tag:blogger.com,1999:blog-2054841106186754482012-02-08T12:04:36.559-05:00A day-by-day chronicle of life with my daughter Jessie (who has Down syndrome) as she transitions into adulthood and teaches me everything I need to know about life, love, passion, brokenness, and how to enjoy, really enjoy, a hot fudge sundae.Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.comBlogger801100tag:blogger.com,1999:blog-205484110618675448.post-37366959697093428012012-02-06T17:55:00.000-05:002012-02-06T17:55:34.456-05:00

  Some days are just blessed affirmations and involve the right balance of winter sun, worship, affection, a good book to delve into, right relationship, a daughter in love, and of course, chili and the Super Bowl game on TV. Not to mention a 7.8-kilometer long frozen canal with a Winterlude festival offering free bus shuttles, ice sculptures, and beaver tails!  Happiness and contentment

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-51860732853320493842012-02-02T16:17:00.001-05:002012-02-02T16:53:06.271-05:00

I love my daughter. I think she loves me. But we sometimes have a difficult time expressing that love in ways that are, how shall I say it, affirming. Especially as she strikes out on her own and I try to provide a bit of an invisible safety net and some guideposts to help her navigate her way. Only I’m not always so great at being invisible and am definitely uncertain at times as to whether the

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-16534177845264542662012-01-30T12:50:00.001-05:002012-01-30T14:07:31.867-05:00

It was a typical Jessie Jekyll and Hyde (or as Dan has come to refer to it,  Jessyll and Hyde) 24 hours: Failure to demonstrate even a modicum of mature behaviour (resulting in Dan and I throwing our hands up in the air and wondering if she would ever have the wherewithal to get to even a bus stop without mishap), followed by brilliant execution of complex social, leadership, and performance

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-9149729540075424212012-01-26T14:23:00.000-05:002012-01-26T14:23:18.170-05:00

Okay. Five. Because I can’t think of 10. I’m sure there are 10, but that was so last year! 5. Sorting out Jessie’s schedule for this term. Given that she isn’t in school, “term” might not be the correct (a-hem) term. But since she is taking her first college course (Introduction to Public Relations), “term” might just work. As usual, she is busy. And she is always taking on new projects—such as

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com8tag:blogger.com,1999:blog-205484110618675448.post-51656374672137079252011-11-15T13:57:00.000-05:002011-11-15T13:57:16.634-05:00

I wrote this when Jessie was just 2 years old. Mary Anne Kazmierski found a bursary for me to go to the McGill Summer Institute. While the McGill Summer Institute no longer exists, its newer form is still alive and well and can be accessed through the Inclusion Network. This piece reflects the beginning of our relationship with inclusion, community, and Mary Anne and Carl Kazmierski. My how they

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-60520125616866475422011-11-15T13:52:00.002-05:002011-11-16T10:30:55.810-05:00

Mary Anne Kazmierski (Mama Kaz) died last week, a short eight months after her husband Carl. Both were vibrant, strong, faithful advocates for people with intellectual disabilities and for life. Carl was strong, pointed, and patient; Mama Kaz strode in and commanded a room. And when she entered, people either ran towards her, or as far away as possible. She was a formidable woman—full of fierce

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-25622844379770460402011-11-11T10:16:00.000-05:002011-11-11T10:16:19.906-05:00

Jessie generates goals faster than her bedroom floor collects discarded clothes. Her newest goal (as if learning to cook, to clean the bathrooms, and developing a speaking/advocacy sideline were not enough) is to move out by Christmas. (See text message.) At one point, as I was trolling the internet (because I have nothing better to do) I googled housing supports and options and saw a

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-46681933688155304312011-10-31T14:46:00.000-04:002011-10-31T14:46:42.042-04:00

Jessie had three-quarters of an hour when she got home from working at the food bank to eat lunch, pack up, and head off to catch the bus for her cooking class at the community health centre. She made and ate her lunch, and then had a brilliant Jessie-inspired idea for a costume to wear to the class.  What defines a Jessie-inspired idea is that it explodes at the last (if not past the last)

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-51320524437019621902011-10-28T09:05:00.000-04:002011-10-28T09:05:49.326-04:00

I was going to blog about moving out (a different text message), or letting go, or maybe even cooking. A short blog, because I have a ton of work. But as I was sitting down this text message just came in: Hey Mom. I want to know if i get my stuff done in . . . I am pretending that I haven't recieved it yet. Who is this girl and why does she never send these messages to her Dad?

