December: in person

It’s December! How did we get to the last page of the calendar? Did it go too fast or too slow? We each have our own answer to that but hopefully some can say it felt just right: it didn’t race by and it didn’t lag for what felt like endless days. I had a bit of both but I’m trying to stay focused on this page with 31 days to fill, not all the ones that have passed.

For this month I’ve decided to revive the annual Chanukah party I had given for a few years pre-pandemic, Ladies who Latkes, a gathering of some women friends and neighbors who stopped by for good homemade latkes with all the sides. Last year out of caution I had just one family of neighbors over and then brought latkes to my other neighbors; the year before that just some take-out; this year finally it will happen again. I so crave time with friends, to break bread/potatoes together, to feel that bond of sisterhood if I may be so earnest.

Yes, in December for once I will be the host. Rather than a grateful guest I’ll be the one welcoming people into my home, the one that has wonderful smells coming from the kitchen, with enough food and drink for 8 to 10 people who can all fit around our table once we put the other board in it.  

I should do this more often/I should never attempt to host in this old house are two warring thoughts.  I don’t socialize much beyond an occasional breakfast or lunch with a friend; I rarely have people over. The fact is that the only regular visitors we have are V’s home therapy team. I make sure that the house is presentable for them – sweeping the floors and wiping down the counters and table; as for clutter and disrepair that we have grown accustomed to, well, they see that too. They see the results/remnants of what happened during that long pandemic stretch of being inside together with a young man who had far too much time and energy as could be contained in such tight quarters. Much of that deconstruction and disrepair remains because while needed routines have returned to our lives thankfully (school and home therapy), V is still our deconstructivist, and so remain drawers taken out of the dining room and bathroom furniture, the photos taken down before they were destroyed once he figured out how to take apart frames, the pictures not hung back up on walls; added to that the collection of V’s leisure activities – a few games he will marginally play. Everything is out and about from all that we do with him, and all that he has done with the space downstairs.  

So there’s a friction between wanting to host a small party and some issues with the venue.  Our clutter issue is compounded by living in a small house built in 1907 when people had so much less stuff, particularly clothes as is apparent by original closets that hold 10 items at best. Yes, the initial charm of living in an old house has long since paled. I still understand their appeal, it’s just that it is a bit much in terms of maintenance for our already high-maintenance family.  

Alas I am the one living in the old house and if I can’t achieve a robust makeover I can do my best to make the space a haven: for good food and conversation and connection. I’m hoping camaraderie overshadows any structural defects and others share my gratitude for in person time. I felt it on Thanksgiving and I look forward to feeling it again over the course of the month. (In addition to my get together I’ll be going to a larger Chanukah celebration with cousins, a cherished annual tradition) 

Much of the bond I have with friends and family is over the span of many miles, from Maine to PA and places in between and all the way to the West Coast. This blog helps me to keep connected with them. I cherish these connections and appreciate every online visitor, and yet I long for more face to face time. So socializing with people I like and don’t see very often is something to look forward to as we fill the cold days of December, a challenge as V has been very restless yet doesn’t last long in frigid weather given his refusal to zip up.

I will do my best to declutter and make things more organized in the coming weeks. And then I’ll just hope that the spirit of generosity with which I host overshadows the defects in our home, the place where we talk and eat and watch TV and read and listen to music and clean up messes that happen when people congregate in a small space.  The place where we do it all again and again, with as much love and kindness and patience as we can.  It leaves much to be desired but still it’s home, and I look forward to welcoming more people into it later this month.

gratitude and mysteries

Just wrapping up from the long weekend, getting a chance to exhale.  In planning for Thanksgiving I always vacillate between first and foremost, my gratitude and joy in getting to see my family. Especially since the pandemic I am even more grateful for time in person with those I love. Just being in the same room, breaking bread as best we can, delighting in each others’ company. I feel excitement to see four generations together under one roof, that of my brother and sister-in-law, from my 95 year old father to my 2 year old great-nephew.  

And second, always in the background the unspoken concern, How will V do? Always a lurking unknown that we have to wait and see. I have a vast range of experiences from years past: most recently, he was so mellow at Rosh Hashanah, and I let myself hope that maybe we’ll have a repeat performance, if we’re lucky,  And then I flash back to that year when V had a total meltdown en route and we had to pull off the road and stop the car in a beautiful placid neighborhood on Thanksgiving morning as he is inconsolably in his own world of some unspoken distress, something he cannot explain and we are left to conjecture. Somehow with a combination of the right food and music and love in our doing the best that we can way, he calms down enough to make the rest of the trip. That was rough.

How he will do is softened by the hospitality my brother and sister-in-law always show, affirming how we are family and share experience for the hours we are together, our separate circumstances intertwined. This year’s questions include: Will the toddler nap? Will the nonagenarian nap?  Will V ever settle down? The answer to that last one is no, he remains on the move the entire time we are there. Fortunately T and I work well as a team, we go into trading on/off mode of V duty, where one of us keeps track of him, or takes him for a walk and the other gets to sit and eat and try to have a conversation. My family is very understanding. Still it is stressful. Year in and out, one event after another I have no way of predicting how he will be, so much is a mystery,

Hours earlier I start the day as calmly as I can, getting up at 630 to meditate on loving kindness and presence because I know I can get caught up in daily stresses and lose sight of what really matters. So I shower and dress – informal my brother says, as if there were any other way to dress these days. No, I’m informal to a fault. For me getting out of sweatpants and putting on a scarf heralds a step up from home attire (a nice term for frumpy), something that was once a mainstay of my appearance,that I inherited from my aunts, bright scarves that perked up my mostly black wardrobe of years back.

