I was going through a box of random old photos recently and ended up wandering through some treasured memories of adventures and friends. It’s funny how shared experience can forever weave different people into your fabric, however brief their imprint. I’m struck by the way our brains sort and recall memories. Sometimes events that seem trivial wind up being fully formed memories, tangible and enduring, while others quietly fade from our thoughts.
For me, the biggest triggers of memories are songs and photos. I can be transported back to a time and place and connect to the way I felt being there at a particular moment. Sadly, some of those connections are fleeting, and not completely filled out. I find myself struggling to recall what happened next or previously, but in those moments of pure remembrance, I’m there.
I save letters too. I have letters from my paternal grandmother and from my dad that I cherish. I have a couple of cassette tapes my dad made for me when we travelled, wandering around recording his musings but I am afraid to play them because I fear the tapes are too fragile. I don’t know how I’d react to hearing his voice either but knowing I have them somehow is enough. I have letters from random friends, and from a post high school boyfriend who wrote from the road when touring with his band. They all are part of my story too.
Reminiscing with friends also naturally serves a trigger. As we move through our lives we pick up new friends who serve as markers of specific periods of time in our stories. I spent a summer in London in the mid-eighties doing an art program at the Royal College of Art. I made two fast friends during that time who I spent much of my out of class time with exploring London and enjoying nights in the local pub near school in South Kensington as well as some fun nightclubs. We had a some interesting adventures during that summer, memories that only we three share. Memories that I was reminded of recently when I came across a few old photos of that summer.
We three lost touch fairly quickly as we didn’t live in the same states and the internet was not yet fully formed. We returned to our lives and next chapters. A decade later, Facebook reconnected me with one of them so we wish one another “Happy Birthday” and get little glimpses of one another’s lives.
This is true of other Facebook friends I have. People who knew me when (and whom I knew when)…cherished shared times in our lives that had impact and significance but were fleeting in the context of an entire life, meaningful chapters in our biographies. People who know me from a very specific vantage, who influenced journey.
The thing is, with my memories fragmented and sometimes unreliable, I’d love to reconnect with old friends from different periods in my life. I have a tribe of friends who have known me for almost fifty years, who have been witness to quite a lot of my life, but there are times, like London, and periods where my social life existed outside that tribe of friends, where having people from those phases to talk to and to recollect to better round out my uneven memories. I would love to have those opportunities to reacquaint myself with long ago me(s).
Quarantine has brought out the worst in my conversational skills. Having considerably fewer opportunities for actual, in person conversation and too much time spent alone, in my head, talking to myself, I’ve lost touch with the art of conversation. I find my excitement to be talking to someone outside my tiny circle leaves me tongue-tied or over-anxious to speak, thus interruptive.
As life started to open up a bit more and I’m socializing with a somewhat broader group of friends, I notice the decline of my communicative finesse. I catch myself interrupting, or worse, getting caught up in my head, having internal chat with myself. It has become a frequent cause of upset with my husband, which doesn’t make the 24/7 we continue to spend together exactly blissful.
As much a I am content on my own, I have always treasured friend (and family) time. Sharing an evening with a dear friend, enjoying a long, lingering meal and endless conversation is one of my most favorite ways to recharge. I love nothing more than to get lost in a conversation that weaves to and fro with twists and turns that eventually lead back to the beginning. It confounds my husband that these conversations seem never-ending.
Back in the day of landlines, I’d spend hours on the phone with school friends, doing our homework “together”, dreaming of boys we wanted to kiss, places we wanted to go, which lipglosses were the best (Bonne Bell Dr. Pepper!), and back to boys (of course). Those silly, intimate, protracted conversations are in part what our friendships were built upon. They filled out the gaps in the day to day hanging out and chatting. They connected us in ways that still hold true today. To this day the girls I hung out with, some since age nine, the rest since middle school, remain among my dearest. We still see each other, still share cherished memories, and still have silly, intimate, protracted conversations over forty years later.
With shared conversations being something that I relish, the fact that I’m noticing the regression in my conversational dexterity after these seemingly endless months of semi-isolation leaves me feeling a bit anxious to be back in more social settings. Though I hope that the increase of practice will have a positive impact and bring me back to good graces before I’m lost inside my head for good!
