How to Reinvent a Life: Happy Birthday Jessie!

photo by Rachel Gray

Today is Jessie's birthday. And almost the one year anniversary of  her brain surgery in Boston and subsequent second stroke, which left her without language, memory, the ability to initiate movement, or follow a common sequence of actions. One and a half years since her first stroke and diagnosis of Moyamoya  (a very rare degenerative neurological condition, more common in people with Down syndrome, where the inner carotid arteries supplying blood to the brain become blocked) while on holiday down in Maine. Fifteen months since my mother died. A year in hell. Too much darkness to want to chronicle or blog, my energy spent just trying survive. And that only made possible by my best friend CG, Dan (best partner ever and love of my life) and the wider community that raised money, food, and spirits that kept my family moving forward into an uncertain kind of healing.

So, we are one year out and Jessie has recovered sufficiently to demand that I write about her again. Language has returned. Movement. Passion and her joie de vivre. The darkness and absolute hell of a watershed stroke in the frontal lobes I will leave to another time. Just know that it involves aggression, impulsivity, lack of control and planning, and sensory flooding. For now, we are in healing mode. Healing, as Jessie has banned the word “recovery.’ She has had so little control over what has happened to her, that when possible, we grant that wish!

After Jessie’s first stroke (which was relatively minor, as I look back on it now), we promised her that her dreams were still the same, we were just going to take a bit of a different route to get there. She was just on the verge of moving out, she and her boyfriend had plans to continue and deepen their relationship, and the company she was dancing professionally with—Propeller Dance—was maturing and demanding more and more of her time for rehearsals and performances. It was a lovely blossoming life.

Then, in what felt like one quick moment, it all imploded. She couldn’t eat the food she wanted (her swallowing was compromised and she had to be on a soft food/minced diet; she needed to drink more than 2.5 litres of liquid a day (to keep the blood flow to her brain at an optimal level to decrease her chance of a another more serious stroke; she couldn’t engage in strenuous physical activity (good bye dance and performing); and she had to have brain surgery somewhere by someone who had some expertise in this very rare neurological disease.

In the middle of all this, my mother was diagnosed with a heart valve defect, stage IV melanoma, and died.  Then we travelled (both virtually and by car) the country looking for a surgeon and centre with experience with Moyamoya, booked (and paid for) brain surgery with the brilliant Dr. Smith at Boston Children’s Hospital, sailed through surgery only to suffer a major watershed stroke across the frontal lobes 6 hours post-op. Eight days in ICU. No sleep. Living on Starbucks coffee and steamed oatmeal. And then, and then . . . This quick summary of loss will have to do for now. I will find other places to write the darkness.

And I am blogging again because I don’t know what else to do with my “one wild and precious hour” (to paraphrase Mary Oliver). Precious indeed, as Jessie requires 24-hour supervision/care. So in the mornings, when the personal support worker arrives, Dan and I walk to our neighbourhood coffee shop and enjoy each other’s company and some caffeine before he heads off to work  and I write or walk or generally let go of all that binds me for an hour or so.

Here we are again, about to celebrate her birth and I marvel at (and often, to be honest, curse) the blessed chance to reinvent her (and our) life over and over and over again. 

Baby's Got New Shoes!

In which Jessie and Drummer Boy (soon to be re-christened muscleman or the Megalodon, as soon as I get his permission) plan a day that goes awry, but is rescued by new shoes and great problem-solving WITHOUT me!

With Jessie, there is always a curve ball. Every day, every event, every outing (planned or unplanned) seems to go just a bit screwy at the last minute. There is the random coyote-generated universe trickiness (“Mom, you have to come pick me up. I can’t get the #2 bus to get home because there IS no bus.” “????” “I don’t know why. There just isn't a bus!.” “Where are you?” I don’t know.” “Uh, then how can I pick you up? Look for a street sign.” “Okay. [SFX: walk, walk, walk] I’m at Bank and Lewis.” “Are you sure you can’t get to the bus?” “Mom, there IS NO BUS! And the road is blocked by POLICE.” I am beginning to see that this might be a problem. I hop in the car, and when I get there, I see that there is a protest march going on and the police have indeed blocked one of the main roads through downtown. Which means I can’t get to Jessie. Which means I have to think about HOW to get to her, or her to me. And, well, you know how it goes.)