From that era I get out of the Audrey Hepburn t-shirt (Breakfast at Tiffany’s) that is falling apart but I can’t bear to part with. It’s so soft and comfy, perfect with sweats and crocs for baking pies. Pumpkin and cheesecake in a pie tin so technically I can say I’m bringing two pies. I read both recipes closely, make a general game plan and then get into a groove: first I’ll prep the pie dough and get it refrigerated and then a graham cracker crust that will also need to chill so have to make more room in the fridge and so on through things that have to be room temperature (I’ve remembered to take out the cream cheese bars as soon as I woke up to soften them up). I’ve done the trick to gently heat canned pumpkin in a pan so that it will taste more like homemade and of course freezing butter and then using a grater when recipes call for pea size pieces of butter in a dough, and so on. Following instructions from recipes and the community of fellow bakers who offer up helpful tips.

But despite following a recipe to a t my pie crust is an epic fail. Ice cold butter and water, flour measured carefully yet it refuses to congeal even after being well chilled.  I make several valiant efforts to resuscitate, to turn it into a pliable dough but alas it’s futile. I take out the pre-made shell that was the plan b I thought I wouldn’t need and begrudgingly unroll it onto the pan and then crimp the edges. How did this happen? I feel dejected, but chalk it up to the mysteries of life. Sometime I’ll have a crust making lesson with someone and get my confidence back.  For now here is a photo of a baking disaster.

Fortunately I know how to make a good graham cracker crust and the fillings turn out fine so the pies are a nice ending to a fabulous meal. Everything was delicious and our wonderful hosts even had fish for me since I don’t eat turkey anymore. Alas V is restless and on the move the entire time so eating talking walking eating talking walking is the order of the day. I am thankful to have T to share V duty all these years.  If only he sat nicely at the table part of the time it would be easier to socialize with family, to sit with my Dad or to play with my sweet and adorable great nephew, to chat with my nephews and niece in law.  He doesn’t eat a thing, doesn’t even touch the pie at the end of the meal.

Still I am so grateful to be with family; it’s especially dear to be celebrating with my father what was my mother’s favorite holiday. There is no traffic either way. There are no meltdowns either. I have containers full of leftovers that will make a delicious meal or two. (I love leftovers!) We find some good radio and V sits still for the first time since we arrive as we make our way home, safe and satiated from time with those we love.

keeping warm

And just like that after an unseasonably warm start to November it feels like winter.
Time to finally start wearing the heavy outerwear I brought down from the attic. And to work with V’s home therapists and school staff to get him to wear his jacket over his hoodie. He is very resistant – saying NO! And hanging it back on the hook in the morning. I send it in on the bus and write an email to his teacher. “Once again as the weather changes we have this challenge…” This is nothing new. V has the same issues year after year, he doesn’t outgrow them because they are sensory-based and hard wired into his system.

There are certain things we take for granted, like breathing. Much of basic meditation practice is focused on the breath, and cultivating awareness of how the air flows in and out as we breathe. That is the most obvious example; there are so many other things we take for granted. When it is cold out we put on a coat. If it is really cold we add hats and boots and warmer socks. Sure, there are the John Fettermans of the world, mostly guys, who can live in shorts and hoodies year round. But most of us want added protection from the elements.

With V, so many of the basics of daily life cannot be taken for granted. There is a gift in that for sure, and yet it’s also the source of a lot of tsuris [a great Yiddish word that means trouble or aggravation]. Because despite global warming it does in fact get cold enough that we have to deal with jackets. Refusing to put it on when he goes out or when he does wear it, not taking it off when he comes inside. It’s the winter chapter of life that will last through March. Oy. Yet I try not to get ahead of myself. It’s still just November.

This week is Fabulous Friday again, the breakfast for school staff that I’m in charge of. Today’s menu: pumpkin bread with chocolate chip streusel, cornbread, and blueberry muffins that V bakes with J, his home therapist. Then I pick up croissants and oranges and a few other things at the store and drop them off at school, with B’s help. The other co-coordinator brings in her share of food early Friday morning. It’s a lot of work but as with last month I aim to do it all with love and appreciation. That’s the point of the event.

Love and appreciation. I remind myself of that as I get out my ingredients and turn the radio on although I dread the top story. He who will remain unnamed is running for President again.

And then there is a segment on global warming. And the Republicans capturing control of the House. It’s all bad news but delivered in an even-handed comprehensive way that I appreciate. Public radio always reminds me of my mother, who used to listen to All Things Considered when she came home from work and got dinner ready. The radio and the oven stay on all morning as I bake and listen as best I can, as I’m concentrating on tripling my recipes. I forget how cold it is outside as the kitchen warms up.

Later in the afternoon when V is home we get him to help out using a muffin mix.  J has the magic touch with him, getting him to do things I never could on my own. As the muffins are baking J has me practice getting V to wear a hat. Over and over we go through the same routine. He is resistant yet finally puts it on. And yet not surprisingly when it is time to get on the bus in the morning – when it’s bitter cold out – he refuses to wear it and shuns his jacket too. One step forward three steps back. 

