Today’s guest author is Annie’s Nonno, my dad. I sent him an email asking if he’d see if he could find the time in his busy attorney calendar to sit down and write about Annie. A few hours later, this was in my inbox. Thanks Dad for instilling in all six of your children that family is what really matters and always comes first. And for all the endless memories like the one you’ve written about here. Like Mom always says, it’s amazing that our family is always constantly surrounded by “SO MUCH LOVE.” 

We once watched a meteor shower together on a perfectly dark night in Central Wisconsin. We were perched on the hood of our Chevy Suburban; some of our backs flat against the windshield, the rest against the torsos of those leaning on the glass.  Seven of us huddled in the smallest conceivable space staring at the improbable spectacle that was marking time against the limitless sky. 

It isn’t often that you get everything you want in life, but for an hour, there it was; the juxtaposition of the nucleus of family, condensed and focused, beneath the unbridled fury of the universe.

I remember thinking that it could never get any better than that moment when all that could be said was “ooh, ah”.

When something makes everyone aboard go “ooh, ah “, that’s pretty good … and pretty rare.

So for the next 20 years I would think about that night as the perfect gift. One to which you are entitled just once in your life.

But then here comes Annie; streaking into our lives with unabated and imponderable light.

There’s a perfect picture of her sitting atop the shoulders of her father; arms bursting out with the force of uncontainable joy; surrounded by the very souls that so many moons ago reclined on the bonnet of our long gone Chevy.  

“ Ooh ah” is the only fitting caption for that picture; and for the hundreds of others that record the moments when Annie draws us all together to witness something truly, reliably, irrevocably good.  She makes us see how easily and often we can have everything we could ever want.

This is probably the hardest post for me to write. Not because the message is hard to deliver but because by writing it I am calling a lot of my closest friends out; even myself.

If you have never in your life, EVER, used the word “RETARDED” or “RETARD” then you can stop reading here.

My bet, though, is that most of you should keep reading.

I know most of you don’t even notice it coming out of your mouths, you don’t “mean” any harm. Usually you are using this word to put yourself down for dropping something or forgetting an appointment.  What you must have forgotten is that this slur is based on the medical diagnosis of “mentally retarded” applied to some people that have developmental disabilities. “Some people” like Annie. You must have forgotten. Otherwise when you do or witness something “stupid, annoying, or uncool” and you use the R-word, you are implying that Annie and all individuals with mental retardation are bad and inferior also. And for those of you who have met Annie…I have watched. You don’t think she’s bad or inferior. You usually coo and melt and want to be around her as much as possible. So, you must have forgotten.

That’s why I’m writing this, not just to remind you, but hopefully to engrain it deeply into your brains so you will NEVER forget again. Not so that you simply stop saying it, but to bring awareness by calling others out when they say it, too. If we ignore it and sit back silently knowing it’s wrong, we can’t change it. Can’t remove the hurt and pain it causes.

Because it does. It hurts. My family hurts every time the word is used. Let me be clear: I am not asking you to be sensitive in the presence of my company or in front of others with developmental disabilities.  I know you are more aware when I am around. I know because I’ve caught you. I’ve seen your face as it slipped out or almost did in front of my baby and me. That if I wasn’t there, you wouldn’t have stopped yourself, wouldn’t have thought twice about what was coming out of your mouth amongst your friends with your children at your feet. You use it so carelessly, you don’t even notice.

You should start noticing, though… please.  I notice. I notice when you are talking about your boss and stop mid-word “Re-” as you look at me and your face reddens. I can read your faces… They so obviously say “Oh, Annie and Colleen are in the room. OOPS!”  And I know how terrible you feel. I truly know you are genuinely sorry. I’m just not so sure you would be sorry if I wasn’t there.

It hurts when we’re not in the room, too. It hurts even more that, after such an encounter, I leave thinking that word would have come out had I not been there. That others in the room would’ve laughed or joined in on the complaint of whatever was “retarded” that day.

