Asbury Park

We went to the beach with V for the first time this summer. It took a while to get there this season given that it’s already well into August. But V usually has sessions with his behavior technician J on Saturday and Sunday morning, and he’s had camp on weekdays, and I like to leave early in the morning to avoid traffic. So while J is in Haiti visiting his family and the weather forecast was for an oppressive 95 it seemed like the right day to give it a try.

I wake up at 630, drink coffee and meditate/pray that it will go well. V hasn’t gone to the ocean in a while and we worry about how he will do. V is very fickle – he’ll love doing something, like being in the water, for a few years, and then change his mind, so we didn’t know what to expect. I want him to go and do typical summer things but the fact is I’m going as much for myself. The Jersey shore is my happy place and I miss it, and I admit I’m filled with envy at everyone else I know going to the beach, although I wish I didn’t have that feeling so much. The truth is it hasn’t been a very happy summer; It’s been tolerable but I long for joy in this season when so many get away to beaches or mountains, for day trips or weeks off, and given that we don’t have family vacation a day will do.

With anything new or that we haven’t done in a while I worry: how will he do? I have V’s lifetime to remind me of meltdowns or refusal to participate in an activity or of not being cooperative, so while I work hard to have a good attitude I know from experience that shit can happen and worry is my unskillful way of being prepared for the worst. I named this blog Grace and Dirt because I longed for one and had too much of the other and I wanted to explore that interplay between the two. I have to admit that cultivating grace is still a challenge. No time more than in August, when I’m hot and weary.

Fortunately, everything goes relatively smoothly: we’re early enough on the road that there aren’t any traffic jams; we get and pay for parking, and buy our beach passes, although V refuses to put on his wristband. I tell the guy checking the gate that he has autism and won’t wear it so I’ll wear two and he says that’s fine. I wonder what people think of that explanation. What does that mean to someone unfamiliar with those on the spectrum? How can he possibly understand all the sensory issues and idiosyncrasies and how forcing the issue – V became visibly upset when I tried to put the tag around his wrist – can quickly wreck a good mood?

At 9:30 the beach is already crowded. V takes off his shoes but leaves his socks on and races down to the ocean, and I go running after him. Okay, he still likes the water. That’s great to see.
He doesn’t want to submerge himself completely but he jumps up and down and squeals with delight at the gentle waves on his legs and acts the same as he did years ago. He’s 21 but acts so much younger; but that’s the beauty of the beach: no one is judging or staring as often happens when we are out in public. It’s the least judgemental environment I know and so I am grateful and delighted. We’re just like everyone else in this big diverse world at the edge of the water. And there are so many different types of people, it’s not all wholesome families smiling in adorable bathing suits. There is a girl with one leg having just as much fun as her peers. There are women with so many tattoos it’s hard to see any skin. There are people who are buff and thin and overweight and all sizes in between. There’s no one wearing their underwear like in Brighton Beach – mostly older Russian people – I always liked seeing that. No matter how different you feel the shore takes that away. We’re all just people out enjoying the day, facing a sultry weekend the smartest way we can.

For a few hours we play in the water which is great, but then the other concern protrudes. What if he doesn’t want to leave? T and I say to each other. We have too many bad memories of having to forcibly pull him away when it’s time to go and that just won’t work now that he is grown.  Fortunately he runs back to our towels and says the magic words. French fries. Food is usually how we lure him away so we quickly pack our bags and go up to the boardwalk until we find Pucker, my favorite spot for fresh lemonade and the best fries – Belgian frites really – on the boardwalk. V happily devours them, there’s enough for all of us and the lemonade is refreshing. 

Then we get back in the car and leave before the afternoon rush. 

I feel elated on the way home. Success. We got to the beach. I’m no longer landlocked and a bit forlorn at being stuck home all the time, or taking the same walk over and over.  As always with the shore it’s as much work to prepare and then clean up afterwards: showers, and a bath for V and a load of laundry and snacks and no longer cold water to unload from the bags. I am a good packer after all these years.

It’s only 2 pm when we get home. Maybe we should have stayed longer but it didn’t seem worth the anxiety of waiting to see how he would do leaving or how bad the traffic would be. I find my old feelings slipping back in, back home when we are no longer anonymous beachcombers enjoying our day out.  By 3 pm, all cleaned up V is restless already. T offers to take him out for a walk around the lake – I’m feeling burnt out from all our walks in 90 degree weather. I’m grateful. I come upstairs to write, to try to untangle all my feelings, how I can plummet so quickly.

