Please read my most recent post about raising boys on Medium.com
The basic goodness of humanity is at the heart of Buddhism. The idea that all people are basically good, regardless of their behavior is important to developing compassion. When people do terrible things they do them out of confusion and ignorance. Ignorance is not defined as stupidity but as ignoring, or not seeing. In the week since the election I have thought a lot about basic goodness. It sounds like a simple concept but when you really start to apply it to people with whom you disagree on what is practically a cellular level it can be challenging.
When I ask myself if I think Donald Trump or Mike Pence is basically good, a riot breaks out in my brain. I find them and virtually everything on which they built their campaign completely repellant. It is a scary thing to doubt the basic goodness of your president; it is a feeling of vulnerability and fragility that I have never experienced before. The sadness is most similar to a broken heart in its betrayal and shock. There has also been a sense that something was taken from me. I wasn’t an overly enthusiastic Clinton supporter but I did think that she would keep our country moving in the general direction of decency that would allow people of all colors, creeds and abilities access to a basic level of education and healthcare befitting a democratic superpower. Now, I am not sure if those things are true anymore.
When my daughter woke up on Wednesday morning I was awfully grateful that she has non-verbal Autism. She came skipping into the kitchen grinning and clapping, totally unconcerned about our now very uncertain future. It was not so easy when her brothers came down, after months of telling them that Trump was unfit to lead, and that he had no idea what he was doing. I found myself singing how a bill becomes a law from Schoolhouse Rock and explaining the checks and balances of government. When the kids left for school I cleaned my house, listened to jazz and classical music, and wept. I thought of how certain everything had seemed just a few days before and even though nothing was different everything was different.
In reality this is always true, in the blink of an eye your life can shift completely. Usually when it happens it is specific to your family or your work. A death, a new job, falling in love or out of love, built in to our lives is a baseline level of uncertainty. This election however, was a shared experience. It was a shared sense of disbelief and sadness, of disconnection from your neighbors, and disbelief that they don’t see or want what I see and want. It was an awakening. Any time we get too comfortable, any time we start to take things for granted, it is inevitable that we will get shaken out of it. We can respond with anger and disbelief that our dream has been interrupted or we can respond with action.
I have decided to respond by appreciating the things I took for granted. I will give to NPR and Planned Parenthood. I will renew my subscriptions to the newspapers and magazines that will provide us with real information about our new leadership. I will educate myself on things like the Voting Rights Act and support places like the Southern Poverty Law Center. If Hillary had won I would have felt validated and safe, not activated and alert. I would keep on tending my own garden, raising my kids, volunteering in my community, being polite, and that would have felt like enough.
But that isn’t what happened, and I don’t feel safe. I feel exposed and uncertain but I also feel energized. I know lots of women in my mother’s generation and older who spent their lives fighting for equality, for basic human rights for all people. I never felt the need to pick up their fight until now. I am hoping to get to a place where I trust the basic goodness of our leadership, but if I don’t, I have been reminded of an important lesson. Nothing is certain. The only thing I can control is my response, which in this case is to fight for the things and people I believe in and to teach my children to do the same.
I think a lot about memory. As I get older I remember details or the way something felt, rather than events. I can’t remember the name of my second grade teacher but I remember exactly what the hooks looked like where we hung our jackets. It was a small hallway leading into our classroom, with hooks on either side. There was a window at one end and when the sun would shine in you could see all the dust moving in the air. I liked that little room, the wood of the floor worn down by many years of kids like me, the hooks with our names written underneath, a spot for everyone. The only thing I really remember about that school is the coat room and it’s hooks, and the way the sun would slice into the space lighting up a small section of busy dust .
Memory is all about connections, fragments of days and events stick around in my head, some feel random like the coat room, some are sweet like the memory of the day Colin proposed or the days when we met our kids. Some are still very sharp and real like the hours we spent in waiting rooms of doctors as we slowly unraveled Mae’s diagnosis of Autism. I can remember both the feeling and the details of these days with incredible clarity; the emotion of them accompanies the home movie as it plays in my head. Sometimes it can be like reliving the experience, both the happy tears and the sad ones.
