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.  

Retro Jessie: Life With Jessie 10: Happy Endings [1996, 6 years old]

Part 10 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. The series will be re-shared and posted here on the weekends through the month of October 2012, as part of the 31 for 21.

Jessie is six years old. She has lost her first tooth, can write her name if you help her with the s’s, mastered the tuck jump, told me to change my attitude, and is learning to read.

One day last month, as we were approaching the school yard, Jessie looked up at a street sign and stopped. “Mommy. Look. I know that word! It says school.” She beamed from ear to ear. “School. I know that word!” She had stopped underneath the sign that said “School Bus Loading Zone” and the delight in her eyes mirrored a sudden revelation that she could read not only the word, but the world.

Nothing, however, quite matches my pride as I watch her learn. She has a sight vocabulary of at least 100 words and we just moved into families of words: the “at” family, as in cat, hat, mat, and bat. What amazes me is her ability to play with word order and meaning. The unrestrained delight in her eyes as she turns a simple sentence into a silly one by switching one word and then waiting for me to laugh.

I spend my evenings cutting out pictures, writing words in bold black print, creating books, and making up games. That Jessie would read was never a question, at least not in our minds. Our house is filled with books and if any child had it in her genes to read, it would be Jessie. Reading and writing is what both Dan and I do for a living (if you could call it that) and for sheer pleasure. But I never thought it would be this easy or this much fun.

Some people would say, well, ya, sure, but she’s high functioning. I’m getting tired of that phrase. Sure, integration works for her because she’s high functioning. High functioning . . .  just exactly what does that mean? Sometimes it means that it’s more difficult for other kids to figure her out. Because at six, kids are into mastery. Who’s better than who. And there’s a general order that they have figured out that is closely hooked to age. When you lose your first tooth, when you turn six, all these rights of passage are tightly tied to the ability to do something. To read, to ride a bike, to draw a figure, or write your name.

Pushing Jessie on her tricycle the other day we met Tim on his two-wheeler. “Why are you pushing Jessie?” he asked. “Because she’s just learning,” I replied. Tim looked at me for a moment, then up at his Mom for support. “She can’t ride a bike? But Jessie is six!” This is inconceivable to him.

If Jessie were just always behind, if her effort and difference were just a bit more pronounced, I sometimes think the other kids would have an easier time of it.

“How come Jessie can read?” asks Tess one day at our house. She was a little put out because she’s used to being better than Jessie at most things. Having finally figured out that even thought Jessie turned six before she did, Jessie was really like somebody a bit younger, she now had to reassess her whole world because Jessie could do something that she couldn’t. I could see her little face struggling with this new view . . .  exactly where, then, did Jessie fit in? That is the million dollar question, and the best “educational opportunity” any of us will ever have.

For Jessie continues to be an enigma, a child who is and is not a peer. She knows her colours in French better than most of her classmates, can recognize a variety of birds, can read many of the signs around the classroom, but she can’t  ride a bike, doesn’t run very fast, and still grabs toys as a way of getting attention. She can, however, do the “Macarena,” a kind of line dance that’s a bit hit in the school yard. And while the Macarena might never show up on her IEP, it’s an important part of her education. An education that she could never get in a segregated setting.

The hard part is not so much in the day-to-day things, but in the things that go on outside our immediate lives. The undercurrent of cutbacks, legal battles, dealing with therapists, preparing for grade one, making myself clear.

There is an air of desperation these days, that makes me very nervous. People are losing their jobs, school boards are claiming that they can’t afford the services our children need. Never mind that integrating children into their neighbourhood schools actually costs less than putting them in a segregated setting. Parents are being told that their child can get an integrated placement, but they can’t promise any supports. But without supports it’s not integration, its dumping.

Jessie would never survive and thrive the way she is without supports. I am so proud of Jessie, of her classmates and her teachers, and of the school community. But there are moments when I get this weird vision that Jessie and others like her will only be this weird blip in time, this strange generation of kids who grew up and went to school together and learned something about meaning and value and caring. I shake my head and clear my eyes. I cannot believe that what we’re doing in not right, is not a step forward, and I can’t bring myself to think that at some point Jessie or the children following her will be forced into segregated settings. Settings that maximize their difference, that deny them the day-to-day opportunity to make friends, to feel good about what they have to offer the world. It’s not that we don’t struggle with how she fits in, it’s that we’re taking the chance to figure it out. Whitout that struggle, we would not have the moments that make it all worthwhile.

The best moment, the moment I would trade all others for, is the moment when, hidden in the closet behind a sheet and amongst the pillows and stuffed animals that I was ordered to supply, Jessie and Claire got the giggles. Singing funny troll lullabies in their own imitation of how a troll would sing, they began to giggle with each successive phrase as each one topped the other in silliness. Nestled there among the pillows in the dark cave of the closet, they wriggled and giggled and I stood quietly in the hallway, holding that moment to my heart. They are so few and far between and I want, more than anything, Jessie and her friends to know what these moments feel like. Moments of connection and delight. Moments when Jessie’s sense of humour and playfulness are appreciated and treasured.

That night, as I was tucking Jessie into bed, she turn to me and said, “Mommy, I like happy endings, do you?”

I do Jessie, I do.

Jessie and Claire went through elementary, middle, and high school together. Claire received funding to do a documentary about Jessie, and has gone on since then to study film in Toronto. Here is a link to this first short documentary, done in 2007.

  

Retro Jessie: Life With Jessie 9: Dancing at Dinner [1995, 5 years old]

I am ready for school to start. It’s been a long hot summer and I am tired. Tired of doing battle with a very stubborn 5 year old. Dan says she comes by it naturally and looks at me sideways in a knowing manner. Okay. Okay.

