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.      

Jessie Blogs

Over at the Propeller Dance blog....

I'll be joining you for thankfuls tomorrow, and a bit on the Red Tent Experience the day after. Stay tuned. 

My Bite-Sized Contribution . . .

. . . to the bite-sized blog hop,  hosted by Meriah over at With a Little Moxie, for World Down Syndrome Day.                 

FACT: The only true disability is loneliness. (Thank you Colin Newton & Derek Wilson of Inclusive Solutions in the U.K.) I could parse that out, but since this is a bite-sized blog hop, I’ll just let you sit with that and see where it takes you.

FALLACY:  People with Down syndrome are all so ______________ [fill in the blank, I’m sure other bloggers will be exploring all the many options!]. Blanket statements about any group or experience (i.e., parenting a child with Down syndrome) completely take away the gift of the particular, which is really where God and relationship reside. And the beauty and grace is when the commonalities and links—between and among people—are discovered and explored, not assumed.  

PHOTO: My all-time favorite, as it seems to capture Jessie’s infectious and indomitable spirit (and perhaps might feed one of the fallacies above): 

Plus an additional photo just to offset the fallacy-supporting one: 

RAW , or Adventures in E-Mail Land

I love my husband. He keeps me sane. I know that on a raw day I just have to email him with some blathering chronicle of the day thus far and this storytelling, or act of confession if you will, is an absolution of sorts that sends me back on my way. The fact that he commiserates just strengthens me to be more calm, more patient, more kind.

Last week, Tuesday to be exact, I wrote a prophetic email that is an apt description of why I have a hard time envisioning working from anywhere except home. Except in my fantasies. Note [square brackets] are my clarifications.

Tues. Mar 12, 2013 at 11:49 am

Nancy

To: Dan

Oh man . . . I came home. [Dan and I sometimes start the day by going up the street to have a coffee together at our local coffee shop. I find it helps me be more productive and is a good way to mark the beginning of my workday. We find it also makes us feel like grown-ups.] Jess and I agreed that I would meditate while she had a shower and then got to work on her blog and email.

Then, in the middle of meditation she calls from above. She is feeling faint [Jessie has these random fainting spells. Not often, but, well, that’s another blog.] Also, she has not actually had her shower, but has been shaking her shaker. [Okay, that just sounds weird, but it’s what we think is a sensory integration issue and she shakes this thing that is like a large tassle for a curtain. Again, guess I should blog about that.] I walk her through what to do when she feels faint and get her to lie down with her feet up for half an hour or so. She is still pale, but better. She goes in the shower and her phone rings. Then a text. It’s Caitlin [Caitlin is Jessie’s community connector from LiveWorkPlay, the organization that supports Jessie through these transition years]. Waiting for her at Tim Hortons, but now on her way back to the office because she has waited 20 minutes. It was hard not to get angry at that! [Note, Jessie is responsible for her own appointments, as much as possible. She uses Google calendar which is synced to her iPhone. Also note, 4 missed meetings and she could be dropped from the program.] Then Jessie decides that she needs to go to the bank on the way to rehearsal because she wants to take money out because she wants to eat out before rehearsal. I am not even going to try to reason, it is her decision. BUT this, of course, need trumps any trying to finish her work or problem solve what just happened with Caitlin. She does call Caitlin and says she is really really really sorry. But she is so intent on getting out of the house in time to eat before rehearsal that she will not sit down and problem solve or finish what she is supposed to do.

I did tell her that because we were not willing for her totally jeopardize her LWP support, she needed to make a list of what she had to accomplish (including problem solving) before going to the DSA meeting [our local Down Syndrome Association where she is co-chair]. So I did force her to do that. So that was my morning. How was yours?

p.s. I am writing this to you because it may be Thursday’s blog, but by Thursday much more will happened and I will forget this stream of blurred existence. [That was the prophetic part.]

n {{hugs}}

Tues, Mar 12, 2013 at 1:15 pm

Dan

To: Nan

Hugs [what he calls me]

AAAAARRGGHH!!!!! I’m going to STRANGLE that kid (if you don’t do it first)! . . .  The only silver lining in all of this is that it keeps supplying you with raw material for your blog!

Dan

Tues, Mar 12, 2013 at 2:10

Nan

To: Dan

RAW is right!

Thankful Tuesday: Rambling

Its Tuesday and I am joining in with Thankfuls over at Mama Monk’s … where we could all wish her son Brooksie a happy birthday!

Today I am thankful for the weird windings of my days bracketed by insights and celebrations. I am thankful for:

• Red Tent Thursday (local Red Tent monthly gathering of women, sharing food, stories, dance and song) followed by silent retreat Friday (Christian Meditation 2-day retreat) culminating in high Anglican Evensong (which, in addition to the sung Evensong, included the monstrance and incense). 

• My therapist Kim who is helping me to discover the untruths that I so totally believe and that so totally interfere with my ability to both discover the future and hire a contractor to fix the leaking shower.

• The days I go away and find out that Jessie actually takes some of my teachings to heart. As when Dan was unsuccessfully trying to describe a tricky problem of etiquette (how to invite yourself over to dinner without actually asking to be invited for dinner; don’t ask) and Jessie said, “I wish Mom were here to teach me how to behave properly!”

• Farm Boy fresh food and grocery store for making almost homemade chicken soup, so I don’t have to and because Jessie insists on chicken bits in her soup when she has a cold. Which she does.

• Vitamin E cream to minimize the rawness of the rubbed-red skin around Jessie’s nose and mouth.

