An Ode to my Son on the Eve of your First Birthday by Kim Reid

Third (and final!) Chapter. A year ago today I was wishing I hadn’t waited so long. I was regretting my foolish pride, and the idea that I knew enough about labour to know when I was in the thick of it. I cried in the driveway, saying goodbye to your brothers, and falling into your Daddy’s arms, worrying that, against my midwives’ requests, that I would be delivering a baby on the side of the highway in the middle of winter. Your Auntie Sam and Nana promised me we would make it, and they were right. We JUST made it.

Minutes after arriving I was in a gown, and they were calling for backup and asking me not to push. But you, my sweet prince, were not going to wait for anyone. You knew where you were headed, and were ready to get there. Mere minutes after arriving on the maternity ward, the midwives placed you in my arms for the first time, and all was right in the world. You were our biggest little bundle, all blotchy and swollen, and I stared at you for hours, soaking in every crease and wrinkle on your sweet face. You have hands like Papa, bear paws, which even as a newborn looked so strong and secure. I was in awe of your strength the first time you reached out and grabbed my finger, strength that I still admire everyday as you continue to move mountains. Our people were there within minutes to shower you with hugs and marvel in your glory. Your brothers kissed your soft cheeks and wanted to be the first to hold you, sing to you, and show you their Spiderman toys. They loved you the minute they saw you, and have promised more times than I could count that they will protect you, support you, and love you forever.

Our first day home, I laid in bed with my four boys and cried. Hormones and fears took over my emotions, and as if he could read my mind, Henry said “he’s just so perfect, Mom, I can’t believe that he’s our baby”. And for a brief, but tremendously powerful moment, I knew that he was right. Those words echoed in my head while I stared at your sweet little face, in awe of your beauty, and filled with wonder about how you looked so different than your brothers in their first days. I spent hours laying in bed, inspecting every inch of you, tiny curved pinkies, adorable gaps between your toes, and long and defined creases across your little palms. And finally I said the words out loud, and then a midwife said them out loud, and then a doctor, and then they became a part of us. A part of us that first brought fear of the unknown, but now brings great pride and joy.

We were passengers on a roller coaster of emotions for the next few weeks, but through it all, we held you tight, watched you grow, and felt our tribe welcome us in with open arms and open hearts. I felt comfort watching your brothers hug and kiss and entertain you; I felt excited listened to Papa telling you about boat rides at the cottage and how you could sit on his knee and take a turn being the captain. I felt at peace when tears slid down my cheeks after coming home from the grocery store and seeing you sleeping peacefully on Nana’s chest while she read, or hearing Daddy singing you James Taylor from across the room. These moments, all of these moments and so many more, reminded me that we were exactly where we were meant to be, and who we were meant to be. Life with three under five can be crazy, and we had good days and tough ones. We got busy; birthday season was upon us, the days felt long, but the weeks short, and then before we knew it, spring had sprung and we were able to get outside and feel the light upon our faces again. It felt warm and familiar, and reminded us how lucky we are to have three beautiful boys to share our life with.

You, my sweet Duncan, were the perfect baby. You slept, you nursed, you smiled your sweet and infectious smile, you babbled, and you made the world, our world, fall in love with you. The past year has been the best of my life because you and your amazing brothers were in it; because now our family is complete, and because I could not have asked for a sweeter, happier, or kinder soul to share our lives with. You are easy to love, and impossible to forget. You touch the lives of those around us with your cheerful smile that shines so bright it lights up a room, and so warm it makes me feel like I could hug you forever and it would never be enough. Thank you for reaching out for me when I enter a room, I’ll never get over how amazing it is to feel your love. Thank you for smiling your biggest smile when Daddy, or your brothers, or Atti, or Izzy do something silly. Thank you for amazing us every day with your strength and determination. Thank you for cuddling into my shoulder and rubbing your cheeks against mine, and thank you for your sweet slobbery kisses. Thank you for loving books the way I do, and for loving music like Daddy does. Thank you for hugging your brothers when they need it, no one brings them comfort and makes them happy the way you do. Thank you for making me feel complete. Thank you for choosing us. Dunc, you are special. You are brave. You are strong. You are wonderful. You make us so proud. And I love you today, tomorrow, and forever with all my heart.

Kim Reid is a mother of boys, lover of learning, happiness enthusiast, and proud member of the Down syndrome community (our sweet baby boy, number 3/3 has T21). Our boys keep our hearts, our schedules and our laundry hampers full, and continuously inspire us to run fast enough to keep up, while living slow enough to appreciate the beauty in the little things.