But my greatest fantasy is to wake up, see Jessie’s smiling face, say good morning, and have her say good morning back. Instead, the first words out of her mouth, to me, are “NO!” It doesn’t’ really matter what I say, I just provoke this automatic response in her. She has also taken to stamping her foot, turning her back to me, and sticking her noise in the air in an attitude of “you can’t make me do anything!” I am exhausted with my very concentrated efforts at patience and consistency. And when I lose it  . . .  well, I know what the Queen of Hearts in Alice in Wonderland is based on. That overwhelming and irrational cry of “OFF WITH HER HEAD” is a very good likeness of me around dinnertime at the end of a long, hot summer day.

I go to bed at night with parenting books trying to figure out my options. The most appealing is a long holiday by myself, which is just about as likely as winning the lottery. So I find solace in other mothers of five year old daughters. We remind ourselves that five is a difficult age as our daughters strive for independence and separation. We trade ideas on how to give them responsibility that they can manage without causing anyone bodily harm and brainstorm natural consequences. We all agree on one thing. When our daughters reach adolescence, we’re leaving home.

My biggest battle with Jessie has to do with her sense of time, or lack of it. As a toddler, I didn’t expect her to fully grasp the concept. After all, wasn’t it her job to explore every diversion between home and playgroup or the park? The double acorn, the crooked front steps, the feel of grass as you lie looking up at the sky and can’t  figure out why your mother is closing her eyes and counting to 10. Playgroup starts when you get there. Isn’t that the way the world works? Oh, if only it did. Any transition, any movement from one location to another could last as long as three or four hours if we went on Jessie’s schedule. And then she would miss so much—like school, playing at the park, and swimming lessons.

Jessie loves swimming. This summer she took lessons every morning and finally mastered this breathing thing. Fearless as she is in the water, flailing and grinning with wide open eyes, it has taken her a long time to realize that you take a big breath before you put your head in the water.

But when you finish swimming you have to get dressed and go home. Well, I guess you don’t have to, but hanging out in a locker room for a couple of hours every day is not my idea of fun. I guess I’m too driven, in too much of a rush to get on to the next thing. But I would like, just once, to be able to go from point A to point B without having to plan for each step in order to avoid a battle with Jessie over: getting out of the pool, getting into the locker room, not going in the whirlpool, getting in the shower, getting out of the shower, going to our locker without climbing inside very other locker (there are more than 100 of them), putting on each piece of clothing, and so on . . . One day I followed her lead and we got out of the locker room two and a half hours after her lesson. And while I’m willing to do this sometimes, there is no such thing as sometimes with Jessie. If you change the routine or don’t follow the well-mapped out plan and forget to be consistent you are right back where you started—prodding, reminding, ignoring, coercing, and on really bad days, yelling.

Sometimes I feel like giving up, but I don’t because I want, so much, for her to be independent, to do the things that she can do by herself. And the look on her face, when she gets her bathing suit on by herself or gets the paints out, is worth every one of my own personal battles with frustration, anger, guilt, and exhaustion.

This summer seems to have been extra hard on both of us, and when Dan comes home from work, I just want to go to bed with a good book and dissolve into somebody else’s world.

But dinner is the time for us to be together as a family, share moments of our day and reconnect. It’s  a time I would like us to savour and enjoy. It doesn’t always happen. We’re tired, it’s hot, Jessie wants to play trolls with Dan, and there’s Mom with this image in her head of the happy family around the dinner table.

It’s Dan’s turn to do battle with Jessie about staying at the table until she is finished. I’ve given up.

For the seventh time she pushes her chair back from the table and just as we are about to tell her that her place will be cleared, she says “I will dance for you.”

Dan and I close our eyes, weighting the consequences. We should say, “You can dance if you are finished your dinner,” we should be consistent, we should follow through. Instead, Dan turns up the volume.

We sit and watch Jessie dance. She sways and moves her shoulders and turns and pirouettes. Her eyes are half closed as she listens to the rhythm of the jazz and is moved by it. Some of her awkwardness is transformed into a delightful quirkiness that is both cute and very serious.

As I watch her dance in the fading summer light, I realize with a pang how much she has grown. She’s developed her own way of moving, of listening to the music that is this life around us. My only hope is that we’ve given her enough courage and comfort to always want to dance at dinner.

The music stops. She bows and looks at us expectantly, defiantly, with pride. Waiting for us to clap. We do. Not because the dance is finished, but because it continues.  

Retro Jessie: Life With Jessie 8: School [1995, 4 yrs]

Jessie is in junior kindergarten at St Margaret Mary’s school. What a simple straightforward sentence. I can say it and people nod and smile. Off to kindergarten—how fast they grow, how cute, how wonderful. Off to kindergarten, like I’s just another step, one that happens naturally, without effort.

But, just like Jessie’s first step, it has not happened without a great deal of effort, angst, and emotion. Generations of effort, angst, and emotion in fact. Because if this were 1964 not 1994, Jessie would never have been allowed in our local school, would never have had the chance to play and learn with her neighbours, and would probably not have shouted “I’m not your friend anymore, at me when I told her it was time for bed. Oh the delights of integration!

I look at the picture of Jessie’s first day at school and cry. There is nothing in the picture itself that would make you cry, just a proud little girl with her backpack standing on the front steps, ready, just like any other child for her first day of kindergarten. She has not yet got that ticked off look that she gave me when I was hovering too close at snack time or helping her to line up for recess. The look that said—get out of here mom, I know what I’m doing and you’re bugging me.

And while Jessie knows what she is doing and is perfectly confident about where she belongs, I still cry when I look at that picture. It represents five years of struggle and growth. Five years of questioning our own values and figuring out what we believed in. Five years of getting to know Jessie and finally realizing that all we wanted was for her to have the ability and opportunity to feel at home in, to have a sense of belonging, to a community.

When Jessie was born and we were told that she would have to go to a special school, a segregated school for children like her we didn’t question it. Let’s face it, school was the least of our concerns at that point. And while it’s still true that Jessie belongs in school with children “like her,” what has changed is how we define “like her.” Like her doesn’t mean other children with Down syndrome or a developmental delay. Like her just means other children—her peers (some of whom may, or may not, have a disability or even Down syndrome), her neighbours, her friends.