• My husband, for shoveling this morning, even though I have no work and nothing better to do than shovel! (Oh, and drive Jessie to rehearsal, because I’m not letting her take the bus in this last gasp of winter with a cold).  

Jessie Flips: About the Creative Process

Jessie and the Propeller dancers are thick in the creative and rehearsal process. Instead of the usual Friday Jessie Flips here, I will be linking you over to her Propeller Blog. Pardon the lateness. Monday will be catch up time! Full of raw material, truth telling, and red tents... oh my!

Thankful Tuesday: Bonhoeffer and Thanks for the Little Things

If this is Tuesday, then I must be thankful. Or so Mama Monk and Bonhoeffer remind me. Mama Monk because she hosts Thankful Tuesdays and keeps me occupied with remembering the small delights. Bonhoeffer, because he is accompanying me (or I him) through Lent and I have been instructed to write in my journal, daily, a list of those things for which I am grateful. To start, I am grateful to Bonhoeffer, who reminded me in the midst of my anguished interior wailing about my own defects and lack of joyful faith, to give thanks for the little things. He writes (in Life Together, p. 37)

“. . . We pray for the big things and forget to give thanks for the small (and yet really not so small!) gifts we receive daily. How can God entrust great things to those who will not gratefully receive the little things from God’s hand?”  

And I do often forget. Because life keeps intervening and pushes me scatter helter skelter into rescuing fainting daughters as they whimper from the bathroom or unblocking random cell phone calls that blink “blocked” with every ring (that will be tomorrow’s post).

But since thankful is now my evening Lenten practise, I have a list to remind me of what I am thankful for, even if the day scoots out from under my keyboarded fingers.

So. I am thankful for: 

1. Bonhoeffer & Mama Monk for helping me give thanks for the small.
2. Good buses that get my daughter to work on time, even when she gets up late and stomps/slams her way out the door.
3.  Tim Horton’s healthy lunch choices (chicken salad sandwich, 380 calories … and thankful for the internet that lets me look that up!) that let my daughter defy our best advice rebel by choosing to buy her lunch out as often as possible.
4.  The new old pine coffee table and Persian carpet (from my family home) finally laid out in our living room that allow Jessie and the cat to work and nap in comfort.
5. My Monday meditationgroup that returns me to my family and myself with a new measure of hope and hopefulness, even in this desert time.
6.  Delayed contracts that give me time to think, blog, wrestle with transition daemons (meaning mostly myself and my need to control).
7.   Jessie’s increasing independence that allows Dan and me to BOTH pursue our passions, even at the same time!

And you? What are you thankful for? Come and share over at Mama Monk.   

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

Jessie Flips: Over at the Propeller Blog

Propeller Dance's big show is May 31 and June 1st at Centrepointe Theatre, and as they prepare and create and rehearse Jessie will be blogging over at Propeller's Blog. She writes:

Propeller is now in rehearsal for our end of year show in May and June at CentrepointeTheatre. Some of us are rehearsing and creating at Arts Court [. . . click here to go to the blog]

Nothing Beats the Chicken Defense

I haven’t blogged since Christmas and will not even try, here, to come up with a reasonable explanation. I will just dive right back in and re-introduce you to our family. Whose mornings, whose BETTER mornings mind you, go something like this:

Jessie’s iPod alarm, which she ignores, goes off at 6:30am with a rousing rendition of the “Good Morning, Good Morning” song from Singin’ in the Rain. We all have to be up early and out of the house by 7:30 because Jess is speaking at a business breakfast to help develop corporate support for Propeller Dance. I’m going, ostensibly to schmooze and network, but mostly just to make sure that Jessie gets there on time.

I push myself out of bed, get a fresh cup of coffee, and descend to my office, where I also have a small corner set up for meditation—leaving Dan to make sure that Jessie gets up and ready. I close the door, light a candle, lower myself down into a comfortable position on my cushion, roll a psalm across my lips and heart, and start meditating with the gong that draws me into silence.

Fifteen minutes later, in the supposed middle of meditation, which everyone in the house, including the cat, knows not to interrupt on pain of eternal damnation (or, my ire, which is pretty much the same thing), there is an insistent whisper outside the door: “Mom. Mom.” I meditate through.

“Mom”; gentle knock. “Mom”; gentle knock.

I think this will not go away.

“Mom. I really need to tell you something.”

“Open the door,” I say. I’m thinking that this could be Christ-like, maybe, if I remember to breath and speak gently. Knock, and the door shall be opened, right?

I turn the meditation timer off. (Yes, I have a meditation timer. On my phone. It starts and ends with a gong and I can choose any length of silence I want. This makes my husband laugh. “You actually have silence recorded on your phone?” Actually, I have a choice of three different singing prayer bowls to call me in and out of meditation. But I digress.

“So this is an emergency, right?” I say. “Like really important that you tell ME, not your Dad, and so important that you need to interrupt right now, not in 10 or 15 minutes. Right?”

“Yes!” says Jessie. “I need to tell you that I ate TWO nutrigrain bars instead of just one.”

She looks at me. I look at her and raise an eyebrow.

“I ate TWO, not one, not the rule of one, like we talked about—because we are going to have breakfast at the meeting.”

I raise my eyebrow further. “And this was something SO important that you had to tell me now? Right now?”

“Well, I told Dad, and told him that I was NOT going to tell you. And he said ‘Boc! Boc! Boc!’ making chicken noises,” she is incensed, “So I HAD to come down and tell you.”

Ah, yes. The boc boc boc defense.

And my husband is upstairs shaving, clueless, while I am putting away my meditation cushion. I think this may be one of the reasons why I love him. Go figure.