Then there is the Jessie-engineered curve: (“W-e-ll, I was GOING to brush my teeth and get dressed before leaving. But then, I ran out of time? And I had to get the bus? And I really, really, really like these pajama bottoms? So, I just, like wore them? And they have cheetah spots, which are my favorite. And so, yeah. But now work says it’s not “appropriate” for work? So I have to come home. So can you pick me up?”)  

Or the interesting and unpredictable lack-of-skill scenario (“Mom, I am stuck on a little patch of grass in the middle of the road in the mall parking lot and there are SO MANY CARS GOING FAST!!!! YOU HAVE TO COME GET ME! I AM GOING TO DIE!” Unfortunately, there is no talking down or out of this one. The only solution involves a car key, a hasty note to a waiting client, and a quick wave to passing motorists as I dart through traffic onto the median and grab my daughter by the hand to lead her, sobbing, to safety.)

And while there are always curve balls, I am trying not to hold on tight and to encourage Jessie’s sense of herself as an effective problem solver. It is, well, hard sometimes. Okay, honestly? Most of the time! In fact, the only way I have been successful in letting go is when I physically leave the house. That seems to be the only way to loosen my grip on parenting. Which is doing great things for my friendships, but not for my work.

So. Yesterday I was at my friend CG’s for lunch. I was telling her about Jessie’s afternoon plans to meet Drummer/Muscle Boy at the mall—they were going to take the bus to meet the Boy’s mother at her work, and they were all going to look at the Boy’s new furniture.

I was trying to impress CG with my growth in “letting go.” This seems to be a big theme among the mothers I know and drag out for hikes and coffee and random book browsing.

“You see?” I was saying, with my story, and perhaps aloud, just in case she hadn’t noticed.

“I didn’t even make her look up the bus or tell me any details! I didn’t question HOW they were getting there or WHEN they were meeting! I showed her that I totally trusted her and drummer/muscle boy!”

At that moment, my cell rang. CG has lived, and rescued, our life enough to know that that was probably Jessie. And she was right.

“Hey, Jess.”

“Hey, Mom.”

“What’s up?”

“So, like, Drummer Boy can’t get hold of his mom. She’s not answering her phone. So I’m going to meet him at the college and we’re going to work out together and then go out for dinner.”

I restrain myself from asking if she knows what bus stop to get off at or how to find her way to the gym. I also restrain myself from asking if she has enough money or suggesting that she make a healthy choice for dinner. I also do not ask how they are going to meet up or when she might come home. Do you see how hard I am working here?

I do say: “That sounds like fun Jess!” and “Call me when you hook up with Drummer Boy!”

“Okay Mom!”

Phew. Well-negotiated Nan! I smile at CG. She gives me a thumbs-up.

We are past the raspberry and brownie dessert and well into the tea and coffee when my cell rings again. CG’s eyebrow goes up.

“Hi, Mom.”

“Hi, Jess.” [Notice that I do not even ask: What’s up?]

 “O.K. So. Like I’m wearing my crocks and I forgot my running shoes and you can’t go to the gym with crocks so Drummer Boy bought me a pair of running shoes . . .”

“…..” That’s me pausing and processing. My daughter has size 3 DDD feet. Not the easiest to buy shoes for. And I’ve seen what Drummer Boy wears, usually shoes about 4 sizes too big for him. We are going to end up with expensive shoes that don’t fit and that are going to trip her up in the gym, where she will end up with a concussion or a major injury. And the store at the college would never even have shoes in children’s sizes. What the heck…

“Hey Jess, you know it’s not easy to get shoes for your size feet, right?”

“But the salesman helped us, size 3! I told him size 3!”

“Size 3? They have size 3? Where are you?”

“At New Balance, at the mall across the street from the college.”

New Balance. The ONLY place in the whole city that has shoes that fit her off the rack.

What can I say? Drummer Boy just scored big time with Dragon Mom.

I raise my eyebrows at CG, wanting her to note what I am going to say next.

“Jess. That is so brilliant! You guys ran in to a lot of challenges today and you figured it all out! What great problem solving!”

CG is giving me the thumbs up. I am indeed the new queen of letting go.

“Just  remember to get the receipt, because you have to pay Drummer Boy back and you don’t really know how much . . .”

CG is now giving me the chop off your neck sign.

I quit while I am ahead.

It's hard work, this letting go.