Since we’re still stuck in the hospital in somewhat of a holding pattern, waiting for the surgery date to arrive, I’ve been doing a lot of daydreaming and plotting. Naturally, inspired by the new year, new decade, and in part by the outpouring of support from all walks of my life, I’ve been trying to come up with a way to bring my worlds together and to be able to spend real time with people. Ways to show my appreciation and gratitude for their care.
I love to entertain and I love evenings spent enjoying food, drink, lively conversation and games. There’s a Barefoot Contessa episode where she’s in Paris and one of the expat chefs she cooks with explains that he and his wife started hosting weekly dinner parties where they welcomed strangers from their neighborhood as a way to get to meet people. I love the idea.
We actually started doing monthly summer dinners with a few neighbors last year that have been such a fun way to connect with the people around us. When I’ve mentioned this to other friends, the reaction is always one of surprise. I’ve found that quite a lot of people don’t really know their neighbors anymore, and if even they know them, they don’t socialize with them. I’ve really loved our dinners and look forward to this summer when we get back to it!
While I’ve been here contemplating things I’d like to do in the new year, not resolutions, mostly actions, my husband shared a Facebook post from a colleague who lives in New Jersey (his company welcomes people working remotely so their staff are all over the country, and a couple even outside the country). She and her husband starting hosting monthly pasta dinners when they purchased their home as way to entertain, meet new people, see existing friends, and make use of their new home. I loved it and wanted to know more about how they came to do this. Turns out they were inspired by a blog post on Serious Eats, where a couple decided to do a weekly Friday Night Meatballs dinner.
The point of the evenings is to bring people together not to impress everyone with your culinary prowess or to spend a week preparing for these evenings. It’s about keeping things simple, sharing your space and time connecting with people in your life and connecting people in your life with each other. The mix of guests can be forever changing even if the meal itself remains the same, dinner after dinner. Evenings can end up with lively games and other fun simple entertainment – impromptu karaoke anyone?
I’m dreaming of being home and figuring out how this idea can find its way into our routine. One of the greatest gifts of Cole’s spinal surgery journey has been the recognition that we have a big community of people who care about us. I really want to welcome them into our real life and implementing a regular dinner night seems like a perfect way to do just that. I can’t wait to see who will actually join us! I really hope we have a revolving mix of people open to the magic of togetherness!
It’s hard to believe that 2019 is coming to an end – not only 2019 but the decade. It’s hard not to have this past month define much of 2019, but the reality is there have been a lot of things that happened in 2019 that are to be celebrated. Perhaps looking back, our current hospital adventures will be celebrated too. At the very least, our survival of them!
One of the things I’ve worked on this past decade is to be more open to asking for and accepting help. Somewhere in the last few years I started going to a special needs moms support group, which started opening me up to exposing myself. I also have a couple of dear friends who encourage the same of me and it’s transforming my psyche. I’m definitely a work in progress and will probably always be such but learning to be open to change and vulnerability have impacted my life in more ways than just as a mom.
I’m not good at resolutions so my interest in the start of a new year doesn’t really lie in committing myself to do this or improve that. The usual things like devoting more time to wellness (fitness/healthy eating/sleeping), finding balance in life, being my best self are ongoing endeavors. A couple of years ago I challenged myself (along with a friend) to try to do new or different things throughout the year. That too is something I hope to continue to explore. I was gifted a guitar for Christmas this year so learning to play is on the agenda – I have some lofty songs I hope to eventually master! I also want to challenge myself to write more – whether it’s this blog, short stories or even letters to loved ones. The practice is cathartic and I dream of one day having something published, making the practice even more important.
I see 2020 being the start of a movement where I strive to be more present with my time, care and interest in my family, friends and others. I greatly appreciate the simple, but intimate joy, of spending time with people I care about or am interested to know better over shared meals, experiences and time. I don’t feel like I do it enough though and really want to have impromptu meals, game nights, afternoons hiking with friends. I’m at an age where life feels more fleeting. An age where both peers and parents are leaving us or are facing health challenges. Time shared is so much more valuable than any purchased gift. My perspective of this value has deepened as I’ve aged and I feel strongly about drawing my community more into my everyday life, holding them dear and near, celebrating nothing and everything.
On that note, slightly in advance, here’s to a bright 2020! I wish you all a glorious new year filled with promise, joy and love!