Expectations by Karen Ellis Kendel

It’s funny how as parents we initially expect that our children will be perfect, despite knowing deep inside that we all have our flaws. I remember being heartbroken when my first “perfect” child was found to be quite farsighted at the age of two, and was prescribed glasses. I worried he would be bullied at school (many years into the future at that point!), that he would have difficulties playing sports, that he would have a hard time managing them at such a young age. In fact, he did fine – has never lost or broken them – is astoundingly athletic, and universally well-liked at school.

I remember being shaken when my second “perfect” child experienced an anaphylactic reaction to tree nuts at eighteen months, and needed to have an epi-pen in close proximity from that point onwards. My new worries involved trusting that anyone I left him with would have an adequate understanding of his life-threatening condition, and the knowledge of how to save his life should he inadvertently ingest a food containing hidden nuts. This took birthday party stress to a whole new level!

However, unexpected differences in my third “perfect” child were discovered before she was even born. When the midwife called two hours after our twenty-week ultrasound, I sensed something was off. This hadn’t happened in either of my previous pregnancies. She explained that they had noticed a couple ‘soft markers’ for Down syndrome, and referred us to a genetic counselor immediately. We decided on the non-invasive prenatal test (NIPT), only recently covered by OHIP, involving just a blood sample. This NIPT came back a week later from lab analysis in California showing a 99% chance our baby had Down syndrome. This news hit us hard. We didn’t have much personal knowledge of the condition, only general stereotypes that we came to discover were outdated. I was a physical therapist by training and had worked with many people with various disabilities, but only one of my clients had Down syndrome, and he had been a wheelchair-bound man in his fifties with severe leg deformities and a very poor quality of life.

The old-school Geneticist we subsequently saw was not very reassuring – presenting a lot of worst-case scenarios; a ‘doom and gloom’ approach. The option of terminating the pregnancy was floated around by various professionals, as if this unborn child did not deserve a chance at life, despite our firm responses that we *wanted* our child. That being said, we certainly grieved the “perfect” child we had been expecting. Then we picked ourselves up and started researching, reading, and reaching out to our local Down syndrome association. The new parent coordinators immediately showed up with their smiles and warm words of congratulations, and helpful, accurate materials. We could already see that a brighter future was possible than the dark picture painted by that first doctor. We took tentative steps towards connecting with this new community and felt supported.

One serendipitous encounter happened while walking home from dropping off our first-born at Junior Kindergarten, where he had started only a few weeks prior. The prenatal diagnosis of Down syndrome was fresh, and I was still coming to terms with it. Another mom was also returning home from JK drop-off, pushing a stroller with a sleeping babe. We started chatting, and this mom – Sarah – shared they had just moved to the neighbourhood, after a prolonged hospital stay with their new son after his birth. I had recently read that newborns with Down syndrome frequently have complications necessitating hospital stays, and so I tried to commiserate, telling her that I was six months pregnant with a baby who would be born with Down syndrome, and so might have a long hospital stay in my future as well.

She stopped in her tracks, looked at me, and told me that her son also had Down syndrome.

I had no idea. I was honestly just “practicing” sharing my news with people, and as a stranger, Sarah somehow seemed easier to tell than a family member! It was such a profound moment; we both felt goosebumps. Needless to say, knowing another mom in my immediate community who was only a few months further down this journey provided immense comfort, both then and now.

Of course, the journey is never smooth. At thirty-three weeks into the pregnancy, the right side of my face slowly became paralyzed over the course of an evening. We rushed to the ER, fearing a stroke, and in time learned it was “only” Bell’s Palsy. Unfortunately it didn’t resolve as quickly as it usually does – my body was more concerned with other pressing matters, like growing/birthing/feeding a baby! And so I experienced what it was like to have a face that looked “different”, to have people stare, wonder, question. To have difficulties talking, eating, tasting, hearing. Part of me wondered if this was somehow preparing me to be able to empathize with my daughter’s future experiences. We are such visual beings who value our appearance more than we might like to admit. Another part of me was secretly scared that my new babe would not learn to smile properly, as she wouldn’t see a “proper” example on her mother’s face… or that my children might somehow be embarrassed by my twisted mouth. The strong steroid and anti-viral drugs the neurologist prescribed, and that I took while pregnant against my better judgement, turned out to be of no use. Various other therapies I tried (acupuncture, osteopathy, essential oils) were no better. My face remained completely flaccid for four months, and recovery came only in tiny increments thereafter. More than four years later I still can’t properly smile, but at least I can blink again;)

Our daughter Kaitlyn arrived at full term, a healthy 7 lb. 13 oz., screaming her way into the world. My midwives were amazing, one even going above and beyond by coming in during her vacation time to be present for the birth. The on-call paediatrician examined her, and couldn’t think of any reason to keep us in hospital, and so said, “I guess you should at least stay for 24 hours”. This was significantly longer than we had stayed for our previous births attended by midwives, but given the circumstances, we were thankful. It allowed time to have an echocardiogram done, which showed only a minor Atrial Septal Defect, which had no clinical symptoms or relevance. We had the healthy baby we had prayed for.