But getting easier with my coach. ‘Cause that’s what friends are for!

Epic Parenting Fail: Erotica

In which my efforts to re-stimulate my daughter’s interest in reading are just a little bit too stimulating.

[I am back to blogging, at my daughter’s behest, after a long (2 year!) hiatus. Jessie is now 25, still dancing with Propeller Dance, still dating Drummer Boy (who has morphed into muscleman, but more on that in the next blog), and getting ready to move out. It’s been a bumpy road, but she is still keen, for some reason, for me to blog about her transitioning and my particular challenges in teaching her anything! I have a whole long list of parenting fails since the last time I wrote, but let’s just start with the most recent].

While Jessie used to be an avid reader, she now prefers to devour episodes of Say Yes to the Dress or Buffy the Vampire Slayer on YouTube. She is beyond the age where I can make her do anything that might be good for her, but that doesn’t stop me from trying. And failing. You think I might learn at some point, but this letting go is a difficult business (even with therapy). My most recent parenting fail on this front was particularly epic. I share it with you to let you feel much better about your own parenting skills. You’re welcome.

Jessie learned to read when she was about 5 years old (using perhaps the very first edition of Patricia Oelwein’s Teaching Reading to Children with Down Syndrome) and was an avid reader—devouring first Frog and Toad, then Beatrix Potter (hence her bizarre vocabulary), then Mr. Putter and Tabby Pour the Tea, and anything by Stephanie Calmenson. There were a whole slew of books read in our local library’s Mother-Daughter book club, and of course the Harry Potter series when it first came out, and then Ella Enchanted, and Wrede’s Enchanted Forest Chronicles. I do have to say that reading is highly valued in our house: Jessie learned to pull herself up on a bookshelf, to pull things down from a bookshelf, and to stack things on a bookshelf. Our house is filled with books—on tables, under chairs, in boxes, and sometimes even in bookshelves. It is a habit or an addiction, depending on your point of view.

So you can imagine our despair when, towards the end of high school, Jessie just sort of gave up on books and transitioned easily and totally to the Internet. TV was (and is still!) limited to set times in our house. As is the Internet, except as it relates to work (for Jessie, that means advocacy or dance). Perhaps this was her way of stating her individuality, or maybe she was just needing to put less effort into her down time. Whatever the impetus, it was not something I wanted to add to our list of things over which to fight. I did, however, keep picking up books that I thought she might like from the library or the bookstore, and left them lying around on the coffee table or in her room. So in addition to her Archie comic addiction (fed on the same now falling apart compilations over breakfast), she did read (and loved) Wicked, The Notebook, the biography of Taylor Swift, and Twyla Tharp’s The Creative Habit. But it’s been a while since we found a book that appeals.

So, you will have to forgive me if, last week, when she and I were at the downtown main library, I quickly perused the “new releases” and “recommended” sections and came across what looked like a quick summer read. It looked romantic (see for yourself). And the author was a so-called “best” seller. And I thought it was from the young adult section. Really. So it would be appropriate, right? And would fit right in to the romantic life she is leading and aspires to.

So we took it out.

Then, that evening, the inimitable Gray sisters came over (Jessie’s friends “since elementary school,” and an integral part of both her our lives) and were, of course (in their campy and curious way), intrigued by this book sitting on the coffee table. They picked it up and began to read out loud. And then louder and louder. And Jessie yelled “NO!” and covered her ears.

That’s when I walked in. In my apron, my hands covered in whatever I was preparing for dinner. And I said, innocently, “I picked that up for Jess, I thought she might like it.”

And they said: “YOU picked it up for Jessie? Do you even know what this is Nancy?”

“A book?” I knew I was on thin ground here, but I wasn’t sure why.

“It’s erotica! You got erotica for Jessie! Listen!” And they began to read me the opening paragraph. Which I can’t even copy here because it would, well, not be fit for family consumption. Let’s just say it involved flesh and seduction and maybe even a few shades of gray. In graphic detail.  

In my defense, I had read the back cover: Breathe Into Me is a story about a broken girl called, Lacey. She has a stalker ex-boyfriend, a bad reputation, and not really much else going right in her life. Enter gorgeous Everett..... He's dropped into town to house-sit a mansion..... He's drawn to Lacey and wants to show her how good life can be. Can. She. Trust. Him???  Now that kind of sounds Twilight-ish, doesn’t it?

