Thankful Tuesday: For the Spaces Between

As Jessie gets older and matures and creates her own life, she doesn’t quite need us as much (or, some days, THINKS she doesn’t quite need us as much) as she used to. She gets to classes and appointments and events on her own; she wakes up on her own; she makes decisions about the courses she will take or the movies she will see on her own.

She still, however, sometimes needs me to drive her to performance or workshop commitments with Propeller Dance or the Down Syndrome Association. And while I sometimes grumble about the time it takes away from my work or the way she often just expects me to drive her, I am learning to be graceful about the interruptions and to enjoy the forced space they create in my life. Space for God and friendship and beauty to break through, if I let them.

Yesterday, for example, Jessie had a gig in Richmond, about half an hour outside Ottawa. As we turned down the back road that crossed over the Jock River and ended at the school where she was giving a workshop, I noticed a maroon and gold sign with an arrow. It read “St. John’s Quiet Garden.”

An invitation. Which I accepted.

l left Jessie at the school, zipped up my coat and stomped through the mud to the garden that was, indeed quiet in its blanket of white—with not yet budding shrubs poking through the deep snow. There was a sign indicating that there were two labyrinths buried somewhere underneath. And while I fear I have become a bit of a loose woman around labyrinths, I did not mind just wandering over the promise of a mindful way in to the centre. And I did not mind walking slowly around imagined perimeters or stepping gently on the untrammeled snow—there is not much call for outdoor labyrinth walking in a Canadian winter.

And I remembered that I had a camera:

So I am thankful for what I saw, and thankful too for these spaces between mothering that Jessie’s growing independence is gifting me.      

I Don't Miss It {Ellen Stumbo Writing Prompt}

{from Ellen Stumbo's beautiful blog's writing prompt for this week}

Not one bit I don’t. Miss, that is, advocating and struggling with the school system to fully include Jessie and educate her. While we have other struggles and challenges now that Jessie is out of the public school system and dancing her way through life, I can say that I do not look back in fondness on those years, or at least those moments, marked by the sheer frustration of battling what felt like an immoveable, illogical, uncaring, unresponsive, patronizing monolithic establishment.

Jessie was usually the first student with an intellectual disability to be fully included in regular classes. The early years, I will admit, were often fun. God’s jocular inoculation of my drive and will to the brute force of a system bent on not bending. Those early elementary years were when the team worked best—we all (teachers, parents, school community) had a sense of humour and delighted in the unfolding adventure that was inclusion. We all knew that we really didn’t know what we were doing, but would share the best of our experience, knowledge, and creativity to figure it out. We did know that inclusion was the only thing that made sense and that its difficulties offered myriad opportunities for growth. We figured out what each of us did best, and then did it. We recognized and honoured each other’s intentions and always brought homemade muffins, and the good kind of coffee, to meetings. There were, of course, challenges. As teachers, administrators, and the curriculum changed, we had good and bad years. But it was not until high school that I really needed to work some prunes into the baked goods.

We should have known when, even after the elementary-high school transition meeting—where Jessie’s grade 6 teacher promised to bodily harm the resource teacher (God, I loved that grade 6 teacher) if they did not have the accommodations in place when Jessie started school so that she could continue to learn and grow and blossom into the creative compassionate Jessie she knew she was—the high school had not one single accommodation in place when she crossed the threshold with her friends. But should have known would not have changed our decision to send to Jessie a regular class at the local high school. We quickly rallied allies, friends, and resources to support the school and lead them into supporting Jessie so she could continue to learn and grow alongside her peers. Did it work? Perhaps. In most cases, when we pushed and moved up the ladder of responsibility, we “won.” Principals and teachers were dragged from above to do what was right (in all senses of the word), what was required.   

I think Jessie struggled with finding her place, but in the struggling grew strong and carved a place for herself, identifying her belonging and contribution in a way that convinced her of her own strength and meaning in a broader community. She’s a sucker for a cause, wants to fight for her and anybody else’s rights. Perhaps all the struggling with the school convinced her that even if you don’t win, the struggle is worth it.

