How 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 neurological condition, more common in people with Down syndrome, where the inner carotid arteries supplying blood to the brain become blocked) while on holiday down in Maine. Fifteen months since my mother died. A year in hell. Too much darkness to want to chronicle or blog, my energy spent just trying survive. And that only made possible by my best friend CG, Dan (best partner ever and love of my life) and the wider community that raised money, food, and spirits that kept my family moving forward into an uncertain kind of healing.

So, we are one year out and Jessie has recovered sufficiently to demand that I write about her again. Language has returned. Movement. Passion and her joie de vivre. The darkness and absolute hell of a watershed stroke in the frontal lobes I will leave to another time. Just know that it involves aggression, impulsivity, lack of control and planning, and sensory flooding. For now, we are in healing mode. Healing, as Jessie has banned the word “recovery.’ She has had so little control over what has happened to her, that when possible, we grant that wish!

After Jessie’s first stroke (which was relatively minor, as I look back on it now), we promised her that her dreams were still the same, we were just going to take a bit of a different route to get there. She was just on the verge of moving out, she and her boyfriend had plans to continue and deepen their relationship, and the company she was dancing professionally with—Propeller Dance—was maturing and demanding more and more of her time for rehearsals and performances. It was a lovely blossoming life.

Then, in what felt like one quick moment, it all imploded. She couldn’t eat the food she wanted (her swallowing was compromised and she had to be on a soft food/minced diet; she needed to drink more than 2.5 litres of liquid a day (to keep the blood flow to her brain at an optimal level to decrease her chance of a another more serious stroke; she couldn’t engage in strenuous physical activity (good bye dance and performing); and she had to have brain surgery somewhere by someone who had some expertise in this very rare neurological disease.

In the middle of all this, my mother was diagnosed with a heart valve defect, stage IV melanoma, and died.  Then we travelled (both virtually and by car) the country looking for a surgeon and centre with experience with Moyamoya, booked (and paid for) brain surgery with the brilliant Dr. Smith at Boston Children’s Hospital, sailed through surgery only to suffer a major watershed stroke across the frontal lobes 6 hours post-op. Eight days in ICU. No sleep. Living on Starbucks coffee and steamed oatmeal. And then, and then . . . This quick summary of loss will have to do for now. I will find other places to write the darkness.

And I am blogging again because I don’t know what else to do with my “one wild and precious hour” (to paraphrase Mary Oliver). Precious indeed, as Jessie requires 24-hour supervision/care. So in the mornings, when the personal support worker arrives, Dan and I walk to our neighbourhood coffee shop and enjoy each other’s company and some caffeine before he heads off to work  and I write or walk or generally let go of all that binds me for an hour or so.

Here we are again, about to celebrate her birth and I marvel at (and often, to be honest, curse) the blessed chance to reinvent her (and our) life over and over and over again. 

Baby'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 coyote-generated universe trickiness (“Mom, you have to come pick me up. I can’t get the #2 bus to get home because there IS no bus.” “????” “I don’t know why. There just isn't a bus!.” “Where are you?” I don’t know.” “Uh, then how can I pick you up? Look for a street sign.” “Okay. [SFX: walk, walk, walk] I’m at Bank and Lewis.” “Are you sure you can’t get to the bus?” “Mom, there IS NO BUS! And the road is blocked by POLICE.” I am beginning to see that this might be a problem. I hop in the car, and when I get there, I see that there is a protest march going on and the police have indeed blocked one of the main roads through downtown. Which means I can’t get to Jessie. Which means I have to think about HOW to get to her, or her to me. And, well, you know how it goes.)

Then there is the Jessie-engineered curve: (“W-e-ll, I was GOING to brush my teeth and get dressed before leaving. But then, I ran out of time? And I had to get the bus? And I really, really, really like these pajama bottoms? So, I just, like wore them? And they have cheetah spots, which are my favorite. And so, yeah. But now work says it’s not “appropriate” for work? So I have to come home. So can you pick me up?”)  

