The juiciest, most voracious years of my life for loosing myself in between the pages of a library's worth of books were in my mid-20s when I rode the bus and train from the suburb of Stone Mountain to midtown Atlanta. Followed by the years I spent cumulative hours upon hours nursing my child. Since her father began traveling, then commuting and then the eventual divorce, my reading has consisted of grabbing 10 minutes before I can no longer keep open my eyes and I turn out the light just prior to a rapid tumble into slumber.
So, it's taken me months to consume the pages of a fairly radical book of essays by alternative mothers, whose long lists of differences from societal norms include having children with special needs. I will review this sharply written and edited book here, on "The Journey with Grace," when I accomplish the feat of finishing its delicious pages.
Meanwhile, its tell-all, raw and boldly honest pages are challenging me ever more to examine how I tell my story of this special needs life. The women who dared to chronicle their candor in between this book's covers are Holland Schmolland mothers. And, these days, I'm definitely finding myself again in a new landscape on the real-life pages of the journey with my daughter Grace as we stand on the precipice of adulthood.
At the start of the journey it was all new. Brand-spanking. As if I'd just been hit. Really hard. Unexpectedly. I had to find my sea legs back in those days. I could see the divine providence in it all pretty quickly. But I had several years of fits and starts when learning how to maneuver certain systems and manage the details without forever losing my balance or myself, as well. Now, that I'm an veteran of sorts on this pilgrimage, I find the path has forked and I'm a bit lost again, damnit!
Where's the GPS?!
Being the chronic seminar-holic, from the get-go, I attended trip planning sessions galore for this eventual turn in the journey. But having arrived here, I've found myself quite pissy at times. Shall I blame it on menopause?
I think it's important to tell the truth: Sometimes this is the shits, man. I'm watching my friends become empty nesters, although part of me is convinced we are all still our young 25-year-old selves, like the one that rode the bus and the train, nose obliviously buried between the covers of a mesmerizing read although she barely finds the time for that literary luxury now. Like my mother-sisters I'm longing to stretch and fly but I find my wings are clipped by the demands of my child.
Today, I spent $100 on upgraded brand waterproof mattress covers and pads. The cheap ones wear out from repeated (read several times a week) washings when my 18-year-old wakes up with a soaker. I got behind on laundry and each night after dinner I stack another set of clean clothes into yet another basket waiting for me to fold them.
Tonight, in our new condo, I directed Grace to put up a cup from the dishwasher, not in the cabinet with the drinking glasses but "above the sink." Above. Below. Shit. We still have not mastered prepositions. Prepositions are pretty important when telling my daughter to perform some simple task.
She got into my bedroom while I was in the shower this morning and rearranged objects to her liking. I lock the door to my bed and bathroom at other times so she won't eat my lipstick or dump my lotion. This was a new one. I don't won't to lock her from access to ME.
I'm tired. I need help. The state of Tennessee does not give a damn about its residents who have a disAbility.
I've often wondered if I seemed, read, sounded like Pollyanna about this life. I look to my heroine and know that it is so possible to have joy amid the challenges. And I write about that. That is how I learned to cope with these challenges. That and lots of perspective. The perspective of knowing that I have much. I could have less. Believing that before coming to this life this time, my daughter and I chose each other and these circumstances to learn and evolve. And knowing that the only choice of sanity is to accept what I cannot change and to love, accept and embrace what is. Sometimes. Like now. That's harder than others.
I feel my voice has a place in our world, a song that goodness can be found in what's different and what even causes pain and that how we view and label that pain eases and even diminishes the pain to a great degree. That same voice has notes of disharmony, I hope. I want to strike a chord of discordance because it's real, like those mothers in that book that I'm taking forever to read.
We are out there. Hundreds of thousands of special needs parents living this journey. Our voices must be heard. The funny parts; the warm, tender and rewarding parts; and the uh, the parts that cause one to wince and cringe.
Because. It's real.
Maybe. Maybe, if it's heard, we'll get some help. Maybe. Maybe, if it's heard, we'll get a little more understanding when we are out and about. Us mothers and our special kids. Maybe. Meanwhile, I'll keep telling our story, the cuddly, fuzzy parts and the show-and-tell warts and freak show. All of it. Because, it's real.