Angels 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 without Grumps, and by this year, we had fully expected the condo to be gone and our family to be forging new traditions. But things, as in life, did not go completely according to plan, and while my mother is delightfully ensconced in her new apartment, we are only now divvying up the significant leftovers, if they can rightfully be called that. They include a beautiful Quebecoise pine dinning table and a full kitchen complete with Cuisinart, kitchenaid mixer, and a full silver cutlery service. Too. Much. Stuff. But, as ours is all falling apart at the seams and hers has so much value—material, historical, and narrative— most of our Christmas in Montreal will be spend packing. I will say that my mother has done all the difficult work of sorting, and deserves a medal. As do my brothers, who live in Montreal and have dealt with the daily-ness of the downsizing.

So, the short part of this long story is that at home here in Ottawa we do not have a tree. It is the inherited one sitting in a box (along with the reindeer) in Montreal. We do, however have Christmas decorations and a tradition (mostly) of breaking out the Christmas music and books on December 1st. Which usually morphs into a much later date, but I am sure you all know about that kind of tradition. Last year, in preparation for our own kind of downsizing, I put all the angel ornaments that Jessie had been given over the years into one box, separate from the other ornaments. When we did get around to the music and the books, I also felt the need to add to the festiveness and brought out two extra boxes—the boughs and this box of angels.

I placed the box on Jessie’s lap and said “These are all your angels from all the different angels in your life.” And together, as a family, we unpacked them and placed them in the window:

As we were unpacking we shared the stories of their provenance—some funny, some mundane, some bittersweet. I think the first angel came from my parents' friends in Montreal, the Garners, who always have a special place for Jessie in their thoughts, at their home, and in their gifts. While we don’t see them as often as she (Jessie) and we would like, their angels grace her life, and that is gift.

There is the angel that I am sure Dan stole from some theatre group’s Christmas party, and the one that our laughing neighbours Randy and Nancy gave us. We live in an old neighbourhood, one where the lots are tiny and the houses cheek by jowl, so you really have to have good neighbours. Randy and Nancy were the epitome of that: Randy babysitting in emergencies and making passports with Jessie and traveling by spinning the globe in the living room, Nancy by giving me great educational advice and adapted cooking books and connections to teachers and mentors (she was a special ed teacher). They no longer live next door and we miss them.

There is the angel that I, with forethought, remembered to keep. It was the year that Jessie made and hand-painted angels for gifts. Usually, by the time any Christmas craft was done we had run out of any extras to keep. This one, though, I put aside specifically as a keeper. The bright colours and half moon smile are so typical of her drawings in grade 1.

Then, there is the final angel. The one I take out last, as it was a gift to Jessie from my Aunt Kathy, just a few years before she died. Kathy was just 10 years older than me, so a cross between a sister and a very special aunt. She loved me, and Jessie (and Dan) unconditionally, and you can never replace that kind of love. So this angel is my bittersweet ornament, a gentle prick of regret and deep-rooted love. And I place it with great care on the window, and hug Jessie, and remind her that she is indeed loved.

This she knows. And feels. And she grows silent as she contemplates the window. And then the tears fall. Because I have told her that these are her angels and when she moves away this box of angels will go with her and grace and bless her own home at Christmas. “It is sad to grow up,” she says. “I know I want to grow up and move away, I’m excited to grow up and move away. But sometimes I just want to be a kid again and have nothing change. Its HARD growing up!” She smiles and cries. I hug her. She holds her arm out, beckoning Dan. We have our family hug, blessed by bittersweet angels.

inspired by Ellen Stumbo {a writing prompt} a christmas memory.

What Really Matters {Ellen Stumbo Writing Prompt}

What really matters is love.

Love underpins life. Especially life together, because that is where life leads us—together. Love is about relationship: with ourselves, our children, our family, our lovers and life partners, and, underneath it all, if you are so inclined, God.

Love is my challenge. It’s what gets me up in the morning and then beckons me into tasks and relationships I am not sure I know how to do. But it matters deeply. And it’s what really matters in my life with Jessie, as I try to mother through this transition—hers and mine. Sometimes I stumble upon love in her laughter or her singing scales in the bathroom and it pierces me with its sheer delight and depth. Sometimes I pursue it relentlessly, asking, endlessly asking, what would love do? How would love respond? Because I am at a loss and my rational logical mind is not coming up with solutions that work.

Love is underneath all the therapy, advocacy, learning strategies, rules, and problem solving. But sometimes love gets lost there, under all the layers of care that go into raising a daughter with a disability (or any daughter, so I am told). Because without a gentle touch, a hands-on or spiritual caress that honours and frames her being, these layers of care become intrusion. And I lose sight of what I want and who she is. And I have to parse the pieces and hold them up to the light to find each brilliant colour.

