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: A List

This is Tuesday, so I am joining in the Thankful Tuesday party over at Micha Boyett’s blog, Mama: Monk. This week I am thankful for:

• Mentors for Jessie who handle her chronic lateness and disorganization with just the right balance of lovingkindness (Jess, you are a very important part of this organization and we all love your contribution and creativity and hard work, so we would never fire you or ask you not to come back) with realistic and accommodating consequences (we won’t pay you for the class you were late for, especially since you were leading it). I am learning so much from them about gentle teaching.

• Mail for delivering prizes won from a 31 for 21 blog contest, especially when they come from Colorado and include a wonderfully inspiring book by Margaret Bender (of The Ordinary Life of an Extraordinary Girl blog) called From Grief toCelebration: How One Family Learned to Embrace the Gift of Down Syndrome. And, the bonus, it’s signed by Alex. I am so looking forward to reading this!

• Boyfriends who take girlfriends (who happen to be daughters) to Remembrance Day ceremonies and hold them when they cry in remembering all those who died during war. This was Jessie and Drummer Boy’s first date totally devised, arranged, planned, and executed by themselves, independently. What a thoughtful and heartfelt date. Jessie returned at the end of day still swooning from sharing a meaningful time with DB.

• A lover and life-partner I can call a husband (because we arenow married, after 25 or so odd, really odd years) who is willing to put all to do lists and agendas aside to walk the Westboro strip with me in balmy weather, wandering in and out of bookstores and shoe stores and coffee shops and little local boutiquey design stores, holding hands and kissing every now and then. Ah, for those late warm fall days and someone to share them with.

• Friends who read your blog and take the time to email you (because you have both been in and out of town and in and out of work, and have not actually talked or seen each other for more than a week) and say they like it and say that what you write resonates with them in a way that is not limited by disability or even circumstance. Friend who like your writing and encourage you to keep doing it, even when what you write about is streaked with desperation or frustration.

• Opportunities that emerge that coincide with Jessie’s passions and gifts—for performing, for advocating, for infiltrating the mainstream—and that make the world seem like her oyster. She is (we are!) so graced to be living at this particular time, when barriers have been broken down and she is part of a new generation forging new roads into the heart of the community. As an early traveller and pathfinder, she is making connections and dealing with people who crave her generation’s input and are willing to see her and her peers’ gifts and contributions. So even though there is still prejudice, mostly there is opportunity and openness. She is well loved and respected. That is a good life.

And for Mama: Monk’s Thankful Tuesdays, so I can pause at the beginning of my week, in the midst of deadlines and rescue missions, and breath in blessings.

What are you thankful for? Write is and post over at Mama: Monk.