Or the interesting and unpredictable lack-of-skill scenario (“Mom, I am stuck on a little patch of grass in the middle of the road in the mall parking lot and there are SO MANY CARS GOING FAST!!!! YOU HAVE TO COME GET ME! I AM GOING TO DIE!” Unfortunately, there is no talking down or out of this one. The only solution involves a car key, a hasty note to a waiting client, and a quick wave to passing motorists as I dart through traffic onto the median and grab my daughter by the hand to lead her, sobbing, to safety.)

And while there are always curve balls, I am trying not to hold on tight and to encourage Jessie’s sense of herself as an effective problem solver. It is, well, hard sometimes. Okay, honestly? Most of the time! In fact, the only way I have been successful in letting go is when I physically leave the house. That seems to be the only way to loosen my grip on parenting. Which is doing great things for my friendships, but not for my work.

So. Yesterday I was at my friend CG’s for lunch. I was telling her about Jessie’s afternoon plans to meet Drummer/Muscle Boy at the mall—they were going to take the bus to meet the Boy’s mother at her work, and they were all going to look at the Boy’s new furniture.

I was trying to impress CG with my growth in “letting go.” This seems to be a big theme among the mothers I know and drag out for hikes and coffee and random book browsing.

“You see?” I was saying, with my story, and perhaps aloud, just in case she hadn’t noticed.

“I didn’t even make her look up the bus or tell me any details! I didn’t question HOW they were getting there or WHEN they were meeting! I showed her that I totally trusted her and drummer/muscle boy!”

At that moment, my cell rang. CG has lived, and rescued, our life enough to know that that was probably Jessie. And she was right.

“Hey, Jess.”

“Hey, Mom.”

“What’s up?”

“So, like, Drummer Boy can’t get hold of his mom. She’s not answering her phone. So I’m going to meet him at the college and we’re going to work out together and then go out for dinner.”

I restrain myself from asking if she knows what bus stop to get off at or how to find her way to the gym. I also restrain myself from asking if she has enough money or suggesting that she make a healthy choice for dinner. I also do not ask how they are going to meet up or when she might come home. Do you see how hard I am working here?

I do say: “That sounds like fun Jess!” and “Call me when you hook up with Drummer Boy!”

“Okay Mom!”

Phew. Well-negotiated Nan! I smile at CG. She gives me a thumbs-up.

We are past the raspberry and brownie dessert and well into the tea and coffee when my cell rings again. CG’s eyebrow goes up.

“Hi, Mom.”

“Hi, Jess.” [Notice that I do not even ask: What’s up?]

 “O.K. So. Like I’m wearing my crocks and I forgot my running shoes and you can’t go to the gym with crocks so Drummer Boy bought me a pair of running shoes . . .”

“…..” That’s me pausing and processing. My daughter has size 3 DDD feet. Not the easiest to buy shoes for. And I’ve seen what Drummer Boy wears, usually shoes about 4 sizes too big for him. We are going to end up with expensive shoes that don’t fit and that are going to trip her up in the gym, where she will end up with a concussion or a major injury. And the store at the college would never even have shoes in children’s sizes. What the heck…

“Hey Jess, you know it’s not easy to get shoes for your size feet, right?”

“But the salesman helped us, size 3! I told him size 3!”

“Size 3? They have size 3? Where are you?”

“At New Balance, at the mall across the street from the college.”

New Balance. The ONLY place in the whole city that has shoes that fit her off the rack.

What can I say? Drummer Boy just scored big time with Dragon Mom.

I raise my eyebrows at CG, wanting her to note what I am going to say next.

“Jess. That is so brilliant! You guys ran in to a lot of challenges today and you figured it all out! What great problem solving!”

CG is giving me the thumbs up. I am indeed the new queen of letting go.

“Just  remember to get the receipt, because you have to pay Drummer Boy back and you don’t really know how much . . .”

CG is now giving me the chop off your neck sign.

I quit while I am ahead.

It's hard work, this letting go.

But getting easier with my coach. ‘Cause that’s what friends are for!

Epic 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, but she is still keen, for some reason, for me to blog about her transitioning and my particular challenges in teaching her anything! I have a whole long list of parenting fails since the last time I wrote, but let’s just start with the most recent].