It’s such a common word. It grazes playgrounds and classrooms. It frequents offices and restaurants. Celebrities and politicians use it. Commentators and radio hosts use it. We are more okay with saying it in front of children or on television than swear words. It’s not okay. It needs to stop. It shouldn’t be common and casual. We need to change it.

Two years ago I didn’t even think about the word. I know I said it. It came out of my mouth as casually as the word “SHIT’ or even (sorry Mom) the “F-bomb” does when I stub my toe or leave the stove on. I never even realized I was saying it, didn’t notice its presence in my vocabulary. I was always conscious not to call other people “retards” or “retarded,” but didn’t realize the harm and tremendous hurt I, and almost EVERYONE else around me, was causing when it was applied to the smallest of things. I hardly even noticed what I was saying. A favorite TV show cancelled, “That’s retarded.” Forgetting a coffee date, “I’m sorry, I’m such a retard!” The rules at school or work. A favorite sports team’s losses. Some people even use it to describe how incredibly stupid they were the night before because they drank too much.

I didn’t realize that my using this word and adding to its commonality was causing tremendous pain to so many people and families. I know now, too well, the hurt. I can’t even imagine the pain on the first day Annie will come to me in tears after hearing or being called the terrible term.

When you say “Retard”  you are comparing Annie and all other people with developmental disabilities to all those unwanted, annoying, stupid, bad things. I know you don’t think you are. Your getting upset or disappointed by something doesn’t trigger an image of my daughter or an individual with a disability and make you think, “Oh yeah, that’s how I feel about this!”

But you are. You are using her diagnosis to describe all the unwanted things you so casually cast away with that terrible word. So stop it. Please.

Annie’s not unwanted. Neither are the other beautiful, wonderful babies, children, and adults in our world who happen to have a developmental disability. So stop making us feel that way.

This slideshow requires JavaScript.

Many months ago I came up with this idea for Down Syndrome Awareness Month. I decided to ask people who have been touched by Annie to write about her or Down Syndrome or whatever effect knowing her has had on their lives. Some of these “guest authors” started out as strangers, former students who only knew Annie for a short period in their lives. Some are family who are a constant presence in Annie’s life and always will be. I thought it was important for readers to be aware that individuals with Down Syndrome bring important and special gifts not just to their parents, but to the world. To an entire family. To a university. To anyone who is open to letting them in.

It’s easy for a mother to sit and write that everyone should love and accept her child and about how great her baby is. But I want to share the stories of those who never expected to meet someone like Annie. The stories of those who met her unexpectedly as they began their amazing adventures studying abroad. I want to share a grandparent’s view, an uncle’s view, an aunt’s view, a life-long friend’s view.

So every few days you may be reading a post by one of these amazing individuals. I don’t know how I can ever properly thank them for their time and words and especially their honesty.

Today’s guest author is Kristen Macur Brousil. She is a former student at the John Felice Rome Center. We had the absolute pleasure of getting to know her for the quick four months she spent here last spring. A teddy bear from Hard Rock London adorns one of the shelves in Annie’s room. It is from one of Kristen’s weekend trips while she studied here in Rome. I remember after she gave it to Annie thinking how crazy it is that a student we hardly knew yet would think of our baby while off exploring the world. But that is Kristen, super sweet and always thoughtful.  She is currently studying at Loyola University Chicago. We miss seeing her smiling face around campus.

Here’s her post….

I always thought of myself as more educated about Down Syndrome than the general population. My mother had received a degree in Education with a specialty in Special Ed. She had always been adamant about not seeing people as worse, just different. In my psych classes I also had studied facts and “typical” developmental tracks for individuals with Down Syndrome. However, it was something that was conceptual to me—like people with cerebral palsy. Some people were born with a condition, and while they were still people, it was something I pitied. I felt like they missed out on a lot of what I thought was “normal” life.

That was until I met Annie.

