week 1

Going to church: preface to a new phase

Last week. The monthly support group I attend at a local church falls on on my birthday. We are making Vision Boards, which seems like a great way to start a new year of life. I’m not a very crafty person, and I can be cynical about this sort of exercise, but I’m feeling pretty hopeless these days so I figure what can it hurt to cut and paste an assemblage of words and images that represent those things that bring us joy, and the faith that we can access them.

I’m here for the fellowship more than the activity, the chance to connect with this small group of women  – all mothers of children with disabilities or mental illness – that I have grown to know, admire, and love.  Seeing each other just once a month we have the perspective to see the growth and change we've experienced, to gain strength in seeing how others persevere through even the most dreadful of circumstances: hospitalizations, confrontations with police,  struggles to find schools and therapy that will help our children to thrive, challenges to keeping ourselves from sinking into despair.  We listen, commiserate, laugh, connect and after an hour and a half I have a bright green poster board filled with what for the moment, I can imagine returning to my life:  financial security, rewarding work, freedom to travel and explore, joy, faith, community.

I go to use the bathroom before leaving, which requires going through an AA meeting in progress in the large kitchen/dining room down the hall. As always, I avert my eyes in respect of the anonymity of the program.  As I’m leaving I hear someone ask, “Any anniversaries?” And a barely audible voice responds, “I’m celebrating one year.”  I exit the room to the sound of applause.

One year, what a great accomplishment! I think of all the hard work he’s done to get there, and the people in the room that continue to help him, the way that he in turn inspires those new to the program or struggling to keep their sobriety, just as he has turned to his sponsor and other old timers, the circle of service and camaraderie that lifts all spirits.

One year, I think, and it inspires me anew. One year from now, what might I be celebrating? Is it possible that my work or ideas will ever be valued, my voice will be listened to again?  Can I be of more service? What if I simply celebrated the effort, the act of not giving up? Of allowing my life to be what it is with all the insight and humor and honesty of someone who doesn't look away from the truth.  Could I do that as a way to inspire and encourage even one other person who feels as I do now, to show that nothing is permanent, including our darkest moments?

I stopped writing this blog, as I have several times before, because it seemed to confirm my worst fears about the frequent chasm between having a voice and being heard. I recently read that over 90% of blogs are abandoned within the first year because of disappointment that no one is reading them; at least I'm in good company.  

So I'm going to reclaim this space because it's free real estate, and a more cohesive, manageable way to chronicle the next year than the half dozen notebooks I scrawl with my thoughts and daunting to do lists with items that will take years to complete. (1. research, visit and  get on 5-10 year waiting lists for residential programs for V while simultaneously finding resources and then coordinating help to increase the independent living/community safety/social skills that will make it more likely to be accepted into said programs)  If anyone out there wants to read it, knock yourself out. Seriously, I'd love the company but I have no expectations anymore, which is very freeing.

So here’s Week 1:

1. Home

Glad it's June because May has been flowering trees followed by lots of rain and challenges.V has been obsessively putting on layers and layers of shirts, sweatshirts, jackets, sometimes four or five at a time. He’s been wearing hoodies over a pressure vest for sensory input (and yes, I realize that if I had a black teenager with autism there would be higher stakes for that uniform), but clearly he needs even more input, hence the layers.  As is often the case when problem-solving with someone with constrained verbal skills and lots of sensory issues, we can conjecture but it’s hard to solve these continual mysteries.  

It's a struggle to remove all the layers once he has them on. He's 17 now - lanky and lean yet strong and stubborn so when he refuses to take them off, there's not much we can do. Often the only option is to suggest a bath so that he will undress. He's been exceptionally clean lately, and we finally just emptied out the closets and the hallway hooks and put everything  in the attic or in hiding.  

So now he’s become obsessed with...the hangers! Yup, he's carrying wooden hangers around wherever we go, which reminds me of many years ago when he had a similar affinity for pieces of wood he would find outside. He even had a pet log for a while which he tried to take everywhere. (He cried when the bus driver wouldn’t let him carry it to school.) 

Yes, it's okay to laugh. And later, to cry. And to know that some days all the meditation, walking, deep breathing, journaling and healthy food in the world won't do as much good as a long Netflix binge, dissolving ourselves into the lives of others, as Auden wrote.  

B is home for the summer. Hard to believe he is half-way through college. Great to have him home although he is not around a lot, between starting a summer job and hanging out with his high school buddies. I’m glad he has such a great tight-knit group of friends, a social life. It makes me feel a little better about being stuck here, that it's been a good place for at least one member of the family.

2. The world: Idea of the Week

From the network that didn't bring you Girls, Friends, or the many other comic collections of relatively privileged, photogenic young people making their way in the world, we bring you: Darlenes.  

While thousands of articles, tweets and thought pieces have predictably dissected the recent downfall of Roseanne, the second most prolific tweeter of racist, anti-Semitic rants and unfounded conspiracy theories that are now acceptable to air in public, let's remember the short-lived attention on the heart of the show: the trajectory of Darlene, the smart, sarcastic, talented younger daughter who broke free and pursued her dreams (college, writing, life in the city) only to find herself a broke, single mom in her 40's with no health insurance - yikes! - moving back in with her parents.

She & her kids, her Aunt Jackie, and a wild and crazy group of economically insecure women in their 40s-60s (kids welcome) pull a big heist (update bank to some deplorable dot.com billionaire?) and use the money to:  start a kibbutz; fund the campaign for one of them to run for public office (season finale: she wins); open a communally run farm-to-table restaurant/animal rescue center/affordable daycare center and job training program for people with disabilities...the possibilities are endless when you have a group of smart funny older women who have a reason to be bitter. Bring on Barbara Eirenreich as a consultant along with a member of the civil rights brain trust that helped with the Starbucks 'sitting at a table while black' incident, and a writing staff - including any of the original writers who are game - that is diverse and funny in every way.   There is an audience for this, really.

3. Grace in Dirt 

I’ve planted most of my garden, which is physically and spiritually fulfilling. I prepare my plot, pull weeds, mix seeds with egg shells to help enrich the soil, plant and water.   With each seed I name and envision all the transformation I dream of, and the dirt holds the memory of things taking root.  Gardening is the perfect activity for someone in the depths of despair, a way to cultivate faith that things do grow and change.

Stay tuned as sprouts push through the ground...