The girls, all three of them, could not stop laughing:

“You got Jessie porn! You got your daughter porn! O. M. G!”

“You got me porn Mom!” Jessie yelled, both embarrassed and delighted.

“Just wait ‘til I tell ….”

I made her promise NOT to tell my mother.

And then I made sure it was Dan, not I, who returned it to the library. After all, I have a reputation to maintain.  

For the Pedestrians and Coffee Drinkers on Wellington Street: An Apology, An Explanation

Last week we had a particularly bad morning—Jessie and I. I think the pedestrians and coffee drinkers on Wellington Street—who witnessed a car suddenly swerving to the curb and braking and a young legging-clad woman jumping out, yelling in furious anger and then slamming the door shut—might agree. So might those inside the trendy stores who just may have seen the rock-clench of my jaw and the full-body energy stomp executed by Jessie on her way to rehearsal. Where I had “kindly” driven her, as a favour, in an effort to get her to rehearsal on time in a rainstorm.  

I am learning that you must NEVER, EVER do a favour to an adolescent-brained being. Or at least only deliver the favour with the understanding that it will immediately and forever more be held against you in some Freudian warp that has morphed you into an evil car-driving, dinner-making, message-taking, cell-phone-bill-paying necromancer whose only intention is to entrap the adolescent-brained being forever in some hell that resembles, uh, let’s see, a house with people who love you and feed you and drive you places and ask you every now and then to do your laundry.

Okay. I am not being totally honest here. It’s true; I did drive Jessie when she usually takes the bus. But I think I also took advantage of the captive audience bit and may have nagged her. About getting to bed on time (so she would wake up on time and get to the bus on time), or about writing things down so she doesn’t forget them, or about being responsible, or about how if she doesn’t get her act together the only place she might be able to move out to is a GROUP HOME. . . and well, that’s probably how it went.

So when she told me that I wasn’t the boss of her and that she could do whatever she wanted and I should just deal with it, I may have pulled over to the curb a bit too quickly. Where I told her, calmly, to get out of the car. (I did check to make sure that we were close to the dance studio and that she could find her way there.) Where she heard that very dangerous calm tone and knew to step out. Where she had impeccable timing that allowed her to yell angrily at the top of her lungs “I LOVE YOU. SO THERE!!” just as she slammed to door shut. Where the pedestrians and coffee drinkers on Wellington Street (referred to at the beginning) got their mid-day entertainment.

Three blocks up the road, my cell phone binged with a text message. Jessie, as always, had the final word:

Notice how she was able to cap "NOT," just to make sure she was being clear.

Livin' It Up on a Friday Night, or Ghost Mom

I’m jumping back in here to the blog after a long hiatus involving work and more work and then some work, and lots of bickering with Jessie—as we tried to find our way through the new “no-rule” experiment we are trying at our house (and a few major performances involving ALL our time and energy). I will share the best of the worst with you tomorrow (involving infamous text messages and a meditation breakdown) and hope that that will bring some closure to a difficult period and lead us into a joyous summer. Or at least make you laugh. Or at least make you grateful that a)your daughter has not yet reached puberty, b) your daughter is way past puberty, c)your daughter is not my daughter, or d) you don’t have any children at all!

But just in case you were wondering what I might do with all this spare time I have not blogging, or what I do for fun on a Friday night . . . I offer you this:

627

 Yes. That was the total number of notes on Jessie’s iphone when I first opened it up Friday night. Well, to be honest, the number was actually up in the 700s, but I didn’t think to photograph the number until I started to weed through and delete some of the notes and realized just how MANY 700 and some odd notes was and how long this was going to take me—since I couldn’t just batch delete, as there might be some that she wanted to keep.

Now, you might wonder why I would be the one sorting through her notes. The simple answer is because it needed to be done. And who do you go to when something needs to be done? Ghost Mama. That’s right… Us Ghost Mamas are the ones that slip in and start the work that needs to be done, leaving the finishing (and upping the odds that tasks actually will be finished) to the ones who actually own the task. I know one Ghost Mama who is, at this actual moment, virtually lurking, from her comfortable kitchen office chair up here in Ottawa, somewhere near Humbolt Redwoods State Park in California scouting out good biker/hiker camping sites for her daughters who are cycling down the West coast. There is no doubt that technology makes Ghost Mama work much easier, but it also, as I am finding, creates a new kind of adolescent messiness that rivals the proverbial teenager’s room in the kind of madness it can create. Whole gigabytes of garbage.