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com6tag:blogger.com,1999:blog-205484110618675448.post-951870296260278282011-10-26T10:42:00.000-04:002011-10-26T10:42:12.023-04:00

This is Jessie’s weekly calendar: Far from languishing at home alone trolling the internet and sneaking bad food, Jessie is very busy. Thanks to the help and inspiration given by her friends, family members, and mentors at her PATH (Planning Alternative Tomorrows with Hope, or futures planning) in the spring, Jessie seems to be “living her dream.” Or at least that’s what she said last week. Of

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-36462045873875543782011-10-13T19:02:00.001-04:002012-02-08T12:03:33.058-05:00

Jessie has a wild schedule this “first-year-of-no-school” year. While it includes a good mixture of both down and active time to keep her contributing, learning, creating, and growing, what makes the schedule so wild is that it’s not the same routine every day, as it had been for school and hence most of her and our lives so far. And it involves a lot of bussing to different places all across the

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-38210145536377559972011-09-30T09:38:00.000-04:002011-09-30T09:38:42.608-04:00

Jessie and I don’t shop well together. As she told me when we were shopping fashion discount in Maine, “Mom, I have my own style and it is NOT yours. You just don’t understand and I HATE shopping with you.” She is nothing if not direct. Dan claims this trait comes from me, and so I have no one to blame by myself. Of course her declaration came after she picked out three dresses to try on that

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-6513720828267438972011-08-13T14:38:00.000-04:002011-08-13T14:38:14.630-04:00

She's back. With her laundry. These loads I do (Jessie usually does her own laundry) because we are trying to get back out the door to head to Montreal and then Maine for two weeks. Where we don't have internet access! Hooray! Ciao all!

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-32229163892655774092011-08-06T16:43:00.000-04:002011-08-06T16:43:36.954-04:00

We just dropped Jessie—along with her sleeping bag, rubber boots, and a bag of clothes—off at the buses leaving for Camp Misquah. She’s been looking forward to a full week in a lakeside cabin with friends and high-energy counselors. Misquah has certainly become a traditional part of her summer life. Country Gal, Black Belt Belle, Lady Lyrics, and Jessie While some of the campers waved a

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-28870793089905040262011-08-03T11:23:00.002-04:002011-08-06T11:50:54.285-04:00

Jessie has had, and continues to have, a variety of goals for her future. While there is an underlying current that relates to the arts and performance, the flavours of the month day rival, in range and creativity, those on offer by the Baskin Robbins ice cream chain. Generally her identified passion and career choice derives from whatever movie/TV show she has just watched. From Spy Kids (a spy

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com5tag:blogger.com,1999:blog-205484110618675448.post-34588165984826764572011-07-26T14:52:00.000-04:002011-07-26T14:52:15.285-04:00

The problem with the “family” computer is that it really is my computer, in my office— which actually happens to be the family room. Go figure. I gave up my basement office years ago when Dan started to work freelance from home. But somehow, when he got a job and started going to a real office in a real downtown office tower, I never quite got my office back. The point being (yes, the point)

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-16034711547449958292011-07-22T10:06:00.000-04:002011-07-22T10:06:01.090-04:00

It was so hot here yesterday! Almost 36C, but feeling like 46C (that's around 96F, feeling like 115F for those of you in the US). We have no airconditioning; I have a contract to finish; and Jessie was supposed to go to a wave pool with the Ys Owl Summer Program, but ended up having to deal with "girl stuff." This left her sobbing in the bathroom at 6:30 am in the morning. "But WHY today? WHY now

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-57476293476201857892011-07-16T14:28:00.000-04:002011-07-16T14:28:11.442-04:00

It’s a hot Saturday (the temperature is climbing up past 29° Celsius) and we are on our way to the “hottest” location in town—the Bluesfest. Jessie saved her money and bought 2 tickets to see Nick Jonas (so, I guess she isn’t completely over the Jonas Brothers). Nobody else would go with her, not even Drummer Boy! So guess who’s going. Dan, because of his tinnitus (so he says, but I’m thinking

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-32740498489363172902011-07-14T16:38:00.001-04:002011-07-16T19:55:07.359-04:00

Jessie has a pretty straight-forward relationship with the GPS. She hates it. Apparently it makes me yell and swear. “Don’t bring that GPS!” she insists if she sees me grab it as we go out the door. “I won’t go if you bring the GPS!” This has something to do with the trip to Boston we took last year. How I made her call Dan on the cell phone (he flew into Boston while we drove down from

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-27482103345840556952011-07-04T15:31:00.001-04:002011-07-05T15:00:13.001-04:00