At the store we also get our free turkey which they give out every year if you spend a certain amount of money during the preceding months.  This year we are donating it to a food drive at the school. It feels good to give to others, to be community-minded and charitable. (Although if I was truly enlightened I wouldn’t even mention it : ) Still, it helps me to put my own problems in perspective. A roof over our head and enough to eat and drinkable water and heat.  Next week is Thanksgiving and I’ll be making pies and seeing family. There is so much to be thankful for.

I have my own challenges in winter but I have a way to deal with them. I start my bright light therapy, which involves sitting in front of a light therapy box for a half hour every morning after I wake up. This is used to help with seasonal affective disorder which lots of people, especially women, get this time of year. A good therapy lamp should mimic natural morning sunlight. I’m not sure if mine does but I like the feeling of the bright light when I first get up. That and a strong cup of coffee help get me going.  Then I try to get out for a walk around noon when the sun is strongest and the temperature has climbed a bit from early morning. Unlike V I have no problem putting on lots of layers to stay warm, and taking them off as soon as I get inside.  Something so simple that I always took for granted.  

The past few weeks we’ve switched from Mexican sit down to Chinese take out on Thursdays. With J’s help V gets to practice setting the table, using a fork and knife (he rarely uses knives on his own), and cleaning up after himself. It’s stuff we should be doing every day but I get lazy and I do it, if at all, halfheartedly. It’s really hard work to teach someone all those things most of us take for granted. Still, when I watch V get his utensils and plate and sit attentively cutting his chicken, something so simple is inspiring. The food is just a notch above decent but my fortune is spot on.

We will continue working with V to put on his jacket and hat and then to take them off when he comes inside. It is a process. I have learned to cultivate patience and humor, and to admit when I feel at a loss. If it was up to me we’d skip right from November to April, when spring temperatures usually make their first appearance. But since I don’t have a choice, we’ll all have to do our best to deal with the seasonal change, doing what we can to keep warm.

Savoring: city days

Things are bustling at B & H Dairy at noon on a weekday, the staff behind the tiny counter working to keep up with the steady stream of customers all wanting overstuffed sandwiches and soup. “With bread?” the waitress says each time, as if she has to ask. In fact the Latino sandwich makers/soup servers/all around everything staff wear shirts that say “Challah por favor.” I order a bowl of borscht and savor the heat and flavor. The jack of all trades behind the counter gives me a little attitude when I ask for sour cream while he’s in the throes of other multi-tasking, in the brusque but ultimately kind and decent way of many New Yorkers. I feel completely consumed by the clamor: the constant orders, the deft handling of challah bread to make sandwiches, the steady ladling of soup to full yet never overflowing. Just right. I feel so pleased to be part of this perfect urban scene. Since 1938 this little place in the East Village has served vegetarian food at modest prices. Egalitarian and delicious. Just right for a post-election day lunch. I pay, say thank you and continue walking and eating my way through New York.

This week I’ve had a special treat of staying in the city at a vacation club, gifted by my sister-in- law C. She had hotel points that expire this month and I was happy to oblige her generous offer to let me/us use them.  It’s such a wonderful break from my usual suburban caregiving life. I’m in a sweet little room in Midtown with a view of the  Empire State building.  It is so nice to be away although I’m not far. So refreshing to wake up and not have to deal with the morning routine of rousing V from a deep sleep, getting him bathed and dressed and downstairs where he is often half awake and not interested in breakfast, yet likes school enough that he runs eagerly onto the bus that comes at 8:25. I’m so grateful to C for this wonderful opportunity to be in the city.  And T for handling V’s needs so I get a break for a few days.

Self-care can involve peaceful space alone and quiet contemplation but it also can be a break from enervating routines, so being in the thick of the city is self-care in its own unique way, giving a life-affirming energy. I thought of going to museums and making plans with a couple of people but opt to be untethered to any schedules or meetings during these few days alone, to simply have hours of walking through familiar yet changed streets (where did that favorite restaurant/store/cafe go?), which has been so rejuvenating.  

I walk for miles each day, taking in a few touristy sights as well as old familiar neighborhoods. And I visit the former homes of my great aunts and grandmother, the family I used to visit most weekends when I lived in Manhattan. I walk the High Line, a public park built on a freight rail line elevated above the streets on Manhattan’s West side. Saved from demolition by neighborhood residents, it’s a public space with wonderful landscaping, lots of art and hoards of tourists. On a weekday morning there are so many people if we weren’t out in the open I would have felt claustrophobic. I get off in the West Village and walk down to the building where my Aunt Annie lived for decades, a building that became filled with a few celebrities along with all those lucky enough to win the real estate sweepstakes and have a lovely one bedroom with a river view like Annie had. She would have loved the High Line, so near to her home, one more fabulous feature in her wonderful neighborhood. So much has changed in the West Village, once a Bohemian haven now financially out of reach for all but the richest few. Still, it’s physically beautiful and I savor every moment of my time there. Then I walk back hugging the river and checking out the new parks and island and grow wistful for all those years when I used to hang out on the dilapidated piers back when none of this was here.