So. That’s what I was doing on Friday night. Taking out the garbage. Most of which involved wedding planning, along with a few Glee scripts and an invitation to Daniel Radcliffe to come volunteer at the Foodbank where, Jess assured him “I would make sure you were treated like a normal person.”

As I started to weed through the notes (and look at the clock), I realized I could be there all night. So I narrowed it down, making sure that she knew that cleaning up her note list would be one of her chores Saturday, to just the wedding invitation list, variously labelled as: “ Who’s invited to the wedding,” “who’s coming to the wedding,” “wedding guest list,” and of course “Hollywood people invited to the wedding.”

If you were not aware, my daughter is planning her wedding to her boyfriend, Drummer Boy, who seems to be as involved in this process as she is, although he doesn’t seem to have the same level of commitment to Yes to Dress. Also note that this wedding is not high on our “to do list,” as we have told Jessie that she has to live out of the house with friends before even considering booking the Santa Monica pier for her interfaith marriage (as you can see, she has spent a lot of time of this). Given that it took Dan and I 25 years to get married, I was finding it a bit disconcerting to have to scroll through more than 300 notes dedicated to guest lists for a glitter wedding in some foreign country.

But, once I had done deleting those, we (ah, I’ve gone all communal here, having spent more than half an hour swiping my finger and tapping delete. Swipe, tap; swipe, tap; swipe tap; sip coffee; swipe tap) were down to (see the number at the top of the phone screen):

281

Woo-hoo! 281 is a perfect number. Low enough for Jessie to be able to delete or sort, high enough to make it boringly painful, perhaps painful enough to convince her that having MORE THAN 300 notes about one topic is just a bit over the top.

So it went on her Saturday to do list, along with the chores she didn’t finish throughout the week, and which she had to complete before going out on her date with Drummer Boy. Ah motivation.

When Dan and I returned from grocery shopping Saturday morning, I reminded Jess that she had to sort through the notes on her phone.

“Oh, I already did that!” she said.

“How many are left?” I replied, telling her that I could show her how to email them to herself and then convert them to word docs to ….

“None!” she blithely and proudly announced.

“None?”

“No, I deleted them all at once. I don’t really need them,” she said as she disappeared into the family room to watch something on her computer.

Dan had to pull me away from the kitchen cupboard where I was slowly, repeatedly, gently—yes gently—banging my head. 

Thankful Tuesday: Yes, There's That

It’s a Tuesday full of thanks, even when thanks are taking a holiday over at Mama Monk's. 

Thanks keep me grounded, bring me out of the under-the-covers-leave-me-alone kind of days that I have been having as I wrestle with what it means to a) be a parent and b) let go. That dance has moved from a waltz or a salsa into some kind of street/break dancing that my body (and psyche) are not properly trained for. So in the midst of this, I am thankful for:
·         A friend’s lack of cancer in sentinel lymph nodes
·         A mother’s day in Montreal, just me and my mom, and a books and breakfast celebration at a downtown hotel
·         A half-carton of chocolate-raspberry gelato from Stella Luna hidden in the freezer by my loving husband who knew that my daughter would probably forget mother’s day and was forbidden (by moi, oh tortured soul and glutton for punishment that I am) to remind her or buy a present for her to give me
·         A daughter who starts each new day new, once past her morning grumpiness, and holds no grudges and cannot imagine that anyone would
·         A sun-filled day, even with frost, that beckons me away from work that can wait--to play in the garden 

Thankful for Thankful Tuesdays

Thankful Tuesdays offer me the chance to praise in the midst of overwhelming disaster, in the middle of minor setbacks, and right in the breathing in-between space of celebration and delight.

Today I am thankful for thankful Tuesdays . . . an easy way back into blogging when I have been away for so long.

I am thankful for friends who interrupt what is becoming an almost typical morning exchange, because just when you think you got most situations covered, there is the curve that Jessie always seems to throw. Right now, in the middle of our no rules season (more on that next blog, I promise), she is finding all the little glitches in my no-rules-breath-deep armor  Like deciding, after getting up and watching more than an hour of some TV show, that she is going to walk up to the corner Tim Hortons (café and bakeshop, for you in the U.S.) and buy a muffin. In her pajamas  When I stop her she throws a fit, accusing me of not understanding her “style” and always trying to control her. I am in the middle of my sixth deep breath when my friend M calls saying she’s coming over to reclaim the dining room chairs we no longer need. I am thankful for the interruption, for the chance to talk to a working mom who has shepherded at least three daughters through this transition. I am thankful for her laughter and praise and commiseration.