On Friday, July 1st, we headed downtown just before noon for the Canada Day celebrations and to get Jessie to Major’s Hill Park for the flash mob that she was involved with doing a choreography to “Like a Waving Flag” by K’naan. (Flash mob = group of people who assemble suddenly in a public place, perfrom an unusual or artistic act for a brief time, then disperse, often for the purposes of

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-63745160619478467652011-07-01T12:21:00.000-04:002011-07-01T12:21:19.338-04:00

It has been a whirlwind of weddings (blog to come), flash mob rehearsals (next blog), graduation preparations (blog to come), and summer program registrations (not blog-worthy, except the bus training part, so . . . blog to come) all culminating in Tuesday’s final high school graduation and celebratory dance at Drummer Boy’s house outside the city. All the Storefront students (12 of them) were

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-18433814001252895382011-06-17T09:38:00.002-04:002011-07-01T17:26:49.916-04:00

In the midst of the madhouse of Jessie hosting her PATH (a planning session for her future held last weekend) and the rehearsals for the Propeller Dance show (this weekend) she has had time to follow (just on radio and the newspaper) the Stanley Cup and Vancouver’s trouncing. Never mind that a year ago she would not have been able to correctly name even one NHL team, she now pounces on the

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-68430121370897189902011-06-10T15:16:00.003-04:002011-06-10T15:17:12.593-04:00

Its official. Jessie just had her last day of school! she is formally demitted from the public school system, and now the real adventure begins! Stay tuned! No time to write because her calendar looks like this. And I am overwhelmed with this sense of bittersweetness and liable to burst into tears at any moment.

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-45525763494572688912011-04-11T20:52:00.000-04:002011-04-11T20:52:26.742-04:00

“But who will cut his toenails?” she asked despairingly. She was an older mom sitting beside Dan and me at a meeting we went to when Jessie was still quite young. I think it was about futures planning. Dan and I looked at each other and thought, “Bhah! What kind of concern is that? We don’t care about stinking toenails! We’re more hip, more progressive than that!” We were much more concerned

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com5tag:blogger.com,1999:blog-205484110618675448.post-70894396274252042762011-04-07T16:39:00.001-04:002011-07-26T15:26:31.693-04:00

Really. Here I am working diligently, hard, in the back room that is my office. Jessie has come home with her new boyfriend, whom I will call Drummer Boy (because he plays the drums, luckily we don't have drums ), before I drive both of them  to H'Art studios for a new Thursday night art session (where old boyfriend, Tall Thing, will also be, that should prove to be interesting!). They are in

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-68456045801827545222011-03-30T10:34:00.001-04:002011-03-30T14:11:31.476-04:00

We're still going over the videos that Jessie took in L.A., but one particular on-camera essay deserves a posting, particularly in these rough and uncertain financial times when a good place to live can be hard to come by.  According to Jessie, you can avoid the nastier parts, just let it go, and live in the nicer areas! Because living in the nicer areas (of course) is based only on one's desire

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-76696317599264071712011-03-28T17:06:00.001-04:002011-03-28T21:54:20.053-04:00

When Dan and Jessie were away in L.A., I found myself bereft of my usual anchors and schedules—the things that tether but that also keep me grounded. I am rarely without my family in my own home for longer than two or so days at a time. I have left them to go on retreat or to canoe or kayak, but I am always with other people (even if those other people are silent!). But I had never had such an

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-22399249982895382632011-03-15T08:03:00.001-04:002011-03-15T10:09:59.755-04:00

I called Dan and Jessie in L.A. yesterday morning to see if they were surviving. The last time I spoke to Dan was a hurried call the morning they arrived (after flying across the country all night and not really sleeping) when he asked me if it was okay to give Jessie Pepto Bismol and if it was normal for Jessie to ask why she was vibrating. Huh? I just said yes, okay for Pepto-Bismol and

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com5tag:blogger.com,1999:blog-205484110618675448.post-45154826037220053472011-03-10T20:52:00.001-05:002011-07-29T11:26:45.181-04:00

Jessie's latest Flip, about how important the arts are to her. Links for the organizations she is talking about: Propeller, Ottawa School of Speech and Drama, and H'Art of Ottawa.