One thing that had been worrying me towards the end of the pregnancy was Kaitlyn’s ability to nurse. Breastfeeding was very important to me, and I had read in several places that newborns with Down syndrome had a more difficult time with this due to generalized low muscle tone, along with altered oral structure (a narrow, high palate, for example) and general drowsiness in the early days. My first two children had been exclusively breastfed, and in fact, my second son had continued to nurse all through Kaitlyn’s pregnancy, despite the usual dip in supply. In hindsight, I believe this was a gift to Kaitlyn as tandem nursing them both during her early life meant he did the work of bringing in the milk, ensuring adequate supply despite her weak latch, and allowing her to grow and thrive during those crucial first days and months. She became a stellar nurser – a beautiful chubby baby. It turned out that I had nothing to worry about at all. This was only my first example of how, with a little support, she could blow preconceived notions out of the water.

In the early days, I remember reading a book about parenting a child with Down syndrome that advised teaching your child to read before entering the school system, so the teachers would be presented with clear evidence that your child could learn, and then would approach them with greater respect. While this all sounded grand, I really doubted that I would be able to do this. After all, I felt like I was barely keeping my head above water while taking care of three young children. My previous two typical kids were reasonably bright and had only learned to read at the relatively early age of four while in Junior Kindergarten, not beforehand. How was I going to find time to be able to teach my preschooler with Down syndrome to read, or even have the knowledge of how to do this? Well, once again, with some unexpected support, my daughter again blew past my expectations. Around the time Kaitlyn turned two, my own mother uncovered a dusty box of flash cards in her basement that she had used with me when I was a toddler. She sent them my way, and I decided to try a modified version of the Glen Doman method that my mom used with me – just a few minutes a day, a few words at a time. It turned out that Kaitlyn loved learning words on flash cards, and after only a few sessions could accurately either sign or say the word I showed her. In a few short months her word count was into the hundreds. I first noticed her spontaneously reading her simple board books out loud when she was only three, and now at four she loves reading more complex stories. We have yet to see how this will translate into more respect in the school system when she starts this coming fall, but I believe that it will open up pathways for her. My hope is that she will continue to inspire all of us to aim higher, and achieve beyond our wildest dreams.

Karen Kendel worked as a physiotherapist before focusing on raising her three children. She currently lives in Milton, Ontario.

What my Kids Crave the Most

A father bemoans the inequities of the Easter bunny’s delivery of bounty on Facebook. “Please parents,” he pleads, “can we just stick to chocolate and candies this year? So I don’t have to tell my kid why the Easter bunny brought his classmate a bike, and my kid only got chocolate.”

Aside: this post is in no way meant to undermine the religious underpinnings of the Easter holiday, but rather I’m focusing on its commercialization. On the pressure each holiday brings to buy my kids stuff.

I’m a person who loves celebrating special occasions, but what I don’t love is the pressure to buy into all the paraphernalia and trappings associated with each holiday. Well, I do and I don’t. Items that can be reused year after year are wonderful. When it comes to getting new stuff, I liked getting gifts as a child (and arguably, I still do), but as an adult I find it tedious work buying trinkets at best, and at worst: wasteful, unhealthy, and extreme. Spoiling our children to the max on special occasions borders on harmful not only for our bank accounts and the environment, but in what it’s teaching them to value. Let’s face it: an abundance of junk is overstimulating for children and underappreciated, even if that junk has a hundred dollar price tag on it. Even if it doesn’t cost an arm and a leg, too much is still too much. This is the trap I fall into: it’s cheap, so it’s okay for me to buy more of it. Take candy, for example. It’s easy enough to come across, but kids are going to get sick from eating too much of it – or cavities, or obese, or form life-long habits leading to an unhealthy lifestyle. Note: I said too much candy. I’m definitely not against some. If it’s too many toys, consider this. A toddler is more likely to play with a toy if they only have a choice or two or three in front of them, versus say, twenty. At twenty, the toddler walks away, overwhelmed. There is research to back this up: less is more.