And to lose something too. The sense of molding, shaping, forming. God does that. And I am here to learn to love. That is the only way to mold, shape, or form that matters. And it has taken me this long to even name it. And it will take me even longer to learn it. But I get to practice. Every day.

Go see What Really Matters to others over at {Ellen Stumbo Writing Prompt}

Sugar Shack Sunday

Yesterday was Grey Cup Sunday, for those of you south of the border, that's kind of like the Super Bowl, and Dan and Jessie had a special football meal planned that included lots of meatballs and grape jelly. I was busy working to a deadline, but I did (again, MoM . . . maker of miracles) volunteer to 1) get Drummer Boy over here to watch the game with us, and 2) make chocolate cupcakes with peanut butter icing (and you wonder why I might have to Tell the Truth About Food?!).

It turns out that number #1 (DB) completely obliviated (I know its not a word, but it makes sense to me) the need for #2 (cupcakes), as their terms of endearment for each other kept coming fast and furious and out-sweetened just about anything I could have come up with for dessert.

I asked them if they minded sharing the variations with me (I try to leave the room when they are talking to each other on the phone or in person, as I am sure I would go into insulin shock) or with any possible readers out there. They got gigglier and gigglier as the list rolled out, laughing as they recalled when they used each endearment. It was almost a travel log of their romantic encounters ... from the boot room where they met to the board room where they advocated together for employment opportunities for people with intellectual disabilities just last week.

Here they are: I dare you not to gag. They include (in no particular order, and I have thrown a few non-food related items in there, but there were very few)

raspberry danish

cupcake

strawberry tart

sweet cheeks

strawberry shortcake

hot stuff

sweetie

honey

sugar muffin

sugar lips

honey bunny

hot tamale 

hot pepper

sweetie pie

punkin pie

coco lips

my sweet apricot

short stuff


Most of those came from DB. When I was driving home he admitted, with a grin and a very endearing giggle, that he loves to call her those sweet names to make her giggle.

I have to remember to take my antacid and give thanks for weight-lifting boyfriends with a penchant for advocacy and endearments.

Today I Pick Love

A full weekend life—with dinners and dancing and raking and planning—bleeds exhaustion into the cracks and crevasses, leaving time enough, just enough only, for either love or blogging. I pick love. Today I pick love. Because it is Sunday. Because I have too often picked other enterprises over love and have then been diminished, and have diminished. So. Love it is.

I will tell you how it all works out tomorrow.  

Retro Jessie: Life With Jessie 11: Falling in Love Again [fall 1996, 6 years old]

The last of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98 and re-shared here as part of 31 for 21.

I’m still reeling from the expanse of a full day before me, trying to adjust to Life Without Jessie, since Jessie is in grade one and at school all day. I miss her more than ever this fall because something wonderful happened over the summer. I fell in love with her all over again.

You know, the terrible twos lasted a long time for us. About four and a half years to be exact. And while my love and delight in Jessie never stopped growing, it certainly hit a number of rocky patches. Patches where the thought of waking up and battling over getting dressed, or walking to school, or brushing teeth just made me want to stay in bed. But this summer I can honestly say I finally reached a point where I found her persistence admirable.

It has allowed her to learn to swim, to get on the swings by herself, to talk to other children, to continue to try to play tag and hide and go seek when she can’t quite keep up. And this summer Jessie and I were actually able to do things together without either of us insisting on going in different directions.

Perhaps it’s because she has the skills to be more independent now and doesn’t need as much support—she can get most of her clothes on by herself, get her own breakfast, look both ways before she crosses the street, answer the phone, get out her paints  . . . she doesn’t always have to ask for help or have me in there interfering in her life. Or maybe it’s because I eased up this past summer.

Not by choice, mind you. I had grand plans: swimming lessons, summer camp, reading, writing. We were going to get a head start on grade one and really work on developing friendships. We were going to have a “productive” summer.

But just as our productive summer was about to start, my aunt began to lose her battle with cancer. My Aunt Kathy. I don’t know how to describe who she was or what she meant to me, except to say that she was a perfectly ordinary woman with an extraordinary impact on my life. She loved me. But I mourn the space that her dying has left in Jessie’s life. A space that has no real meaning to Jessie, but that strikes me hard and at awkward moments. Jessie needs people who just love her. People who will continue to love her and support her through the different stages of her life. And Kathy won’t be one of those people, which is unfortunate, because Kathy knew how to love unconditionally. That was one of her gifts.

