tag:blogger.com,1999:blog-2054841106186754482024-03-13T22:48:36.982-04:00Widening CircleA 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.comBlogger169125tag:blogger.com,1999:blog-205484110618675448.post-10481033997034855562017-01-19T09:34:00.000-05:002017-01-19T09:34:45.544-05:00How 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-19493856001866536782015-07-13T12:05:00.000-04:002015-07-13T13:27:27.712-04:00Baby'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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-23766409864822985832015-07-02T15:49:00.001-04:002015-07-09T16:54:13.858-04:00Epic 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, Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com7tag:blogger.com,1999:blog-205484110618675448.post-29087790497000464192013-07-02T22:50:00.002-04:002013-07-02T22:50:55.127-04:00For 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com13tag:blogger.com,1999:blog-205484110618675448.post-78491998639976630192013-06-30T00:02:00.002-04:002013-06-30T00:02:47.124-04:00Livin' 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-12979568918680436042013-05-14T13:01:00.001-04:002013-05-14T13:01:21.536-04:00Thankful 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-79706562566998340442013-05-07T12:32:00.000-04:002013-05-07T12:32:12.364-04:00Thankful 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-27423315165000065842013-03-26T12:09:00.000-04:002013-03-26T13:12:35.482-04:00Thankful 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 herNanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-75424991626607227342013-03-25T16:41:00.000-04:002013-03-25T16:41:18.410-04:00Jessie BlogsOver 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.
Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-29810568708305636392013-03-21T00:00:00.000-04:002013-03-21T00:00:07.919-04:00My 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com7tag:blogger.com,1999:blog-205484110618675448.post-84202591604396948362013-03-20T00:00:00.000-04:002013-03-20T22:24:58.298-04:00RAW , 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-65480801243775378842013-03-19T11:16:00.001-04:002013-03-19T17:19:11.017-04:00Thankful 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-32058511172554327172013-03-17T17:55:00.000-04:002013-03-17T17:55:20.957-04:00Jessie 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!Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-57137135961042111822013-03-12T15:37:00.001-04:002013-03-12T15:37:01.383-04:00Thankful 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com4tag:blogger.com,1999:blog-205484110618675448.post-34775435467717038732013-03-11T15:08:00.002-04:002013-03-11T15:08:59.908-04:00I 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com11tag:blogger.com,1999:blog-205484110618675448.post-70177748309366588322013-03-08T13:28:00.002-05:002013-03-08T13:28:49.181-05:00Jessie 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]
Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-21776109223757297292013-03-06T18:41:00.001-05:002013-03-06T18:41:51.807-05:00Nothing 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-57118831824122455162012-12-24T23:20:00.000-05:002012-12-24T23:20:17.112-05:00Merry 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.
Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-14205720702423521012012-12-23T21:39:00.000-05:002012-12-24T10:56:40.768-05:00Breakfast 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 Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com1tag:blogger.com,1999:blog-205484110618675448.post-24871000575034650022012-12-17T00:13:00.001-05:002012-12-17T00:13:14.578-05:00Let Us Hold in Our Hearts
Let us hold in our hearts, in silence, the 26 people gunned down at a Connecticut elementary school Friday. And all their loving connections.
Charlotte Bacon, 6
Daniel Barden, 7
Rachel Davino, 29
Olivia Engel, 6
Josephine Gay, 7
Ana Marquez-Greene, 6
Dylan Hockley, 6
Dawn Hochsprung, 47
Madeleine Hsu, 6
Catherine Hubbard, 6
Chase Kowalski, 7
Jesse Lewis, 6
James Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-48689260807773853332012-12-14T00:41:00.001-05:002012-12-14T00:41:48.820-05:00Jessie Flips: About Propeller [part 1]
Propeller Christmas Party
I finished writing my Christmas cards last night for people in Propeller Dance and I'm really happy about it. We had the annual Christmas dinner out in Carp, a small town just outside Ottawa, at one of the dancer's homes. I really enjoyed dancing an performing in this company and organization this year and now this year is coming to a close and I'm looking forward to Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-33630582995456713352012-12-13T00:00:00.000-05:002012-12-13T00:00:09.615-05:00The First AngelYesterday's angel post brought a mama friend to mind, Kate, who had made Jessie (back when she was just a wee thing, but still full of piss and vinegar!) a window overlaid with art (Jessie as an angel) and inspiration (six symbols of spiritual strength and the feminine).
The original source of the piece was a polaroid picture (remember those?) taken at a church bazaar, where you could put Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com0tag:blogger.com,1999:blog-205484110618675448.post-59623663941172496432012-12-12T00:41:00.002-05:002012-12-12T11:18:27.628-05:00Angels in the Window [Ellen Stumbo Writing Prompt: A Christmas Memory]
We are having a slightly awkward and unusual Christmas this year; many of our traditions are taking a hiatus as we empty my parents' (I still think of it as my parents' even though my Dad, Jessie’s Grumps, died 2 years ago) condominium in Montreal. My mother, while keeping her beachfront condo on the Atlantic in Florida, has moved into a seniors' residence. Last year was our first Christmas Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2tag:blogger.com,1999:blog-205484110618675448.post-80294499827214421442012-12-11T00:00:00.000-05:002012-12-11T11:35:14.855-05:00Thankful Tuesday: Energy AboundsThis is Tuesday, so I am joining in the Thankful Tuesday party over at Micha Boyett’s blog, Mama: Monk (if its not thankful over there, rest assured, Micha will share something with you that will make you feel thankful for going there!).
This week I am thankful for all the energy that abounds in the people that Jessie surrounds herself with:
Natalie, who took the dance support Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com3tag:blogger.com,1999:blog-205484110618675448.post-67446926796059683852012-12-10T00:15:00.000-05:002012-12-10T00:15:00.498-05:00This Weekend's Lovely Madness, in picturesThe season had begun . . . first with a computer crash, then deadlines, then a celebratory weekend rushing from one event to another and all I can say is that it was fun! While I am up still working, Jessie crashed a while ago after a weekend that started with her first community feast with the LiveWorkPlay community on Friday . . . where she brought DB and ran into many friends and Nanhttp://www.blogger.com/profile/10375461078977866753noreply@blogger.com2