March movement

It’s the month of trees’ flowering buds and suddenly longer days and pi/pie day and lots and lots of basketball, with the occasional great underdog story, a Farleigh Dickinson or Princeton with unexpected wins. Yes, I know it’s hard to imagine Princeton as an underdog but so be it in basketball world where places like Kansas and Alabama rule. I am always looking for the good underdog story to root for and so for this month there are ample opportunities amidst the madness.

My own March has been somewhat hopeful and full of some good news, great tunes and the start of the process of closure. A lot of movement this week with things that have been on hold that are going forward. That is exciting and terrifying, at least in the case of my teeth. I had my follow up appointment with the dental surgeon assigned to me at the clinic and turns out that the three implants I need are just the start of it, I can’t even keep track of how much else he tells me needs to be done: there are apparently problems with my existing implants (which I didn’t think was possible) and loss of bone needing to be corrected and other things; all in all my mouth is a mess! Writing this I am reminded of my father and his squeamishness about anything dental and how it is better he isn’t reading this, as much as I wish he was still here. How much I miss him! And how much I wish my teeth were in better shape, and more, that dental work was covered by health insurance. After all, our mouths are part of our body. It makes no sense that my decent health care plan covers mental and physical health from head to toe with the exception of that big complicated mouth. ”I do not think it is too radical an idea to say that keeping teeth in your mouth should not be a luxury.“ as Bernie Sanders said regarding a failed attempt to have dental care included in Medicare. Anyway, I’m moving forward as much as I dread it.

On a more positive note, V has been accepted into the good day program we want him to attend, which is a huge relief.  Now there is the issue of getting transportation so that he can have a ride to and from his group home, which is about fifteen minutes away from the day program. It’s close enough that it shouldn’t be a problem but I’ve learned that anything can be a problem. Even implants. And certainly special needs transportation. We have a few months in which I hope it will all work out.

On another upbeat and mellifluous note, T and I went out to a concert at our town’s large theater to see the singer/songwriter/pianist Regina Spektor. We haven’t gone to anything together for a while, and B stayed with V so we could attend. The tickets said that the show started at 7 so we dutifully arrived right on time only to discover that that was when the doors opened, not when the concert began. They do this intentionally so people will arrive early and spend money at the drink kiosks. So for nearly two hours in addition to  having some nice down time with T I had some extraordinary people watching, as the 2500 seat performance space was sold out. There were families there with small kids, which surprised me. Lots of couples and groups of all cultural backgrounds, sexual orientations and ages, with the majority in their 20’s-40’s, with a sprinkling of oldsters like us. Being part of the crowd made me feel both younger than I am and positively ancient. And once the seats were filled and the show finally started, this small woman on a huge stage started singing a Shabbos song in Hebrew in a magnificent powerful voice, explaining that we were there on Saturday night after the Sabbath had ended but she wanted to acknowledge its passing. And then she mesmerized the audience for the next ninety minutes of singing and playing and the occasional charming banter in between numbers.  I knew a handful of her songs and liked them, her songwriting and her persona – the witty Russian Jewess who migrated to the Bronx and had become, like millions of immigrants, a New Yorker. The audience was filled with rabid fans – I had no idea she had a sort of cult following, albeit a very nice all embracing one I must say. It was a wonderful evening out, and a sign of things to come.

On Tuesday T and I went down to my brother’s to get the last of the items we are taking from my dad’s apartment. Quite an assortment of stuff from a good reading lamp to a 1935 two volume set of Proust’s Remembrance of Things Past and lots of photos and poems and other items that my brother and sister-in-law had carefully packed into boxes. It was great to see my brother and to have a short visit once we had packed everything up and before we headed back to get home before V got off his bus. For now I have the lamp beside my computer where I read and write in my office space and a cushion that fits perfectly on my Aunt Dina’s rocking chair. We used his binoculars at the concert as we were seated way up in the balcony. It feels good to put his things to use. I have placed on my desk a bird from my Uncle Harold. They all remind me of him, of all the wonderful family I have lost (most recently, an uncle who just died this week at the age of 98) and of all the birds we see on our daily walks with V. Life goes on and we keep their memories intact.

As always I’m trying to minimize my worries about all the unknowns and still to be determined changes, and to remain optimistic.  Days grow longer and eventually, warmer, and things keep moving forward. 