Thanksgiving has become a holiday where we, my pod of three, frequently find ourselves trying to figure out how and with whom we’ll celebrate. For a number of years we joined extended family for a chaotic feast, but it wound up not being quite right so we hosted a couple of dinners ourselves, inviting other families and friends who were similarly without plans. We’ve been invited to share with the clan of a close friend several times, a dinner that was always warm, festive, and full of great conversation and cheer. The clan has since grown considerably so the dinner is now relegated to clan only, which seems right. Last year we again hosted with a couple of families, one of which was transitioning via a divorce and in need of a new experience to help get through the holidays. And this year, we’ll be sharing with them and their extended family as guests – though they’re as close to us as family comes – in what may be their new tradition.
Thanksgiving is likely my favorite holiday when it’s well celebrated. It’s a time of year where we tend to reflect on things that are important and where the best part of the festivities is simply spending quality time with those we hold dear, sharing a glorious meal, laughter, gratitude, and care. The celebration can languish over wine and conversation, or move to game playing like our dinner last year, leaving bellies full and souls sated. In my mind, it’s the perfect dinner party…
This year particularly I’m counting my blessings as we are all gearing up for Cole’s surgery next week. My nerves are right at the surface, so I’ll be spending some of the long weekend preparing the house and freezer for our week at the hospital, and then those first few days home when we’re getting our bearings in terms of caring for Cole and his new back. We work well once we figure out the best routine so I know it will get easier as we settle home.
I plan to decorate Cole’s room with heaps of holiday decorations so it feels festive and Christmasy. It’s likely he’s going to miss his favorite holiday celebration, Christmas Eve dinner at his uncle’s house. The two share a love of Christmas and my brother puts on a wonderful Christmas Eve celebration every year that Cole looks forward to and adores more than anything in the world. I want to transform his room into a winter wonderland while he’s still in hospital. It breaks my heart that he’ll miss it this year so I feel compelled to create some new holiday cheer for him to make up for it just a little.
I’m grateful to have a tribe of friends and family who will be around to support Cole, Dan and I through this.
Happy Thanksgiving to you and yours! I hope you’re festivities are full of love and joy!
Several months ago a dear friend asked me to be part of one of the segments of a podcast she created. It would be me, and another close friend, and her talking about the effect of having children with special needs on our lives. The three of us know each other well so despite my nervousness, I agreed to do it.
I arrived at the designated address and was directed to a studio where there were big microphones (the furry ones that get placed right up near your face) and some chairs. There were lots of audio crew people and producers and Amy, the host, our friend Dawn, and me. We sat and started chatting under Amy’s topic direction. The three of us each have a child with special needs. Amy’s daughter is Cole’s age and we’ve been close for twelve or thirteen years now. Cole and her daughter continue to be pals despite being at different high schools these past several years. Dawn is someone Amy and I met a few years ago at a support group. Her daughter is younger than our kiddos but she became a fast friend. So the set up felt comfortable and the conversation somewhat familiar though we delved deeper than we might over cocktails at a mom’s night out.
After a point, the other people and equipment sort of melted away and the conversation flowed easily. We recorded for an hour or more, shed a few tears, laughed a little and left our vulnerability on the floor. I left feeling pleased about doing something new, getting out of my comfort zone and not allowing my nerves to completely defeat me. Happy to have spent a little time sharing with two people I love and trust, and curious to know how it would all sound if and when it aired (is that what podcasts do? Air? Stream?).
Tomorrow, months since we recorded, our episode enters the world. It’s available on whatever platform you listen to podcasts on like Apple. The first five episodes of the podcast have all been released in the previous weeks and this is the final of this round. I hope there will be more seasons or whatever podcast runs are called because it’s a really interesting, thoughtful and thought provoking premise.
It’s called The Challengers with Amy Brenneman. It’s not a “I had a challenge and came through and everything is rosey” kind of look at challenges in life. It’s more about how life challenges have us (collectively) stepping more into humanity because of or inspite of the challenges. The guests she chose for the these first six are all fascinating and diverse. I highly recommend listening to all of them.
I saw a post today, shared by a friend in Australia, about a friend of hers who just had a baby. There were complications with the delivery and her daughter has been diagnosed with cerebral palsy. The post was asking for donations for the baby’s current and future care. I wanted to write on the post that with seventeen years of experience with a similar child, it’s going to be okay and that despite the dramatic entry and overwhelming sense of the unknown, life will be joyful and their child will be loved and happy. I held back though because I’m never quite sure if people want to know this while they’re in the throes of trying to understand their new reality.