While Jessie used to be an avid reader, she now prefers to devour episodes of Say Yes to the Dress or Buffy the Vampire Slayer on YouTube. She is beyond the age where I can make her do anything that might be good for her, but that doesn’t stop me from trying. And failing. You think I might learn at some point, but this letting go is a difficult business (even with therapy). My most recent parenting fail on this front was particularly epic. I share it with you to let you feel much better about your own parenting skills. You’re welcome.

Jessie learned to read when she was about 5 years old (using perhaps the very first edition of Patricia Oelwein’s Teaching Reading to Children with Down Syndrome) and was an avid reader—devouring first Frog and Toad, then Beatrix Potter (hence her bizarre vocabulary), then Mr. Putter and Tabby Pour the Tea, and anything by Stephanie Calmenson. There were a whole slew of books read in our local library’s Mother-Daughter book club, and of course the Harry Potter series when it first came out, and then Ella Enchanted, and Wrede’s Enchanted Forest Chronicles. I do have to say that reading is highly valued in our house: Jessie learned to pull herself up on a bookshelf, to pull things down from a bookshelf, and to stack things on a bookshelf. Our house is filled with books—on tables, under chairs, in boxes, and sometimes even in bookshelves. It is a habit or an addiction, depending on your point of view.

So you can imagine our despair when, towards the end of high school, Jessie just sort of gave up on books and transitioned easily and totally to the Internet. TV was (and is still!) limited to set times in our house. As is the Internet, except as it relates to work (for Jessie, that means advocacy or dance). Perhaps this was her way of stating her individuality, or maybe she was just needing to put less effort into her down time. Whatever the impetus, it was not something I wanted to add to our list of things over which to fight. I did, however, keep picking up books that I thought she might like from the library or the bookstore, and left them lying around on the coffee table or in her room. So in addition to her Archie comic addiction (fed on the same now falling apart compilations over breakfast), she did read (and loved) Wicked, The Notebook, the biography of Taylor Swift, and Twyla Tharp’s The Creative Habit. But it’s been a while since we found a book that appeals.

So, you will have to forgive me if, last week, when she and I were at the downtown main library, I quickly perused the “new releases” and “recommended” sections and came across what looked like a quick summer read. It looked romantic (see for yourself). And the author was a so-called “best” seller. And I thought it was from the young adult section. Really. So it would be appropriate, right? And would fit right in to the romantic life she is leading and aspires to.

So we took it out.

Then, that evening, the inimitable Gray sisters came over (Jessie’s friends “since elementary school,” and an integral part of both her our lives) and were, of course (in their campy and curious way), intrigued by this book sitting on the coffee table. They picked it up and began to read out loud. And then louder and louder. And Jessie yelled “NO!” and covered her ears.

That’s when I walked in. In my apron, my hands covered in whatever I was preparing for dinner. And I said, innocently, “I picked that up for Jess, I thought she might like it.”

And they said: “YOU picked it up for Jessie? Do you even know what this is Nancy?”

“A book?” I knew I was on thin ground here, but I wasn’t sure why.

“It’s erotica! You got erotica for Jessie! Listen!” And they began to read me the opening paragraph. Which I can’t even copy here because it would, well, not be fit for family consumption. Let’s just say it involved flesh and seduction and maybe even a few shades of gray. In graphic detail.  

In my defense, I had read the back cover: Breathe Into Me is a story about a broken girl called, Lacey. She has a stalker ex-boyfriend, a bad reputation, and not really much else going right in her life. Enter gorgeous Everett..... He's dropped into town to house-sit a mansion..... He's drawn to Lacey and wants to show her how good life can be. Can. She. Trust. Him???  Now that kind of sounds Twilight-ish, doesn’t it?

The girls, all three of them, could not stop laughing:

“You got Jessie porn! You got your daughter porn! O. M. G!”

“You got me porn Mom!” Jessie yelled, both embarrassed and delighted.

“Just wait ‘til I tell ….”

I made her promise NOT to tell my mother.

And then I made sure it was Dan, not I, who returned it to the library. After all, I have a reputation to maintain.