If I had to describe Annie in one word, it would be “sunshine.” Not only is her hair as bright as the sun, she is such a happy, smiling, friendly little person. She literally lights up a room more than anyone I know—and it’s not just being a baby. There’s something about her that has such a positive effect on every single person she meets.

Annie taught me so much. She taught me that everyone is essentially equal—NOT ONE PERSON is too cool, calm, and collected to start talking in a baby voice and get visibly excited over the chance to hold and/or interact with her. She taught me that it’s about the little things in life—the feel of something soft and fuzzy, cuddling up to a loving person, dancing to whatever music is playing.

She also showed me that individuals with Down Syndrome are not to be pitied, because they aren’t really missing out on life. Some people say, “But they don’t develop normally.” What is normal, anyways? A doctor once told my mother, and I’ve seen it in countless little people: “Babies don’t read the how-to book.” Some kids walk at 7 months; some walk at 18 months. Even twins—I started teething early, one tooth at a time; my sister waited a few months, then grew four in one night. Just because she doesn’t move at the same pace as others doesn’t make her “abnormal”—it just makes her Annie. Others say, “But they won’t be able to have certain opportunities; certain doors will be closed to them—like being a rocket scientist. There’s no way.” Heck, I’M never going to be a rocket scientist. Everyone has different talents and abilities, and if being a rocket scientist is not Annie’s strong suit, then—oh well, she can join us 99.9% of the general population. Annie certainly lights up the world in other ways.

Annie reminded me why I believe in the essential goodness of people. Not one person had any phobias about interacting with Annie because of her ‘condition.’ Everyone—strangers and friends alike—cooed over Annie, without seeing her differently because of how she looks. I introduced my friend to Colleen and Annie once, and when someone asked who Baby Annie was, she answered “Only the most adorable, beautiful little baby the world has ever seen.”

Everyone loves Annie, and Annie loves everyone. It doesn’t matter what you’ve said or done, Annie loves you for who you are—which I have a sneaking suspicion she picked up from her parents. Colleen and Mike are some of the most inspirational people I have met, and they have had such a powerful impact on my life. Watching them raise their little girl has been a powerful testament to the love of a parent, and just how much two strong, caring, loving individuals can change the world. I know that God has placed Annie with some of the best parents she could have, and I know that Annie, our bambina bella, will take that, go forth, and change the world—one smile of sunshine at a time.

Thanks Kristen. The Beazleys have a feeling you’ll be changing the world soon enough! Love from Roma!

This morning I read a post on my online support group from an expectant mother of a child with down syndrome.  She hasn’t told any of her friends about the prenatal diagnosis, only a few family members. She was sharing her concern and seeking advice on how to ensure that the birth of this child will be a celebration. This got me thinking about the moments after Annie’s birth.

Do I remember those moments and first days as a time of celebration? NO. Were there more tears of joy than sadness? NO. Was my time in the hospital with my first-born child even close to what I had pictured during the long nine months of my pregnancy? NO. Do I remember words of congratulations? NO, I am sure there were, I just don’t remember them. I remember constant love and support, but it wasn’t the party with cigars and balloons and champagne. My room at the hospital actually looked more like a funeral home with huge bouquets of flowers. Do I think her birth would have been easier to celebrate had we known for sure about the Down Syndrome before she was born? I will never know. What I realize now though, is it doesn’t matter. It’s our story, our path. If I could, would I go back and change it? Of course. I’d have been tremendously happy in the hospital, I wouldn’t have cried, I would have thrown the world’s largest party. But there was no way to know then what I know now.

There was no way to know how much she’d make us laugh. No way to know that every time she wakes up, it’s with immediate clapping and yells of pure joy, like she’s saying “Yes! I am ready for this day and can’t wait for all the fun I’m about to have.” God, I wish I could wake up like she does. We didn’t know then that she’d be super healthy. We didn’t know much about her diagnosis at all, and the unknown can be very scary. Mostly though, I never thought I would be happier with it than without it, that that first month of praying for God to take it away and change her, I was so wrong. She is just how she should be, is meant to be, and I wouldn’t take a million dollars to make it disappear.