This is why I try to edit myself because I wish it would just start and end like this:

I want to go to the beach and to do something different with V. I prepare and pack and everything goes as planned. It’s fun. Success! The end. But the thing is, there is no end.  I appreciate the small victories and then have to face what comes next.  

I just finished watching the Bear, which has been a big summer hit (it’s on Hulu and I recommend it.) It’s about a fine dining chef who comes back to run his family’s sandwich shop in Chicago. It’s about going home, and it’s about working in restaurants. It’s also about anxiety. Unpaid bills and broken equipment and bad plumbing and missing ingredients and stress between co-workers – all called Chef – and grief. It’s got a lot of dark humor because how else would you get through all of that? There’s something oddly comforting about it, that shit happens and you deal with it.  The acting and writing is generally stellar and so well depicts knots in your stomach stress.  It’s very specific to and accurate about restaurant work but that level of anxiety is something a lot of people can relate to. I know I can.  It helps that it has food close-ups and a lead that is easy on the eyes. It helps that each episode is only about a half hour and then the anxiety is over. Until the next episode. 

And so with life.  There’s stress with doing anything different and yet the possibility for joy is there.  It’s worth trying new things.  We’ll probably stick to our familiar walks around the lake this weekend, but that’s okay too. There’s something to be said for the predictable routine, free of stress of the unknown and the need for hypervigilance. Still I’m pleased and relieved that we finally made it the beach on a hot summer’s day.

by foot: on not driving

Due to some really shitty town management two of the three public pools in our town – the affordable option for the middle class residents who still exist in this increasingly affluent community where I live – are closed for the entire summer, leaving one pool at the exact opposite end of town from my neighborhood. (The pool where I’ve been swimming laps for 15 years is right up the street.) That means taking the train a few stops uptown is the only option given that I can’t bike up the steep incline to the upper end of town. Why not just take the 20 minute drive up there? If I was driving yes that would make the most sense. But I’m not.

There, I said it. I’ve stopped driving. Please don’t judge, it was a long road to get here, filled with aggressive careless drivers who populate this state more than anyplace I’ve been, and I’ve been to Rome and Rio, I know from crazy driving. I never particularly liked driving, and in the stage of my life where I had young children in the car whose safety was my sole responsibility, all the less so. And driving a severely autistic kid who would occasionally have meltdowns en route could make a routine trip feel unbearable.

When we first moved here after twenty years of carless city living – I drove in upstate NY where I shared a country house for five years, but that was easy – I had great trepidations. I took a few lessons just to refresh myself. You drive fine, the instructor said dismissively after the first lesson, you just need confidence. He was right. I knew that I drove fine: I was careful and attentive and always safe, it was the other drivers who made me nervous. I was always worried about the other guy, who saw turn signals as optional and stop signs as a mere suggestion.

Early on I described our neighborhood as Brooklyn without the subway. But I didn’t realize what a major loss that would be. The subway, at any hour, in any neighborhood, there I felt at ease. Someone else was driving and all I had to do was know where i was going and how to interact with other people,  I’d rather be traveling from Harlem to Brooklyn at two am on New Year’s Eve than try to get out of the CVS parking lot on a weekday afternoon. I’ve witnessed three crashes in that single little lot! 

A few years into my driving life, after leaving the pediatrician I had someone tear through a red light and total our car, No one was hurt thankfully but it was still a terrifying experience. Still I drove because I had to, from school, to day camps, to the store, taking B to baseball practices and games and to friend’s houses. I was a seemingly typical suburban mom but with a high state of anxiety as soon as I hit the road. I was spared any further run-ins for some time, although I continued to witness crashes, including a few right outside our window, as cars sped through a stop sign in our residential neighborhood.

The last straw was two years ago when I was stuck in an intersection with three other cars all waiting for someone to make a left turn when a car smashed into me. When the police came the other woman actually said that I was speeding past her when I wasn’t even moving. He listened to both of us and then issued each of us reckless driving tickets! After more than a dozen years of suffering the most reckless drivers on earth I get issued that ticket? I challenged it and had to go into municipal court where I was told the citation would be expunged from my record if I’d just pay a $300 fee. The court was filled with residents in similar circumstances. I left that courthouse fed up.

