The Hanukkah Chronicles, Part 1

This is how Part 1 begins. Part 1, because I know there will be other parts given that a) this is Jessie,  b)this is Jessie in love, c) this is Jessie in love with Drummer Boy (DB) who is as organizationally challenged as Jessie is, and d) this is seen as a MAJOR MILESTONE on the road to WEDDED BLISS, which involves a beach wedding and living happily ever after in Orange County California with Drummer Boy, as he pursues his wrestling (WWE to be exact) career, and his best friend, who will be managing him. Jessie, of course, will be walking the red carpet right onto the set of Glee along with Lauren Potter. Did you catch all that? So. Just in case you got confused, this is Part 1. And this is how it begins.

Drummer Boy has invited Jessie to celebrate Hanukkah with his father’s family in Montreal. This will be a chance for DB to share his religious and cultural heritage with her, not to mention introduce her to his paternal Grandparents!  This is a BIG deal, for both DB and Jessie. They have talked about this for a long time, trying to figure out when it might happen. This is almost even bigger than, well, other moments you might conceive of in your wild imagination. Bigger certainly if you measure it by emotional energy.

So, they are ready for this. Jessie’s first Hanukkah, first time meeting DB’s bubba. And DB says it’s in December, and Jess is already nervous (I swear she watches the soaps without me knowing, else how to account for this nervousness?) and then we ask DB’s Dad for the date.

December 8. December 8 sounds awfully familiar to me. Too familiar.

After DB leaves with his Dad, we look on the calendar and find that December 8 is Propeller Dance’s Community Day. A very big performance and celebration. Jessie falls to the floor, a puddle of tears. “Remember . . . “ I say and Jessie finishes the sentence through her tears, “every problem has a solution …” but I can tell that she doesn’t quite believe this one.

I do get to hear a diatribe about the importance of sharing your partner’s religious background, about the importance of meeting family, about … well, a number of things that I can’t quite recall because I stopped listening after the first sentence. She didn’t have to convince me of anything. I knew it was important to her and DB and told her so. But somehow this little glitch fed into her bizarre and reoccurring need to re-imagine her and DB as star-crossed lovers overcoming exceptional odds to be together. Exceptional odds like, for example, me and doctor lady (DB’s mom) driving them on dates, or maybe us even setting up dates for them, or maybe us paying for those dates, or maybe us making sure they have uninterrupted and private time together, or maybe … you know, those kinds of exceptional odds.

After recovering from her oh-the-world-is-unfair-and-no-one-understands-true-love meltdown we discussed the options and I assured her that if it conflicted with Propeller, this was one time where I thought she should do exactly what she judged to be best, as I understood how important it was to share Hanukkah with DB and his family. I think I left her gob-smacked, as I had to explain this about 6 times, assuring her that this was probably the one time where work might not take precedence. Of course, I was wrong. Wrong because Community Day is a big day and Jessie is definitely expected to be there as part of her job as teacher and performer.

Three public (i.e., in rehearsal) meltdowns later, I make an executive decision. I step back from real world consequences and having her develop her frontal and other cortices by problem solving and decide to just tell her that we will make it possible for her to do Community day AND get to Montreal in time for Hanukkah.

Guess what I’m doing late in the afternoon on Saturday December 8, right after Propeller’s Community Day?

Thank you, thank you. Just another Hail Mary Pass brought to you by MoM: Maker of Miracles.   

Thankful Tuesday: Hitting Empty

www.michaboyett.com

It was a long weekend. A weekend that ended in me “quitting” my job as organizer, driver, reminder, finder, money lender, food maker to my lovely daughter with something extra, which, during these transition years, seems to be mostly attitude. By Sunday night, I am afraid, I had let her reduce me to tears. There is not much that can reduce me to tears, but my daughter has always been able to find the right combination of obstinacy (on better days, persistence) and mess (on better days, creativity) that will do so. 

I am never proud when I quit (as you can see, I’ve done this before), because I know it won’t last very long. It’s just a last-ditch effort to get a measure of compliance (about doing chores, cleaning up, following through, completing tasks, honouring commitments) or even just a smidgeon of respect. I would never go as far as to expect thanks. Because I am, after all, a mother of a twenty-something year old daughter and we mothers of children of that age have to forgo gratitude (except from fathers/husbands/other mothers/family members) for a number of years as a kind of Buddhist test of detachment. Or maybe it’s our tempting time in the desert. Whatever the metaphor or path, I pretty much suck at the transcendental part of it, and always seem to emerge bruised and dazed instead of transformed. I fear that I will be given the opportunity to do it over and over again until I get is right, and I’m not sure that will be in this lifetime.

And so this is what I began to write Monday morning as I thoughtfully tried to prepare for the Thankful Tuesday blog.    

“I am determined to pull thankfulness from me. Bit by bit, thread by thread, and hope that it is not my unraveling. 

I am determined to find thankfulness within me, underneath the dark place of tears and frustration that is my daily dwelling, and hope that this thankfulness is more than a trite platitude that will wither in the light of day and reason.  

I am determined to let go of this determination, and let all that is wash over me, let the psalms arise from my heart, psalms of joy, of pain, and be grateful that I know that there are psalms that I can let pray for me.”

And then the phone rang.

And I answered it.

It was Alison. Alison whom I didn’t know.  From LiveWorkPlay, an organization that supports people with intellectual disabilities to have a good life with a very person-centred and inclusive approach—saying that there was a spot for Jessie in their Foundations program.