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-81505523844551254532011-03-09T11:07:00.001-05:002011-03-09T11:48:41.153-05:00

Jessie and Dan are getting ready to go to Los Angeles tomorrow for March Break—Jessie’s 21st birthday present from Dan and me. Part of the birthday present is me not going! As I am not the Hollywood fan and as Dan knows LA, we thought it might be much more fun (and economical) for just Dan and Jessie to go. I, though, get to help pack and make lists, as I am a very good list maker. I say this

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-75158056739826013352011-03-06T19:43:00.002-05:002011-03-06T19:46:31.061-05:00

I was worried that it would take Jessie a while to get over her break up with Tall Thing. She can sometimes obsess about stressors, “rude” words, her health, and relationships. I guess that makes her pretty normal. But I was reassured when yesterday, as she got into the car after drama, she announced that she was writing a new song. “Oh?” said Dan, “What’s it called?” “I’m Single and Ready to

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-55588308236536670882011-03-03T09:51:00.001-05:002011-03-03T15:06:22.316-05:00

Transition Meeting On Tuesday, we had a meeting at Storefront to talk about Jessie’s transition out of school and what she might do next year. While T&N (the teacher and the job coach at Storefront) say that we are ahead of some parents in exploring what the options are, we feel very far behind! It’s all one big mishmash out there of things that don’t quite fit Jessie. However, the one thing we

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-33013059712217350232011-03-01T21:54:00.000-05:002011-03-01T21:54:20.390-05:00

Jessie flips . . . a day early, because she wanted to encourage you to join the thousands of others pledging to end the use of the R word to promote the acceptance and inclusion of people with intellectual disabilities.

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com6tag:blogger.com,1999:blog-205484110618675448.post-75961353135628544852011-02-28T16:57:00.002-05:002011-02-28T18:43:16.998-05:00

Okay. So let’s be clear—we love our daughter, we really do. With all our hearts. But there are times, like this weekend, like Sunday afternoon from 1 to 3 pm in particular, where Dan and I are tempted to drop her at the bus station with a one-way ticket to Timbuktu. It was between 1 and 3 on said afternoon that our family had a major confrontation about chores not done and plans in jeopardy (

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-14237909823992886732011-02-24T11:42:00.001-05:002011-07-29T11:31:17.978-04:00

Welcome to Thursdays With Jessie, or Jessie Flips! I’m not sure which title we will use, any ideas or preferences? Every week Jessie will make a small video with her Flip camcorder about her thoughts or feelings on a particular subject, or about some aspect of her life. She has free reign ( I believe that is rein, as in equine, but I kind of like reign, as in royal), but we might help her

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-43662392383500514112011-02-23T09:55:00.000-05:002011-02-23T09:55:47.525-05:00

Every night, before bed, I bless Jessie: May you be happy. May you be healthy. May you be peaceful. May you be loved. May you be safe and protected and free from fear. May you find joy in your own true nature. You are God’s beloved. Every night. No matter what. Even if I have yelled at her. Even if she has yelled at me. Even if we are not speaking to each other. Even if it is 2 in the morning

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-7629678878776011422011-02-22T13:07:00.002-05:002011-02-22T15:59:32.213-05:00

While Jessie spends most of her time insisting that I not be involved in her life, guide her, teach her, or tell her what to do (other than being available to drive her where she wants when she wants and sew costumes and ripped favorite clothes within 2 minutes), she also has this need to text me what she is thinking or doing. This text just in: I will refrain from hiting the reply button, 

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-55544387250465789192011-02-22T12:14:00.002-05:002011-02-22T12:53:47.571-05:00

This blog entry is about, well, nothing in particular other than a quick survey of how some days go. I have no theme, no burning observations, no particular point, other than to give you a small picture of a few days of Jessie’s life. This was a much more laid-back weekend than normal, but that’s because it was bracketed by holidays on Friday (a PD day for Jess) and Monday (Family Day here in

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-75660693060949839732011-02-16T22:43:00.001-05:002011-10-28T12:21:21.493-04:00

The glorious, incredible, effervescent Sophie! Sophie is the facilitator assigned to Jessie for a futures planning session (for and directed by Jessie) that we will be doing in the spring. Committed to person-centred planning (and having done PATHs and MAPS with Jessie and her friends and supporters in the past), we jumped at the chance to participate—for free!—in a new planning initiative for

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-4374898038160019382011-02-14T14:19:00.001-05:002011-02-14T14:20:27.755-05:00

Jessie has had a boyfriend—whom I will call Tall Thing—for almost two years. I have not written about their relationship at all because it is theirs and I did not want to trespass. I will say, however, that nothing really prepares you for the conversations you have to a) have and b) listen to. I mean, we’ve all practiced and become comfortable with talking about dating and love and sex with our