On Wednesday I head down to the Greenmarket at Union Square near my old apartment, a place I used to visit every week. I buy an apple to eat as I marvel at all the produce and flowers and baked goods. There is no kitchen in my hotel room so I stop myself from buying the stunning greens on display. I walk down to the Strand bookstore and browse for a while. So grateful for these landmarks that remain in the cityscape, that not every wonderful thing I love about New York has been demolished. Then I head down for that bowl of soup and continue walking, down to the former DeRoberti’s, the Italian bakery and cafe I used to love that is now a bagel shop. I walk in just to see the space, how some of the booths where the old Italian men used to gather over espressos have been preserved. Still, it’s not the same and I continue my journey to Stuyvesant Town where my grandmother lived and then head west to the apartment where my Aunt Dina lived near Gramercy Park. My family would like that I visited them like I used to do, that I acknowledge what an imprint they made on my life. They would like that I am still a city girl at heart, and the part they played in nurturing that.

Each day after walking for hours I go back to my room and rest for a while. It is so great to be unencumbered, to be free of my usual duties and able to enjoy this mini-vacation so close to home yet so far from daily life. Then I head back out for more walking and eating. Miso soup. A slab of pistachio halvah, things that I no longer eat but can’t resist for reliving old memories, like Greek spinach pie, and a semolina fennel currant roll from Amy’s Bread. So much to eat, so little time. It’s great to see the city at dusk when the lights go on. My trips to New York all happen during the day when V is at school so it’s a special treat to be out and see the town all lit up, to come back to my room to see the Empire State Building flooded with colors for Election Day.

On Wednesday night T takes V to the respite group home, where he stays for two nights so that T gets a break and gets to come in and join me. It is V’s third visit since August and T says he seems completely at ease there, which is such a godsend. Then T comes in on Thursday for the final night in the city. We take the subway to Brooklyn to visit friends and go out to eat at our favorite Japanese restaurant we haven’t been to in years. It’s a wonderful final evening though by the ride home gazing at the Brooklyn Bridge from my seat on the Q train I have that bittersweet feeling when a vacation is ending all too soon. Friday we have our last walk, down to the river again and back to the hotel. Goodbye Empire State. Goodbye city outside my door. It was a great vacation and I leave with gratitude and the good type of tired, worn out yet renewed from all the walking and people and food and sights, savoring the memories of my city time.

and yet…on being older

Earlier this week I went to Brooklyn to see my friend L and M, my former supervisor at the Manhattan Borough President’s Office (MBP,where I met L too), who I haven’t seen in decades.  

Our meeting spot is a restaurant in Dumbo and I get there early to walk around the beautiful waterfront park, navigating my way around hundreds of tourists (if it’s this bad on a gray weekday I can only imagine what it’s like on a sunny weekend!) I take a few photos too; it’s hard to resist such spectacular views of bridges and cityscapes. It’s the most instagrammed spot in the country and everywhere I look people are taking the perfect picture, at once hyper-attuned and oblivious to where they actually are.

Before the waterfront park was complete, before it was such a popular destination, V went to school down there at the League Treatment Center, back when he was three and four. It was at the very beginning of our autism journey with him, and I used to attend support groups run by one of the school’s social workers. I still remember some of the people in the group, the way – as I would come to find again and again – what we had in common was far more essential than our differences. And so what on the surface was a diverse group was in other ways homogenous : we all had our lives upended by some diagnosis that had barely been in our vocabulary.

I remember walking down by the river back when you could really be alone there, and somehow although I was shell-shocked I also felt that I was in good hands.  V was so little then and the differences between him and his typical peers was pronounced yet not yet profound. So much was still in front of us, I didn’t know yet how much I would have to give up and let go of, so many dreams both for V and for myself. 

Dumbo was a quiet place to calm myself as I stood beside the East River listening to the water, not a touristy circus. There were just a few destinations, like Jacque Torres, where you could get individual truffles and hot chocolate so thick a spoon would practically stand upright in it. It was a gorgeous, barely-discovered neighborhood back then.

But time marches on and Dumbo is jumping and here I am feeling gray and shrunken, no longer the lively animated person I was back at the MBP, back when I worked alongside L and M was our boss and we were in the thick of everything going on in the city, or so it felt. I was the arts funder so I went out constantly to cultural events. L was a frequent companion, always appreciative and excited by theater and museums and other wonderful spots we had the good fortune to frequent.

It is great seeing them both and yet the gap in our experiences over the years seems vast.  M has a great job at a major museum where she has worked for a long time and both she and L keep up with a lot of our old colleagues. And who are you in touch with? M asks, and I have to tell her no one. I had so many good work friends back then and yet I’ve lost touch with all of them. I listen as M and L catch up on various people they still see and feel so out of the loop; my life feels truncated into a before and after my caregiving role. For while I continued working after V’s regression, my career was back burnered for years, and when I came up for air I found myself disconnected from my former colleagues and the many organizations I worked with. M and L kept that work front and center and the difference that has made is profound. 

On the surface, M is far superior to me in every possible way:  professionally, socially, even in her leisure activities – I do Wordle, she does Quordle (4 word puzzles at once!) If she wasn’t so damn gracious and charming it would be easy to find her annoying. 

M taught me how to write a memo: how to use bullets effectively and convey complicated information as succinctly as possible. There’s no room for James Baldwin in public office she quipped, knowing my penchant for long sentences that felt like an homage to my favorite author. I learned in the workplace to keep it short. She left a lasting imprint.