So to this expecting mother, I would advise her to be upfront with her friends.  To tell the truth and to invite them to celebrate with her family. To share with them the incredible stories of families who have been touched by this amazing gift.  And that it is really something we are happy about and that is how we want to welcome this baby, our baby, into the world.

It’s not that easy to do though. It’s even not fair. That when you learn of a diagnosis of Down Syndrome prenatally or at birth, sharing the news is something to worry about, to fear even. Most expectant moms are setting up that first photo shoot for the arrival of their newborn and going through hundreds of templates to find the perfect announcement to mail to all their family and friends. I’m not saying that parents of babies with Down Syndrome don’t send out announcements to celebrate and welcome their babies. It’s just that the news is different. Reactions aren’t the guaranteed “Congratulations” most parents get to receive, they are mixed. Some of joy, some of concern, lots of sorries, lots of worries. Many don’t know that it’s something to celebrate just as much as any life. But because it’s something most expectant parents are relieved isn’t part of their children, something people have extensive testing to determine it’s unwanted appearance, something some choose to even terminate; it’s harder to deliver the news. It’s blurry and confusing. When Annie was born I was terrified by how others might react to her diagnosis. I was the most fragile I have ever been. My heart at the time was broken, I needed my support system to hold me up and not let me drown.

The first two days after Annie was born were a complete blur. But on the third day, I sat down to announce the birth of my daughter. This is what I wrote….

The day after I wrote my first post, my amazing sister wrote about Down Syndrome Awareness on Facebook.

I am sure she didn’t sit and think about what she would write. (I know she didn’t…she’s a lawyer and doesn’t have that kind of time!)

But, she was able to perfectly say, and in much fewer words than I ever could, exactly what we feel Down Syndrome Awareness is all about.

I come from a family of writers. I am, by far, the least talented of them all.

Today many of you may be spending the day watching Sunday Football. As you notice those bright pink shoes on your favorite players feet as they speed down the field. Please think of Kay’s words.

Here they are…

Most people know that October is Breast Cancer Awareness Month, thanks to the NFL players proudly sporting pink on game-day among other national efforts… but many of you probably don’t know that October is also Down Syndrome Awareness Month.

Those of you who haven’t been directly affected by a loved-one with Down Syndrome probably also don’t know that fortunately, unlike Breast Cancer, Down Syndrome is not something we hope to “survive”… it is a GIFT and a blessing, and we want to make that known. Please take some time to browse my sister’s blog outlining her amazing journey as a mother of a happy, healthy, SMART and loving child with Down Syndrome. And Next time you hear someone use that awful word “retard” or make fun of someone with a “disability”, I hope you will picture my beautiful niece’s face and have the courage to make them AWARE that Down Syndrome is a blessing to be celebrated, not put down.

In follow up to yesterday….

There is so much Annie can do.

When Annie turned 8 months, I remember being devastated that she wasn’t sitting independently. For some reason 8 months was my “must reach” goal. Just two weeks later she did it and reminded me that, “These are MY goals mom, and I will reach them on MY own timeline, not yours.” I haven’t set a deadline for a milestone sense. Here she is sitting for the 1st time.

 

 

 

 

 

 

 

 

 

 

 

 

 

Just days later, I found her in her crib like this….

 

 

 

 

 

 

 

She had pulled her self up to sit for the first time.

 

 

 

When Annie was born and I went through my month of obsessive researching, I didn’t know if she’d be able to eat solid foods. Here’s her first time at age 6 months. Pretty typical if you ask me. She even grabbed the spoon after her first bite.

 

 

 

 

 

 

 

 

 

 

 

I didn’t know if Annie would be able to communicate well. Boy was I silly to worry.

She can tell us when she likes something….

 

 

 

 

 

 

 

 

 

 

 

 

And doesn’t like something..

 

 

 

 

 

 

 

 

 

 

She can sign almost 30 words now. Here’s “All done!”