I am thankful for HQ, an old friend and confidante of Jessie’s who arose splendidly from the ashes of high school hell and has reappeared in her life. They spent the wonderfully warm afternoon on our back deck planning her candidacy for the Special Needs Party of Ontario. The platform is based on inclusion, funding for the arts, and ending poverty. Now that HQ actually has some hard-won experience in the world and with an advocacy organization, I think he has the chops to make it happen.

I am thankful for tulips and a family that doesn’t mind sitting in the car when I take a detour to drag them magnolia spotting, as long as I don’t make too big a deal of it and don’t make them look.       

I am thankful, thankful, thankful for all the bloggers who keep writing no matter what, and who inspire me to lift myself out of the crash that comes after working 12-hour days, to put fingers back to the keyboard just for the love of it. 

(And I apologize for wonky fonts that I seem to have NO control over. Really, the font is the same size all the way through in the draft. Sorry about that.) 

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. 

Merry Christmas, 2012

Whatever was not done by this morning was not really going to get done, so we all slept in and then mozied to the mall where we did what any self-respecting (North American) family does Christmas Eve: we got our flu shots!

Then we packed up extra cookies and went to visit friends for coffee just before they headed off to the Hobbit and we to church for the Christmas Eve service.

Home again, home again, to stockings (we still do those) and dishes and delightfully checked off checklists. And one last look at the angel on the mantelpiece.

Merry Christmas to all, and to all a good night.

I wish you blessings and light.

Breakfast Out

Last Tuesday, was it? Times flees and runs around in circles and comes back and rearranges things when it is the season of Advent. So. Yes. Possibly, last Tuesday. Jessie went out with her friend RG after RG had finished writing her last paper of the term. They ate and drank and talked about love and bad TV and then Jessie came home and fell asleep and woke at 5 am feeling sick and promptly fainted in this way that she has that makes you think it is a seizure.

She doesn’t just drop gracefully, eyes rolling up or closing, and then lie there. She, as in life, has her own way of what we now know is fainting (or syncope, if you want to get all medical). She drops, yes. Then her eyes roll back into her head and stay open so you can really only see the whites. She rasps/chokes for air, stops breathing, and then begins to turn blue. At this point all her limbs go board-stiff and then jerk. If you can get her into a prone position and keep her lying down, she does quickly recover, freaks because she has fainted, panics, and if you let her up, does it all over again. A couple of times. In a close space, it looks and feels even worse than that. In fact, on Tuesday night even the paramedics, who were present for the third and final episode of the morning, said it was definitely a seizure.

But at the hospital it was ruled as a “syncopal event.” Again. You think I’d believe them. After all the neurological and cardiac tests. But sometimes, in the midst of one of these, I too panic. This can’t be fainting, I think. This looks too serious, is too much NOT Jessie. And then I recount what she looks like, double check three or four times with the doctor, the medical staff … “turns blue!” I say. “Goes stiff and then jerks!” I repeat. “Like this!” I say and I want to lie down on the ground and act it out. I don’t. “Ah,” said Tuesday’s  doctor. ”Myoclonic jerks!” “Hey,” said Dan, “that’s a good name for a band!”

We laughed. We relaxed a bit. And this is how we started our Christmas holiday season: breakfast in the emergency ward. Jessie, her usual smiley self, almost fully recovered.    

We will have the usual anxiety to deal with. The waking in a panic. The calls for help or a sleep buddy. But this is manageable. Or that is what I keep telling myself as I breath and count on mother instinct to always kick in, keeping an even keel, an even voice: breathing in we relax the body, breathing out we sigh. Breathing in . . . . and out. Breathing in . . . . and out.

It’s how I mother, or try to. Slow and steady. In and out. A rhythm on its own that is primal and yet sometimes so distant that I need to coach Jessie, and myself, into its graceful hold. In and out . . . of the seasons, of the year, of the living of a life. It’s in and out.

A bittersweet beginning; but maybe, in all this coaching, I will get it right.