So this summer I spent as much time in Montreal as I could, needing and wanting to be with Kathy and our extended family. Trying to give back a small measure of what she had given me, and scrambling to learn how to love as she did.

When I was at home in Ottawa, a bit dazed and saddened and thinking, that way that you do when you are losing someone you love, about life, I found myself watching Jessie. Not with eagle eyes, but with open curious eyes as she splashed and giggled and did tricks in the pool, or as she transformed herself into a princess and demanded that I be the frog. “No, not that way. You have to hop Mom.”

I listened as she tried to join in on conversations with other children and invented a brother and a sister that lived with her in her house. “A long, long time ago my brother and my sister . . . .” And instead of seeing the falseness of her conversational offerings, I was impressed with her ability to understand that she had to share something that was on topic, which, in this case, happened to be siblings. Searching for something appropriate and finding only what her imagination could conjure up, she boldly offers it and waits for a response. I don’t intervene right away because I don’t want to interrupt the flow of the conversation, the back and forth jangle of 5-year-old banter, in which my daughter is an active participant.

It felt so good to watch her get excited by the prospect of a new day, of going to the pool, of painting , of having a friend over. It felt so good to watch her being happy. I had forgotten, in our struggles over process, just wat a joyous, curious, excitable, perceptive, and creative child she is. I hate to admit it, but I had forgotten to let her be happy, to let her be. And Kathy’s dying made me more aware of just how important it is to be.

The summer passed, not without pain, but certainly with a lot of love.

Jessie drew many pictures for Kathy. Pictures that surrounded her at home, in the palliative care unit, and when she died. Pictures of family, of birds and sunshine and rainbows. The last picture Jessie drew for her was done in bright green paint—a picture of Kathy in bed in the hospital. And beside her she drew pictures of all the things that she thought Kathy would like with her: “Toys, a book, coffee, a ball, and you and Grams. She would like you and Grams to be there. But oh, there is no room . . .” and she pointed to the full page and looked at me with disappointment as she struggled with how to get two more figures on the page. “That’s okay,” I said. “Our spirits are with her.”

While Jessie might not have known exactly what those pictures meant to all of us, she certainly put her heart and her love into them. I was reminded, between Kathy and Jessie, that the most powerful and enlightening force is love.

I fight for Jessie. I advocate for her. I speak to doctors and students, I sit on committees, I stay up late reading and stay out late at meetings, I find resources for teachers, I struggle with existing systems and for changes to the system . . .  because I love my daughter Jessie. That is the underlying force, the ghost in the machine. Sometimes I forget why I’m doing all these things, and they take on a life all their own. Sure, they’re all noble and challenging commitments, often they’re necessary parts of planning for Jessie’s inclusion. But this summer I began to realize that if all these other activities only lead me away from loving Jessie, from having Jessie know and feel that love, then I’ve got to stop doing them. I get tired of having to struggle and be polite and find ways to support the people who are supposed to be supporting us. I get tired of being an advocate and want to shout, “Just let me be a Mom!”

Jessie loves grade one. She gets off the bus smiling, ready to play or paint or do homework. Happy to see me, but also happy because school has been such a delight. She proudly shows me her home reader and says “We have homework” then she pauses and looks at me “What’s homework?” As I explain it to her, I realize that she has been doing homework all her life. It’s time to play. To follow her lead and delight in the messy black paint we are using for the witch’s tower she has created or to act out, once again, the story of Cinderella.

This morning on the way out the door to school, Jessie and I pause for a moment on the front porch. The wind chimes that Kathy gave us tremble and gently ring in the cool wind. “Listen Mom. It’s Aunt Kathy’s spirit,” Jessie says with joy and delight. And I think about how much I miss Kathy, and how much I miss Jessie. Sometimes you have no choice but to let go. And it’s only in the letting go that the joy and delight shines through.  

DB Usurps Coveted JB (Jonas Brothers) Spot on Bedroom Wall

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 invited, with the graduates themselves being chauffeured along Ottawa’s renowned canal and out to DB’s house in a white stretch limousine.

The evening, by all accounts, was a wild success. (DB’s mother deserves a commendation and award for making it a very special occasion—something all the students, and parents, will talk about for a long time to come!) When I arrived to pick up Jessie, I found her seated on a chair like a princess, enraptured by the show DB was giving—a hip-hop song and choreography composed for and dedicated to her. His intense performance was matched by her intense response—an electric current that ran almost visibly between them.

When we arrived home around midnight, I sent Jessie up to get ready for bed while I finished loading the dishwasher. Then, I heard a bizarre tearing/whooshing/scrunching noise echoing down the stairwell. Having admonished her to be quiet because Dan was already sleeping, I went upstairs to see what midnight madness was occurring.

