At our old, round, love-worn pine table, backlit by the kitchen window, she sat crisscross, her purple manicured toes up to her mid-calves bare to the winter chill. For days during our snow, sleet, rain, stop-and-go late January through mid February, we’d been telepathing each other. Her letting me know with a long stare what she wanted and half expected, half demanded. Me, at times, communicating audibly that she could get up and get it herself. Me, at other times, delivering it with a pang of guilt that doing so was an injustice to her for not making her do it herself—forcing her to cobble together her impaired neuropathways to eek out some form of verbal communication.
And then it hit me in this real-time experience. Of course, not for the first time. But fresh, for the first in a long time: The enormity of the responsibility before me. This beautiful young woman, my daughter, sitting before me, with a peaches-and-cream complexion and bed head, on this Valentine’s day. Here I am. Here she is. Me 55-and-one-half. Her 21-and-one-half. No end in sight as to when we both will celebrate our Independence Day from each other. Her needing me. Me tending her needs—developmentally all over the map from a toddler to a nine-year-old to a young adult woman.
That is how it is done in our country. Children grow up and move on. Eventually. And, eventually, it is my aim that Grace will, too. The how is still not clear. But the pathway is much more visible than it was just a mere six months ago. People bitch and moan about state rights and federal overreaching. I say thank god for federal mandates! Our state and the rest of states have been set to task for doing the right thing, the evidence-based, best practices of what is just for people like my daughter to work, and live independently as possible. Just as we all seek to be educated, live, and work, likewise, in community. How this will look is unclear. But for the first time in many, many years, I have some hope for greater respite, plus needed behavior and employment assistance. Our state, as others, are still working out the details for a new more comprehensive plan of Medicaid coverage for their citizens with developmental disAbilities.
I’ve been MIA increasingly here on the blog over the last year and haven’t posted now for three months. I wondered if I’d ever come to this point. Starting a blog in late 2008 was one of the best decisions I’ve ever made creatively and professionally. About a year ago, my blog was redesigned to coordinate with a redesign and launch of Grace’s website. Mine launched about seven months ago. A much feared loss in the transfer from one platform (Typepad to WordPress) became a reality and I lost the majority of my links and pop-up list images of my photos. That and the personal transformative work I’ve been doing the last nearly five years, and the transition that both Grace and I are currently in, led me to “let the dog die,” as we used to say as children when we slowed to a stop the swings on the playset.
I haven’t stopped writing. I’ve written blog posts since November that haven’t been published here. Blogging is work. Writing. Proofreading. Links. Uploads. Sizing. Social media. SEO’s. And, blah, blah, blah. And, alas Facebook added another punch in this blogger’s gut in that my blog links, which would take a viewer off of Facebook, are purposely buried by their computerized algorithm. It’s nothing personal, I realize. It’s just the nature of doing business and making money. Incomprehensible to many, I realize, I never set out to make money with my blog. Rather, it has always been about idea exchange, promotion of my writing and book(s) and to promote Grace’s art. I purposely never chose to do sponsored posts promoting a company’s product, (with a couple of exceptions and poor outcomes,) or accept paid ads on my blog. That’s one way people earn money on blogging, but it takes a lot more than that, such as making it a full-time endeavor. I hated the Typepad blogging platform for its lack of bells and whistles and resent WordPress for the neediness of its plethora of nooks and crannies. I’m not changing it back. Not after this long awaited re-design. After eight years, and if I read the bells and whistles number counting mechanism on this wing-ding platform, this may be nearly my 1500th post. I’m giving it a rest. With exception of something that compels me to come back here at some moment to author a new post. I’ve had plenty of those chances in the last three months but little drive to carry through. I’ll continue to update the calendar and send out occasional newsletters about our events. And I am attempting to find the time to finish Grace’s much-much needed new website.
In the last year, I ramped up the time and energy I place in Grace’s art business with semi-regular exhibitions and regular participation in artisan markets. For soul nurturance, I’m creating my own visual art more and more, though mostly in the form of what works for me at this period in my life: iPhoneography. Please follow me on Instagram. You can still follow Grace on Facebook and also now on Instagram.
And, just as I’m still writing, albeit less frequently, (and also have put work my second book on hold,) I’ve not given up my dream of seeing to fruition of an *inclusive* nonprofit social enterprise supporting artists with disAbilities. **This is something that is difficult for people to grasp. I am but one person. A single mother and a mother of a young adult daughter with disAbilities. I know through three decades of experience that I must continually strive for balance in my life to make it for the long haul. This is something every special needs parent desires: to be there for their son and daughter throughout their entire lifespan, because they, again, have levels of dependency that are not duplicated in typical parent-child-family dynamics. Furthermore, our culture does not grasp the concept of balance. Instead we reward and praise those who do not listen to their bodies, their need for nutrition whether edible, respite, and or spiritual, etc. So, I’ve got the “blue print,” for “Art Tank;” and over a period of years also done the multi-state and program research, I have the volunteer artist-supports, know my consumer artists, know the need, understand art, art business, but I cannot pull off even starting a nonprofit on my own. I’ve attempted it and I did run a social enterprise for one year until my partner needed to pull out for other business reasons. If I find someone/people who aren’t there just to tell me how to do it, but have the desire, savvy, business expertise and liaisons to do it comprehensively and/or bring in others, then so be it. I have never aimed to be the executive director, but the founder, a willing marketer and programming leader. Maybe it will happen. In the meantime, there’s Grace, me, and this murky fog of transition we’re facing.
The ego in this and all of what I’ve done is gone mostly. That has been much of the point and focus of the work I’ve done with a mystic shaman the last four years—akin to living in an ashram or working with a Zen master. I’m starting over. And so is Grace. We aren’t sure where the path is or where it will take us. I’m working to do as she does everyday. Live in the moment. And, at the end of each moment the next step will be determined.