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-9326297127071877982011-02-11T10:58:00.000-05:002011-02-11T10:58:50.468-05:00

We are having deep discussions these days about what is next after Jessie finishes Storefront. Jessie’s plans and dreams change every moment, depending on who she has just talked to (Jeremy and I are going to move to Los Angeles and become rock stars); what musical she has just seen (I’m going to apply to Harvard Law school and become a lawyer); or what college or program she has just visited (

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-47236096324045093712011-02-10T10:34:00.000-05:002011-02-10T10:34:25.840-05:00

The week of Jessie’s birthday (January 19th) my Dad—Jessie’s Grumps—died. The road we all travelled these last few weeks was filled with laughter and grief, as all our comings and goings are, I think. Since much of what is important in life is about relationship, I offer here glimpses of Jessie’s relationship with Grumps. Some photos of them together, and a final photo of all of us (my mom,

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-61200686030906480202011-02-08T17:32:00.000-05:002011-02-08T17:32:32.123-05:00

A new year, a new renewal intention—not a resolution, I don’t do those; except perhaps ones similar to Jessie’s when she was about 12 years old: “My resolution is to eat more donuts!”—to get back to blogging. Much has transpired while I haven’t been blogging—Jessie’s inaugural experience of the Rocky Horror Picture Show at our local movie theatre, a bus trip to Cryville, a college tour to

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-86575740756198858072010-09-27T16:00:00.001-04:002011-07-26T15:24:55.280-04:00

Fall has set in and Jessie is fully engaged in all of her activities—including Propeller Dance, hip hop, music, drama, and teaching dance—in addition, of course, to school (where she will be doing a work placement at the Food Bank starting later this fall). She is managing her schedule incredibly well (although that’s never really been the issue, the problem is usually how I am managing it!),

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-84473024132217217442010-09-09T14:10:00.001-04:002010-09-10T11:48:40.792-04:00

Our constant haggling over the Jonas Brothers (okay, MY constant haggling) has had new wood added to the fire as Tanya and Nancy—Jessie’s teachers at Storefront—told her yesterday that the Jonas Brothers were not appropriate role models for a young woman of her age. She was more than slightly miffed as she shared this little piece of her day with me. Taylor Hicks, Season 5 American Idol

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com8tag:blogger.com,1999:blog-205484110618675448.post-34605758962451647332010-09-08T09:28:00.000-04:002010-09-08T09:28:26.809-04:00

It’s Jessie’s first day back at Storefront, the two-year public school program she is enrolled in that teaches job skills and skills for independence. We had planned to have a first-day-back celebration with cupcakes that Dan was tasked with buying on his way home from work. In a rare fit of domesticity, I bought a chocolate fudge cake mix at the grocery store (I can only take domesticity so

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-50751247937310313002010-08-15T16:57:00.001-04:002012-02-08T12:04:36.566-05:00

To Maine that is, for 2 weeks, Jessie and I. So no more posts until re return, as I will be seriously offline! I will, however, share one highlight of Jessie's time at camp aside from the cute counsellors. It was the enthusiastic response of one of her cousellors to her helpfulness and organization skills. You heard right! And I quote: Jessie was a fantastic camper. She socialized every

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-54551043853476783512010-08-12T08:41:00.000-04:002010-08-12T08:41:18.523-04:00

That’s how parents spend their time when their kids are away at camp, just in case you were wondering! With Jessie gone, Dan and I are alone. Seuls ensemble. In years past, we wondered whether this would be a curse (being alone together) or a blessing. We quickly learned that it was a chance to fall in love all over again, much to our surprise! And so we look forward to her time at camp almost as

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-28411824438955256392010-08-11T14:19:00.002-04:002011-07-29T11:33:42.638-04:00

An earlier piece—almost 12 years ago!—about Jessie’s first camp experience. I have fond memories of my own days at summer camp and bless my parents for sending me. I am especially grateful when my own family climbs into a canoe and I realize that I am the only one who has the faintest idea about how to avoid that rather large rock that is coming up on the right. Looking back, I realize I

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-3539772047355766762010-08-10T11:15:00.001-04:002011-08-06T16:46:07.892-04:00

Jessie headed off to camp last Thursday. Packed, clean, and excited for another year at Camp Misquah, a summer camp near Gracefield, Quebec for people with intellectual disabilities. This is her first year in the adult camp, and she was psyched. Ready to move up, and certainly ready to leave us behind! The only thing she was really concerned about packing were her notebooks for writing

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-21501203757749823182010-07-31T10:09:00.000-04:002010-07-31T10:09:32.184-04:00