I know that M and L have had major heartaches and challenges too – none of us gets away with a consistently easy life. And yet despite being roughly the same age this last chapter has been so different for us.  L still works part time and travels and sees a large circle of friends. M looks to retire in a few years and renovate her apartment, she’ll have time for travel and seeing her extended family (originally from Liberia, they mostly live on the east coast now, much easier to visit on a regular basis.)

It’s still rare that I answer the simple question How are you? with utter honesty. After all these years I still have a lot of grief, which is hard for those who don’t have that feeling in their gut and heart to comprehend. With all the joys and gratitude in daily life, there remains a sort of aching and yearning that it’s hard to escape yet difficult to express. It’s not something that I can talk about over a delicious lunch of quinoa artichoke burger and shared cauliflower and fries and the witty banter and sharp insight of two old friends.

And yet afterwards as I walk back to the A train I try to focus on our inner connectedness rather than the differences. We all seem stronger and wiser and mellower with age. Better able to face setbacks as well as triumphs. I feel that way with all my friends. We’ve gotten older and our faces have more lines and our bodies have more problems and yet we’re more resilient and forgiving and tender. We all experience the vulnerability of aging, yet our challenges are more a source of humility than humiliation. As with my Dumbo support group all those years ago I see what binds us as stronger than our unique circumstances. And so I take that bond home with me along with some photos from an afternoon in Brooklyn with old friends.

gratitude practice

I often do a gratitude practice first thing in the morning. It’s pretty predictable: thanks for the cup of coffee, for being awake early before everyone else gets up, for quiet time to meditate and do Wordle. I’m trying to extend that practice during the day, to stop and appreciate all the little ways that life is good, to acknowledge when people are kind and to try to let the rest go.

Thursday afternoons we’ve been going to a Mexican restaurant with V and his home therapist J. We go in and sit down, and the waitress, who now knows us well enough to remember our usual order, comes by with menus and then smiling, gets a hibiscus tea in a large glass with ice, with an extra empty glass so I can split it with V. At first I thought she was reserved and a bit standoffish but I realized she was just shy and in fact is lovely. She stands patiently as V, who has practiced stating his order, asks for guacamole and chips; and the rest of us place our orders as well (we’re not as predictable). It’s been a nice weekly routine: V stays seated while we eat, which is huge progress in the last few years, as he used to get up every few minutes to move around, which was exhausting.

At J’s suggestion we’re going to switch it up and start going somewhere else where V can order something that will require use of fork and knife. It’s been good though, to go out and feel even a little bit relaxed. The combination of V being a little less hyperactive and being somewhere we are known makes such a difference.
So gracias Benji’s Taqueria.

On Friday we went to sensory friendly Shabbos services that we haven’t attended since pre-pandemic days. (I still have trouble wrapping my head around how long the lapse was.) Again, there are people who know V, where he was a familiar presence. He paces around much of the time while singing along to the mostly musical service. Our fellow congregants haven’t seen him in a few years yet they still know and “get” him. And I felt so welcome; no one glares or makes us feel uncomfortable. It’s good for me because I see people I know and as T points out (he really wasn’t in the mood to go out but humors me) I am so desperate for socializing. It’s true, it’s hard with V to maintain much of a social life so I take any opportunity I can get, like a once monthly service. Gratitude to Beth Shalom, their kind members and their amazing cantor. 

Saturdays we go to Shoprite (Yes, our lives are really exciting : ) where we have become familiar to much of the staff, although not necessarily to the customers, many of whom are impatient as we help V to put items into bags and to push the cart and help unload it.  The store has a lot of special needs baggers so the cashiers at least are familiar with people like V. Again we are with J, which always makes things go smoother. Gratitude to J and the staff of Shoprite.

Saturday afternoon we go for our familiar walk in Verona Park. It’s a beautiful autumn day and the leaves are finally changing and V is beaming, walking briskly and loudly vocalizing as he goes. Three women walk towards us and looking right at V one of them says “Yes, what a wonderful day! We should all be singing!” and they all join in and I’m so taken aback because usually when V is vocalizing people either stare or ignore us. It feels so good to have someone acknowledge him in a positive way. Gratitude to Verona Park and to the three gracious ladies who make me feel less alone. 

Sunday Torah Circle just started up again at Lifetown/Friendship Circle, something V has been doing for many years. People know him there and it’s a friendly environment.  He participates in all the activities: cooking, drumming circle, STEM, musical davening. I’m so appreciative of the programs they provide in their spacious welcoming center, that he is engaged and happy while we have a break for a few hours. In my ideal world every day would be this good. Gratitude to Friendship Circle and all that they do for young people like V.

The fact is I still feel socially isolated much of the time, yet having these places where V is recognized and seen makes such a difference. At their best people want to connect. They don’t need to know someone’s diagnosis or the details of their challenges to know that judgment is easy but compassion and kindness goes a lot further. And as I’ve seen over and over, one person really can make a difference, as we all have that amazing power to help others to feel more connected, to be a friendly face to those of us still struggling to navigate this world.  And for that I am grateful. 

baking therapy

Although I have fond memories of baking chocolate chip cookies with my mom: my favorite part was putting the just-shelled walnuts through the chopper – yes, we did it all by hand! – I’ve always been more of a cook than a baker. Becoming a vegetarian at age 15 made me more aware and inquisitive of food than most of my peers and spurred a lifelong passion for cooking for myself and others. I even worked as a private chef and caterer in my 20s. I had some memorable gigs that showed a lot of chutzpah for a self-taught cook. (Something I had in spades when I was younger.)