I am always interested in how memory affects behavior. My sons don’t like getting in trouble because they remember how rotten they feel when they have done something they shouldn’t. They are motivated to make choices that keep them out of trouble by the memory of a feeling. I can’t really eat sugar any more, not because I don’t like it but because I remember that it makes me feel awful. When I am struggling to motivate myself to go running or sit for meditation I remind myself how good it felt the day before. Memory is a powerful force in everything I do.
I am always interested in the things Mae remembers. Does she remember the feeling of the day we adopted her or of being on the airplane? Does she remember the feeling of all of the operations and doctors visits that filled our days when we first got home from China? I remember the sadness, exhaustion, and helplessness of them more than I remember the names of the various doctors and all their grim reports. I always wonder if she remembers them at all.
She has a very clear memory for the things that matter to her, she always knows where her favorite snacks are, and a stash of plastic for her to play with. She remembers where we keep her swimsuit and is more likely to find the ID card for the pool than I am. She pays close attention to the things she cares about, and ignores all the rest. She is my child and I think that she is brilliant; one of the ways I convince other people of this is using her memory as an example. She can’t speak but her very good memory is proof that she can learn, and I am always quick to point it out.
When you live with someone whose brain is largely a mystery, memory is proof of connections she can’t verbalize but that clearly exist. As I age, my memory is changing. It requires more effort to hold on to the details. I feel like my brain has become one of those vests that people use for fly fishing. It is filled with pockets of information, song lyrics, old phone numbers, directions to homes I don’t live in anymore, passages from books long since passed on to friends. My sons are always interested in my memories of life when I was their age, what was it like for me to be 11 or 12, they are often frustrated when I describe the memory of a feeling instead of telling a story.
Most interestingly is how we can change the role that memories play. I remember that first crazy year after Mae’s diagnosis as a series of events, but also now in retrospect as my own personal endless Ironman. My memories of having survived it are something I call on frequently to remind myself that nothing is impossible. I have started to think of my memories like money in the bank, I can call on them when needed to provide perspective, motivation or to save me from myself. I have also learned through my meditation practice that I have a tendency to get stuck in my own memories. I have learned by watching my own mind that I can replay or relive events long since over and still feel the irritation or sadness that accompanied them. It is a habit that does not serve me well. Why not revisit the happy memories instead of the ones that make my blood boil? Your memory can keep you from making the same mistakes twice and encourage you to repeat things that have worked in the past, but the best idea is to invest yourself and your attention in your present, because for better or worse that is where your life is actually happening.
Very early on right after Mae was diagnosed I had a constant and overwhelming desire to try and fix Autism. I was convinced that there would be a doctor, a supplement, a therapy that would unlock the words from my child’s mouth. We traveled from New York to Boston consulting every expert we could. We tried every combination of nutrients and foods imaginable. Every conversation, every thought was consumed by the need for answers. I struggled at the time to reconcile this endless search with my Buddhist studies. Those studies told me to live in the moment, to be present with whatever arises, to learn to love what was right in front of me. I wasn’t sure how to align the need to have answers about my child’s condition and my belief that honest and loving acceptance of what is in front of you is the best way to live.
We don’t really understand acceptance in Western culture. Or at least I didn’t. I felt like accepting my daughter’s diagnosis was a kind of capitulation. Acceptance felt like giving up, so I resisted it. We spent every penny we had. We turned every meal into a therapeutic endeavor. We sued our school district so she could go to private school. We watched her like hawks waiting for evidence of improvement. Our sense of wellbeing was entirely wrapped up in whether or not Mae had a good day or a bad day, on whether or not she was “improving.”
After almost two years of battling with an enemy of our own making we couldn’t do it anymore. We had no more money for therapies. We were tired of meals whose success hinged on whether or not she sat and used a fork. We just wanted to enjoy our family again. So we stopped. Instead of trying to solve the “problem,” we worked on accepting our daughter for who she was. She stopped being a diagnosis and became our daughter again. It doesn’t mean we don’t work to make sure her life is filled with activities and people who nurture and care for her, or that we don’t high five her when she joins us at the table, or demand that she use her limited language skills whenever possible. We do all those things. It also doesn’t mean that I don’t occasionally get sad about the things she could be doing this summer if her brain were wired just a bit differently. I would be lying if I said I never think about it.