I love to dance it's one of the ways that we can all express ourselves. And we get to see who we truly are. It's a blessing, gift and talent that god gave you. In my opinion dancing is relaxing and it can help relieve stress. You can believe in yourself. For me it's hard balancing school life and dance life i just wish that it would balance out. The more I’m educated the more I want to dance,

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-42938283787738383902010-07-30T20:48:00.000-04:002010-07-30T20:48:51.658-04:00

It used to be that “I’m NOT going to tell you” was a statement of avoidance—of responsibility or of a reprimand. As in: Jessie, have you brushed your teeth yet? I’m NOT going to tell you (well, you already did). Jessie, have you finished your homework? I’m NOT going to tell you (hmmm, let me guess). Jessie, did you spill this juice? I’m NOT going to tell you (here’s the cloth, dear). Etcetera ad

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-9516847596573982912010-07-29T09:46:00.001-04:002010-07-29T10:15:11.239-04:00

Yesterday I finally convinced Jessie to begin her blog entries! While I am too ensconced in work right now to actually lead her through setting up a blog, she is keen to write about what she cares about. That, plus I've told her that if she doesn't write then it's only my voice and my point of view and I'm sure that makes her very nervous, especially these days when I seem to be on her case about

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-88852400720403660712010-07-28T09:45:00.001-04:002010-07-30T21:49:18.831-04:00

I just found a wonderful blog—Rolling Around in My Head—by Dave Hingsburger, a disability rights activist and advocate who works out of Toronto. I first ‘met’ Dave when I was looking for resources on sexuality and people with intellectual disabilities. He has done a lot of work in this area and has written some excellent books. (Just Say Know! is one of them.) Dave’s blog has won a number of

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-44112202929204284962010-07-27T10:11:00.000-04:002010-07-27T10:11:29.785-04:00

On our way from Montreal to Montebello on the weekend, we used the GPS to help us navigate a planned detour to St. Andrew’s East (to visit Hill Head Farm where my father spent his summers and holidays). Dad had one way of going, the GPS another. Since it was my father’s birthday, we followed his directions. But I kept the GPS on, just for fun, and was regaled with “re-calculating” every time we

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-32721218896953327412010-07-26T12:31:00.003-04:002010-07-26T16:00:48.761-04:00

It is my father’s 80th birthday on Wednesday and this past Sunday we all—Grumps, Grams, Jessie, Dan, I, my brother Bill and his partner Leigh-Anne, and my other brother John—drove to Chateau Montebello on the Ottawa River for its renowned brunch. Chateau Montebello used to be known as The Siegneury Club, and my father remembers when his father was a member and they would go there in the winter

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-87606213226095295382010-07-20T14:31:00.001-04:002010-07-20T17:17:40.660-04:00

Thank goodness our local mall (Billings Bridge) is only a 2-minute drive from our house. A 15-minute walk, but a 2-minute drive. This is important when you need to drop what you are working on to rescue your daughter from a traffic island in the middle of the parking lot of a busy shopping centre. This morning I sent Jess off on an errand. To the mall (a favorite) to buy her choice of bread for

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com5tag:blogger.com,1999:blog-205484110618675448.post-70135477144583549982010-07-13T10:23:00.000-04:002010-07-13T10:23:48.071-04:00

Jessie went off on her own yesterday morning to get her hair cut and her eyebrows done (she is a true Canadian with the requisite unibrow, if left to its own devices). She called me on the bus on the way home, very excited. “Mom! The bangs were too short and in my eyes, so she curled it and braided it out of my eyes!” Jess is in heaven when her hair gets curled, a throw-back to her Shirley Temple

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-44563806112266547522010-07-12T09:29:00.000-04:002010-07-12T09:29:51.298-04:00

Last Sunday, just as the heat wave started, we were invited for a wonderful idyllic day at a friend’s cottage on a lake in Quebec. The three girls—Jessie, Julie, and Lizzy—giggled and swam and lounged and sang high school musical karaoke songs that drowned out the motor boats and the woodpeckers. Siblings variously hid and rolled their eyes, or went out tubing. Moms sat on the deck sharing

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com5tag:blogger.com,1999:blog-205484110618675448.post-61971705754622902022010-07-10T11:32:00.005-04:002010-07-13T13:31:19.876-04:00

Jessie’s friend Rachel called this morning. She’s been working incredibly hard but has a day off and asked Jessie if she wanted to do tie-dye t-shirts. My knee jerk reaction when I heard “tie dye” was NO! There is a reason that the kit Jessie was given almost 6 years ago has never been opened… I have spent most of those 6 years hiding it in various places so when Jessie and her friends asked