I was in DC for the weekend thanks to a generous invite from my sister-in-law C (T’s sister), who was in from Seattle for a conference and came a few days prior so we could spend the weekend together. I took the train down from Newark, a pleasant civilized way to travel, where I sat and read and looked out the window and ate the avocado toast I packed for breakfast. It’s a lovely way to spend the morning and I arrived to a bustling beautiful Union Station where I maneuvered noonday crowds to get to the metro, another civilized way to travel. Much cleaner and more modern feeling than the NYC subway I’m used to. I got out and walked a few blocks to the hotel, lugging my luggage through streets filled with blooming magnolias. I read that the cherry blossoms were starting to bloom too – everything is early this year thanks to the mild winter courtesy of global warming.  

I met C at the hotel, a nice room in a good location. It’s so great to see her and I’m on vacation! Yay! That’s how I felt as I put down my bags and headed out for the day. We walked to Dupont Circle where we went out for a wonderful leisurely lunch at an Italian bistro that is a favorite of C’s, then to the Phillips Collection, a favorite place of mine. It’s this country’s first museum of modern art, opened in 1921 by collector and philanthropist Duncan Phillips and it has a stellar collection of modern art, including half of Jacob Lawrence’s Migration series (which documents in paintings the movement of black people from the south to the north, where they went for better job opportunities and freedoms), and a Mark Rothko room. The docents were friendly and helpful and it really felt like being in someone’s home, albeit someone very wealthy and with great taste in art.

Back at the hotel I check in with T – they’ve had an easy afternoon and V is in a great mood, so I’m relieved. I don’t want to feel guilty for having this time away. I rested for awhile and C caught up on emails, and then we went out for arepas, heated corn cakes with various fillings (we choose vegetarian options that included black beans, cheese and fried plantains), gluten free and delicious. By 930 I was ready for bed since I got up so early in anticipation of my travels.  

Saturday we’ve made reservations for the Museum of African American Culture and History and we headed up late morning to wait in line for entry and then again to start in the museum’s basement which began its journey in the 1400s with the first slave ships and worked its way through to the present time (although we only made it to 1968 – after several engrossing hours we went to use the bathroom and get some water and they wouldn’t let us back in to the exhibit which was too bad, but then, we had covered over five centuries…: ) The place is jam packed with a truly diverse audience of all ages and races, and history comes to life with clear concise narrative and artifacts and photos to accompany them. I came away with a feeling that places like this really should be required viewing. As cliched and idealistic as it sounds I think we’d all be better off if we took the time to stop and learn about other people’s stories and experience. Knowledge can be life-altering.

After the museum and all that standing and being enlightened to the injustices of the world we left and walked to a vegan restaurant where we had delicious gluten free pizza with cashew cheese and looked up at cheerful Chinese lanterns suspended in the alleyway.  Then more walking back to the hotel to rest. Resting is part of travel these days. Resting is a good thing whatever your age, just more essential as one grows older.  A small price to pay for the privilege of aging.

Sunday morning, Daylight savings time will mean it’s lighter later and I sleep in past 7. I always look forward to that change. After breakfast we head up to the Portrait Gallery which is great – more varied and interesting than I expected – with a lot of lovely paintings of people I admire, and others I’ve never heard about but am happy to learn their stories.

Then we head down to the tidal basin with its many famous monuments. The cherry blossom watch says the blooms are at stage four which means that they are budding, although when we get there I am disappointed in the lack of color – they are just starting to bloom, still not close to peak blossoms, and it’s grey and drizzly. Still, it’s wonderful to be there, with lots of school groups and families everywhere we turn.

When I used to travel a lot part of the goal would be to do untouristy things, to blend in to whatever city and country I was in, being as close to a native as possible. But this whole weekend has been one tourist site after another and it’s a pleasure. There’s a reason these museums and monuments are popular, that people just like us plan visits to the same places.  

On our way back to the hotel from our memorial walk (Lincoln, Vietnam veterans, MLK and FDR) we catch a cab – it’s raining at this point and we don’t want to wait for an Uber or walk to the metro – and get into a political discussion with the driver, who has very different views from ours.  Except for seeing our last disgraced president’s image in the portrait gallery – I couldn’t bear to look yet caught him out of the corner of my eye – it’s the first time the darker side of our political reality has reared its ugly head during this weekend in our nation’s capital. I’ve steered clear of any of the contentiousness that stimies progress there, steeping myself instead in art and culture that is illuminating and uplifting. 