Enough, I’m not driving anymore. I have a bike. I have feet. T actually likes driving and does all the family outings anyway. He takes me somewhere if needed or I use Uber occasionally but I try to walk as much as I can and once I fix my flat tire and get my bike tuned up I’ll have that option. And I like walking, which is good because for all its assets my neighborhood has low walkability, meaning nothing is a short walk away. So going to a store or the bank or the library or the train into the city each takes about a half hour each way, which means I’m in good shape.  And I’m way less stressed not being behind a steering wheel. 

I wish I liked driving, it’s so American to be out on the open road. I’m in awe of people who find it a pleasure rather than a terrible burden to have to be in the driver’s seat. I suppose they’re a majority.And there are all these cool cars now. My dream vehicle is an electric Volvo…as long as someone else is driving.

If there were an emergency and I had to drive I could. I know how, like riding a bike you don’t forget. I’ve been researching places to move where you can easily get by without a car. They do exist and I think I’d be better suited in a small city than a big town. For now I’m walking as much as I can, and taking the train to the pool. 

summer vacation

I’m home from Seattle long enough to be over my jet lag and acclimated to the heat and humidity that welcomed me back after nearly a week of moderate crisp weather, where I had to borrow a sweater for the coolness in the morning and evening, which was such a treat. The time went quickly as it tends to do on vacation.  It was so great to see B & family, to have down time to hang out and catch up.  A few days exploring and enjoying Seattle and the rest in Lake Forest Park (LFP) , the lovely adjacent town where C & T live, and where B is staying for now until he gets situated with a job and apartment.  I am so grateful for their hospitality and generosity. 

I was there to visit people more than a place, yet the place was spectacular. The Pacific Northwest in the summer is generally glorious.  The weather, the views, the air – it’s a great place to take a summer vacation, something I had been longing for and needed more than I realized. I didn’t take many photos or write much while I was gone. I spent the time relaxing as best I could in their beautiful yard and home. It was so good to be away, to be off of V-duty: no ball and chain of the clock: when V has to get up and when he returns home and when he gets medicine, there are so many times even in our relatively unstructured day when things need to happen. It’s not like I sit in an Adirondack chair without a concern in the world, which is what I got to do in LFP. While much was on my mind and going on in the world there really were moments where I was relaxed, and that is a great gift it’s easy to take for granted when “relax” isn’t in your vocabulary.

The last night C and T hosted my cousins for dinner, and it was like what I wish and imagine summer to be but alas it is not our experience, so it was wonderful to get a little taste of it, of sitting around with several generations of family, cousins I hadn’t seen in ages, eating good food in the great outdoors, enjoying others’ company, as well as their dogs.  A wonderful evening capped by making s’mores over a fire pit and enjoying the perfectly pleasant night air, and then B drove me to my very late red eye (1 am departure!) which actually went fine. I read a good book, dozed a bit, boarded and slept the entire way. And T picked me up and I was able to thank him in person, and tell him more about my trip than I managed over short phone calls and texts.  

Someday, assuming B stays out in the Seattle area, I’ll have even more time to stay out West. For now having close to a week was a real treat. An actual summer vacation spent with people I love.

Begin again: Seattle

We got through the long school break with many walks, a few outings and lots of music, everything local and simple. We got through the break with plenty of good weather and generally good spirits on V’s part which made the time go by more easily. He’s back in his summer program, which will last five weeks. Back to his school and some new teachers and aides and possibly different classmates but enough familiar that there isn’t much adjustment.

I’m already thinking ahead to when I get on a plane in a few days – hopefully: lots of canceled and delayed flights lately, so I will be relieved when it actually happens – to see B in Seattle, along with my wonderful family out there. So excited to get to see them, and to get away from the constraints and sameness of days spent at home. 

I have so many fond memories of trips to Seattle where we used to go every summer to visit my inlaws: T’s parents, and after his father died – V is named for him – then just his mother and my sister- and brother-in-law, C & T, who I’ll be staying with this trip.  It’s been so long since we all went on vacation together, and as V got older the trips got harder to take, especially the long plane ride. I have memories that are not so good, of V having total meltdowns in airports and people staring and glaring and airline staff who lacked any empathy for our situation.  B, on the other hand, has always been a great traveler.  