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-44742922626463437782010-07-09T12:00:00.000-04:002010-07-09T12:00:03.912-04:00

We are surviving the heat wave, barely. But it is certainly testing our plan and our patience. While the picture here was taken many years ago, she cycles in and out of that “you can’t make me” phase. It’s an appropriate image for many of our mornings so far this summer. Today, Jessie went off to H’Art studios for the day. She will have 3 days there next week, journaling and painting, which

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-91451580120124119602010-07-09T10:48:00.000-04:002010-07-09T10:48:50.931-04:00

Last Tuesday, just before the heat wave struck, Jessie and a few friends from Dandelion had pizza here at our house and walked up to the Mayfair Theatre (our local movie theatre—really, such things exist!—that plays almost-second-run films, double bills, great cheesy horror movies, and themed extravaganzas like the Jesus week during Lent/Easter) to see Grease, one of Jessie’s all-time favorites.

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-82960499841410795782010-07-08T09:24:00.001-04:002011-07-29T11:30:07.555-04:00

A mea culpa to the Anywhere Library Association for the fear and trembling I inadvertently precipitated. It all started with a very simple email request. At least I thought it was simple. And reasonable, given their goal of promoting literacy. It was certainly not my intention to jeopardize the integrity of one of their programs, perhaps even the association itself! All I really wanted was for my

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-45595665134017333392010-06-30T10:34:00.000-04:002010-06-30T10:34:53.359-04:00

I have work!!!! Which will keep me busy and away from posting on this lovely blog on a semi-regular basis. I will try to post something at least once a week and reach back into the Retro Jessie pile, which is waiting. Our daily summer routine is falling into place, including negotiating (read fighting) about the rules and structures we agreed on. Peace sometimes seems a very foreign concept in

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-39075071596387160602010-06-25T11:35:00.002-04:002010-06-26T12:08:22.668-04:00

The call came out late Tuesday: Propeller was invited to street dance in the opening day parade for the Ottawa Jazz Festival. Mike Essoundry—esteemed percussionist and composer, and one of the musicians working with Propeller—needed more dancers to accompany The Mash Potato Mashers (his jazz street/marching band) as it lead the parade out from City Hall and wound its way down Elgin Street (one of

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com5tag:blogger.com,1999:blog-205484110618675448.post-85806042318210042362010-06-23T20:20:00.000-04:002010-06-23T20:20:21.338-04:00

Jessie loves musicals, hence her passion for the Glee TV show. And she loves “product,” hence her collection of t-shirts, albums, and posters from everything from Singing in the Rain and Shirley Temples’s Bright Eyes to Rent, and Wicked. She also happens to have some friends who love musicals almost as much as she does. So the three tickets I managed to get at a discount price for the Broadway

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-39903220300062939592010-06-22T21:27:00.000-04:002010-06-22T21:27:58.999-04:00

Our summer begins, as all our summers have since Jessie was born, with a trip to pick fresh local strawberries. We are lucky to be living in a city where you don’t have to even leave the city to find a pick-your-own field, and so it doesn’t require much planning. Only a thought, a friend or two, and free morning. The friend or two is the key to making it work, as Jess is not one to get too

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-89836160308853444062010-06-21T07:52:00.000-04:002010-06-21T07:52:38.677-04:00

Yup. And I gotta brag! Because this is definitely not our usual routine (which often involves at least one door slam, one “you’re not supposed to be watching TV in the morning,”, and one “Stop telling me what to do!” Jessie got up at 6 am (in spite of staying up way past 11 last night to watch the MTV awards and Justin Bieber) and was at the computer writing before I even came down. Notice

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-59162334276457358022010-06-20T22:10:00.002-04:002010-06-21T08:11:14.816-04:00

In which Nan starts to write about a single day, reads it to Jess, gets reprimanded for the use of the word “schmooze,” and Jess takes over the blog. Another day, another performance, another good-bye! That’s June. That’s Jessie’s life. The only thing that makes it easier is the GPS Dan bought me as a present. I just plug in all the addresses (dress rehearsal here, year-end party there, quick

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-25285239358215118402010-06-19T11:21:00.000-04:002010-06-19T11:21:03.674-04:00

We are negotiating these transition years with a great deal of angst, frustration, and—when we can step back and look at the bigger picture—laughter as our daughter Jessie’s drive for independence often leads us down what we (as her parents) feel are major detours or even crashes (of will). Of course, as parents our opinion is suspect at best. Anyone who has been to our house knows that, while