There will be plenty of time to catch up on the state of the world on the train ride home, I tell myself, although I chose to just skim the more depressing headlines, focusing on the Oscars and other lighter fare. I’ve had a break from my normal reality and I want to keep my sense of optimism as long as I can, to relish the camaraderie and fun of a girls’ weekend away. It’s been so lovely to have a few days with C, who I don’t get to see as much as I’d like.  I take turns reading and writing this while looking out the window as the world goes by, rejuvenated from a welcome break.

time in the dark

I went to BAM (the Brooklyn Academy of Music) this week to see Pina Bausch Dancetheatre Wuppertal. Bausch was a German choreographer who died in 2009 and there is still a company that performs her work. I’ve seen them every time they’ve come to Brooklyn since I was about 25 so I’ve been to a lot of their performances! It’s been six years since they’ve been here so when I received a postcard about their upcoming gig I jumped at the chance to see them again. I got in touch with my cousin B who also likes to go to dance and who I’ve seen them with before. She very nicely drove us there (and drove very nicely – I can’t imagine going through tunnels and city traffic and crazy drivers but she grew up in the city and learned to drive there and drives like a pro.)

On the way in my cousin pointed out how gorgeous the sky was and I snapped a few photos but they don’t quite capture the oranges and reds, how bright and beautiful it was out. I rarely see a sky like that. We made good time and arrived early. The place was packed, lots of too cool for school people in their hipster best casual outfits. I’ve given in to comfort these last few years, dressing up means wearing jeans and a nice shirt. I wear my Avia gel soles everyday. I used to not go out to an event without some Kohl under my eyes and lipstick on and a bright scarf to offset black clothes, but those days are long gone. I’m older now and I don’t care as much how I look. Feeling at ease is all that matters.

It wasn’t one of their best performances, it was really long – three hours – and at times repetitive and lackluster – yet I was still enthralled. I like being a loyal fan the way others are devoted to sports teams, following directors and choreographers who are my favorites through their ups and downs. I’d see Basuch’s next visit to Brooklyn in a heartbeat.

BAM is a wonderful venue and we sat in the mezzanine in great seats to capture it all. In past performances there’s been more humor, more interactive dance that left the audience dazzled and amused, but the crowd was still captivated. No pictures allowed (I was reprimanded for snapping this photo before the performance started) and cell phones off, there was nothing to do but take in the spectacle before us. It was a relief to not have other distractions beyond the tall guy seated right in front of me. I leaned a little in one direction so he wasn’t a problem.

I haven’t gone to a movie theater in a while, since pre-covid, and I’ve been to the theater only a few times. It’s something I miss a lot. To turn off the damn phone and be in a space with other people and share a viewing experience. These days I watch movies at home, by myself or with T. We pause when needed or watch a really long film in two sittings, we take a break to get something to eat or use the bathroom, we watch at our own pace. We don’t sit still for three hours – with one intermission where everyone gets up at once and there are forty women waiting to use a bathroom with five stalls. And then we all sit back down to watch the rest of the show, the fun and lighthearted, the less interesting patches, the music that didn’t quite grab me enough most of the time. Still, it was wonderful to leave my life behind for three hours in the dark, surrounded by strangers all in the same space, attentively watching, wanting to be transformed and even if it came up short, a delight to be there.

too much stuff

I’ve been dealing with a lot of stuff lately, literally. I finally cleared off my desk last week. It was all cluttered with papers and mail and such and it didn’t really bother me but it’s so much nicer now. I was motivated by reading the book The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter after my father died. It’s a charming little book by an older woman (she repeatedly refers to herself as between 80-100) . I was worried she’d be like a Scandinavian Marie Kondo and while there are some things in common: keep the things that bring you joy and get rid of the rest, there is more humor and forgiveness in her tone. (Meanwhile, I recently read that now that Kondo has three kids she is admitting that her house is often a mess, just like the rest of us.) The author of Swedish Death Cleaning has lived long enough to experience a lot more: she raised five children, now has grandchildren, and doesn’t want them to go through what she did ridding herself of her parents’ stuff.

I thought of this when I went down to help my brother and sister clear out my dad’s apartment. They did the bulk of the work as I took a train down and was only there for the day. They got rid of fourteen boxes of stuff as well as lots of other clothes and things to give away. My parents were far more organized than I will ever be and still there was a lot to go through. We divvied up a lot of things, including thirteen boxes of photos. We are each taking some and will eventually go through them, scanning the pictures we want to keep and getting rid of the rest. While it was bittersweet, a kind of denouement, there’s been much in the process that has been healing. I feel so close to my siblings and in-laws. I feel lucky to have such a loving devoted family. One of my dad’s good friends stopped by and I realized that we’ll likely never see her again and that made me sad. His wonderful life at the Quadrangle, the place that he lived the last twelve years of his life, is gone. He is no longer with us. I have a lifetime of good memories and now, so many things that go with it.