We’ve learned to look at Jessie’s needs, not just her special needs. And the ones that take precedence are those that will contribute to her sense of self and belonging. Those that will give her the chance to lead a challenging and rich life and will allow her to share her very unique gifts.

When she was small, I was committed to the idea of integration for Jessie and for anybody else who had the courage and energy to fight for it. I knew that integration meant that Jessie would be able to reap the benefits (and the heartaches) of being a part of our community.

But maybe the point is that our community, our schools, need to have the chance to reap the benefits (and the heartaches) of having Jessie as a full-fledged participant. The focus shifts from just Jessie and her needs to include our needs as a community. While Jessie needs to feel a part of our family and our community (and that’s a pretty basic human need) our own family, our friends, and our neighbours, deserve the chance to re-evaluate and strengthen their own feelings of acceptance, love, understanding, and self-worth.

I’m passionate about this issue, not just because I love Jessie, but because I‘ve seen and felt the effect she has had on others, myself included. She offers us the chance to build caring, creative, and fearless communities from within. The problem is, some people see inclusion as a product. It works or it doesn’t. But it’s not a product, it’s a process. And like all processes it can be messy.

Those first few weeks of school were hell. Not that anybody would have noticed, because I was so very careful about being nonchalant, relaxed, easy going. I felt this tremendous pressure to just kind of go with the flow and keep all doors open. Jessie is the first child at St. Margaret Mary’s with a developmental delay and I wanted to make sure that I appeared relaxed and comfortable enough for everyone else to take their lead from me. But underneath I was a seething mass of tension and fear.

What if . . .  the kids make fun of her, no one understands what she’s trying to say, she pushes all the time, they don’t tell me what’s really going on in the classroom, they don’t give her enough time to respond . . .  But St. Margaret Mary’s has lived up to its logo: the little school with the big heart. Soon everyone (all 115 students and 6 teachers) knew Jessie and all the other children in junior kindergarten. Her peers and big buddies run to greet her when she enters the school yard and they don’t even seem to mind that she won’t look them in the eye. When Jessie pushes, she gets pushed back; when she grabs a toy in the sandbox, Alex has figured out that she just want to join in and finds a way to include her.

The big joke in junior kindergarten this week is “1,2,3,4,5,6… banana!” All the kids are saying it and I’m sure none of the parents get it. But when it was Jessie’s turn to do the calendar, she began to count the days, got a little bit lost, and then turned to her classmates, grinned, and said “banana!”

When I see how the other children in her class and in the school have just taken Jessie in as part of their lives, I begin to relax a bit. And thank God for great teachers like Betty Clough. Great, not because she knows a lot about special needs or Down syndrome—which she didn’t before Jessie entered her class—but great because she knows a lot about children, and cares about them. I get the feeling that together, we’ll be able to figure things out and make this year a success for Jessie, her classmates, and the school. 

Retro Jessie: Life With Jessie 6: Gym Class

Part 6 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98. The series is being re-shared and posted here on the weekends (plus Mondays) through the month of October 2012, as part of the 31 for 21. 

I thought it was a good idea.

Natalie and Drew, two of Jessie’s classmates from preschool, have been taking gym classes once a week during the year and they love it. They get to run around, climb and clamour, jump on trampolines, and balance on beams raised to incredible mom-defying heights.

Now I know running is something kids just do, something most parents try to control. But for Jessie, even though she took her first step at a relatively young age, running is not something she just does. Fast, now fast she’s good at—fists clenched tight, knees stiff, eyes concentrated and fierce and her little feet barrelling across the expanse of open space. But if you don’t lift your feet up high an risk that moment of balancing one foot, you don’t run. You kind of, well, waddle fast.

And if you don’t or can’t run when you’re a three and a half year old, you miss out on all kinds of opportunities—like being the first on to the tricycle or being part of a game of chase.

So gym class, besides leading us to this very definite goal, would be fun, right? Jessie thought so. We went to visit the gym club and she stood riveted to the window as she watched other children bouncing on the largest trampoline she had ever seen, climbing up the tallest ladders, and rolling and balancing in brightly coloured tunnels. “My turn?! My turn?!!” she kept signing and saying as I tried to explain to her that we were just here to watch. I promised that we would come back to “gym” and she could have a turn. As I watched her, I knew this would be a great idea.

I called the club and registered her for a Thursday morning class. I explained that she had Down syndrome, liked to go fast and climb high, and used sign language. No problem they said. I breathed a sigh of relief.

I still get tense when I make phone calls like that. I used to first explain that Jessie had Down syndrome and then ask if we could participate—not knowing what kind of attitude I would run into. Instead of being reactive, I’m now more proactive: her we are, how can we do this? And to be perfectly honest, I have yet to run into a problem—but I’ve always picked our activities carefully—the Y, the library, places that I knew were guided (at least in theory) by inclusive philosophies. Places that I knew wouldn’t or couldn’t slam the door in our faces.

So we go ready for gym class. I bought Jessie new shorts and a top, we practiced jumping and talked about the big trampoline. The big day arrived. I had Jessie so pumped up she tried to leave the house before breakfast in only her diapers. “Jessie! Where are you going?” “Gym” she replied as she marched out the door. Dan rescued her and then we let him go to work, promising to call later. We did the dishes and played trolls waiting for it to be time to go. Finally, we headed out the door to the car. Which wouldn’t start.

I should have gone back to bed right then, but having convinced Jessie that gym class was her destiny, and myself that the first class is always the most important, I blithely marched in to the house and called a taxi.

When it arrived, she wouldn’t get in. “No taxi, no taxi! Gym! Gym!!” I tried to explain that we were taking the taxi to gym. But in Jessie’s mind a taxi ride was a taxi ride and gym class was gym class. Mommy drove the car to gym and a taxi ride, well, a taxi ride was just foreign territory. I wrestled her into the car, the taxi driver just gritted his teeth and drove. Jessie fell in love with not sitting in a car seat. When we got to the gym club, she refused to get out. “No out. No out. Taxi! Taxi !!” I wrestled her out of the car and left the driver with a big tip and a big grin.