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-85508004095234535292010-06-18T12:17:00.000-04:002010-06-18T12:17:08.211-04:00

I made Jessie read about blood on the Internet the other night. Not the Twilight/vampire/movie kind of blood, but the kind that courses through our bodies sustaining life. To get her ready for her appointment with the hematologist yesterday. It’s her second appointment. The first was in the fall 2009, after at least 4 different sets of blood work that showed her white blood cell (WBC) count way

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-90340499579609041182010-06-17T12:26:00.000-04:002010-06-17T12:26:40.116-04:00

Just have a few (well, you only need one) great friends like CG. I first met CG when our daughters were in elementary school and my daughter (Jessie) sat on her daughter (Rachel) in the play ground. (As you can see by the photos, some things don't change.) Somehow they became great (and I mean great in every sense of the word you can imagine) friends. Rachel went off to university on the east

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-50932339361610770482010-06-15T09:47:00.003-04:002010-06-16T10:59:59.929-04:00

Last night Jessie and I treated ourselves to dinner in front of the TV. Inveterate Gleeks (fans of the TV show Glee) she missed last week’s finale because she had a Down Syndrome Association board meeting (she is co-chair) and Dan recorded it for her. This is the wind-down week of Storefront and Jessie just goes directly to her work placement at a Dollar store in the morning and then comes

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-32152875060260411652010-06-14T12:19:00.002-04:002011-07-29T11:28:15.116-04:00

In the Press June 2, 2008 (yup, 2 years ago!)This in another “in the press” week for Jessie. A radio interview about the upcoming Propeller Dance performance at the National Arts Centre 4th Stage and a TV interview. Propeller Dance is one of the performing groups that Jessie belongs to (the other being Dandelion Dance Company). Propeller is an all-abilities/integrated dance company that includes

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-21670417864079606072010-06-14T11:07:00.003-04:002010-06-14T12:26:35.768-04:00

A half decade of sustenance and inspiration—exit left. Saturday was Jessie’s last performance with Tournesol and Dandelion Dance Company. How do I begin to write about that without breaking into tears? Not possible. This transition is even greater than her prom was, or than her graduation from the high school where she the majority of her teen years. As with all of Jessie’s major transitions, I

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-10381644955828431782010-06-14T09:33:00.000-04:002010-06-14T09:33:43.127-04:00

Friday’s rehearsals for Dandelion and the Propeller show went great! I “animated” the silent auction without a hitch and the Propeller show was sold out. So sold out that there wasn’t even a place for me to sit so I had to wait until Saturday to see the show. The perquisite: hanging out with all the amazing support people running the silent auction and the snack bar. Propeller has amazing

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-9981127105076835822010-06-11T11:54:00.000-04:002010-06-11T11:54:18.963-04:00

Its the beginning of the onslaught: that weekend in June when, for whatever reason, ALL Jessie’s performances and parties fall! This weekend: Friday = dress rehearsal for Dandelion/Tournesol dance show (2 shows, am and pm Saturday) at the National Arts Centre Fourth Stage, then across the canal to Arts Court where Jess has volunteered to greet and welcome people to the Propeller Dance show (

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-3547396989738499202010-06-11T11:44:00.003-04:002010-06-11T12:11:03.486-04:00

Today (June 10) Jessie met me at the mall after school so she could get her hair cut. That was a disaster, although she is fine with the cut now. Jessie has developed her own relationship with the esthetician (a delightful young woman with brightly coloured hair and a way with Jess) and the people at the salon. She negotiates her own way with the hair dresser, but yesterday was a challenge.

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-62224275548131103482010-06-11T11:43:00.001-04:002011-07-29T11:25:30.047-04:00

As I move forward with this blog, I will also be moving backward! Posting pieces that I may have written a while ago about different phases/stages/stories in our life with Jessie! You'll be able to know when this is a "past" post by the title. I'll call these Retro Jessie (and put a title and a date on them). I may even reach way back into what I wrote when Jessie was born and during her first

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-42121421366581583002010-06-09T15:24:00.002-04:002010-06-09T15:30:17.871-04:00

While the picture is from her birthday at Disney World, it perfectly sums up Jessie’s delightful, yet challenging relationship with sugar! Yesterday when Jessie called on the cell after school was over, her opening line was “I had sugar!” No mention what exactly she ate/bought that had sugar, just “I had sugar!” “Okay,” I said, “did that sugar come in any form of food, or was it just sugar?” “

Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0