Jessie was trying to shove a large amount of paper into her small room-size garbage can.

“Jess! What are you doing?”

“Getting rid of Joe Jonas,” she replied as she waved her arm across the room, calling my attention to the now bare (previously plastered with Joe Jonas posters) wall beside her bed. The noise I had heard was the sound of posters being torn off the wall and squashed into the garbage pail.

“I’ve outgrown the Jonas Brothers. I don’t need them anymore. I have DB!”

I stood there stunned—it was a moment I had always prayed for (the absence of the Jonas Brothers from our basic house décor and background sound), but now wondered if I was really ready for it.

I then turned and caught her just as she was about to cut into a group grad photo that one of the parents had printed off and given to each of the students when he came to pick up his daughter from Drummer Boy’s party.

“What are you doing?”

“Cutting out me and DB. I’m going to put THAT on the wall beside my bed!”

Jessie has truly graduated.

A Week of Greek: Chronos, Kairos, & Agapé, or Why I Haven’t Posted in a Long Time

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 expanse of me—in my own home, in my own environment, with my own work and work routines—before.

While the trip to L.A. was Dan’s gift to Jessie, I think it was also intended to be a gift to me. An expanse of Nancy-ness for me to fill in whatever way I wanted. It was a strange expanse, because it was still bounded by certain daily and typical demands—the cat needed to be fed, the house vacuumed, freelance editing completed, food made, e-mails checked. But I also had a certain degree of choice about how I would spend my days that offered up freedom for either doing or being. I have to admit that when confronted by the doing list (more laundry, paint a room, patch a ceiling, deep wash a floor, declutter the family room), being seemed the more enticing (or needed?) of the two.

It was not so much a question of filling time—or, as the Greeks would have it, chronos, chronological or sequential time—as of opening myself up to time, kairos, or God’s time. Kairos, as I understand it, is kind of the time in between, a moment out of time when something special happens or is ripe for happening. You have to be fully present to experience kairos; you can’t use it (as you can chronos), rather, if you’re lucky, it uses you.

Now that I have adequately muddled you and demonstrated why I was not a classical scholar in university, I will continue with the Greek theme that haunted me the week they were away. Because having chosen NOT to use chronos to get chores done, but to open myself up to kairos (to see the limits of my un-doing), I was catapulted right smack into agapé. Yes, I hear you gasp in fear and trembling, agapé. A not-so-distant relative of chronos and kairos that lurks in the shadows waiting for dazed and confused parents of young adults to stumble around the corner before attacking them with the true and hence accusatorial meaning of LOVE.

Because, you see, in opening up to kairos I decided to delve back into Madeleine L’Engle’s Crosswicks Journals and was reading the first in the sequence—A Circle of Quiet. In it she offers a definition of agapé (pp. 158–159) that brought me up short—with an unexpected snort of laughter and a sudden stab of revelation.

L’Engle writes, “[A]gapé means a profound concern for the welfare of another without any desire to control that other, to be thanked by that other, or to enjoy the process.”

There, in concise and precise detail, is the definition of the greatest challenge God has ever offered me—the challenge of parenting and loving a young adult through transition. Because, you see, I realized after reading this definition that I had this deep desire, this longing, this absurd need to control aspects of Jessie’s learning and life (Hooray! She remembered to sort her laundry AND wash it before drying it); to receive some appreciation from her for making my schedule her schedule (Thanks Mom, for sewing the costume and driving me to the performance on time when I only told you five minutes before I had to be there); and to experience some small measure of joy from the act of parenting (I really like this part where we argue and argue and argue and then we get to get up in the morning and do it all over again!).

And I was jealous. Jealous of all those other parents of teens in transition who profess deep and abiding love for their children because said children are learning and practicing new skills (that don’t involve lying or ingesting banned substances or breaking laws); and their children thank them (really, and not in that sarcastic way that I do get to hear daily: “Gee, thaaanks Mom.”); and they admit to really enjoying the process of parenting and learning from their teens. Like, whose children have they got and how did they get them?

But I am beginning to see that I shouldn’t be jealous, because they aren’t really being given the same chance as I am to learn about agapé now are they?

And that I should shift my focus from wanting a sort of ego pleasure in parenting to learning to lean into the hard parts so I can grow. In love, and maybe even in understanding what it is to love.

The final lesson perhaps, is to never let your family leave you alone for any extended period because you might be reduced to contemplation, which might change the warp and weft of your being and hence cause confusion in the family unit.