Inside Jessie thought she had died and gone to heaven. All this stuff just for her! There were at least six other classes going on at the same time and Jessie had a hard time figuring out where she was supposed to be, who her teacher was, and what she was supposed to be paying attention to. I stayed to sign and to try to keep her with her class.

It was impossible. The last thing Jessie wanted was for me to direct her, and it seemed that the last thing the teacher wanted was to have to deal with Jessie in addition to five other three year olds. Jessie wanted to jump and explore all the equipment; she had her own agenda and was not going to be swayed. I wasn’t sure what to do. Half way through the class, having battled with Jessie for most of it, I carried her out kicking and screaming. I couldn’t blame her for wanting to try everything, but that wasn’t the way the class was set up. I sat her down in the grass by the fence, turned my head away an started to cry. Out of anger, out of frustration, out of fear.

We’ve had such an easy time of it up to now. Everyone welcoming Jessie’s presence and really trying to find ways to include her. Gym class felt like the beginning of the end. Reality hitting us in the face.

It’s fine to say that your program is open to people with disabilities, but you have to do more than just open the door. You’ve got to find ways for them to participate in a meaningful manner. I was angry. Angry at them for saying “no problem,” when in fact Jessie posed a problem. Angry at them for putting her in such a confusing situation, for not giving her the time to explore or finding ways for her to follow her class. But more importantly, I was angry at myself for not doing more preparation, not going I in to talk to them about Jessie and her needs, for assuming that when they said no problem, they meant it.

We haven’t gone back to gym. We’ll find some other place to run and jump and climb.

Addendum: I was so timid then! And didn’t know much about 2 year olds I guess! Reading this now, Jessie’s behaviour doesn’t seem so different than that of any other two year old! And just in case you’re wondering where we went to run and jump and climb … it was back to that gym club, where Jessie participated until at least grade 4 or 5, along with her friends from preschool and elementary school. And we had stellar teachers and great adaptations. What happened that day? I’m not sure. What brought us back? Other parents from preschool who were convinced that all our kids should do gym together and we’d find the right teacher. Ah, community!  

Retro Jessie: Life With Jessie 5: Letting the World In

Part 5 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98. The series is being re-shared and posted here on the weekends through the month of October 2012, as part of  31 for 21 to raise awareness about Down syndrome. 

Jessie is almost two and a half years old. She Finally has hair, beautiful blonde hair; she loves books (our current favorite is Farmer Duck); she walks, she talks and signs; and she has brought more people into our house than any typical family would care to imagine.

Many I don’t know what we would do without. Others we just have to put up with—like the Handicapped Children’s Benefit worker who said that having a child with Down syndrome must be a joy because they are all so happy. I looked at her and smiled (she helps determined whether we get financial aid) and thought—come visit our house around dinnertime. If children with Down syndrome are all so happy, then I must really be doing some permanent damage, because Jessie is not always happy.

Jessie is Jessie. And these days that means a fierce and persistent drive for independence. That’s why Barbara, our special needs worker is such a godsend. She knows how to make every fine motor and conceptual activity Jessie’s idea.

Last week Barbara was at the house when our speech therapist arrived. Jessie was being her usual 9 a.m. self—reacting to some of the pictures the therapist brought with her then going to get on of her own toys, then pointing to “THE BAG.”

You have to understand here that each therapist comes with a bag of toys  . . .  the infant development worker comes with a bag of toys, the speech therapist comes with a bag of toys, the psychologist comes with a bag of toys, and even the physiotherapist comes with a bag of toys. Jessie expects all adults entering our house to come with a bag of toys specifically for her.

“The bag” was opened and the asked for toy procured—a bath for the baby, which held her attention for about 2 seconds. The speech therapist asked if we were doing much “table work” with Jessie these days. Table work basically means sitting down at a table and focusing on a specific task. Barbara and I eyed each other and began to explain what we did do (both of us knowing full well that we did almost no table work at all).

There is a subtext here of course, one that all parents of children with special needs might be familiar with. We thought that the therapist was commenting on Jessie’s lack of attention, lack of ability to focus on one task for a period of time. Both Barbara and I were trying to define Jessie’s actions, and more importantly ourselves. Our ability as caregivers to meet Jessie’s needs and to encourage her development.

There is this funny thing that happens when therapists and experts enter your life. You feel watched, judged. Your child’s development depends on your intervention. Now this is true of all children, of all parents. But rarely do parents of so-called “typical “children have so many people watching and taking notes. I didn’t just write down Jessie‘s first smile, her first step. I had massive check lists to fill out—her first gurgles (exact sound and intonation please), pincer grasp, hands together at mid-line, stacking two blocks, three, four, ad infinitum.

As a Mom or Dad you can slip so easily into trying to create the perfect little person, and it’s funny, because you might think that because Jessie wasn’t “perfect” to begin with, we wouldn’t have to wrangle with these feelings. But they are just as prevalent in parents of children with a disability, just the reference points are different.

The only way for me to keep centered is to remember that, to me, being a good parent means allowing her to be who she is and to give her the chance and the opportunity to grow at her own pace. If doesn’t mean trying to make a good impression on therapists, family members, or other parents. And let’s face it, making a good impression with a two year old is almost impossible when they go limp and then kick and scream as if you were beating them to death as you try to stop them from electrocuting themselves in an open socket at the museum.

The difference, perhaps, between myself and any other first time parent is that I am asked to become an expert in a number of different areas that are all new to me. And I’m never sure what behaviours are due to an extra chromosome or are just the result of being two. Do all two year olds repeatedly throw the sand out of the sandbox at preschool? Hide under the sensory table and eat play dough? And what about shoes? Every child that I know with Down syndrome throws their shoes out the car window. Can an extra chromosome control such things as throwing shoes out car windows?

At each step of Jessie’s life I’ve had to learn new powers of observation, assessment, and intervention. I’ve had to keep up with research on language acquisition, heart defects, and integration. Because the truth of the matter is, I can never feel that Jessie will get the services and therapy that she needs, will be able to lead the life she deserves, if I just leave it up to the powers that be.