Alas life can throw us for a loop and mine has led to a certain level of burnout that’s included among a list of things I formerly did and enjoyed a diminishment of cooking interest; that is, I still have the appetite for and enjoyment of a great home cooked meal but the thought of all that slicing and chopping and other work, let alone the clean up – well, I’m just not up for it much of the time. I do what I must but don’t feel the energy to be all inventive and energized to create a small feast, something I used to do regularly. 

Meanwhile I bake a bit more for two reasons: after going gluten-free a few years ago at my doctor’s suggestion, I wanted versions of snacks like oatmeal cookies or banana bread but better and cheaper than what’s available at a store.

Second, V started baking at home with a home therapist who helped out some weekday afternoons. He had been in the Marines and taught V good habits like cleaning up as you go, as well as how to crack an egg and mis en place. V also did some baking in the past with B, who’s a very kind and patient big brother. And on occasion I would try to get him to help out with my baking projects. So it’s something V has done well at, which helps build confidence and a sense of accomplishment. Important stuff.

This week I baked for Fabulous Friday, the breakfast I’m helping to coordinate for V’s school faculty, all 200+ of them. I decided on my scones since they are a staff favorite and made them seasonal with dried cranberries instead of currants. I have been making this recipe since receiving the Vegetarian Epicure as a gift when I was 16. So for 46 years! It’s been my go to for authentic scones. (my aunt and uncle lived in Oxford when I was little and schooled me on all things English from a young age: ) I’ve made these so often that I know how to make them just right, when the dough is that perfect elasticity: not sticky nor dry. It’s a satisfying activity, requiring complete concentration yet at the same time relaxing.

I also made a gluten free version of cookies from a NYT recipe, with banana and oatmeal. I used coconut oil instead of butter so they’re vegan too. And I threw in some tart dried cherries. They taste as delicious as any other cookie but can be eaten by staff on special diets.

It was fun spending the whole morning baking: 4 dozen scones and 3 dozen cookies. Just to go into a zone and whisk and blend and knead and shape and keep putting things into our little oven and once everything cooled down getting it all into containers. T drove me down to school on Thursday where the staff happily stored them for Friday’s event. It’s a really gratifying way to show gratitude and love. I’m hoping to get back to cooking as the weather cools and it becomes soup season. For now a day of baking hit the spot.

respite for a celebration

Respite: providing or being temporary care in relief of a primary caregiver

I’ve had a “save the date” on the side of the refrigerator (we have a weirdly unmagnetic surface in front so nothing stays attached there) for months. While we’ve been looking forward to my nephew’s wedding, a big burden was finding a place for V to go because there’s no way he’d do well between the four plus hour drive to NH and back and the weekend activities let alone the wedding ceremony itself. Fortunately he was able to stay at the same respite group home where he stayed in August.

The wedding was wonderful as was the whole weekend. From a pizza dinner on Friday to most of the day and evening on Saturday at the camp on a lake where the ceremony took place, every activity and event was carefully lovingly planned, with a combination of fun and heartfelt meaning. The newlyweds did an amazing job of planning it all, and my new niece seems as well organized and efficient as the Chabadniks of Friendship Circle, which is saying a lot. 

It was so wonderful to have all that time with the wedding party. I got to see some of my sister’s friends and my brother-in-law’s family and a couple of cousins all of whom I hadn’t seen in ages, and I could focus on it all because V wasn’t there. I don’t mean that in any harsh way but simply in the most practical terms it all worked out because V was in a home with someone else caring for him. And as long as the trip was each way from NJ to New Hampshire, T and B split the driving so it wasn’t too bad. It was really fun being just the three of us or part of the time the two of us (B and I, T and I, and some time with B & T when I was by myself).

I did worry about how V was doing, especially as the weather forecast back home was not great and I knew he’d be spending most of the weekend inside. What would they do all day? And yet, what could I do about it? Nothing, just hope that he was okay and be reassured by the answer to T’s daily call: He’s fine. And hearing that was enough for me to put myself at peace, for the most part. Don’t worry about the details. Be present, which was being in New Hampshire on a brisk early fall weekend where we could let things unravel at their own pace, like getting up extra early to have time to myself and later going to a diner for breakfast after a 20 minute wait. When was the last time I’ve waited for anything? We can’t do that with V, everything revolves around a lack of lines or hectic environments or anything that would make things difficult, that might set off his anxiety, and in turn mine.

But here in this long day to ourselves we could start it with a wait, hanging out with other friendly people as the time went by and then we got into a cozy booth -it was a real old school diner, something I have always appreciated – and the coffee was piping hot poured into nice solid mugs with Lenny’s Diner written on them, a warm welcome from the cold morning.  From there we went back to the hotel for a while, and gathered our outfits for the evening: I was so focused on packing for V and having the right amount of outerwear for wide ranging temperatures I’d need that I spent next to no time on my own outfit, which resulted in a light summer dress with a black jacket and heavy tights that didn’t match with the dress at all, but as I was all too aware, no one really noticed or cared. And I’d soon join the other celebrants in gazing at a bride so beautiful there would be no attention on a poorly dressed salt and pepper aunt.  (The gifts of growing old : ) It didn’t matter…

Every single person I met all weekend was friendly and the younger generation was especially fun-loving, with many fellow nature and music lovers, followers of some of the same bands. At the camp there was an afternoon full of activities: a music jam, a beer swap and crafts for those so inclined (I will forever more appreciate friendship bracelets now that I see how much effort goes into making one. ) Then the ceremony was so perfect – each read something they had written and each was so honest and funny and adoring, it was a real joy to participate. There were a lot of personal touches I appreciated: the newlyweds asked that all devices be turned off so that everyone could be fully present for the ceremony; they stood under a gorgeous chuppah handmade by the bride’s dad (not Jewish, just very generous) out of birch branches and the groom’s dad’s (my brother-in-law) tallit [prayer shawl] was draped over the top – and when they stood there facing each other as corny as it sounds their love and excitment was palpable.