This doesn’t just apply to this particular situation. I struggle with it in all kinds of situations. I have come to realize that often people don’t want to know that there are other people who have walked the path before them and can shed some light on the journey. I also worry that it comes off as “know-it ally”, which is never my intention. So I often opt to hold my thoughts.
I, for one, am truly grateful for advice and support, and I cherish the guidance of those who have similar parenting journeys because between all of us working together we have quite a network of research, connections and experience that enriches the lives of our children beyond what one lone set of parents can do no matter how savvy.
One of my fantasies is to one day create a compound living situation, preferably near the beach, with a therapeutic swimming pool, accessible gym complete with an infrared sauna on the property, where other families like ours could all live with their 24/7 adult kids (either in independent homes or with family) and support one another. Some of us have kids that will likely remain with us for life but there are ways to provide some independence for them within a fixed community and to allow parents to have some independence as well. It’s a fantasy but not completely outside the realm of possibility.
We can go it alone but in my experience it’s always better with friends…
“Take a look at the world,
and the state that it’s in today,
I am sure you’ll agree,
We all could make it a better way.
With our love put together,
Ev’rybody learn to love each other,
Instead of fussing and fighting.”
Jimmy Cliff
There have been so many natural and human disasters around the world recently. It seems endless and it seems impossible to know what to do to help besides throwing whatever money one can afford to throw. But that doesn’t feel like it’s enough and it precludes any direct connection with the victims, and fall out.
After seeing the devastation in Florida, Puerto Rico and the US Virgin Islands, and the tragic aftermath of the senseless shootings in Las Vegas, or the massive loss of life in Somalia due to two car bombings, we look to one another for answers, comfort, and relief. We hold our loved ones tighter and make effort to let those we love, know we love them. We join campaigns and donate to organizations to provide assistance. We hope that our own cities won’t be the next struck by any kind of tragedy, natural or manmade. And we then we go about our lives feeling we’ve helped.
And we have. Being kind to one another is important and providing much needed funds to relief efforts is necessary. Going about our normal daily lives is also important both for our communities, our families, and us.
But there are some people who think outside the box and make effort to effect change and to impart a different kind of care, the care of action. I am blessed to know one such angel, and I want to share what she did in the wake of the Las Vegas tragedy. She made a pilgrimage of kindness to Las Vegas; where she did fifty-eight acts of kindness, encouraging each recipient to pay it forward themselves, in honor of each of the fifty-eight victims.
The deeds ranged from surprising random diners in Flaming Fajitas with gift cards to cover their meals, to presenting flowers to a senior in an assisted living home, to paying for haircuts at a local Fantastic Sam’s, to bringing pizzas to the first responding police station, to providing her cab driver with a generous tip, that he then donated to a collection his company had going to provide aid to the victims, and so much more. Each deed was accompanied by a note with the name, hometown and age of the shooting victim she was honoring. Many of the recipients had stories of their own to share with her and ideas for paying her kindness forward on their own.
She touched an entire city. She connected with people on a whole different level. The local paper caught wind of her mission and wrote about her. She shared the journey on Facebook and had lots of supporters wanting to help facilitate her passion. She took the idea of helping a step further than most of us even conceive. I know her to be one of the kindest, most caring, friendly, enthusiastic people I’ve ever met and I’ve been inspired by her since she came into my life. I aim to think outside the box like she does. I hope you will find inspiration in her actions too.
We’re back to our usual routine after what felt like endless birthday celebrations! September is a busy month for us! The celebrating fun as it is, is also exhausting. I’m looking forward to a few weeks of whatever normal life might be considered.
The big fun right now is that we have a giant hole in our backyard, and heaps of dirt, that will eventually become a swimming pool and lovely outdoor kitchen. The project started a few weeks ago and is now hostage to some permitting that requires both DWP and the city to approve, so your guess is as good as mine as to how long that will take.
After years and years of wishing and contemplating the idea of putting a pool in our backyard, my father in law kind of got the ball rolling for us. Cole has always loved water and swimming, and thrives doing aquatic therapy, so it will be amazing for him to have a pool of his own.