Each time we get begin to get comfortable—in the infant development program, our local preschool—it’s time to think about the next step, to learn the ropes of a new system, to fill our more forms and to meet new people. And meeting new people often means either convincing them that Jessie belongs or educating them about Down syndrome. I’ve got the energy and the excitement right now, but sometimes I get tired. Yup, I’m a parent.

Jessie learned her first joke last month. She knocks on the table and you say, “Who’s there?” She says “Boo,” and signs “blue” (she’s a little confused on this issue). You say, “Boo who?” and she rubs her eyes as if she is crying and then laughs out loud and says “yoke” for joke. She is really quite proud of herself. Now I just have to get Dan, who taught her this fine example of turn taking in communication, to teach her that after doing it three times in a row, it will be hard to get someone, other than your parents, to laugh. 

Addendum from Nancy, 2012. It is SO hard NOT to make any changes to this writing, either qualifying or noting something in hindsight, or drawing out what was the beginning of an observation that become more developed later on. But, on the topic of checklists and the contrived busy-ness of parenting a child with special needs I have to link you to Jennifer Johannessen, whose writing and perspective and ability to ask challenging (hence, enlightening) questions I admire very much! Go find her book, No Ordinary Boy! 
SEE ALSO

Retro Jessie: Life With Jessie 4: Give Me A Sign [1992? 2+ years]

Part 4 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98. The series will be re-shared and posted here on the weekends through the month of October 2012, as part of the 31 for 21.

Jessie has brought a whole new language into our life. Sign. I’ve always moved by hands when I speak, gesticulating with rather random abandon. Now my movements can have meaning.

Jessie doesn’t have a hearing impairment and we’ve managed to avoid tubes so far, but like many other children with Down syndrome, her receptive language skills far exceed her ability to communicate using words. Or words that others can understand. I don’t really know why, and at this point in time I am too busy to keep up with her rapidly growing signing vocabulary to find out.

Brenda, our speech therapist, suggested that we try using Signed English with Jessie to help her communicate and what a world it’s opened up! We started with “power” signs, like more and stop and play and no. Words that would give her the ability to ask for what she wanted, to see the effect of communicating. Sign “more” and more cheerios appear. Sign “play” and your Mom plays with you. Wow!

Jessie changed almost overnight from a very frustrated toddler into a blossoming grinning child reaching out to explore the world. We had no hesitation about using sign, about trying to give her the tools to express herself and to make sense of the world. And I certainly didn’t mind the attention it brought as she and I signed in the playground or the grocery store. I’ve met some parents who don’t want to use sign because it calls too much attention to their child, it makes them seem even more different. But I can’t figure out why you wouldn’t want to give your child the power to talk about the world around them, to ask for what they want, or to express the connections that they are making.

Besides, I don’t mind the attention. People come up to us and ask questions when they see us using sign, and it gives us a chance to explain some things about Down syndrome. Really important things—like the fact that Jessie understands a lot more than you might think if you just listened to her talk. People are impressed by sign and amazed that a little kid with Down syndrome can speak with her hands. I think it makes them do a double take, makes them question their first reaction when they see her. If she can sign, then what else can she do?

And she can sign! Now that she’s got the concept she’s frustrated by my inability to keep up with her. My sign book is worn and I realize my memory is not as good at it used to be. I practise Little Red Riding Hood and the Three Little Pigs and the Billy Goats Gruff before I go to bed at night because I don’t want to be caught in the middle of a story having to look up a key word or phrase. Have you ever tried to read and sign a picture book? You need at least four hands!

We had to work on “want” for a little while. It was a big jump from labelling to making two word sentences that involved a verb. Instead of just snack or ball or book, we were trying to get her to say and sign “want ball” or “want book.” Then one day, when we were in The Papery, she saw a row of shiny sparking stickers that made her eyes light up. She leaned forward in her stroller and fiercely signed “ I want.” I was so excited! “You want those stickers,” I said, trying to contain my glee. I really wanted to shout to everyone in the store “She did it! She signed want!”

And then my heart fell. I didn’t have any money. She signed “I want” and I couldn’t respond to her first use of the sign. What good is want if it doesn’t work? I put my own pride in my pocket and asked the sales clerk if we could have two stickers, I’d pay for them later. When I explained why, she gave me the whole sheet. Jessie grabbed on to them and signed “I want” all the way home. Laughing and giggling at her own power.

The teachers at playgroup, Sandy and Darlene, have really gotten into learning and using sign in the classroom. The other children have picked up on their enthusiasm and I now get calls from parents who want to know what their child is saying with their hands. It’s piqued everyone’s interest and Jessie has become the resident expert on sign. If one of the teachers doesn’t know a particular sign, they ask Jessie. And for once Jessie has the chance to teach her peers something, to be the leader instead of the follower.

The photographer came to playgroup last week. All the children were dressed in their best clothes. Some didn’t want to smile, some squirmed. But when he told them to say cheese, they all, every last one of them, put their palms together and signed “cheese,” without even thinking about it. Now that’s a photograph!

Retro Jessie: Life With Jessie 3: Coming Home

Part 3 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98. The series will be re-shared and posted here on the weekends through the month of October 2012, as part of the 31 for 21.

We have been invaded by cloth diapers and disposables, infant chairs and rocking chairs, a cradle and a crib, not to mention friends and relations. The  most noticeable new acquisition, besides Jessie herself, is the breast pump. Not one of those little hand-held jobs, but the great big industrial model. The lights in our apartment pulse when I hook myself up and turn it on. I feel like a cow, but at least I don’t feel like the world’s worst mom anymore.

The day I admitted defeat, I sat in a corner in the living room and cried. I was sure I was not going to be able to anything right if I couldn’t even get her on my breast. I was convinced that her whole fragile future depended on it. My mother, who had come to stay with us for a while, hugged me, told me I wasn’t a failure, that I was doing a great job, and cooked liver and onions for dinner. For some reason it tasted delicious and I looked at her in awe.