Going through old photos I remember the good times: the beautiful outings, the beaming grandparents, the summer that T and I did the RSVP (Ride from Seattle to Vancouver and Party although “Plotz” would be more like it for me) on a tandem recumbent, a two hundred mile bike ride I find it hard to believe now that I actually completed. T has since done lots of rides but that was it for me. I trained back when we lived in Brooklyn, doing laps around the park most days until I was in good enough shape. C & T took care of the boys while we did the ride along with my cousin-in law and thousands of other riders. It was great fun, gorgeous, and thoroughly exhausting.

I’m not good with organizing my photos into albums; I have a few boxes filled with them, all ages and places mixed together, yet it’s easy to pull out the ones from the Seattle trips. Going on ferry rides and to the falls and into the city and to the local park where the boys loved to go and play.

Looking at the pictures is bittersweet. I try to remember all the fun, warm family times and not the challenges, the beauty and excitement and the mere fact that we did in fact go on family vacations in those early years. Here’s a hodge podge of memories.

I try not to give guilt too much room in my brain. It’s a toxic and unhelpful feeling. Still, if there is one thing I do get pangs about it’s not being able to give B so many of the normal things I grew up with, like annual family vacations, things that I can only appreciate with age. Other than Seattle there were just a few semi-successful getaways like that cute beachtown where we found a little motel with a pool a few blocks from the boardwalk and ocean. The boys devoured their first ice cream floats (our motel was adjacent to a root bear stand : ) we played in the water for hours, and then V bit me so hard he broke my skin when we tried to get him to leave. This was during his water-obsessed years when a day at the beach had an often visceral ending. Yes, vacations became increasingly stressful the older V got, the opposite of what a vacation is for and so we let them go.

Several families I knew with severely autistic kids left them behind: I knew someone who had a lovely few weeks at the Cape every year with her neurotypical kids while her son on the spectrum had a rotating string of babysitters — but the cost of round the clock help for V would have easily tripled the expense of any vacation, making it too exorbitant for our budget. But I don’t know that either T or I could have left V behind. And we never could find enough help to go along with us for a trip, or to find some other way we could somehow have relaxing family vacations. It’s too late to go back and change what has passed. I do have regrets; I try to let them go, to think fondly of the nice family times we did have long ago. Hopefully I will be on a plane in a few days, off to have a vacation with B and our West Coast family.

staying engaged

It was the summer of 1973, and I remember going to some theater event with all of the teens from my camp. The only part of the outing that I distinctly recall is that some of the older guys – my brother’s age so I didn’t know them too well – carried transistor radios to the performance, where they stealthily listened to the Watergate hearings. (Their interest in politics and public service stayed intact: many years later one of those boys was a New York City Councilmember; another founded Freedom to Marry, which led to the Supreme Court decision recognizing same sex marriage.)

Yes, Watergate was a big f-g deal, something everyone seemed to be following, whether they were interested in politics or not. And the facts bear out my memories: at one point or another, 4 out of 5 households watched part of the hearings! I remember that it seemed unheard of to have a President who was so deceitful. I remember learning the names of those around him: Haldeman and Erlichman, which sounded like a Jewish law firm, there was G. Gordon Liddy, who would never be part of that firm, there was John Mitchell, among others. Their roles and titles have blurred over the years but those names are seared in my memory just as were a bunch of teenage guys hovering over radios listening breathlessly as the national drama unfolded.

Watching the Jan 6 hearings life is so different. Instead of radios we all have phones that we can check for the latest news. We all have endless updates on whatever devices we use.  There are a million more options and distractions for those who want to ignore the whole terrible thing. That great saying attributed to Daniel Patrick Moynihan “You are entitled to your opinion. But you are not entitled to your own facts.” is a joke now, as people clearly do have different facts they cling to.  Among Republicans in a recent poll, 25 percent said Trump bears “not much” responsibility for the events of January 6th and 44 percent said he bears none at all. We’re so much more divisive. And while activism is alive and well, there are so many who have just completely checked out, in disgust or boredom or just being too overwhelmed with life to tune in to such a travesty and tragedy. 