 

 

 

 

 

 

 

 

 

 

 

 

 

And “Monkey”

Annie can crawl. It may not be a perfect four-point crawl, but it’s hers. Which makes it perfect to us. She can get to wherever she is determined to go. She doesn’t let anything stop her. She rolls, or army crawls, or convinces passing students or faculty to pick her up with outstretched arms and irresistible pouts when mom is actually trying to challenge her and make her work. ARGHH!

 

 

 

 

 

 

 

 

 

 

 

Annie can bring together friends. When we were visiting Chicago, some students emailed that they’d love to see Annie. I sent a message that I’d be at a certain coffee shop for anyone who wanted to stop by. Over THIRTY former students showed up!

 

 

 

 

 

 

 

 

 

 

 

 

Annie can swim. She’s actually starting her second session of swim lessons right this instant. I know she’s splashing and shouting with joy, she LOVES it. This picture is from her first lesson ten months ago. She LOVES to swim. She must get it from her parents. We both were members of swim team growing up. I can’t wait to watch her first meet!

 

 

 

 

 

 

 

 

 

 

She can cheer on sports teams with gusto and motivate marathon runners!

 

 

 

 

 

 

 

 

 

 

 

 

She can convince practically anyone to get down on the floor and play with her (even Brian!)

 

 

 

 

 

 

 

 

 

 

She can always convince Mom to read one more book!

 

 

 

 

 

 

 

 

 

 

She can sit in the grass for hours and loves to feel it between her toes and pull it from the ground with her hands.

 

 

 

 

 

 

 

 

 

 

 

 

 

She can tell you how old she is.

 

 

 

 

 

 

 

 

 

 

 

 

 

She can dance! I need to figure out how to upload videos…I don’t know where she gets her moves, my guess is her uncles.

 

 

 

 

 

 

 

 

 

 

 

 

 

She can melt her dad’s heart (I know, all daughters can). But it is certain that they are kindred spirits and have a deeper connection than any child/parent I have ever seen. And, yes, I am jealous!

 

 

 

 

 

 

 

 

 

 

 

 

 

She can laugh and is always making us laugh.

 

 

 

 

 

 

 

 

 

 

 

 

 

She can sleep ANYWHERE!

 

 

 

 

She can get out of her pajamas all by herself.

 

 

 

 

 

 

 

 

 

 

She loves music and her favorite instrument is the drum. Lord help us!

 

 

 

 

 

 

 

 

 

 

 

 

She can rock a pair of sunglasses.

 

 

 

 

 

 

 

 

 

 

She gives kisses, excitedly and constantly.

 

 

 

 

 

 

 

 

 

 

 

 

 

She thinks she can fly. It’s her dad’s fault.

 

 

 

 

 

 

 

 

 

 

 

 

There are so many things she can do. And that’s what we focus on. We don’t obsess (anymore) over all that she can’t do yet. We can’t live like that, so we celebrate the things she can do now and look forward to the next surprise.

When I was fifteen, my high school Latin teacher taught me a valuable lesson. It was one of those “Dead Poet Society” moments in class, where the teacher gets off topic to teach you a “life lesson.” She must have been frustrated this particular morning with our negative attitudes. So she had us all stand with our arms straight out at ninety degree angles. She explained that she would be coming around to each of us to try to push our arms down. She told us to try as hard as we could to not let her and as we attempted to keep our arms straight out to repeatedly say “I can.” This first portion of the exercise took a good fifteen minutes as she found her way to all 24 of her students. Not ONE of us was able to keep our arms up.

She then explained that we would be repeating the same exact exercise but changing one small part. Instead of repeating the words “I can”, we were to confidently repeat the words “I will.” This time our dear Mrs. Spencer (“Spence,”) didn’t bring one arm in that room down. I admit that I didn’t really get that much from the exercise that year. Only that my teacher was having a “teacher moment” and wanted to teach us about determination and positive attitudes. But as I went on to college and later started a career I began to get it.  That “can” being able to do something is different than “willing” something done.  “Can” is uncertain. “Will” is definite. That there are so many who “can” but choose not to. This is why, when we stand and take vows of marriage, or confirmation, or are sworn in to a job, the response is “I will”, not “I can.”