My niece and nephews and B – my dad’s grandchildren – all took some stuff too, practical things like glasses and plates and pictures and other items they can use or display in their homes. So his memory will continue on. I took a lot of items, a lamp and books and his genealogy research on the family and slides to scan and all those photos, binoculars I can use when I go to see dance or theater, which hopefully I will have more of in the future.. The things that are being donated will go to a fund that helps residents who need help with paying their rent. Even in death my father wanted to help out those in need.

There were five of us clearing things out and still it was a lot of work. Meanwhile I am on my own. It’s hard to be motivated to keep going, to attack other piles of things. We have bins full of files related to V and I procrastinate attacking them as it brings up so many difficult memories and complicated feelings. Years of trying so many therapies and treatments that didn’t work, and all the evaluations he’s had that never touched on his innate and unique forms of intelligence. When standardized tests only measure verbal or math skills he is off the charts, barely making any percentages in ability. If only they measured other forms of intelligence such as musical, spatial relations, naturalistic. These are all real types of intelligence according to developmental psychologist who study such things yet they are often overlooked when we measure someone’s intellect. I will save these bins for last as they’re painful to look through, but I’ll have to get to them eventually.

I’d like to move at some point after V is settled in his group home, to find an apartment or condo, something far more low maintenance than a house from 1907 and a big yard. But the process of emptying out a basement and attic of stuff will take a while. My goal is to conquer one little corner of space at a time, to get back to sorting the keep, give away, and throw away piles like we did at my father’s place.

For now I sit at my nice clean desk and see the remnants of snow that is melting away. I took photos right after it fell to have that memory of its ephemeral beauty, to remind myself of the one snowfall of the season. I’m horrified by global warming and yet this unseasonably mild winter has been a godsend for life with V, allowing us lots of walks. I plan on taking the same approach to my stuff: taking pictures of those items I want to remember and getting rid of the rest. It’s a long process ahead and I hope to stop procrastinating. Every day I walk past boxes and bins of my writing and other papers and old photos and clothes to be sorted and the wastebasket and bags beckoning to be filled. Stuff is everywhere and eventually I’ll have to get to it all. 

change is coming

We had our meeting with the agency where V is being offered a place in a group home and it looks like it is going to happen! There were three representatives from the agency who gave a presentation and spoke about the new house that is being renovated. V was the only member of the new home present at the meeting but two other parents were there without their kids (one was sick and the other didn’t want to bring his daughter, who V has already met at the respite house.) The group home won’t be ready until later this spring, a newly renovated house for four residents, two women and two men. We were sent the floor plan and address and went by to look at it, V’s future, and ours.

I’m relieved and excited. If things work out as planned he will move in June and we will have a summer unlike any we’ve had since he was diagnosed. Team V has been a full-time job and I’m ready for a new chapter with no more caregiving for T and me. We will have much more time for ourselves, and for each other. We will still be Team V, visiting him weekly or more often, but we won’t have all the duties and tasks that have taken over our lives for two decades. 

Of course V is more than that, more than duties of caregiving. He’s a lovely lovable bright and funny guy. But the fact is that even though he has school on weekdays he still takes a huge amount of my focus and energy.  I am so ready to shift gears, to have reading and writing and friends and family take center stage.  

Mixed with the excitement I have concerns and worries – I always do – about how he will adjust. Will he get along with the other residents? Will they have a good house manager and caring aides? Most importantly, will he be happy there? There is much that is still unknown and yet I’m trying to be positive and hopeful.  V’s life will be altered dramatically and so will mine.  

I just finished reading a memoir by a neurosurgeon who is diagnosed with advanced prostrate cancer. I read a rave review describing it as a book about the doctor becoming the patient and learning to face death. I read this while my father was dying and yay libraries, I immediately put in a reservation. When I received notification that it was available to pick up, my father had since passed away and I thought it would be a good read, that it might in some ways be reassuring in its honesty. While it’s beautifully written and frequently fascinating, the writer is just shy of 70 at the beginning of the book and focused on his old age. Part of this is spurred by his early retirement, which as he so well describes a surgeon needs full command of his hands and there being attuned to his mind – both need to be exquisitely quick and deft. 

And while everything he had to say about the decline of his body and cell degeneration and other natural progressions of age rang true, I found myself growing increasingly frustrated at how he was viewing 70 as old age – not just for him, but in general – when to me and in my family, it is just a number. My aunt and uncle are 95 and 97 and still vibrant people. I have another uncle who is 97 and still sharp as a tack. My father somewhat begrudgingly retired at 94, which is quite unusual I admit. Yet I have lots of older cousins and neighbors who are all active in their 70’s and 80’s. I need to believe that I have years ahead of me to pursue a lifetime of passions still to be reacquainted with or explored. There’s no way of knowing for sure but I’ll keep on walking and eating well and getting annual check ups and hoping that I’m one of the lucky ones. There is no guarantee.