(I walked down before the ceremony and snapped the photo above.)

The party in the dining hall was really great – lots of delicious healthy food, and desserts all homemade by the multitasker par excellence bride.  There was a terrific live band that played a good mix of tunes, and they included a version of Hava Nagila  – a traditional song and dance at festive Jewish events – as the bride and groom were raised overhead on chairs and everyone danced around them. And this event was certainly festive!  By 9ish however I was utterly exhausted – that old person stuff kicking in again – and T & I bid adieux to the hundred plus guests still partying into the night.

We got an early start on Sunday and so arrived home a few hours before we were expected for V’s pick up, but T wanted to get him and be done with driving for the day and come home and unwind. So we called the house and told them to expect us in a half hour, and off we went to get V after having several days on our own. And just as we left him, he seemed fine. Not in any way I could sense unhappy or uncomfortable. Rather he seemed at ease. There were nice people around him in a nice roomy house, but still I wondered and worried about what in fact he did all that time that he was away. Do they try to engage him when he is in his own world; like us do they instinctively know when he needs to be alone and when he can tolerate or even welcome others into his world?  What were his days like?  What might his days look like in a new home without us? I’m ready for the next stage yet there are so many questions I still have, so many concerns that go with having a child who will need so many supports.

These respites provide us with much needed breaks and also prepare us for the future, when V’s time away will be permanent, when he will live in a group home without us, hopefully happily ever after. For now, I’m grateful to have had the joyful weekend and to look to the time ahead with a bit more peace of mind.

Days of Awe

Awe: an emotion combining veneration and wonder that is inspired by authority or by the sacred or sublime.  

L’shana tova.  

That means “for a good year” and you don’t have to be Jewish to take in that blessing and to see these first days of autumn as the perfect opportunity to celebrate a new season, a new year, to reflect on the past and express our dreams and hopes for the year ahead.

Rosh Hashanah marks the beginning of a 10 day period called The Days of Awe, a period of introspection and repentance that culminates on Yom Kippur, the Day of Atonement. 

On Monday I walked to a little creek in a nearby park and threw bits of bread into the water for Tashlich, which literally translates to “casting off.” During this ceremony, Jews symbolically cast off the sins of the previous year by tossing bread crumbs into flowing water. During this ritual, people think of things they’ve done wrong in the past year and then “throw them away,” promising for improvement in the coming year.

I generally don’t think in terms of sins, but rather of where there is room for improvement, how I can be a better version of myself. The main thing I aim to throw away this year is worry and anxiety, as I spend so much time fearing the future when there is nothing I can do to change much of what happens.

People we love will get sick. Loved ones will die. So many difficult events can occur. Our circumstances can change on a dime.  There is no denying hardship and heartache that are part of life: we all will experience serious setbacks or illness at some point, eventually we all will die. Yet to dread and fear the unknown, that’s no way to live.  

I am going to try to greet each day with more courage and trust, and openness to both the good and the difficult. I am going to work on eliminating or at least minimizing the phrase “What if…” followed by the worst case scenario. I do this a lot with V, especially when we have any plans out of the ordinary. Like going to my brother and sister-in-law’s for Rosh Hashanah dinner on Sunday. What if he can’t handle the ride, if he is disruptive, if he has an accident or makes a huge mess or whatever memories I can dredge up from other visits. My family are exemplars of hospitality and won’t judge yet still I worried all week. The fact is he does fine, remarkably well for the most part, although he digs into the challah before dinner and doesn’t sleep when we get home.  As I expected, when I let the worry dissipate, it was a lovely evening. We dipped apples into honey to ask for a sweet new year, we broke bread (well, V already broke it…) and had a wonderful meal together. We spent time with those we love. Fear and worry – mentally preparing for the worst – does not change the outcome. All it does is tie me in knots that keep me from staying present.

I also think about other ways I can improve.  One simple change is to give back more.  Generosity doesn’t have to be monetary – although gifts are certainly nice and well appreciated – it can be time, attention, clear and honest communication, love and understanding. It can be cooking for someone who isn’t feeling well  or campaigning for a candidate or being a good listener to a friend in need.

I somehow got talked into taking over an initiative at V’s school where parents contribute funds or food to a monthly breakfast for the staff. In the past I would bake – often with V’s help (along with a behavior therapist usually), tripling a favorite recipe like apple cake or pumpkin bread or my scones. It was a nice way to give back, it took a few hours, was enjoyable, the house smelled great and then the hardworking staff got to enjoy what I made.  There are so few ways I feel that I can be helpful right now so it felt good to contribute.