But Jessie is getting my breast milk, even if she didn’t get on the breast. It certainly wasn’t for lack of trying. La Leche League meetings, droppers, teaspoons, trying every conceivable position possible, and more than 12 hours with a lactation consultant who said that Jessie certainly was persistent—in sucking the wrong way. I drew the line at sticking my finger down her throat and making her gag as I tried to massage the part of her tongue that she was supposed to use to draw milk from the breast. I guess we’ll have to watch what we teach her in the years to come.

I’ve been reading everything I can get my hands on about Down syndrome. Articles on genetics, heart defects, muscle tone, speech, and education. But my favorite book is the one that my 12-year old cousin found for me in his school library called Our Brother Has Down Syndrome. It’s written for children and has lots of picture. Pictures of a 3-year-old boy with Down syndrome eating ice cream, getting into trouble, hugging his sisters. It’s the book I go back to again and again because it’s warm and human, and it gives me hope.

Hope for what? I guess that Jessie will just be a kid, like this little boy in the book and that others will see her that way.

I have this urgent need right now to tell everybody that she has Down syndrome. I can’t help it. The first time I went to our corner health food store with her they all oohed and aaahed and said what a beautiful baby. “Yes, and she had Down syndrome” I replied, watching them. Waiting. But there was no explosion, no withdrawal, only comments about her delightfully blue eyes. I don’t know why I need to tell strangers that she has Down syndrome. Maybe it’s my way of getting used to the idea, of desensitizing myself. Or maybe I just want to get it over with so we can get on with life and they can be as amazed and impressed as I am when she smiles or turns her head to a sound.

I am living in a constant state of exhaustion. What on earth did I do with all my time before Jessie was born? Between feeding and pumping and rocking and reading, I spend a lot of time cutting out pictures from magazines and drawing black and white patterns and faces on paper plates to put up around Jessie’s crib and change table. We’ve hung rattles and tin pie plates and small bells in places where she’s likely to hit them by mistake and make a noise. We massage her feet and her head and her belly and move her arms and legs while singing nursery rhymes and tying to remember all the words that somehow disappear after the first two lines.

Bev, our infant development worker, has lent us a great book with lots of songs and rhymes and Jessie seems to love these. Bev. What would we do without her? It seems that giving birth to a child with a developmental delay has all sorts of bonuses I never knew about. Bev is one of them. She comes into our home once a week and works with us so that we can do all we can to help Jessie grow. She shares in our celebrations, is a keen and caring observer of Jessie’s development, and is able to hook us up with the resources that are available for Jessie and ourselves. More than anything, she supports us as parents, giving us the information and courage that we seem to need to forge ahead. I know all parents celebrate with delight their child’s first gurgles and smiles and steps. But already I notice a difference. We can’t assume that Jessie will just do these things, we have to set up situations that will lead her to them. Bev gives us ideas and is there to celebrate each tiny step she takes.

My biggest problem is that Jessie doesn’t sleep between 2 in the afternoon and midnight! The doctor says this is her social time, but around 7 I run out of “social” steam, and so I bundle us up, Snuggli and all, and we walk the streets, ending up at the club where Dan is doing his show. Of course, as soon as HE puts the Snuggli on, she falls asleep. I thought babies with Down syndrome were supposed to be lethargic, sleepy, and without much energy. But that describes me, not Jessie. She’s wide awake, alert, and demanding.

The payoff is—she smiles! Just when you are ready to have yourself committed for ever having had sex, they smile! It’s not gas, it’s not a weird reflex. It’s a smile! At first I wasn’t sure, because it seemed like just a flicker of a grin. But in the last week she had developed a great big toothless smile that seems to eat up the whole world. And the best part is, she smiles at ME! She looks at my face and smiles with delight and I feel this electric current run between us. She knows of course, that now I’ll do anything for her. I’m hooked. For life.   

Retro Jessie: Life With Jessie 2: It Begins

Part 2 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 will be posting the installments here on the weekends through the month of October 2012.

Jessie slept a lot those first few days in the hospital, and rarely cried. I, on the other hand, cried until I thought that if I cried any more there wouldn’t be enough fluid in my body to produce milk. The hormones after giving birth wreak havoc on any kind of logic.

I cried because I couldn’t understand why it had happened to us. I cried because I was filled with love. I cried when I made up songs and rocker her in my arms for hours on end. I cried out of frustration when she wouldn’t get on my breast. I cried when she only had two sucks from the bottle and then fell asleep. I cried when she cried for the first time because she was hungry.

I cried because I had to grieve. And what I was grieving was not Jessie’s birth, but the death of a set of expectations. We had expected a so-called “normal” child, and without realizing it we had a whole set of futures planned for that child. The coos of grandparents, exclamations of beauty, walking, talking, learning the names of seashells, driving, creating, going to university, reading the Alexandria Quartet. I had to grieve the death of a child that had never been born, that had lived only in our imaginations.

Dan and I spent long weepy winter hours balanced on that single hospital bed with Jessie nestled between us. We touched her and cuddled her and tried to catch and hold her sparkling blue eyes. A doctor told us that the sparkles were actually common to Down syndrome—the result of some physiological or chemical imbalance—but we really didn’t want or need to know that. The sparkles were, to us, a magical dance of life, a laughing intimation of Jessie’s character.

I thought long and hard in those hours of rocking and singing and crying about what it was we wanted to share with our child anyway. Already we had shared tenderness—was that so different from other babies? She and I had shared the trauma of the first bath where I was certain I was causing her grievous bodily and psychic harm and I’m sure she felt the same way. We wanted to love her, to challenge her, to lead her into the beauties of the landscape of a changing tide in Maine, to teach her silly spider songs, to go fishing. I wanted to be able to lead my child to herself, to have her love and honour herself and grow to the best of her abilities, whatever they might be.

None of these experiences, these opportunities, had been taken away from us when Jessie was born. If I focused hard enough, they actually seemed to multiply, because when you take away all the externals of achievement, what you are left with is what really matters. I mean, did it really matter if she understood the theory of relativity (which we certainly wouldn’t be able to explain to her)?