Yet, season after season, I’m still out there, curating content to fill the stockings to bursting, ordering that last gift online to fill every nook and cranny under the tree because sometimes I get tied up in the myth that to show my kids I love them, I need to buy them stuff; and that if my love for them is superior, then so too should the gifts I provide for them. I’m guilty of perpetuating another myth of materialism – that it brings happiness – times a thousand. I buy enough chocolate eggs to feed a small army because these are the traditions I grew up with. I learned to associate more stuff with more fun! Because who doesn’t like getting more stuff? Especially as a kid who is entirely dependent on the adults in their life to buy them things. Precious, precious things! Like Seuss’s Once-lers’ thneed that everyone, everyone, everyone needs (note: no they don’t). Stuff, for the sake of stuff.

The Easter bunny visited our three girls. While we encouraged Ariel to write a letter to let the Easter bunny know her wishes as she bombarded us with requests, we were quick to remind her to keep her expectations in check.

“The Easter bunny isn’t like Santa,” I told her, “he doesn’t bring presents.” She nodded her head solemnly, but I know that’s not what she was expecting or hoping for because in the past, the Easter bunny has brought the occasional present. I don’t think there’s anything wrong with this, per se, except that my kids don’t need any more presents or toys, and you know what, they are happy, completely joyful, living with less of the things they don’t need.

Come Easter morning, on her way down the stairs, almost three-year-old Penelope picked up four hidden chocolate golden coins. She was so happy, she ran all the way back upstairs and climbed into bed to show me. “My gosh!” she was saying, “My gosh!” she couldn’t believe her luck, and she hadn’t even seen the baskets of candy downstairs yet; she didn’t even know about the egg hunt ready to go. Dan and I were thrilled for her, mustering up our best excited faces in response to her appreciation for the mundane in the early hours of the morning. Her glee turned my reaction into real and true enthusiasm. Her innocence left me feeling hopeful and inspired. If our version of Easter had ended right there for Penelope, it would have been a fantastic day.

In lieu of the toys a part of me wants to give my kids on Easter morning, I’ve taken up a practice my parents carried out for us in our teen years, the giving of essentials as gifts. Yes, there were chocolates and candies, but in addition each girl was given a new pair of shoes – and this is the important part – that she already needed, as well as a small stack of clothes for summer: a few t-shirts, a dress, or pair of denim shorts. Simple and practical. In a less than proud moment, I caved and got each girl a new stuffed animal too (of which they have dozens), but maybe we can overlook that and move on to how my children received their gifts.

The girls were overjoyed. Elyse especially gravitated right to her new rubber rain boots and held them up proudly in the air. She reached for the boots before even the chocolate in plain sight. “Look at these, mommy and daddy!” She needed new rain boots and I could sense she appreciated having that need fulfilled. Penelope walked excitedly around the house in her new runners, and wanted to test them outside, and Ariel was thrilled to receive her first pair or lace-up shoes. If tying laces doesn’t make you feel like a big kid, I don’t know what does. I spent a few minutes teaching her how to tie a bow, and she was off and running with a new skill. Each child played with their one new toy, the stuffed animal. Each child devoured copious amounts of chocolate. We all searched for eggs, which were then divided equally, and the kids had a really fun time, we all did.

What stuck out to me was the kids’ reaction to their new clothes and shoes. If it were any other day, they would be excited to receive new clothes, true, but it isn’t cause for celebration. Our kids are very lucky in that whatever they need, we are able to buy it for them. As childhood is such a transient time, each season generally warrants a new mini wardrobe. With three girls, we certainly do the hand-me-down thing, and also accept used clothing in good condition from friends, but even still, they get spoiled with new purchases. It’s so easy for them to take these purchases made on their behalf for granted; how could you not when they seemingly happen every season? By giving them items they need for summer, it was a statement: this is a special occasion, and receiving new clothing is a gift and something to be thankful for. And the girls were grateful because you know what? This clothing came from the Easter bunny! So it must be special.

Giving your children clothing on special occasions isn’t going to erase inequalities between families, but it is sending them the message they have many things to be grateful for and that it isn’t toys that make the holiday fun anyway – it’s family. Spending the time together, watching the girls’ reaction to their Easter baskets and their detective skills in the Easter egg hunt, made my morning.

What the girls actually receive means less than the traditions we are building as a family: decorating Easter eggs, the egg hunt, and a large bacon and egg breakfast Easter morning. The time we pour into our children, into each other, that is what counts.

As moms and parents, we put a lot of pressure on ourselves to get it just right, but my kids cared more about my willingness to engage in their games – my enthusiasm about their Easter treasures – then the actual treasures themselves. They were looking to me and Dan to gauge their own excitement. Well, except the chocolate. Sugar is sugar, and they’ve got that one figured out.