Well, the kids of the parents behind this lovely tradition just graduated last year and they needed someone to be in charge and somehow I let myself be talked into it. Why? It will involve time and coordination and probably a few headaches. Because I am not good at saying no? On some level this is true. I have gotten better but I admit that it’s hard for me to say no to anyone. I admire those who do this with ease.

Yet in part I think why not give more of my time and energy to this breakfast? Let it take up a couple of half days a month for something that will be enjoyed and appreciated by deserving staff. (It will entail enisting T as my driver as we go for a shop and pick up food and drop it off and for this help I am grateful.)

The other positive outcome is that it will put me in touch with others’ generosity, those who are Venmoing me and those who have offered to send some food in, other people I don’t even know who I am reminded are part of the same community. 

How else can I give back? How can I be a better partner, parent, friend, sister, daughter? Instead of lamenting what I cannot give right now why not focus on what I can? To be generous with my attention and affection. To offer to help out in small ways that I can. It might not seem like it but I see this blog as a way of sharing some of myself, of trying to connect.

I also want to stop comparing and despairing. It’s all too easy – an automatic reflex in my case – to compare my circumstances to others, who seem to have it easier. Yet everyone has rough patches and and suffering. Friction and disagreement with people we care about. Unbearable loss. Full plates. We all have such different circumstances that it’s pointless to compare and yet I do. When I pull back from this bad habit I realize that I have so much to be grateful for, so many opportunities to appreciate the things that make life worth living.

What if we lived like we were always in the midst of days of awe?  If we stopped and appreciated the littlest things: the sound of rain, the feel of sunlight, a few nice words from someone, whether a stranger or friend.  The fact that we wake up each morning to a new day. 

What if we saw everything as sacred? Every breath and meal and step forward and conversation…it’s something to aspire to in the year ahead.  

And so I look back and then forward and reflect, vowing to improve as best I can.  

Shana Tova.

planning mode

Getting used to a full house after my time alone. V is back in school full time and there’s a lot to do in planning his future. I’m also on the board of directors for an organization affiliated with his school that has started a day program and is planning for residential services as well, although that part is a lot of work and will take a while. I’ve been doing lots of research to prepare for a document I’m supposed to write and there’s a lot of complex details involved in starting a group home.  It’s been a struggle to focus on this as well as V’s immediate needs.  I often feel that I don’t use my time well enough.

The fact is that while V is at school I do have free time yet I rarely have the energy to do as much as I set out to do.  When people ask if I work or if I am retired I say yes and no, although it’s not like a regular job.  Devoted caregiver comes without pay or visibility, it’s a long-term thankless gig, one I share with millions of others, and I know I am luckier than many of them. T is a great partner and helper and I have people who care about me, even if there’s nothing they can do to help with the day to day tasks that enervate me.  It is a consuming job.

V is scheduled to go back to the respite group home in a couple of weeks so that we can go to my nephew’s wedding. It’s good to have a place for him to go as the long drive, the various weekend activities and especially the wedding itself would be overwhelming for him, and would limit our relaxation and enjoyment of the weekend.  It’s nice to have a joyful occasion to look forward to, and to have a safe secure place for V to be.

Planning for the future, whether two weeks from now or decades to come, there’s a mixture of hope and disappointment, grief and gratitude. Wanting him to get used to the group home setting through these short stays so that he will be acclimated to a new environment, one without us.  The empty nest seems beyond reach right now but it is going to happen eventually.  When is the question. And where and what and how, all to be determined.  

Other people I know with empty nests have had a combination of sadness and celebration, missing their grown kids yet enjoying the newfound freedom.  Friends who live alone likewise cherish their autonomy while admitting that loneliness is still part of the mix.  And I know people like us who don’t have that empty nest and don’t know when it will happen.  

The same questions always swirl around and come to the surface: How do we assure that V gets the supports he needs? That he has a full life in which he continues to learn and grow? How do we make sure that he isn’t stuck inside in a house doing nothing? How do we accept what we cannot change? A big issue is that staff, the direct service professionals who will be with him throughout his day and night for the rest of his life, that these people are not well paid and there’s nothing we can do about that unless we start our own home which as I’ve found out is a labor-intensive, arduous project. And while we can give staff gift certificates as bonuses we can’t do anything about the low hourly pay rate at existing group homes. We can support and vote for measures to raise the minimum wage, but beyond that not a lot we can do, and that’s frustrating. People who do this hard work caring for our loved ones deserve a decent salary! It’s a win: win – they’d feel more invested in their jobs and be rewarded for that. A livable wage benefits both the professionals and those they care for.

While I am ready for this next stage, it is still hard to let go, to let go of the dreams long dimmed.

For 21 years we’ve tried, we’ve tried everything. Well, that isn’t true because there are so many treatments and therapies and medications and supplements and special diets, there isn’t enough time or money to do everything… but we have tried a lot. And V remains an individual with severe disabilities, nothing has changed that. We’ve learned to accept that the progress we were promised over and over again was not to be, that improvements were modest and incremental and he remains, as his official documents now attest, someone who needs lots of supports for just about everything. 

And so there’s a lot of anxiety about finding a permanent home, a place where V can live and thrive. And so my time and energy get filled with hoping and praying as well as actually getting things done.  Doing the best I can to stay positive and get some daily tasks accomplished, to plan and dream and still stay grounded in the here and now.