But I am my mother’s daughter so while I’m repulsed by much of what I hear and see, I stay riveted. I listened in horror as an election worker named Shaye Moss talked about how she and her mother, called Lady Ruby by those who knew her, were targeted by Trump and Guliani for rigging the vote. Two public servants who were threatened and harassed until they were virtual prisoners in their homes. In fact the FBI warned Lady Ruby to leave her home for two months around the time of January 6th because agents worried for her safety. Shaye’s grandmother called her in terror that a mob was at her door screaming that they were going to make a citizens arrest! Shaye left the job she loved, where as a Black woman, she reverently helped older Black voters who held especially dear the right to vote, as people who had been denied that right for so long. But she had to leave the work that had meaning to her, because of threats on her life. An honest and innocent person, her life has been destroyed by lies.

My mother worked at the polls every election, like these women. She worked in our town which was overwhelmingly Republican even through she was a committed Democrat. It didn’t matter; she was doing a job she felt was important and meaningful. Like these women she was as honest as they come, kind and helpful to those who came to exercise their right to vote. 

My mother raised us to be engaged caring citizens, something I’ve always taken to heart. It isn’t an easy task, and yet it is never more important than now when we have so many options for not being engaged. And yet I understand that need to disengage at times: I rely on TV as much to inform me about current events as to take me as far as I can get from reality.

Because it’s hard not to feel disheartened by everything from ceaseless stories of gun violence to the videos of people storming the capital, to say enough already, just give me some old Seinfeld episodes and let me laugh in peace. Which is what I did after watching news analysis of the day’s hearings. I sat and watched a familiar sitcom and laughed, and then I felt able to go to sleep without knots in my stomach.

I’ll continue to watch the hearings or recaps and then take breaks for my mental health. Watergate seems so mild in comparison. No one was killed or committed suicide, innocent people’s lives weren’t destroyed. It was a botched burglary of the Democratic Party Headquarters at the Watergate apartment complex and the guilty were brought to justice, including the resignation of Nixon. I don’t expect such a satisfying ending this time, but I’ll be watching till the finish.

same old beauty

When people ask “What are your weekend plans?” I generally have nothing much to say, no special activity or event to report. On Saturday morning we go to Shoprite with V and his bt (behavior technician) J, who is very good with V and brings terms like “tools for adulthood” to life… as something so simple as grocery shopping is not so simple for us. There’s the preparation: making a list, making sure we are wearing shoes. Then getting in the car and driving to the store, bringing in reusable bags and getting a cart and then pushing that cart through the store, stopping along the way. Red peppers? Find them in the produce section; get a bag and open it; place two peppers inside; tie a knot in the bag and put it in the cart. And so on, a multi-pronged exercise with each item on the list. And then there’s waiting in line and emptying the cart, putting the items on the conveyor belt, saying hello to the cashier and bagger (and handing him or her the bags). Something so basic is really complex when you break it down, all the more so when you have challenges navigating the world.

We get home and J leaves and we have the rest of the day to ourselves. It’s a lot of time to fill and yet we do. At some point we go out for a walk around the lake if we’re lucky. J comes again Sunday morning and the day is much of a repeat of the day before. J and V spend a few hours together. This past Sunday they made banana bread. The whole house smelled amazing. Since V is still just indoors I’ve been going out in the yard on my own, sitting in my favorite chair or the hammock and reading, enjoying the perfect weather. Later we went back around the lake.

Yup, weekends are much the same and not very exciting and yet in that sameness is much beauty. Walking around the lake really is the highlight of the day. Like “shopping”, “walking” encompasses more than that one word. It is movement and passing other people and dogs and other creatures like the geese and ducks that are everywhere on and beside the lake. It’s a magnificently designed and landscaped public park that I am very grateful to have nearby. This past weekend I took photos to capture some of it, to appreciate rather than lament that we don’t go out anywhere new or do anything more interesting. This routine is what works for now and as T says on almost every walk, “This is the most beautiful park!” If V won’t go out in the yard or for our neighborhood walks anymore at least we have this little pocket of paradise.

And there is something to be said for the ritual and comfort of routines, especially when they involve such swaths of bright green and blue as these last weeks have given us. And given the continued way the world, or at least our very troubled country, is going – there’s a new massacre to absorb almost every day it seems, and it’s with a heavy heart that I approach the news nowadays – I’ll take the sameness over the scary unknown for the moment.

