Thankful Tuesday: Energy Abounds

This 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 specialist course (a unique program developed by Propeller Dance to train dancers to support/accompany people with a range of abilities in Propeller community classes) with Jessie and has joined the children's class where Jessie is a teaching assistant. Natalie also knows about Hannukah, so she put together a one-pager for Jessie on some basic words, practices, and, of course, food! Now Jessie wants me to find a dreidle! All, of course, in preparation for the upcoming Hannukah meal in Montreal this Saturday with DB's paternal grandparents. While Natalie has many other wondeful and endearing qualities, I am truly thankful for the effort she put into creating this one-page Hannukah guide for Jessie.

Caitlin and all the other staff, connectors, volunteers, organizers, and family members belonging to LiveWorkPlay who are there as role models and friends and people who listen to and honour Jessie's dreams and goals. And who are also there to help create a supportive resource and celebratory community that knows how to laugh and party.

Janet and Josh, sitting at our table at our first ever LiveWorkPlay family feast, who know a lot about living on their own and finding work and dating and were glad to share their excitment and knowledge with Jessie and DB.

Ximena, Liz, Moni, Robert, Bella, Phil, Shara, Renata, Jason, the incomparable Amelia, and a host of other dancers, mentors, and musicians with whom Jessie dances and teaches, and without whom Jessie would lead a very staid, routine, and boring life filled with chores and mom-defined goals, which might include cleaning her room. But, thanks to these wonderful, energetic, creative, and eclectic people, Jessie lives an unpredictable and always exciting, if often challenging (in the good/growth way) life filled with music and movement and joy and what the buddhists might call "right" action, speech, livelihood, and other bits of the eighth-fold (as I understand it, which isn't saying much!) path. 

My friend CG,and her daughter {RG} and her friends, who always include Jessie and can never ever think of a reason for her not to participate in whatever adventure they have up their sleeves. CG in particular, for her energy in what I can only call extreme cooking, a sport that she has invented to fully welcome every single one of her children (yes, all two) and their friends (all ga-zillion) who make that house their home. Jessie, of course, would eat Just About Anything, so CG's running usually has to do with some mess that Jessie has concocted, in (and sometime outside, like the time she threw her knapsack into the canal and CG had to go get a fishing rod to rescue it) that house.

I am thankful for all these people and their infinite energy. 

   

Take Five: Patience in Five (Minute) and Five (Year) Intervals

My friend Claire has taught me patience. In all our discussions about our daughters (who share an extra chromosome and a day at H’Art studios), Claire has always modeled patience—in waiting for speech to occur, in dealing with school boards, in addressing questionable vocabulary, in teaching healthy food choices, in problem solving health issues, and often, in listening to me rant and rave about our latest disaster/challenge/insight. She is a calm voice of reason and I am reasonably  sure she was a Buddhist in some former life.

So I thought about Claire when reading one of Dave Hingsburger’s posts last week called Profound Rights: The Extra Five Minutes I Need to Think. And I thought about Beth hugging her pastor; and about Sammi participating in class; and about Jessie learning to zip up her coat just last year; and about Claire's daughter, country gal, picking up the phone all on her own (after years of absolutely refusing to even answer the phone or talk on the phone when someone called) and calling a coordinator to ask if she could join a program that she was interested in; and all the other individuals who just need a little. More. Time. To do what they have to do to become who they are to become.

I find I have to remind myself of this over and over and over again, because I forget so easily! We are a society that rushes, that values quick response, repartee, multitasking, and instant oatmeal (not to mention gratification). In the midst of all this, it is sometimes hard to remember to slow down, to give Jessie the chance to process and to grow. In both the short (5 minute) and the long (5 year) term. This perhaps, is one of my greatest challenges and one of her greatest gifts to me.  

When I go out with Jess to engage in some of those daily tasks of living—such as going to the bank or buying groceries or making a transaction at the library—I try to remember not to rush her and to actively tell her that she can take as long as she needs. I also usually remind her kind of loudly (well, not loudly, but not in a whisper) intentionally, hoping that others will hear and will think: Hey, it’s okay to take as long as you need! And will remember that when dealing with her or any other person who might need a little more time . . . such as myself when my hands are full, or a caregiver, or an older person whose fingers aren't quite as nimble as they used to be. "Take as long as you need," seems to be the kind of mantra that we might all need to continue to grow, to keep faith, and to honour our children’s right for respect. It’s the rushing for response that takes their rights away at times, that makes them doubt their ability to make choices, to judge, to decide what is right for them.

I have to remind myself (or call Claire to have her remind me) that patience is a key quality in all parenting, but especially in parenting a son or daughter with an intellectual disability. It just takes Jessie longer to process, to learn, to apply, and to explain what is bothering her. Or to accept help when she so badly wants to do it on her own.

So we have a new rule, what I call the five-minute-plus rule (this, in addition to the rule of one, which I will blog about at some other time), which is not really a rule about minutes or numbers, but about taking whatever time you need and I will always be there, I will NEVER give up! Because I know you need to do it your way, and your way isn’t my way (even though I sometimes forget that, but that’s why we have friends to remind us that our way is not always the best way). But when your way doesn’t work, I can show you my way or we can figure out a way that does work. But I won’t make you do it right now. I will wait for you to be ready and for you to tell me.

Whew. That was long! That’s because I am just learning this rule. That’s because I’m really good at being bossy and impatient and certain that my way is best. It is, truly, a learning process. And I am so glad that Jessie is so patient with ME!

Lovingkindness

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 and we are both too tired to get undressed and she has just fallen into bed without brushing her teeth.

Every night. No matter what.

This began during a difficult time in my life, just after a difficult time in Jessie’s. I was taking a mindfulness course and was introduced to a variation of this lovingkindness meditation. I fell in love with the word lovingkindness and was delighted to also find it in the Psalms. I thought, what better way to end the day with your child—no matter your faults and falling downs, no matter your age or theirs.

And so, we began the night-time blessing ritual that, when started, I promised her I would do no matter what. I was challenged, and graced, by this promise many times. Sometimes both challenge and grace arising out of the same, the very same, moment.

Such as the time Dan and I still laugh about when Jessie was so angry at me (for some reason that I cannot, now, recall) that she slammed countless doors downstairs, stomped loudly up the stairs, yelling “YOU CAN'T MAKE ME . . . YOU'RE NOT NICE . . . IT'S NOT FAIR” at the top of her lungs before slamming her bedroom door and finishing with “ I HATE YOU!!!! . . ." [pause, wait for it, in a much milder plaintive voice] "Will you bless me?”

“Yes Jessie,” I was able to answer, because of my promise. And in my blessing show her that she was valued, loved, and indeed, blessed in her anger and her adolescence.

May we all go to bed at night knowing we are beloved.