hydrated) you don’t even realize their effort because they make it seem effortless.

The family time made me hungry for more, and so as much as I love T and V I am heading out again. Soon I’ll locate the carry-on bag in the attic and probably start filling it way too early out of excitement for in-person time with B.

For Dad on his 95th Birthday

To Dad and my wonderful Aunt Betty, happy 95th birthday!  Since the passing of my dear Aunt Minna, this is the first year that the triplets are not celebrating together.  So there is grief at such enormous loss alongside the joyous marking of this remarkable event.

Being a triplet was part of their lives and identity, from birth in 1927 through a childhood in three boroughs: Queens, the Bronx, and Manhattan. I grew up looking at photos of them in matching outfits, the threesome on the beach near their home in the Rockaways and later, in front of their house on Sedgwick Avenue in the Bronx, or the four of them with their older sister Addie. My grandfather worked in the garment industry so he had much of their clothes made for them, and that handiwork is evident in the adorable identical dresses for the girls, the shorts for my dad. Even if they hadn’t been born on the same day they would have drawn attention for their striking appearance.

The family was living on the Upper West Side by the time they found romantic partners in their 20’s and moved out to marry. Each triplet had three kids and with Addie’s seven, there were 16 first cousins, of whom I am the youngest. The siblings stayed close, visiting often with each other, celebrating Jewish holidays, traveling together.

For the triplets’ 90th we had a big party, a pre-pandemic bi-coastal in-person gathering. Last year in keeping with Covid, we celebrated on Zoom. This year again there will be a Zoom meeting with Betty and her kids as well as the children of Minna and Addie and their spouses. So a lot of people will get to celebrate this momentous occasion.

I also will get to celebrate in person with my siblings and three of their four kids. Four generations, counting my little great nephew.  (I’ll be the sole rep of our family as B is in Portland and T and V will be staying home, since V isn’t a good traveler these days.)  

It’s been a tough year for my dad: in addition to losing his sister, he broke his hip and had a slow recovery from the operation. His vision in one eye is failing. He occasionally struggles to find the right word (but then, don’t most of us over 50 have the same issue?).  Yet overall he’s doing remarkably well for 95. He just retired this past year after working for 65+ years. The last time I visited, he beat me at Boggle repeatedly. Not saying a lot – my poor spatial relations make this a hard game for me. Still, as he strained to see and write down words his list showcased his extensive vocabulary.  I inherited my love of language and words from him, So here’s one for you Dad:

Celebrate, from Middle English celebraten, borrowed from Latin celebratus, “to observe festivity, praise, honor.”

I’ve covered observing the festivity, here’s the praise and honor.

My sister, brother and I are lucky to have such a wonderful father. Loving, wise and funny, generous and kind. Everyone loves my dad. What more can a person want from life? And his has been full and happy and long and I savor every birthday as our great good fortune, to have a dad, Zeide and elste Zeide.

My dad taught me by example attributes I hold dear, especially honesty and humility. Living in a time of duplicity in politics and corporate life, honesty is hard to come by. And humility? We venerate celebrity, we cultivate followers and “likes.” We want attention. Humility is becoming a lost art. Yet for being the best educated person I know, brilliant and accomplished, my father has always remained humble.

He also values his privacy. It’s nobody’s business how much money you make, what you do in your spare time, what candidate you support – he was vehemently opposed to political bumper stickers but relented when my mother campaigned for Bob Edgar, a stellar PA congressman who went on to serve as President of Common Cause. He also values others’ privacy, having discretion when it came to the secrets and complex life details of his many clients. 

Dad’s goal as a lawyer was to be helpful, which also shows his humility: he wanted to be of service to others. He did this through his expertise yet never bragged about it.  What made him such a good lawyer was not just his knowledge and skill but also his personal approach: Patient, understanding, non-judgemental.

A proud born and bred New Yorker, his demeanor seems better suited to the Quaker city of Philadelphia, where he’s spent most of his life.  The motto of the Philadelphia Bulletin, the evening paper we had delivered (back when major cities had at least two dailies) was “Nearly everyone reads the Bulletin,“ which is a very understated Philadelphia type of saying. 