For now, here’s to change. And hoping it’s a good thing. 

bodega days

After the weekend with V comes a big exhale. We’ve lost our home therapy now that he is 22, which makes no sense – he doesn’t need it any less, if anything it’s more important as he continues into adulthood – but then, health insurance has long been a bane of our existence.

So we are now on our own, without any help facing whatever comes our way. There are mellow days and restless days and no way to predict which we will have. When V is mellow, which is rarer, he can sit at the table or out on the enclosed porch with his iPad or listening to music or just staring out the window. Those days are such a relief. I can read or listen to my favorite radio shows (like Wait Wait Don’t Tell Me) or clean the kitchen. We have a leisurely breakfast and go out to the supermarket and later for one long walk. We come back home and eat and relax. 

Much more common are the restless days.On restless days we have one or two walks where we drive to the lake and take a loop around it. Then we come home and soon he asks again for a walk. Since we don’t feel like getting back in the car and he refuses to take a longer walk in the neighborhood (there are a couple of parks nearby where we used to walk repeatedly but he now sadly won’t go to either) that means going around the block, which means stopping in at the bodega on the corner of our route.

He’s been going to this bodega since he was in elementary school and had a home aide who would take him there and he’d hand a quarter to the nice person – there was an older couple who ran the place and usually one of them was behind the counter – and work on saying hello and thank you. They smiled warmly and called him papi.  

Many years later the store is under new management and most times we enter there’s the same young man at the counter. V gets his small bag of chips or popcorn and we give him what is now two quarters. I smile at the man and he looks at me, stone-faced and surly.  He’s never once returned my smile.  I tried to dismiss his manner as shy or reticent, yet I’ve seen him smiling and joking with other customers.  

Yes we often are in the store several times in a restless afternoon and yes I know chips are not healthy and yes it would be better if V would listen to us and walk a different route or skip the store but you try getting a young man with severe autism and pathological demand avoidance (which is similar to ODD: oppositional defiance disorder) to alter his routine, or tell him he can’t go outside anymore. Just this past weekend he was pulling on my arm, not knowing his own strength, imploring me to go on one more walk. Yet I couldn’t bear the thought of going back in that store.

I don’t know why it bothers me so much. Well maybe I do. I’m too thin-skinned for this life, always have been. When V was younger, like during his prime playground-going days, the glaring and gawking were constant The other moms I knew with kids like V, those with special needs and behavior issues, had similar experiences but they shrugged it off. People can be assholes they’d say or something equally dismissive. But I never got there. I’d spent my whole adult life being cheerful and gracious and having most people respond in kind.  The world was a friendly place.

After V’s regression that all changed.  When he was really young people were generally tolerant and understanding.  He’ll catch up, boys are often slow to develop they’d say. They were wrong about V but I appreciated the sentiment. As he got older his complete lack of social skills or sense of appropriate behavior was cause for constant reprimands from strangers. He had trouble waiting his turn to use playground equipment; he’d get too close to other kids. He’d stand on chairs or try to climb over seats when we went out to eat. He’d fall apart when we had to stand in line at stores, he’d grab food and open packages before they were paid for. He required – and still does – constant monitoring.  It’s always been stressful and exhausting, all the more so for the “watch yer kid lady!” comments that were the frequent soundtrack to our days.

And so the unfriendly bodega man bothers me more than I wish he did. It’s this cumulative sense of not being welcomed in my community, of getting the message that we are an annoyance, at best to be tolerated.  We mostly limit our outings now to those that are familiar and friendly: the supermarket with its special needs baggers and cashiers who are usually understanding, the Mexican restaurant where the waitress is so lovely and patient, a place like Costco where the cavernous space seems to let in (well, as long as you have a membership  card) anyone, a melting pot of shoppers where V blends in to the crowd, the one park he will go to where I say hello and smile anytime I meet anyone’s gaze.

But a walk around the block involves the bodega, the place where we are considered a nuisance. It’s not as if we’re shoplifting, or V is being disruptive, he’s just a regular weekend presence, pleased to be in a store where he has the freedom to walk down the snack aisle and choose his cheese popcorn or whatever his salty crunchy snack of the moment is. I can’t change anyone, all I can do is model what I want to see in the world. And so I smile and say thank you every visit, not expecting anything in return but doing it all the same. 