I bring this up because since Annie was born I have learned that this lesson is much more relevant in a surprisingly unexpected way to my life with Down Syndrome. That it also applies to the negative derivatives of those words. When Annie was born, the word “won’t” seemed to be the only word in my vocabulary. So many won’t’s, so many impossibilities. Won’t’s were oozing out of my mouth with every sentence that first week. She won’t get married. She won’t go to college. She won’t be able to go to school with her siblings. She won’t talk the right way. She won’t be happy. She won’t play a musical instrument. She won’t ever drive a car. She won’t learn Italian. She won’t be easy to potty train. She won’t, she won’t, she won’t.

I realize now, that these things are “uncertain”, not “definite.” There is no way to know for certain what Annie will or won’t do. How can anyone predict the definite’s in life?

Of all those “won’t’s” I was so worried about, all but one are still uncertain. She is definitely happy, most of the time anyway. As for the rest, we will see. There is no way to know.

As far as Annie is concerned, I have completely removed “won’t” from my vocabulary. I have replaced it with “can’t.” I know this sounds super negative, but that’s what I have to do. You see, Annie has a lot that she “can’t” do RIGHT NOW that many babies her age can. She can’t walk. She can’t crawl with her belly above the ground. She can’t drink from a regular cup. She can’t be swung from her arms. She can’t run. She can’t climb stairs. She can’t stand. She can’t feed herself with a spoon. She can’t, NOT YET, anyway.

I choose to replace the “won’t’s” with “can’t’s” because my High School Latin teacher taught me that “can’t’s” are capable of being defied. They can be budged, squashed, trampled. “Won’t’s” don’t budged. And I won’t live like that.

So can she get married someday? Unknown.

Can she go to college? Don’t know.

Can she attend the same school as her future siblings? No clue.

Can she play a musical instrument or be an important member of a sports team? Uncertain.

But my guess is she will. I know now that the things I thought completely impossible are possible. Guaranteed? No. But definitely possible.

As for all of her current “can’t’s,” we’re almost there. We don’t know when, but we know the day will come when we’ll be announcing, “Look, Annie can walk now” and “Annie can feed herself with a spoon.” We know all of the things she can’t do right now, she will do someday. And we’re always ready to celebrate her “can’s.”

She already has so many!

This slideshow requires JavaScript.

As this special month for Down Syndrome Awareness approached, I’ve been doing a lot of thinking about what I’d like to share the most about life with Down Syndrome. If I could share nothing else, I’d be happy to spread the message that it’s not that different. I confess that at the time of Annie’s birth I thought it would make our lives so different, so much harder. But then we brought Annie home and quickly realized we wouldn’t want her any other way, what a tremendous gift we’d been given. And I thought, “I was right, Down Syndrome has made our lives different. It’s made our lives so much better than it would have been without it.”  And it has, I truly believe it has. But now that I am a little further along in this journey, I realize we’re not that different at all, not better, not worse. Our family is as “normal” as any family without Down Syndrome.

We enjoy the same activities, have sick days, and travel. We have tickle wars and movie nights. We eat together, play together and pray together. We cheer for favorite sports teams (especially the White Sox and Bears!). We participate in swim lessons, go out for ice-cream – I mean, gelato. We love the zoo. We have favorite movies, favorite meals, and even favorite times of the year.

I know Fall officially begins in September, but it never really feels like Fall until October. Aside from being an important month for Down Syndrome Awareness; it is also one of my favorite months of the year, as my favorite season kicks into full gear.

I love Fall… LOVE it! If I had to pick a season to be eternally “stuck” in, it would hands down, 100%, be Fall. Don’t get me wrong, I enjoy the wonderful things about every season. But for me, nothing beats the crisp refreshing air of Fall. The sun falling on newly colored leaves. Warm drinks. Sweater weather. Spiced lattes. Pumpkin flavored, well, everything. Roasted squash. Perfect weather for parks and touch-football games.The crunching of leaves and twigs under your feet. The colors. The smell of cinnamon and burning leaves.