Worth it. Yes. But I do not miss it. I do not miss being asked to make a choice between having the curriculum adapted and having an aid. I do not miss a teacher questioning the value of teaching someone like Jessie about cell structure. I do not miss fighting with a school that defends mounting a community play with vigourous use of the word r#tard. I do not miss a point-blank refusal to adapt the curriculum or to follow a written plan (“But if we write it down we will have to follow it!”). I do not miss being yelled at for taking notes during meetings. I do not miss hours spent learning how to write a letter, making sure I take every emotion out of recounting a challenge and stick clearly to only the facts. I do not miss coming home and (WASP ice princess that I normally am) throwing a Cuisinart bowl across the room into the wall and collapsing on the floor with tears and snot and bubbly body fluids cascading out of every facial orifice in sheer frustration at a system so bent on not making inclusion, or learning, possible for my daughter.    

That part I do not miss. I will confess though, that I do miss wearing the Mothers from Hell biker jacket that I have stashed away in my closet. It represents the best part of that journey: coming together with other hellions to battle for the rights of all children—to be educated, respected, and beloved.  

To see what others don't miss, go to http://www.ellenstumbo.com/i-dont-miss-it/?utm_source=rss&utm_medium=rss&utm_campaign=i-dont-miss-it

What Really Matters {Ellen Stumbo Writing Prompt}

What really matters is love.

Love underpins life. Especially life together, because that is where life leads us—together. Love is about relationship: with ourselves, our children, our family, our lovers and life partners, and, underneath it all, if you are so inclined, God.

Love is my challenge. It’s what gets me up in the morning and then beckons me into tasks and relationships I am not sure I know how to do. But it matters deeply. And it’s what really matters in my life with Jessie, as I try to mother through this transition—hers and mine. Sometimes I stumble upon love in her laughter or her singing scales in the bathroom and it pierces me with its sheer delight and depth. Sometimes I pursue it relentlessly, asking, endlessly asking, what would love do? How would love respond? Because I am at a loss and my rational logical mind is not coming up with solutions that work.

Love is underneath all the therapy, advocacy, learning strategies, rules, and problem solving. But sometimes love gets lost there, under all the layers of care that go into raising a daughter with a disability (or any daughter, so I am told). Because without a gentle touch, a hands-on or spiritual caress that honours and frames her being, these layers of care become intrusion. And I lose sight of what I want and who she is. And I have to parse the pieces and hold them up to the light to find each brilliant colour.

And to lose something too. The sense of molding, shaping, forming. God does that. And I am here to learn to love. That is the only way to mold, shape, or form that matters. And it has taken me this long to even name it. And it will take me even longer to learn it. But I get to practice. Every day.

Go see What Really Matters to others over at {Ellen Stumbo Writing Prompt}

How Being Jessie's Mother Helped Me Fulfill My Horoscope Today

I am sitting on one of the big comfy chairs at the Bridgehead coffee shop with just the right slant of late afternoon November sun backlighting the steam rising from my café au lait. This is the five-minute slice of my life that I am savouring and pretending—if I close my eyes just so and squint, the way you do to see things slant—to own as reality. But this five-minute slice belies the three-hour hunk where you would have found me huddled with Jessie in our teeny tiny bathroom holding her sweaty head as she retched, for hours, over the toilet.

Forward to 8 am phone calls trying to rearrange her day and buy some space for her to recover, while still meeting some of her commitments, particularly those that would have caused her great distress to miss. We settle on the noon-time speech on employment and mentoring for the Women in Leadership meeting and a pared down afternoon dance rehearsal for an upcoming funder meeting, and we punt the morning meeting with a mentor to work on a speech and the evening performance at the university students' union. Then, I rearrange my day to make it all possible, which, in order to give Jessie an exit strategy just in case she feels sick again, means putting my client’s work on the back burner and becoming chauffeur and accompanist.

So, what started out as a full day of work (because Jessie would have been out on the road doing what she loves best all day, and getting to and fro on her own) quickly bled away until all that was left was the chance for a quick pencil edit, in the coffee shop, of a two-page summary.

The trick, of course, is not to hold on to expectations, but to be nimble and quick in shifting gears and not holding anyone hostage in the transition. The trick then, is not to wonder how you would ever hold down a job that wasn’t freelance or to count the hours not billed, but to roll over wonder that you got to sleep in (never mind that you only got four hours sleep) and wake with the sunlight dappling the trees. To sneak into the Women in Leadership meeting and listen to a wonderful discussion about mentoring women and people with disabilities and to the talented and bright and energetic youth with Down syndrome captivating the audience with their dreams, hopes, talents, aspirations, and challenges in finding employment and careers. And to sit in a coffee shop with a café au lait and a newspaper horoscope that reads:

If I am not fulfilled, at least my horoscope is—because being Jessie’s mother certainly ensures that I don’t “waste my day entirely on work.”