And I laughed out loud and said, “Okay, who is this?”

And it was still Alison, from LiveWorkPlay, only now she sounded a bit confused.

And then I gushed, I think, and said “Really? Are you really sure?”

And when she reassured me that she was really sure, I almost hung up the phone in my excitement to share the good news with all those who love me and are worried about my sanity.

Now the back story of supports for people with intellectual disabilities in our region is rather long, but can be summed up quite nicely as: pretty meagre pickings (unless you have a lot of money and can pay for and create what you want). While Jessie has a good life, it is fraught with certain planning and funding challenges, particularly as much of what she wants to do (and is good at) doesn’t completely exist and needs to be patched together in increments by her parents, whom she resents because she has this burning (and, I keep reminding myself, natural) desire to do what she wants, her own way, without them telling her what to do.    

So, just to make sure you understand completely the miracle that occurred, Alison was offering Jessie a spot in their Foundations program—a program where ANOTHER PERSON would help to plan and support her transition from a school-based to a community-based life. It’s the OTHER PERSON here who is key (just in case you didn’t get the meaning of the caps). There will be a NOT MOM person helping plan, set goals, and connect with community (where she is very connected already, but needs some help managing all her commitments). Some NOT MOM helping her fulfill her dreams and goals, and maybe convincing her that following the actual steps in a recipe is a good idea, that adding events to your calendar is a good idea, that getting up on time so you can eat breakfast before you go to work is a good idea. Some OTHER PERSON drawing supports and community connections together to help support Jessie in her dream of moving away from home. Some OTHER PERSON (did I say that?) doing some of the things that I now do, and doing them with much more cooperation from Jessie, because that other person is not ME!    

As soon as I got off the phone, I called Dan at work and shared the exciting news.

“Look Nan, I know I make fun of it sometimes,” he said, “but do me a favour. Keep going to church.”

We meet with Alison on Wednesday.

In the meantime, I am continuing with the burnt offerings. 

At the Cottage

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 stories, Dad’s down on the dock sharing whatever they share as kids, dogs, and spouses nattered and scattered and then generally left them alone.

It was such a wonderful relaxing time, as the girls were left to their own devices and found common ground in giggles and country music star dreams. Jessie and Julie have known each other since almost birth, and have an on-again-off-again relationship where they sometimes test each other’s bossiness and then come together in their passion for music and concert dreams. They are, each of them different in their basic nature (Jessie is a messy kind of thinker and creator, Julie is more measured and detail-oriented, following plans through to their completion), but share a common love of music, rock star/country star crushes, and of course that extra chromosome. Lizzy is someone we are just coming to know through Julie, and is a shy young woman of 17 with a spark of mischievousness in her deep brown eyes that hints at the joy, passion, and humour that erupts when you get to know her better.

So the girls dibbled and dabbled and giggled and laughed and wandered in and out of the cottage on their own rhythm. Content to be with each other and not to have to work to hard to just be. That is the simple pleasure, I think, in spending time with other people who move at your pace and share some of your passions. And the simple pleasure, as a parent, of letting go and letting your child just be who they are and knowing that it works. That at 20, its okay to be in love with the Jonas Brothers and to plan to go on tour with them. That it’s okay, because others share this passion with you and so totally understand it. Not the case so often, with Jessie’s 20-something so-called typical peers.

It’s the balance I think—between belonging to different communities that do not yet completely intersect—that makes Jessie’s life rich. And it’s a balance that is difficult to find as she matures and transitions into adulthood, and grapples with independence and the degree of support required for her to make her own decisions and go out into the world and find the communities that make space for her to contribute.

I do struggle with this, often and in a very fractured way. Always questioning my values and motives and abilities—as a mom, as a person, as an advocate. I am impatient—with Jessie, with myself, with society. And tired too. But sitting down and drinking coffee (yes, even in the heat Claire knows to put coffee on for me) with the Moms is a balm of sorts. And an inspiration.

Because all the love in the world that I have for Jessie does not always translate into action imbued with lovingkindness. In fact, if you happen to pass by our house in the morning and find the windows open, you might overhear what could only be likened to Alice in Wonderland’s Queen of Spades shouting “OFF WITH HER HEAD!”

But spending time with these Moms inspires me to try harder, to let go and be patient. To go with the rhythm and flow of my daughter’s generous and creative spirit. Because what I see in them, and witness in their interactions with their daughters and mine, is an acceptance and joy in their being. And what I love about gathering together, is the way we can create a space to breathe. Where the common attributes of our daughters—persistence, inflexibility, humour, and a certain ‘je ne sais quoi’ in their social skills—play themselves out in unique ways that are recognizable as both familiar ground and very distinct personhood.

We do, each of us, as parents, wrestle with our own daemons and try to guide our children into adulthood in a world that is still not quite open to them. We move back and forth between battering down the barriers and retreating to a comfortable place where we can all just be people. And sometimes its nice not be told by strangers how patient you are, even if it is meant as a compliment, because the flip side of the compliment is that your child is just so stubborn and trying that it would take a saint to raise them. We are none of us saints; we are all of us, just Moms.

NOTE: permission to use photos granted by Moms, and directly by Julie who Facebooked me with: Hey Nancy how's it going i heard from my mom that your trying to put a picture of Jessie and Lizzy and me on your blog are you joking me good grief okay fine you can put that picture of the girls on your blog if you feel like it okay Julie