In our case, acceptance was not capitulation. It was actually a very conscious and loving gesture towards both ourselves and our child. Learning to accept her diagnosis and what it meant both for her and for us as a family liberated us from our own expectations. I have found that the more willing we are to accept the truth of difficult situations the more easily we can adapt to them. When we resisted the hard truths of Mae’s diagnosis by insisting we could fix it we were blind to what was really in front of us, which was a beautiful little girl with a twinkly smile and an awful lot to teach us.
As school vacation ended this past week, I was desperate for my children to go back to school. When we have all been in the house for a little too long there is an itchy, restless feeling around the edges of everything they do. In my body it manifests as massive fatigue. When they were all home it felt like a huge effort to do anything, the second they left I found myself energized and able to address my to-do list.
I don’t like that itchy, cranky feeling, it feels like a lack of gratitude. Sitting in my warm safe house with my three kids and my loving husband and feeling unsatisfied seems fundamentally wrong. I know I only feel this way because I am desperate for us to return to the routine that comes with school and work. Even knowing that, I search for an antidote, I remind myself how lucky I am, I sit for meditation, or go for a run. Truly there is only one thing that really helps, and for me it is reflecting on the alternative.
Last New Year’s, Colin wasn’t feeling well. He was tired, stressed and his back hurt. In fairness, we are both tired and have been since Ben appeared in 2004, so when he complained of exhaustion, I ignored it. When he talked about his back hurting I told him to stretch, put your legs up the wall and breathe deeply. When he said he was going to see a doctor, I shrugged. The doctor ran a million tests and they were all inconclusive. Colin’s face was slowly turning gray but I couldn’t see it. I was too busy thinking about the details of our life. The kids’ schools, our leaky roof, our muddy driveway, my own aches, pains and frustrations. I was so engaged in our day-to-day that I wasn’t able to see that my husband was fading away. Or maybe I didn’t want to see it.
In February he had an angiogram, and they found and cleared a significant blockage, one they call the “widow-maker.” At the time I just focused on how lucky we were. I heaped praise on Colin for seeking out a second opinion. I talked about the miracles of medicine and joked that he had eaten his last cheeseburger. We have a habit in our family of turning difficult realities into punchlines and this was no different. He would joke that with his new “gear” as we referred to the stent that he was like a newborn; he could throw himself into bad habits with gusto. I would feign horror, knowing that we would find some easy middle ground.
It wasn’t until the end of this year that I really thought about how differently the story could have ended. There are many skilled practitioners of Buddhism who can find gratitude without thinking of what could have gone wrong. I am not one of them. As 2015 ended, I found myself thinking more and more about what could have happened, about my life without Colin. Not just the practical financial aspects, which would be grim at best, but also the impossible loneliness I would feel in his absence. When I find myself irritated by the hundreds of water glasses he manages to use and leave behind in a day, or the peanut butter with a knife sticking out left on the counter after lunch, or the fact he never quite remembers to close the fridge…. When I see those things and start to think to myself “what the ????” I think about the other ending we could have had to 2015, the ending where my husband got so gray that he disappeared altogether. When I think about that I don’t even see the water glasses or the peanut butter.
One of my favorite phrases in Buddhism is “skillful means.” It is used to describe the many different methods available to people as they search for truth. The longer you practice, the more clear and efficient your means become. It isn’t especially skillful to appreciate the life you have by imagining the worst case scenario. But for now it’s what i am working with. I cannot seem to learn the lesson enough times that the real treasures are hidden in the most ordinary days.