The best thing then, that you could ever give your child on Easter morning, or any day of the week, is your love and attention. Forget about toys and sugar, love and attention is what they crave the most.

Raisin’ Hell

At some point in adulthood, everyone needs a toddler in their life. Those belligerent little darlings. The things they say. The things they do. The mirror they offer into our own idiosyncrasies. This fleeting time of inane obstinacy. Defiance for the sake of defiance. Toddlers are, after all, miniature human beings learning how to regulate their emotions. One minute they’re up, the next they’re throwing a tantrum and crying hysterically, before tears dissolve into giggles – they were down, but now they’re up again! – at the sight of something as plain as a hat, or a sister, or a fluffy bunny rabbit you’ve made to hop up and down. Silliness reigns in the world of the toddler, as does autonomy of self. What begins as an “I do it” during the second year becomes a full on challenge of who exactly is the boss around here and what are the boundaries, if such a trivial thing as boundaries even exists, anyway.

Toddlers like to try on phrases and ask questions that make you blush or burst out laughing. Case in point, on our way to Sunday dinner at Dan’s parents’ house, Dan and I were engaged in a serious conversation about our jobs, our futures – real adult stuff – when Penelope pipped up from the back seat in her sweet little voice, “Daddy! Are you wearing pants?” She was genuinely concerned, so he assured her he was.

For the record, Dan normally wears pants, and there had been no aforementioned pants conversation that either one of us was aware of. Who knows what’s going on in that exploding synaptic toddler mind of hers? Pants or no pants? That is the question. I guess, in fairness to Penelope, Sandra Boynton characters are constantly putting clothes on the wrong body parts, or not at all, and these are the books we read to our children, the half-naked animal role models we portray, so of course she’s confused. Dan asked her back, “Are you wearing pants?” Her “yes” was confident in reply, and you could tell there was a satisfaction in knowing that she and her daddy had both got it right: pants for Sunday dinner, check!

Toddlerhood is also a unique time period in our lives where we seem to have a beautiful and simplistic window onto the world, because you see, the toddler sees things as they are; each new specimen of life (living or not) is a novel delight to their nascent senses. Second case in point, while changing her diaper, Penelope exclaimed, “Look at this, mommy!” holding up a piece of yellow Play-dough she’d be moulding in her hand, “this is beautiful!” and she stretched out the word beautiful, as though marvelling at its syllables as well.

Later, while bathing, and though I was downstairs clearing the dishes, and she was up with her dad, I could still hear her excitement, “Hey! I made bubbles with my bum!” Ariel, her seven-year-old sister, deeply appreciated this comment.

There is the trying on of words and phrases, and a great appreciation for an ever expanding world, and then there are the lived experiences; especially those you’d rather forget, like closing a finger in a doorway or falling off a stool or bothering someone bigger than you and getting bopped on the head for it. These hard won insights, also known as “learning the hard way”, are frequent during the toddler years. Maybe that’s why these are the years we mostly, if not completely, forget – in the name of self-preservation? Though surely, we retain the muscle memory of our falls, the sensory experience of burning fingers that time we took our mittens off in the cold; or the taste of chalky earth, the sting of soapy bubbles in our eyes. These memories come early and stay with us, I’m sure of it, even if we don’t completely learn or want to unlearn how to avoid them.

A memory I will certainly keep with me forever from Penelope’s toddlerhood years, in addition to her pleasant disposition, affable personality, our hikes in the woods, library time and gymnastics classes together, will be the time she shoved a raisin up her nose just to see what would happen.

I was driving along, completely ignoring my children in truth, as all good mothers do, and listening to an audiobook at that, (Girl, Stop Apologizing – I’m not!) when I heard a sob from the back seat. A quick look in the review mirror revealed Penelope was distressed.

“Ow, ow, OW!!!!” she wailed.

“Penelope! Penelope! What’s ‘ow’? What hurts? What’s the matter?”

I gave her a lunch box of snacks to keep her entertained. I shouldn’t be getting disturbed right now, but I’m feeling less annoyed, more concerned as her distress is genuine.

“Right here!” points to nose, “the raisin!”

“What!? Did you put a raisin up your nose? Is there a raisin up your nose!?”

“Yes! There’s a raisin up my nose right here.” Wail, wail.

Now, I have to tell you. I’m grateful for this kid’s competent verbal skills. I’m less impressed with her research methods.

“Okay, don’t worry! Mommy will get it out,” I say out loud. Inside, I’m saying what the fuck am I supposed to do now?