Let’s not forget to mention the fabulous activities associated with Fall: Apple and pumpkin picking. Halloween. Candying apples. Chili nights. The year’s last outdoor bonfires. Hayrides. Haunted Houses. Farm visits. Carving Pumpkins. Trick-or-treaters. Cuddling on couches for football games. Jumping in the piles of raked leaves.

Unfortunately for me, most of these activities aren’t really “Roman.” Rome doesn’t really get the same kind of Fall I grew accustomed to growing up in the midwest. The weather can stay  warm until November. Instead of having nice, sunny, crisp days when all you have to do is throw on a comfy sweater and jeans and walk out the door, you can’t survive without an industrial strength umbrella. When it rains here in the Fall, it’s impossible to stay dry. The rain is dumped out of the sky in sheets and it doesn’t stop. The leaves certainly change, but we don’t get the same colors or crunching under the feet.  I don’t think I’ll ever become accustomed to seeing palm trees in Fall. Yes, Rome has palm trees. Our roses stay in bloom through mid-December. There is no pumpkin picking, and although it’s becoming more popular, Halloween isn’t really big here. There is no raking leaves for piles to play in. No football Sundays or Monday nights. Unless you count their “football” (soccer), which really isn’t a big deal for Fall because the teams play almost all year. If we want to watch an NFL game we have to find a pub that is streaming the games live and with the time difference, that rarely happens. I have yet to stumble upon a Haunted House or an apple orchard.

Here in Italy, my saving graces for experiencing the most treasured parts of my favorite season are few. Castroni, an import store here, carries incredibly overpriced cans of spiced pumpkin, when I’m craving a taste of Fall the extra cost is well worth it. This time of year Gina, one of Mike’s colleagues, spoils us and makes pumpkin cookies and other “Fall tastes from home” treats.  The weather does get a bit chillier so I can start to bring out the sweaters. The university throws a Halloween party, so I can dress Annie up for the day, though there are no other children running around the neighborhood in adorable costumes. We host chili nights for friends. Towards the end of October, pumpkin flowers are in season here, and any chance I can, I’ll sit down at a restaurant for one of my favorite Italian dishes, pumpkin flower risotto.

Though I miss all the activities, (especially now that I am a mom and would LOVE to be taking Annie apple picking right this very instant) there’s still one thing that exists here that is fall at it’s finest… and it might be my absolute favorite part of the season.

It’s time to bring out the boots! So go ahead, if you haven’t already, dig into the depths of your closet and pull out your favorite pair, grab your kids or friends and go pick some apples. Yesterday the weather was perfectly Fall, and though there was no apple picking, we got to enjoy our first day in boots. And it was perfect!

This slideshow requires JavaScript.

The whole point of all of this, is that if I hadn’t sat down to write a post for Down Syndrome yesterday morning, I don’t think the words Down Syndrome would have crossed my mind. The day felt like Fall and it made me miss my favorite things about Fall from back in the States. So Annie and I dressed in our new Fall apparel we’ve been so anxious to wear and headed to spend as much time outdoors as possible. That’s how our days usually go. We get up, we eat, we read some stories, we go for walks, we play and interact with others, we make the best of beautiful days and rainy days, we meet new vendors at the market, we look forward to Dad coming home from the office. We have schedules and routines. Just like everyone else.

It’s rare that I think about Annie’s Down Syndrome. Most of the time, I forget about those words. Of course there are therapy appointments and exercises and things to work on for speech development and so on. And at first those made it hard not to think of the Down Syndrome, not that it was bad, but just that it was there and that’s why we were doing all these things. But now those appointments and exercises have just become part of our family routine and the therapists have become our friends. As much as football or swim practice or piano lessons or play groups have become a part of your family’s routine. We get up and ready for the day and sometimes we head to swim lessons and sometimes we head to the osteopath for therapy. It’s just what we do. We don’t look for or think about Down Syndrome, we look at and concentrate on Annie because that’s what there is. She’s Annie, not Annie with Down Syndrome. She’s Annie.