One day, on the way home from the hospital through the January slush, Dan saw a little girl with Down syndrome and her father. He followed them, “like a detective,” he said, “only I was crying . . . and I wanted to run up to her and hug her and ask her Dad, oh, I don’t know … I just wanted to know if she was happy. “ But he couldn’t bring himself to intrude with his tears and his questions. So he followed them, for about four blocks. “And Na,” he said as we lay in the hospital bed, Jessie between us, “they looked happy. They were holding hands and laughing.”

His biggest fear was that Jessie would be teased, called names, left out of games. That she would feel this constant sting of being different, of not belonging.

My biggest fear was that I wouldn’t be able to love her right. That I would want to change her.  I wanted to know everything there was to know about Down syndrome so I could accept her the way she was.

The doctors were helpful. They told us all the things she wouldn’t be able to do, and they were numerous. She would never speak very well, she would walk much later than other children, she might never be able to read, she would go to a special school, and she would always be dependent. We were discouraged from finding and early intervention program. As the doctor described it, it just held out false hope for parents and none of the benefits had been proven.

When we asked for something we could read, they gave us a medical text on birth defects published in 1958: a clinical description, complete with photographs, of very kind of birth defect imaginable.

It described the physical features of Down syndrome with close-up shots of protruding tongues and slanted eyes. We kept looking at the book and then looking at Jessie. They weren’t the same.

They weren’t the same because the book described the condition, not the individual. And while Jessie has Down syndrome, she is not Down syndrome. She is Jessie!  The reality is not in the things she can’t do, but in the things she can do, the gifts she has to share, the relationships she has with those around her.

Dan kept thumbing through the book of birth defects. He stared at the pictures and came to believe that we were actually very lucky. Down syndrome seemed minor compared with all the other things that could have happened. “Look at this Nan,” he would say as he pushed the book onto my lap, “I mean, do these babies, do all of them have someone to love them?”

I refused to look at the book again. I sent Dan to the public library and badgered the nurses for something more useful. The hospital social worker was on holiday, but if I wanted, they could contact somebody from the Children’s Hospital for me.

Louise peeked her bright face into my room, introduced herself, and tiptoed over to where we were sitting. She asked if she could hold Jessie and when she cradled her in her arms, I could feel the gentleness and care that enveloped us. “She is beautiful.” My spirits rose and I beamed with pride. Finally, there was somebody in the hospital who could see beyond the extra chromosome.

Louise listened to me talk. She cringed when I told her about the birth defect book and told me not to read anything written before 1980. That information was so out of date it was depressing. Instead, she handed me a packet of information and answered my questions. Life for children with Down syndrome had changed. They aren’t institutionalized anymore; they live with their families, they have friends, they become independent.  But each child is different. Each child brings its own gifts and its own challenges. She encouraged us to just get to know Jessie, to hold her and love her. She could help us negotiate the system, if that’s what we wanted.  It was up to us. We could reach her anytime at the Child Development Clinic at CHEO (the Children’s Hospital of Eastern Ontario).

She left a folder full of information. Articles on genetics, medical concerns, and early intervention. Human interest stories that profiled children and young adults with Down syndrome. She told me to take my time, to talk with Dan, and she’d come back to see us together if we wanted.

Here was somebody who had listened to what I was saying. Who gave me information that was useful and positive, and who actually saw Jessie as a baby and us as a family. When she left I felt a new surge of hope and curiosity.

My parents flew up from Florida as soon as we told them Jessie had Down syndrome. They arrived, tentative and gentle, with presents in their hands. I wanted them to see Jessie with her cute blue eyes and tiny hands, but when they arrived Jessie was under lights because she was jaundiced. As I led them into the nursery, I tried to explain that it wasn’t as bad as it looked. Jessie was in an incubator. She was yellow and had padding strapped over her eyes that made her look like some kind of creature from The Fly. Her stomach and face had red scratches from her long fingernails and her tiny hands were now encased in big mittens. My mother took a deep breath when she saw her. This wasn’t exactly how I had envisioned them meeting their first grandchild.

We cocooned in our private room and watched the snow fall outside. My mother stayed at our apartment and cooked and cleaned and made little flannel mittens for Jessie’s hands. I struggled with breast feeding and Dan departed every night to do his show (he was in a comedy troupe). I hate to say it, but the best thing I did, after  not smoking during those long months of pregnancy, was to give in to the need for a cigarette.

It was down in that dungeon of a smoking room (a six by seven foot lair next to the boiler room) where I met Anne. I must have looked forlorn and weepy as I sucked on my cigarette and this cheery woman next to me asked me what I was in for. “I had a baby,” I said. “She has Down syndrome.” I was trying the phrase on for size, as I would find myself doing for the next two months or so. “Oh, how wonderful!” she said. I looked up at her, wondering f if she had heard me right. She smiled. “My son Scott had Down syndrome. He’s 17, and what a boy!” She laughed with pride and love. I knew it was time to go home.     

Retro Jessie: Life With Jessie 1: In the Beginning

In 1996/7, I wrote a series called Life With Jessie that was aired on CBC’s Morningside with Peter Gzowski  (collected and published in The Morningside Years). For those of you who aren’t Canadian, CBC is the northern equivalent of NPR. Anyways, I initially began to write about Jessie’s life in response to a number of interviews and stories I had heard on the radio that focused on the challenges and/or joy/inspiration of parenting a child with a disability. I had begun to turn the radio off when these types of stories came on, because they so did not reflect our life, and only told about the difficulties, the challenges, or the amazing things that parents and/or children had done in overcoming their disability.

You know those stories: they fall at either end of the inspiration/desperation scale. As if there were only two ways to parent and/or live with disability. What was missing was any portrayal of the normalcy of life with a child with a disability. It just IS! And I wanted to share that with people. (Remember, there was no blogosphere then!) The road, the twists and turns, the diapers and first steps and first signs and first days of school. The exhaustion of a rocking a child who just won’t sleep, or of holding down a child for some invasive medical test. I just had a feeling that the common threads of parenting would be as numerous and important to the tapestry as the threads that were uniquely ours. I wanted to say: Here we are! We are you! We are part of your community, and you are part of ours, so stop making us so special that we can’t break bread together! So that was the initial impetus for writing Life With Jessie.