I decide I need to assess the situation and so I pull over into a Tim Horton’s parking lot. Thank god for Tim Horton’s everywhere. I tilt her head back and can see the raisin, barely. She’s stopped crying, and I stick my finger in to try to get it out, and it’s immediately evident this is a rookie mistake that will accomplish nothing. Think Adelle, think. I call Dan. He doesn’t answer. I text him, EMERGENCY, ANSWER CALL. He picks up this time. I let him know it’s not really an EMERGENCY emergency, more of an inevitable emergency if I don’t do something quick.

I have two children in the car with me. We were en route to one of Elyse’s appointments when the wrinkled fruit and Penelope became one.

Dan has no good ideas and is as perplexed as me. He suggests going to the appointment and asking if they have tweezers. Being the parent not directly responsible for the raisin kid, he, appropriately – not too flagrantly – finds the situation funny. I hang up with a new action plan in mind. I WILL make it to the appointment, but first we will stop at a pharmacy, buy tweezers, and extract a mucousy raisin.

I don’t need to tell you I got the raisin out, though I did, with some tears and much protestation on the part of my toddler. What I do need to tell you is more of a question: is this going to happen again? Or will she have learned her lesson? Will I ever feel comfortable putting raisins in her lunch pail for her to snack on again? Only time will tell and perhaps none of us will ever understand the intricacies and mysterious ways of the toddler.

On our stroller walk to pick up her sisters later that day, I offered Penelope a snack. She took it, then didn’t want it, then ADAMANTLY demanded it back, then refused it again a short while later, as though insulted I would ever have given it to her. I couldn’t help myself, “Penelope, you crack me up!” I could tell she liked that line, and was mulling over its meaning.

“No,” she said, “you crack ME up!”

Whatever you say, Penelope. Whatever you say.

Everyone has a Beauty

My friend Emily and I spoke to 500 elementary school students today in grades four to eight. That’s at least five hundred more kids that got to see what a person with Down syndrome can do. We weren’t able to fit in the whole student body due to time and space constraints, but after our talk, which went well, we had a few extra minutes to visit with the kindergarten students and show off Emily’s Olympic medals.

Three kindergarten classes were smushed into one, and while the kids fidgeted in their seats, I introduced myself, and told them a little about our talk with the older grades and why we were visiting the school. Emily stood beside me, adorned in her red and white Team Canada rhythmic gymnastics suit with the rhinestones, looking glittery, fit and fantastic. She showed off a few of her moves with the ball and clubs, and then it was time for questions. Predictably – if you know kindergarteners – once one child asked the question, “I like your outfit,” several more kids tuned in with the same question, which was endearing and Emily gave each one of them her undivided attention.

Their questions aside, the moment that struck me as enduring came in the aftermath of our act. At the moment I turned my back, a little boy came up to Emily and said, “You look beautiful.” Just like that. I turned to see his earnest face, and suddenly feeling bashful with what he’d said and my eyes on him, he ran back to his seat. Emily took it in stride; she’s used to this kind of adoration and attention being a special Olympic athlete, I imagine, but I’m still processing the remark.

What struck me are two things: one, that old adage, “Beauty is in the eye of the beholder.” That little boy had every right to tell Emily she was beautiful, because you could tell, in that moment, the way he saw her, she absolutely was.

And two, a lesser known adage perhaps, but one that I heard spoken at the World Down Syndrome Congress in India several years ago that has left a profound impact on me is that “Everyone has a beauty.”

Everyone has a beauty. Everybody.

Sometimes you just have to help others to see it.

Waiting for a Snowflake to land on my Tongue – by Jennifer Crowson

One of the first things I read when learning about having a child with Down syndrome was that he will do everything other children do, it will just take him longer. This was fine, or so I thought… but it was hard to avoid all the expectations of what your baby ‘should’ be doing and when. In our society, we are surrounded by developmental charts, by well-meaning family members, friends and strangers asking about what your child is doing now in comparison to a child they know of a similar age, and by websites reminding us where our children ‘should’ be at developmentally. I have always been the kind of person who likes things to be orderly and happen when they are supposed to, but my son Owen and a bright little girl have taught me the importance of patience.

When my son was four and half months old, I took him to baby massage class. Other mums surrounded me with their little ones aged three to six months. All of these lovely babies were smiling and giggling, some were sitting up and all were holding their heads up. My little Owen was doing none of these things. When we did tummy time to rub their backs, his little face was buried in the blanket and I could sense his frustration that he could not get his head up – and I am sure he could sense mine. I found myself comparing Owen to his peers, knowing this was not fair to Owen or myself. I left the class feeling deflated and did not return.

Then one day, just by chance, a girl of no more than six years old taught a good friend and me an invaluable lesson.