I let the park and the gorgeous little lake console me from all the grief and dread out there in the bigger world. And I accept that the question what did you do this weekend doesn’t have much of an answer to it. Which given the alternatives is fine by me. I’m grateful to have the same old beauty.

salt and pepper days

After 15 years of gardening I decided to call it quits for this year. Too much going on with V and I don’t have the time and energy to devote to it, although this is often the case. I buy and plant with determination and excitement for the new season and then my efforts peter out:  I get lazy with weeding and forgetful about watering despite having a snake hose that once set up, I simply have to turn on from the outdoor spigot.  Last year I bought a fabric weed barrier at the suggestion of my neighbor who swears by them. (although when I first googled what she called it – a “weed blanket” – I got links to some very nice materials with marijuana insignias on them rather than the gardening cover that she’s right, cuts way back on weeding.) Still, I didn’t feel up to the whole gardening process this year. But then on my birthday I received a knock on the door from my next door neighbor asking if I’d like four tomato plants, as he had bought more than he needed. It was the perfect gift (he had no idea it was my birthday) and has led me to slightly alter my gardenless plan to just include tomatoes and some herbs I still have to get.  So I can still play in the dirt, just without too much commitment. 

My birthday was nice in a low key way like that. I got up really early and went for a walk before it got hot (92 was the high for this past steamy weekend!) or anyone was up. V went to Friendship Circle and we did our usual nearby shopping (Costco, Trader Joe’s) and then I came home and took it easy for a while. V was in a good mood – he often is, which makes days with no help easier – and he hung out while T made us a midday barbecue. Steak and hot dogs for the carnivorous guys, salmon and an Impossible burger for me. 

V is still refusing to go into our big beautiful yard, which is like going to the Frick and not looking at the Rembrandts, missing out on all that beauty right in front of you. It’s still a mystery why he won’t go out to a place that he practically lived in for most summers of his life; like many things with V he can’t explain himself and we are left to try to figure things out. And so yard time has become a solo activity, which is lovely in a way – there’s nothing I like more than lying in the hammock looking up at the trees – and yet how wonderful a large yard is for socializing, and what a waste it feels like not to be out there together in these glorious spring days or even better, to once again have people over. But alas it’s not to be and I work on accepting another yard-deprived season. Instead we went for our favorite walk around the lake at a nearby park that is the one outdoor spot that V still likes these days. And it’s beautiful.

Later T & I watched The Last Waltz while V played on his phone and listened to the music. It’s a brilliant documentary showcasing the Band and an array of guest musicians, including Van Morrison, Joni Mitchell, Muddy Waters, Neil Young and the Staple Singers. I cannot believe it came out in 1978, when I saw and loved it on a big screen in a movie theatre. Watching a great movie on a TV screen is not the same magical experience as watching in communion with an audience and while I really appreciate it the second time around, life creeps in: keeping an eye on V, who sits still and then gets restless; googling all the performers, including the five members of the Band, three of whom would have early deaths; getting up to eat something (why do we always want to eat at the movies, whether at home or in a theatre?) I also put things in a context I didn’t have the first time around: I am aware that I am clear across the country from the stage where the filmed concert takes place, that Scorcese had yet again made a guy-centered movie, with only a few women performers; and that everyone on that stage would either be dead or like me, 44 years older than when the film came out, most still leading creative lives. Some, like Bob Dylan – who turned 80 last year – still on tour, bless him. Others, like Neil Young, are still churning out interesting albums and putting his opinions out into the public square.

We do not go gentle into that good night, we keep as active as we can, we take up new passions and causes, we recommit to projects great and small, we value our friendships and cherish family more than ever, we look at those older than us with reverence and curiosity.  At least most of the older people I know do that. Especially women: We may be invisible to the outside world with the exception of an occasional Grace and Frankie, but to those who know us we still have much to contribute.  At least that’s how I like to see it. Age is not something to fight but rather to embrace with humor and humility.  I am the youngest sibling, the youngest cousin of my generation, the baby of the family now with salt and pepper hair. It’s hard to wrap my head around that and yet it’s a privilege, this getting older.

And so another lap around the sun. I put on my hat and go out to water the tomato plants and then for a long walk, enjoying all of it while I can.

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.