I got signed on for about 4 pieces, but the response was so overwhelming, we continued until Gzowski stepped down from the show. It was a good time, and I thank Gzowski, and his producer and right-hand brain—Shelley Ambrose, for the opportunity to marry two of my loves: Jessie and writing. 

For 31 for 21 (the blogging celebration of Down syndrome, hosted by Michelle over at BlueberryEyes, with more than 100 bloggers all blogging every day for the month of October) I will be posting the whole  series (11 episodes) on the weekends., starting … you guessed it! At the beginning. So here is 

Life With Jessie 1: In the Beginning

“Who does she look like?” the nurse asked as she placed this scrunched up bundle of life into my open and waiting arms. “Dr. Sim” I joked, referring to my Asian obstetrician who was impishly grinning at me through my legs.

Dan laughed, for the first time since we had entered the hospital, since I had entered labour. He reached out to hold Jessie, but I couldn’t let her go. I wanted to touch and kiss every part of her body. I pulled him to us and we grinned and laughed and put our arms around each other.

“This,” I said, “is the most incredible thing in the world. This is amazing . . .  its incredible  . . . no, I said that already. . . “ Dan was peering into Jessie’s face. “Hey, she does kind of look like you Dr. Sim,” he joked, “Do all your babies look like you?”

We laughed. Jessie had Dan’s mother’s wide cheek bones and his sister’s almond-shaped eyes, or maybe that was my mouth, or perhaps . . .  We gazed and exclaimed and hugged each other and protested when she was taken away to be weighed and then hugged some more.

The next morning, as Dan was finishing the jubulous phone calls to friends and relatives, a strange doctor walked into the room. She slowly pulled the white curtain around my bed and stood there silently, waiting for Dan to finish talking on the phone. My whole body stiffened when I saw her. I tugged on Dan’s arm, then pulled the receiver out of his hand and hung up the phone. He turned and stopped when he saw her standing there.

“There is something wrong . . . “ I said, hoping that if I said it, it wouldn’t be true.

“Yes,” she said, “we think your daughter has Down syndrome.”

She continued to tell us that there might be some problem with her heart, that she would be developmentally delayed, that we could expect her to have the I.Q. of a five year old, although it was hard to tell. She emphasized that it was not our fault. It was nothing we had done,  just a sort of genetic roulette and Jessie had drawn an extra chromosome. She said many other things that I don’t remember.

I do remember the soft folds in the white curtain that surrounded my bed, the shuffle of slippered feet, the clipboard the doctor held in front of her as the words came out of her mouth and bounced around the room in a kind of random soundscape. I tried so hard to focus on the information she was giving us, on asking an intelligent question, on not tearing the sheets off my body and wailing loudly into the echo of that hospital.

I willed my body to stay still and clenched each muscle. “Just relax,” she said, “get used to the idea.” But it’s not an idea. It’s a life. A tiny newborn, an unprepared couple, a wrenching feeling that tears at your insides that you can’t let out because there are three other women cooing over their healthy babies right there beside you.

“I want to see her.” It was a statement, not a question. I needed to hold her, to look into her eyes, to feel her heartbeat, touch the soft spot on the top of her head.

“You can go and get her now. We have a few tests we might need to do, but we’ll move you into a private room.”

I was grateful. I didn’t want to see anybody, have anybody see me. Dan was silent and shaking. “Are you sure we should go see her?” he whispered? “Yes.”

I pulled Dan to the nursery, and then stopped. It was a sea of plexiglas bassinettes filled with newborns. Having just given birth with sweat and tears and ecstasy to this new life, I was sure I would recognize her as soon as I saw her. But in that ocean of swaddled babies I had to look at the little pink and blue nametags and find the one attached to “Baby Huggett.”

She was sleeping. She was beautiful and tiny and peaceful. All six pounds of her. I expected her to somehow look different, but the only difference was that the tiny wisps of hair that had stuck to her head after birth had dried into a reddish blonde halo and she didn’t seem as scrunched up and red. Dan and I held hands tightly, a river of questions and fears flowing between us. This was our daughter Jessie.

We had decided long before the actual birth that if it was a girl we would name her Jessie after my grandmother—a strong and intelligent woman. When she found out that Jessie had Down syndrome, she called to say that she was honoured to share her name and hoped that in doing so, she would also be able to share her strength.

Others asked if we were still going to name her Jessie. As if when we found out that she had Down syndrome we would change her name to something more appropriate—like what? I mean, what is more appropriate for a child with Down syndrome? A less valued name? A name that would reflect her I.Q.?

In the days to come, the most precious people were those who saw Jessie as a baby. Our friend Polly who walked softly into the room and asked if she could hold Jessie and looked into her eyes and cried—not because Jessie had Down syndrome, but because she was a tiny beautiful baby. Kim and Aydin who sent flowers. Flowers that I nursed for a long time because we didn’t get many flowers. They must have had a huge “stop order” at the florists when people found out that Jessie had Down syndrome, thinking that flowers might not be appropriate. Let me be perfectly clear on this point. Flowers are appropriate. I hated peeking into other mother’s rooms and coveting not only their perfectly healthy babies, but their profusion of flowers and balloons.

People did make other insensitive and downright stupid comments. Comments that shocked me into silence because I was not yet used to people’s reaction to difference. “Are you going to keep her?” As if this precious life were something we could kind of drop off at the dog pound on our way home from the hospital. “Keeping” Jessie was not an issue, not even a question. I loved her from the moment she tumbled out of my womb and while there were many things I didn’t know as we stood there peering at this swaddled life in a plexiglass bassinette, I knew, with a certainty and clarity I had never felt before, that I would fight with every breath left in my body for her life.