Hope: to cherish a desire with anticipation: to want something to happen or be true

This week V turns 22. It’s hard to believe he is so old. Birthdays are a blessing and cause for celebration. I embrace the unique person V is with love and acceptance. That’s when I’m skillful enough to stay in the present.  As he gets older and enters further into adulthood, the joy mixes with anxiety and fear as well as hope about the future.  What’s next?

The agency that runs the respite house where he has stayed several times, most recently during my dad’s funeral, is opening a new group home which V is being invited to join.  There are a few more hoops to jump through though. 

First, we have a meeting scheduled next week where we get to meet the other prospective residents and their families, which rarely happens. (Usually new residents are just placed in a home where there is an opening without this opportunity.)  These are people he potentially will live with for years to come so I really hope that everyone seems compatible. 

We also are waiting to see if he can continue at his school through June graduation and then attend the new adult day program affiliated with the school, if he is admitted there. He has a trial half day coming up later this month. I am on the board of this adult program, started by a group of parents from his school, but that’s no guarantee he’ll succeed there; most of the current participants have far better social and verbal abilities than V. Yet we’ve seen in past circumstances, like in a social skills group he was in for several years, that he can rise to the level of other participants. I hope it all works out.  

To V a birthday doesn’t mean much. We go out to eat or have a dinner at home followed with a cake with candles he can blow out as we sing happy birthday. We teach him the new answer to “How old are you?” It sometimes takes him a while to give the correct response. He has little awareness of how his life will be changing, although staying in the respite house has given him a flavor of how it will be when he doesn’t live at home. As emotionally immature as V is, he also seems ready for the change. He’s easily gone there, with no trepidation. I see that as a good sign.  

Still, I worry a lot about what life will be like for him and how his potential new home will handle difficult times, like this past weekend when we had such frigid weather that even the most intrepid walkers like us were stuck inside. What will they do with him all day? Will they at least try to engage him with indoor activities? Will they take him out for a drive or to the store like we do just to get him out of the house?  How will they handle the pacing that replaces the walks he yearns for? The honest truth is we are often inattentive or just plain worn out at the end of a twelve hour day inside. But we still let him know that we are right there with him, understanding his frustration.

They will hopefully be more energetic at his new home but will they be empathic? They, meaning the direct service staff, is a big issue.  Aides are not paid enough; this is not highly desirable work. The aides at the respite house have seemed caring but there’s no way of guaranteeing V will get the attention he needs beyond making sure that he’s bathed and fed and his basic necessities are tended to. 

The biggest and most significant unknown in the future though is will he be loved? I believe V can be well cared for but will those caregivers love him like we do? With all his challenges we still find him so lovable, will others too? That’s my hope and daily prayer. I want him to be in an environment where he is treated with loving kindness, a place where he can thrive.

We’ll just have to wait and see about the future, doing all we can to find V a home and services that enable him to flourish and continue to be a generally happy content guy.  For now we say Happy 22nd Birthday. I hope it’s a good year.

Life Goes On

Healing: the process of making or becoming sound or healthy again

I’ve taken a break from writing here while I sat shiva, the period after a family member’s burial that’s meant to provide spiritual and emotional healing. Shiva translates as seven; Jewish families traditionally sat shiva for a week, though in recent years that time frame is often shortened to several days. My father died last Thursday and as I sit here I have the shiva candle beside me, which I lit on Friday upon my return home.

His funeral was a moving affair, with family and friends in person and virtually.  I’m touched at the relatives who make long journeys to join us: my cousins fly in from Chicago, other cousins drive from Vermont, and the DC area. Most come from various parts of NJ and PA.  Old family friends that I haven’t seen in ages show up. I appreciate their presence more than they can know.

I also appreciate the Jewish traditions: for a week the immediate family members wear a small black cloth over their heart that has been torn by the rabbi; at the cemetery everyone who chooses to participate shovels dirt into the grave; the shiva candle is lit; we hold a Zoom shiva where we remember my father and hear wonderful remembrances and poems that highlight his attributes. For all the Zoom burnout I feel, it’s a wonderful way to have people who live all over the country gather together in a meaningful way. It’s so healing that part of me wished it had gone on longer, like an Irish wake going into the night. I savor every story and yearn for more of them. But there will be plenty of time to hear those tales, they will be meted out in doses, like medicine for the sick.  

My relationship to death has changed so much as I’ve gotten older. Where I used to long for the solace of certainty, envying friends who believed in an afterlife or rebirth, I now embrace the mystery of life.  We don’t know how we dissolve into the universe but we do know that we are remembered by those we leave behind.