I was feeling a little frustrated and quite honestly sad. I wanted my Owen to smile, to giggle and to hold his head up, like other babies do. In my head, I knew this was the wrong way to think – but it was hard to avoid the way I felt in my heart. I went to pick up my older son from school and was standing in the playground talking to my friend who also has a baby with Down syndrome.

It was one of those beautiful wintery days with large snowflakes falling from the sky. We were talking about how we both needed to patient with our babies and things would happen – the smiles and giggles would come; they would sit, they would walk, they would run… we just needed to wait longer.

A young girl was clearly listening to us, as she calmly looked at us and said, “I know the meaning of patience. You have to wait and wait… and if you do….” With the most wonderful smile she beamed, “That snowflake will fall on your tongue”. She stopped me in my tracks. What a simple yet clever and insightful statement. She was right – we needed to be patient and those wonderful moments would come.

Owen turns one in two weeks. He now has the most beautiful smile, an infectious giggle, holds his head up proudly, he reaches for toys and is almost sitting on his own. With each new achievement, I think of the lesson that clever little girl taught my friend and I in the school playground – be patient and allow yourself to experience each spectacular joy that will come, when ‘a snowflake lands on your tongue!’

Jennifer Crowson is Chair of the Down Syndrome Association of Hamilton. She currently lives in Dundas, Ontario, with her husband and three boys.

What’s Your Story?

I was going to write a blog about blogging, and that blog may or may not have included the list of ideas for blog posts this week running through my head. One such tentative post idea I titled Tri-ing. That title surfaced in my stream of consciousness on Saturday morning as I suffered through my swim. I’ve thought about writing a post about swim training since the elderly man with trim features, who’s always at the pool, said to me, “Wow. You must have A LOT of energy.” I wasn’t sure how to take that: was it a compliment, that my swimming looks robust, full of life? Or a disparaging remark, along the lines of, “I don’t know HOW you swim that many laps in such poor form, being so inefficient.” I’ve chosen to take it as a compliment, and so we can move on.

Then came the idea during lunch out with a friend. This friend is also a cherished colleague and skilled copy editor. She has copy edited my manuscript and will be working with me on a few other projects as well as we grow our careers together, and she brought up “segue”, which I incorrectly spelled “segue way” in another blog post, despite having looked it up. I hadn’t outright asked for her input, but I was more than glad that she told me. Prior to the lunch, my friend had conferred with her husband before bringing the misspelling up with me. Her husband told her explicitly NOT to bring it up with me over lunch, but it was eating away at her. He made her promise. We had a good laugh over that. Then I told her I might have to write a blog post called “segue”, and she shook her head vehemently, and we laughed again, “oh no, no, no!” she said waving her hands, shaking her head in an emphatic no. My friend wouldn’t appreciate the attention, so I won’t do that. Which is a perfect segue into this next bit. The master idea that has floated to the top of this week’s pile (because that IS how you write a blog post!) The role of stories in our life, and a project, Common Threads.

When I say “Common Threads” I want you to think about chromosomes, which are threadlike structures, and the common humanity that unites us all. In a nut shell, Common Threads is a collaborative project, a place for families and individuals with Down syndrome to share their stories that I’ve started through my website. Our stories, and the stories we tell ourselves in our head, define us. When we know each other’s stories, we’re much more likely to feel compassion and understanding for each other. As author/photographer Peter Forbes puts it, “Stories create community, enable us to see through the eyes of other people, and open us to the claims of others.”
When I found out I was carrying a child with Down syndrome, it was words and stories that would mend my heart. It was memoir after memoir that allowed me to process my grief over a loss of normalcy, that showed me I wasn’t alone, and where I was able to challenge my own misperceptions and preconceived notions. I was on a journey: adrift in the sea of my mind, paddling furiously to the island of my heart. “So it is,” wrote Jean Vanier, “that people with intellectual disabilities led me from a serious world into a world of celebration, presence, and laughter: the world of the heart.” Words and stories were the current that took me there, that deepened my understanding of the importance each individual brings to the world.

In truth, today’s blog is mostly a plug for Common Threads! If you have a child with Down syndrome, or YOU have Down syndrome or a sibling or other family member with Down syndrome, and you are Canadian, I hope you will consider submitting your story here. Anyone and everyone can subscribe to Common Threads, to read the stories, or if you don’t want to know when new stories are posted, just pop your head in every once in a while and see what’s going on. At the very least, I hope you will read the stories, which you will see posted in the coming weeks and months, and share them with a friend who may need to read them. In case you haven’t already clicked on one of the casually inserted links above, you can read more about the Common Threads project here.