I turned 40 this summer, and now I have something new to worry about. Ever since my birthday, any ache or pain that arises I think to myself, did I sleep in a weird way or is this 40? A few weeks ago I went for a run on a very hot day. I had stayed up too late drinking tequila and laughing with friends. Needless to say, the run was not a thing of beauty. The whole time I was thinking to myself. This is awful. Is it the tequila or is it 40?
The number has become a catch all for my fears. I have fallen asleep on the couch a couple of nights in a row. Am I tired or is it 40? My jeans are a little tight. Is it the guacamole or is it 40? It’s a game with virtually no end, and in some ways it’s nice to have something to blame for any unwanted behaviour. I don’t have to take responsibility for my short temper, or my disinterest in cooking. I can blame it all on 40.
Of course I know this is ridiculous but it is very funny to see how this new excuse came to live in my head. There is no question that my forty-year-old hips and knees feel different than my twenty-year-old ones did. The equipment has had industrial use; it’s entitled to some aches and pains. Should I be gentle with myself if I am feeling short tempered or achy? Absolutely. Should it have anything to do with me turning 40? No.
What I can say is that I now have the wisdom to see when I am getting in my own way…sometimes. While it can be handy every once in a while to make excuses, the old ones of stress, exhaustion, or infants don’t really have the oomph they once did. 40 is like a whole new landscape of excuses. I was explaining to a friend this new story line of mine. We were laughing about it because it does sound so ridiculous when you say it out loud. She confided that she found herself doing the same thing except for her the phrase is “I am almost 50…”
Age, like weight, is a useless statistic unless it is somehow way outside the norm. After you stop counting your age in weeks or if you aren’t deep into your 90’s your age is really subjective. I know very few people who hit their stride in their twenties, but many who did in their forties. I am, as always, a work in progress. If I stay up too late drinking tequila and then decide to go for a run on a hot day, and it isn’t awesome….that’s not 40’s fault. That is only proof that wisdom doesn’t always come with age.
I am a polygamous parent. We all are to some degree. If you have more than one child you know they need different parenting styles and norms. In our case having two sons who are neurotypical or normal and one daughter who is severely autistic, we are almost constantly managing two distinct families. We are lucky in that our sons adore their sister and vice versa. Since the moment they left for sleepaway camp she has insisted on spending hours sitting in the car. Despite the fact that she can’t speak she understands that eventually that car will bring her back to her brothers wherever they may be.
As parents, the experience of two of our children leaving for a month is really strange. There is the constant and vague feeling that I have misplaced something. The chores are greatly diminished. Both the dryer and dishwasher must be secretly wondering why they are experiencing this reprieve from constant activity.
I miss my sons, but the opportunity to be just a special needs parent, to not have to toggle back and forth feels like a break. I can cater completely to Mae’s needs. I can sit with her in the car in the driveway, or hold her hand while she eats, or take her outside so she can tap and touch every surface of our deck. I can do all of this without feeling like somewhere a boy is bored or needs help with his homework. Our boys are safe and happy, camping and swimming off the coast of Maine, while we are able to live on Planet Mae and not let anybody down.
The hardest moments are when the boys have disputes that need settling or hurt feelings from an event at school. They will come rushing in the door, desperate to tell me their tales. If the timing is right and Mae is at ease, I can listen completely and offer advice or just my lap. If the timing is wrong and she is upset, they will strain to tell me their story over her wailing and I will strain to listen, with all of us unable to ignore the friction between the two worlds that coexist in our house.
Being a polygamous parent is hard. It involves managing different school systems and communities. It requires babysitters for family dinners or trips to the movies. The upside is that when I have the luxury of only parenting one child in her very specific way, it feels like a delicious holiday. If I was left with only one of the boys it would be excruciating; he would follow me around endlessly wanting me to fill the shoes of the brother who was away at camp. However, with Mae she is thrilled to have us live in her world, to have our house be quiet and predictable. It’s emptiness means more space for her to roam on her missions whose purpose is known only to her.
We will all be delighted to see the boys, and Mae more than any of us. She keeps going up to their room as if they are hiding under the bed or something. But in the meantime I will enjoy not having to change gears, I will live in Mae’s world with no sense that I am letting anyone down and it will be lovely.