I think of my father at every turn as life goes on this week.  A few days ago T and I went for consecutive appointments at Rutgers Dental Clinic. We need so much work we had considered dental tourism (yes, that is a thing), going to Costa Rico or Mexico where you can get excellent dental care for a fraction of the cost. But Newark is much closer than Guadalajara, and going to the clinic will save us many thousands of dollars without worrying about getting on a plane for follow-up appointments. 

I wait ninety minutes just to get an X-ray from a nervous student. I feel for him, but this is my mouth, a precious commodity. It makes me a little anxious. Yet the dentist who we finally see is reassuring; yes, there’s a lot of dental work ahead but it will be taken care of, fortunately by other experienced dentists and not students, who will be there to watch and learn. I don’t mind having others in the room, it won’t be as intrusive as it was at B’s birth, as a doctor unexpectedly brought in a large group of medical students to watch as the midwife gently helped in the delivery after 20 hours of labor.  

Among the qualities not mentioned amid all the attributes of my father was the fact that he was terribly squeamish, especially at the dentist. I remember my mother getting calls after his appointments: “Mr. H got lightheaded and is resting now.” One time he even passed out!  As someone who has very bad teeth, my dad would shudder at the mere mention of my latest dental procedure. 

I likely would have told him about this appointment but not the details, how I need three more implants and a bone graft and T needs four or five implants.  It is not how I had planned to spend the winter, or our savings, but that’s life. A time to be sick and time to get well. 

I dread all that work but it will be good to have it done with. There are so many things I have put on hold through these last months. It’s not that I didn’t have free time yet I felt on hold, anxious and not at ease.

Next week I’ll go with B, now a healthy handsome 24 year old none the worse for the crowded spectacle of his birth,  back down to my father’s apartment, where we will bring back items that we have claimed.  I am a very sentimental person, which is reflected in what I am taking: framed photo montages from both sides of my family; a photo taken by my aunt of a Block Island wave crashing on a rock; the much-used Scrabble set (Oh that I had my father’s recall of two letter words: ); the containers from which he poured his mixture of cereals each morning. That last item seems like a bit much but as my brother-in-law says, it will bring me a bit of joy each morning. 

It was hard to be in the empty apartment, to see the familiar furniture and the things my brother and sister purchased in the last year to help him out as his senses diminished: a good reading lamp, the recorder that played books on tape, an Echo which played soothing music on demand – not having one I liked the power I felt saying “Alexa, play Bach”.

People have been asking me how I feel and all I can say for now is sad, lucky, worn out, hopeful. Life will move on with a swirl of memories, a cascade of pictures that I can touch and others I can only imagine. Like millions of people before me I have lost both parents, wonderful people who nurtured me throughout my life. Like them, it will take time and love to heal. My teeth will be fixed and my heart will mend. Life goes on, one blessed moment after another.

Gratitude and Grief

Grief:  deep and poignant distress caused by or as if by bereavement

A ride on Amtrak is a lovely way to end an emotional few day visit to my father, who is dying. I have no outpouring of tears yet although my grief is palpable. I long for that catharsis that crying brings but for now I’m in a holding pattern, wondering how many days he has left. Whether it’s one day or a week, it’s imminent. Sitting in a seat with no one next to me on the train is the ultimate way to have privacy in the public square, a winning combo. I have a New Yorker containing some of my favorite writers but I cannot concentrate. Which is where windows come in. I can gaze at the landscape going by at a steady clip and let my grief and gratitude wash over me. I’m sad. I’m blessed.I cherish this segue into my ordinary life with T and V picking me up at the station.

The fact is the ride is too short; I’d welcome more time to process these complicated feelings and yet are they? We love each other so much, which is as simple as it gets. My siblings and I are all weathering this storm in our own way.

The end of life though fortunately free of physical pain for my father is painful nonetheless.  The end of life with round the clock care. The end of life with moments of lucidity, hours of reading to him, short conversations. He seems to absorb a lot yet it’s hard to know. Bedbound, weak, practically blind, limited hearing – no, growing old isn’t for sissies. 

I say my goodbyes and I love you – I can’t say that enough – and in a barely audible rasp he says it back.

I wrote that last week and here I am after the long weekend home and another soothing train ride back to Philadelphia where my brother picks me up and we continue on to see my dad with my sister, who has been here for over a week, spending days and nights with my dad, tending to his needs and coordinating his help. It’s a lot and she does it with competence and caring. My brother has been amazing too, so devoted and helpful; as the one who lives closest he does the most for my father. He does it with a generous spirit and utter devotion. I am staying with my brother and sister-in-law who are always the perfect hosts, which helps to assuage the sorrow in my heart, the grief of watching someone so beloved fade away.