It’s also a great social activity for him. He’s at an age where social things have become harder to come by and fewer between. Teenagers don’t really want an adult infiltrating their outings activities, nor are they necessarily mature enough to be asked to be responsible for Cole on a solo outing. It’s hard. But inviting friends to swim and hang out is an easy, fun social activity that they all enjoy and that will hopefully keep his social calendar filled.
We’ve been blessed to have many friends over the years, who have generously shared their pools and backyards with us, so our hope is to pay it forward by having a sort of open invitation to all of our friends to come spend time lounging and swimming. We tend to be home quite a lot and plan to make great use of the new backyard in terms of swimming, hanging out and cooking, and we love to have company for all of those things!
I am already envisioning next spring and summer being filled with afternoons of swimming and goofing around with friends that turn in to casual dinners and night swims. I’m fantasizing about putting a moveable screen outside so we can do impromptu movie nights viewed drifting on floats in the pool or snuggled up on a cozy lounge chair. I imagine my husband and myself doing all kinds of aquatic workouts, including swimming laps, but also enjoying the resistance of water for other aquatic exercise.
I see Cole coming home from school and taking a daily afternoon swim. It will be a fabulous chance for him to stretch out his body and to move a bit after a day in his wheelchair. I can’t imagine how good that will feel to him. The freedom he has in the water is unlike anywhere else. He has more control over himself and more strength in water. And it’s definitely his happy place!
I’m beyond excited about the seemingly endless benefits our backyard transformation will provide! Even looking at the giant hole and mounds of dirt, I can picture the family frolicking in the cool water on sunny days…
I hope you’ll join us! (maybe not until next spring!)
For better or worse, it’s been nearly a year since I added new posts to I Love Your Brain. I think about it often and I miss writing but these months have been charged with all sorts of new stresses and joys.
The most notable event of the “lost months” is that Cole started high school. He’s actually now successfully and happily completed his freshman year at a public LAUSD high school. He did well, enjoyed school, made friends (even had a girlfriend) and is now contentedly enjoying four weeks of summer school.
Filling nearly ten weeks of summer with two working parents is challenging, so we take activity where we can! Thankfully, he still loves school so summer school is a good, free option for part of summer.
The relief I feel about Cole liking his new high school and adapting to the new environment, teachers, schedule and transportation can’t be measured. The stress leading up to finding what we hoped would be the right school was immense for all of us. We’d been spoiled by CHIME. Cole had only known inclusion. How would this work at the high school level, in a school district that doesn’t practice inclusion at the high school level?
Interestingly enough, his school was open to allowing him to take some classes under general ed and some, including his home room under special ed. At first he really liked having his day split between the two, and he did well in all of his classes. He had support for the general ed classes through his special ed teacher and made some friends outside of the special ed class.
But somewhere midway through the year, he started to prefer his special education classes to the general education classes. He made more friends in that class and felt more comfortable and confident there. For the first time in his fifteen years he’s starting to identify more with kids who have disabilities or are more similarly abled to him. One hand it seems like a natural trend. High school is where most teens start to regroup and find their peeps.
On the other hand, it’s been harder for my husband and I to accept. We both recognize that it’s Cole’s choice and that his happiness is most important but in that way that most special needs parents have to let go of their own notions of what their child’s experience is supposed to look like and adapt to what it does look like, we have had to let go of the idea that having an inclusive education at this level is what’s best for Cole. It’s hard.
Despite the successful school year he’s had, it’s also come with a fair amount of loneliness. He’s made a lot of friends at school, kids he spends every school day with and some riding the bus to and from and school with (so spending roughly from 6:15am until 5pm together), but he doesn’t see these kids outside of school, except one movie date night earlier this summer.
Nor does he see much of his old friends. There are some kids who he was really close to at CHIME who he hasn’t seen since leaving CHIME. I understand it’s the ways things naturally go at this stage in their young lives, but I’m not sure how much he does. The reality is that there’s little intervention that I as a parent can offer. It breaks my heart.
Right now, I’m just hoping the rest of summer will pass quickly and that we can get back to routine of sophomore year, full school days. We’re in the process of building a swimming pool so next summer Cole will be able to enjoy his favorite activity any time he wants…swimming – in his own swimming pool in his own backyard! Hopefully it will provide some social opportunities for him too!
I love your brain 