He has led a life that is fulfilling and rich yet not in any way ostentatious. It is a kind of quiet, a way of not needing the world to revolve around you, something that requires a lot of self-confidence.  After all, if we truly believe in ourselves do we really need praise wherever we go? 

And yet, in being honest, humble, confident yet modest, my father is revered and adored. Simply for being an extraordinary person, which of course is not so simple. What more could we value in someone than everything my father possesses in spirit, intellect, and heart?
How lucky I am, we all are, to have him in our lives.

With love and gratitude I look forward to celebrating another year.



V turns 21 today, February 9th, and I need to parse out what that means in terms of his future, and what it means in the moment, to find a way to celebrate that my youngest son has reached this milestone while grappling with the huge tasks and uphill battle we face in the coming years.  So first:

Happy Birthday V! You are a fine young man with many strengths and gifts and we are so proud of how hard you work to continue to learn and grow. We’ll have some favorite foods for dinner and then a cake and sing to you and you can blow out the handful of candles that represent 21 years you’ve been on this earth. We hope that this will be a wonderful year for you. Although so much is uncertain and we don’t know when or how your life will change in the coming few years, know that we are here for you, that we will always advocate in your best interest.  You are such a happy person (usually : ) and we will do everything we can to keep you feeling good about yourself: confident, stable, safe, content.

That’s the easy part, the good part, the celebration of life of someone we love.

Then there’s the rest, the “falling off the cliff” part we’ve been girding ourselves for, when you age out of the formal schooling of the education system at age 21 and there is no legal mandate or federal requirement for providing supportive services. So 21 looms large in the life of families like ours. Fortunately we are working hard so we don’t fall off the cliff, assuring that you have all the services you need in this new chapter of your life. We’ve already gotten over a few big hurdles and are gearing up for all that is left to do.

We were successful in getting an extra year of school thanks to the Bridge Year, which our governor enacted to serve students who lost out on significant education due to the pandemic, so it takes a lot of pressure off of finding a day program starting this summer. That means you get an extra year at your familiar school.  

Our reassessment was successful in changing tiers so you will receive the maximum amount of annual funding for services. Having a lawyer is a big expense for us, yet it’s worth it already: we’ve practically doubled the funding you will have access to each year, which should mean you can have all the supports you need to thrive. (Something, of course, everyone deserves.)

We edited and signed the letter from hell, crafted with a good lawyer’s precision, 2 full pages of the absolute worst highlights of the 18 page assessment, making the case for why you  should be moved up the 12 year waiting list for residential placement.
It was a painful document to read, far more piercing than the longer assessment with its flat fill in the blanks format. While I hope it will be effective it is difficult to see on paper a story I’ve never let myself fully believe. I tell myself it’s a tool, a necessary step in getting what we need. It is our lawyer’s job to get action from public agencies notorious for moving slowly or not at all.  Still, it is hard to take in the portrait that it paints, all dark gray and black, a picture of dire circumstances that are unbearable.
We have learned to live with challenges; they are woven into the fabric of our lives yet they are not our lives entirely. There is much joy and contentment stitched in as well,  Life is full of difficulties yet it is more than that.  I couldn’t survive otherwise.

We’ve selected a support coordination agency and filled out a 20 page personality profile that gives us the chance to show a better nuanced picture of you, one that includes your strengths and likes and a vision for a happy future. It too took a long time to fill out. I’m relieved we have a good agency to work with, that we are starting off this brand new unknown world with people who hopefully will be on Team V and help us receive all the services you need in the future. We just had a two hour meeting with them to review what this new stage of life might look like. They gave me a glimmer of hope…as well as eight more forms to fill out.

We are not falling off a cliff, we are peering over the edge yet firmly grounded in safe territory.
There are many more next steps but we don’t know what they are yet.  Fortunately we have some guidance, and we will face each new hurdle as it comes. I am cautiously optimistic yet not altogether comfortable. There are so many unknowns.

For now, Happy 21st Birthday V. We love you and will do everything we can to make it a good year and to give you a future that is bright.