I remind myself that this ending is a stage in a long happy life, that for 94 of 95 years he was sharp and wise and funny and kind, that he only retired a year ago! How amazing is that? Still a long full life does not prevent the heavy feelings that come with loss. We will miss him. I miss him already.

Last Thursday the hospice nurse said it was a matter of days so I hopped on a train that same afternoon.  Today she came back and said timing was unknown, that dad was an anomaly.

So it’s all a mystery, we’ll have to wait and see. What we know for sure is the end is near and I’m so appreciative for all he’s given to me and the rest of the world. In all his modesty he is a great man and for that I’m grateful. And full of grief that is the sign of lasting love.

Breaks and Hope

The holiday break ended at last, V went back to school on Tuesday. As is always the case with long holidays off from school it is a challenge to have so many days without the structure with which he thrives. So it was good to have four days of mini camp in the middle of the break, something to occupy him with art and music and cooking and peers and familiar adults. Still, it was a long stretch from December 23rd to January 2nd, lots of hours and days to fill. The best I can say is that we got though it, as we always do.

Wednesday I went into the city – I really needed a break from the break and a change of scenery. I met a friend near Union Square and we sat outside eating lunch on an unseasonably warm afternoon. It was great to have that city energy, walking down to meet her, the Greenmarket in full bloom despite it being the middle of winter, sitting outside and watching people go by, feeling completely removed from my normal daily life. It was good to see a friend who was understanding that I was too depleted for any witty repartee, that all I wanted to do was sit and eat my lunch and watch the world go by and forget. My reverie is broken by an email – yes I took a break from my unplugged pleasure and checked my messages – just in case. It’s from from V’s case manager M, who expresses concern that before and since the break he has been somewhat anxious and restless. Can’t I get a break? Is my first response. I’m sitting in a comfortingly familiar neighborhood dissolving myself into the lives of others as goes that Auden line that haunts me so often. Then I let it go; it’s the end of the school day and it can wait until tomorrow to discuss.

Thursday I speak to M, who explains that V had a few rough days before the break – his teacher and M think it might have been from all the holiday parties and festivities. I didn’t know about these things, although I shouldn’t be surprised, as our school staff is very creative and love coming up with all sorts of activities to celebrate holidays. Yet for a sensory-sensitive person like V – there are plenty at the school, since it’s for kids with learning challenges – the parties and games can be too much. I have no explanation why he’s still exhibiting these behaviors after the break, when he’s so glad to be back at school. As is often the case, the school comes up with a pat reason for behaviors when I think there are so many factors that come into play, that it’s often a mystery as to why he acts a certain way. Still M reassures us that all in all he is doing well.

Back to Benji’s on Thursday night where we discover that they have excellent french fries that V devours much as I wish he would eat his guacamole or share our burrito bowls. Instead I choose to accentuate the positive, how at ease he is in a restaurant with all sorts of strangers around as well as the friendly waitress he may or may not remember. He seems fine today, none of that anxiety or restlessness I need to be on the lookout for. I hate the constant monitoring and measuring that is expected of parents of kids with special needs. I appreciate any time that feels relaxed, like in the Mexican restaurant where V eats American food. 

Friday finally comes, the day I have been fearing and worrying about, a scheduled Meet and Greet at the agency where V had respite several times last year, where they have a spot in a new group home that will open in the spring. We pick V up at school to take him there. His teacher comes running up to let me know that V had a great day. She thought I’d like to know that before the weekend, that it would be reassuring and she’s right. It’s such a relief to hear good news and I appreciate her taking the effort to share that with me. 

It’s also good to hear on the way to our meeting, where V will be observed while we have our conversation about the group home. We get to ask all sorts of questions and I feel reassured that it could be a good place for him. Still, there are a lot of unknowns. Who will the other residents be and will they get along? Will the agency provide transportation to the day program we want V to attend? (The agency has its own day program that they provide transportation to but we are less interested in it than the one affiliated with his current school.)

Overall it is a positive Meet and Greet – V is generally calm, although he gets restless near the end of the meeting – it’s a long time to sit and listen to a bunch of adults gathered around a table talking, even if it is his future we are discussing. I don’t know if it will work out but it is a distinct possibility and that feels good. How much we yearn for a loving stable home for our grown child with so many challenges, as well as strengths we hope will be acknowledged. Perhaps this is the place where V can be happy and live a fulfilling life.  That is all that really matters. If it were to happen it would change our lives drastically. I think V is ready for the change, I know that I am. 

In the meantime we’re back in a routine, with some structure and the same daily struggles and small achievements, the ups and downs of life with so much that’s unpredictable. Yet good things are possible. We’ll just have to wait and see, doing our best to live in the moment