Recovery

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 Mingle!”

Guess she’s over Tall Thing!

Love Sucks, or Chemistry 101

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 children (I certainly hope), but there is no parenting book that I have found—not even those targeted to parents of children with intellectual disabilities—that talks about how to broach the subject with your son or daughter’s date’s parents! “Hi, I was just calling to ask you what you’ve taught Bob/Brenda about sex?” I mean, what is the etiquette for that? I spent days agonizing over that first phone call, trying to suss out Tall Thing’s understanding and his parents’ level of comfort talking about dating and boundaries and sex. Not conversations I often have with near strangers!

As for the conversations you have to listen to . . . well, I admit, I am a lurker, ever curious. But in my defense, it really is very hard not the hear a conversation going on in the back seat of your car, the car that you are required to drive to make any dating possible. While I have written snippets of these conversations down in my journal, I have not blogged about them because, no matter how delightful, I want to respect Jessie’s privacy on this front.

However, I am crossing that boundary here today because Tall Thing broke up with Jessie Saturday night. At our house, after a romantic Valentine’s dinner (red table cloth, candles, dinner for 2), and with Jessie in the long clingy dress she herself bought just for this romantic occasion. Dan was so mad he went and erased the pictures he took of them off the camera.

At first, it seemed like everything was going well. Tall Thing had bought Jessie a card with chocolates inside; she had penned him a long letter that listed all the things she loved about him. They ate a romantic spaghetti dinner and then retired to the family room to talk and hang out. And then, toward the end of the evening (really, I wasn’t spying, I just happened to be loading the dishwasher) I happened to hear: “But I can’t deal with all this grandfather drama.” At issue, I believe, were the dates that Jessie had to cancel because she was in Montreal going to her grandfather’s funeral.

Now, in Tall Things defense, I don’t think he was intentionally being callous. I think he was just getting tired of it being difficult for them to get together. So he was considering being “friends.” Not “boy” or “girl” friends. I had to exit quickly as I heard my daughter begin to melt down. Then I had to hold back my husband, who wanted to strangle Tall Thing for being so tacky as to break up after a Valentine’s Day dinner.

When it was time to leave, Jessie followed Tall Thing to the door, confusion and sadness (okay, despair, but no parent wants to write or see that) on her face. Tall Thing put on his coat and I drove him home. The conversation was interesting (once again, things you have to adjust to: driving your daughter’s boyfriend home after he has broken up with her and trying to remain respectful of his personhood and restrain yourself from dumping him at the side of the road). Tall Thing was still uncertain about being girl and boyfriend, but then in the same breath went on to tell me about what he had planned for their anniversary in May. I think both of them are so in love with the idea of being/having a girl/boyfriend that neither are really able to let go of what might not be giving either of them what they need. This is the HARDEST part of parenting (ignore any thing else I may have listed as the hardest part, this really is the hardest part): not telling your child what to do in affairs of the heart, but hoping that you have raised them in a way that will let them make mistakes and then recover.

When I got home, Dan read me the riot act. “This is NOT the time to give her the speech about a woman needing a man like a fish needs a bicycle.” So I knocked on her door and respectfully entered and sat on the side of her bed, wiping the snot and tears from her face. She talked, I listened. I said I had a little bit of advice, but would only give it to her when and if she wanted it. “Okay Mom,” she said. “I want to hear it.” And I briefly said that sometimes love sucks and it’s hard to grow up and have to deal with break-ups. But that she was a wonderful young woman who deserved someone who loved her and treasured her and with whom she shared interests. That she should take some time to think about what she wanted. Did she want someone who was going to be fickle, to keep changing their mind? But also, that I trusted that she could figure it out and that we were always there to support her and love her.

I sat there and held her for a while, then retired to our own bedroom, where I held Dan and felt grateful that I had another person to do this parenting thing with!

Sunday morning, Jessie and Dan were putting dinner in the crockpot and Dan was explaining how cooking was like chemistry. “Yea,” said Jessie, “That’s something Tall Thing and I didn’t have!”

I’m not sure how long that feeling will last. I am not sure that she wouldn’t, if given the choice, try to ‘make it work.’ I am not sure that she isn’t so in love with the idea of having a boyfriend that she might not trade some measure of her own esteem for the promise of a kiss.

But I am sure that she deserves someone who loves her, treasures her, shares her passions, and is willing to be there for her when she needs him. Someone who makes her weak at the knees and with whom she has “chemistry.”

And in the interim, we will keep trying to teach her about relationships, be there when they fail, help her make friendships and a range of relationships that will support her, and love her with all our might. That’s all we really can do, even if it never seems quite enough.