“There is no greater power on this earth than story,” wrote author Libba Bray. What’s yours?

Superbaby – by Dan Purdham

Okay, I caved and did it.

Why am I writing an entry for Adelle? Well, first, when we started out on this journey, my sister suggested I make a guest appearance on Adelle’s blog. I initially balked at this idea, but now think it is not such a bad one. Second, I think some others that are out there wonder what it is like for the parent who is not the one who is at increased risk, and because of the physically obvious nature of being pregnant, carrying the burden of telling people why you are off work “already” and how everything is all the time. Lastly, because here in Canada, November 1-7 is National Down Syndrome Awareness Week. While it looks like we may be having our baby in the very near future, Adelle has decided she doesn’t want to put pressure on herself to blog each day, but at least we can get a good start to the week and have a post ready (For those of you on Twitter, @CdnDownSyndrome, #SeeTheAbility).

So what has it been like?

When we first found out that our baby girl was going to be born with Down syndrome, of course I was shocked—that appointment with the genetic counselor/high-risk OB/GYN and eventually the social worker was one of the longest, most exhausting days of my life. I will never forget it, but I can hardly remember any of it. As the tornado of information whipped through my brain I found myself getting way ahead, “school, university, independent living” were all in the forefront of my mind, and I also worried about how this would affect Ariel. Thoughts raced through and were gone in seconds until the social worker slowed us down. She told us to focus on the baby and take it day by day. Wisdom that has served us well ever since.

Forty-seven chromosomes. A superbaby—awesome!

Adopting this attitude was imperative early on; we needed to come together to embrace what all this would mean for us, for our family. I have to say, adopting a positive attitude is a lot easier when you are married to Adelle. She lives her life with intensity, a subject I tease her about regularly, but it’s an intensity you get caught up in and it is wonderful. Did she cry a little? Yes. Did she have doubts? Sure. But I never doubted her for a second; I knew right from that first appointment, that I was married to the most perfect candidate for the job. So my life has been a lot simpler.

So life went on, with our healthy superbaby baking in the oven. Not being pregnant, it was not always top of mind for me as I carried on my daily life. Commuting, working, playing with Ariel, was all the same for me; life went on. I think that actually helped me too. Life did go on. As we started sharing our news with people everything began to feel a lot more real. At first it was a little hard telling people, but it got easier. I think what made it hard was that you don’t know what kind of reaction you expect or want so there is always the possibility of being disappointed. That never happened; everyone was very supportive and caring. And importantly, our healthy baby was going to be born with Down syndrome, but that was okay, she was healthy.

Until she wasn’t. Which was the news we received at our next appointment. The presence of the “double bubble” was something we were aware could happen, but it wasn’t clear what the implications of this were. Amniotic fluid has never been so scary. That appointment was hard. Really hard. It made us very nervous and Adelle decided she was done with work and I agreed, she didn’t need any more to deal with and that was that. Since then, we learned about the surgery our baby would need, met high-risk OBs, and met the neonatologist, more OBs, pediatric surgeons and more OBs. It is not their fault, but it feels like a roller coaster, one appointment things are okay, the next something is not quite right and the monitoring escalates. There is a part of me that can’t wait for this pregnancy to be done, and to meet our little troublemaker, but I know she is better off on the inside, for now.

Down syndrome, but healthy. Needs surgery, but heart looks good. Blood flow restricted, but no signs of stress. Signs of stress, but only some, and some tests look okay. It doesn’t take a high-risk obstetrician to figure out that in the very near future, one of these visits will demand intervention sooner rather than later. Oh, and babies with Down syndrome have a 10 percent stillborn rate. The doctors just throw that out there like it’s some neat fact about a small town USA. Did you know that Battlecreek, Michigan is home to the world’s largest breakfast table? Neat stuff, eh?

Needless to say, our interaction with the staff at McMaster has been wonderful to date and I can’t really complain about much. But that stat was mentioned to us in our first two or three appointments, and was done so casually and never addressed since. And it burns away inside. So yes, I am ready for Adelle to go into labour, even a little early, because I want to meet my superbaby, no matter what.
I am still in the midst of telling many people what our family has been going through the past few months and people often remark that we seem calm and at ease with everything. And we are for the most part. Thanks to Adelle.

So, I am writing this blog for Adelle, who has pushed our family through these tough times. She used her family, friends, and the blogosphere to create a network of support for us and it has been amazing. When we found out our child would be born with Down syndrome and the associated medical problems, many people reached out and told us that we were the perfect parents for the job. I guess they knew her as well as I did, because Adelle is perfect for this; she will educate and inspire all those she comes in contact with and I love her for it.