Post #3 I borrowed from one of my posts for October, 2011. It’s packed with answers to some of those uncomfortable questions I talked about yesterday. At the bottom, I’ve attached links to a few great sites, such as the NADS (National Association for Down Syndrome),  for more facts on Down Syndrome. Please check one or all of them out.

Here are corrections to some of the most common myths and misinterpretations about Down Syndrome.

Down Syndrome is NOT a rare genetic disorder. It’s actually the most common genetic condition. About 1 in 691 babies is born with Down syndrome and over 6,000 babies are born with Down syndrome in the US each year. Currently, it is estimated that there are over 400,000 individuals with Down syndrome in the United States.

More than 90% of the time, Down syndrome is caused by trisomy 21. A child with trisomy 21 has three copies of chromosome 21 — instead of the usual two copies — in all of his or her cells. This form of Down syndrome is caused by abnormal cell division during the development of the sperm cell or the egg cell. It is not an “inherited” condition, passed down from generation to generation.

The only well known risk factor for conceiving a child with Down syndrome is advanced maternal age. The older the woman is at conception, the greater the possibility of having a child with Down syndrome.

People with Down Syndrome are NOT dumb. They go to regular schools, graduate from high school, and many go on to college.

People with Down Syndrome are NOT institutionalized. On several occasions, college students on campus where we live have asked if Italy “has the right kind of institutions” for Annie. I am glad my family has been given the opportunity to correct this misconception in the young impressionable minds of the students we interact with each year.

Adults with Down Syndrome are NOT unemployable. They are contributing members of society and hold jobs of a variety of skill levels.

People with Down Syndrome are NOT always happy. They have and experience all the same emotions as the rest of us. Their feelings get hurt just as easily as everyone else.

Children with Down Syndrome do NOT have to be placed in segregated special education classrooms. Children with Down Syndrome can attend regular classes, some do not need assistance from classroom  aides.

Children with Down Syndrome are NOT unwanted. There are many people who REALLY want to add a child with Down Syndrome to their family. There is an enormous waiting list  specifically for the adoption of children with Down Syndrome.

As part of Down Syndrome Awareness Month, I will be blogging everyday for the entirety of October to take the 31 posts for Trisomy 21 challenge. I encourage you to reach out and read the other blogs of fabulous parents as they write this month to bring awareness, too. I’ll be sharing some of their posts on Facebook. If you can find the time, continue reading this month, their stories and children are amazing!

But for now, here’s Post #2…..

When Annie was born we had a lot of tough questions to figure out and face for ourselves. So imagine the questions we were bombarded with by others as we brought Annie home and shared the news of her diagnosis.

My family lives in Rome, Italy. A LONG way from home. My husband’s work brought us here just over two years ago. My husband works for an amazing study abroad program, The John Felice Rome Center, one of the campuses of Loyola University Chicago.

The Rome Center has somewhat of a large history in our relationship. Though not the place where we met, it is the reason we met; a long story for another day. Just eight months after we were married, we found out we would be moving to the place that, as fate would have it, brought the two of us together. Then, just three months later, the day before we moved here, we found out we were expecting our firstborn. We couldn’t have been happier. What an adventure starting our family would be!

When we were packing in Chicago for our big move, I was excited and anxious for our new life abroad. I dreamt about the travel we would do, the food we would eat, the places we’d see together, the memories we’d make. What I didn’t expect, was that one of my favorite parts about living here, is being surrounded by college students. The students here come across an ocean to study in a foreign country. Most of them have never been to Europe before. We witness so many “aha” moments as they experience the world at their fingertips. It really is an amazing thing to be a part of. And a wonderful atmosphere for Annie to grow up in, surrounded always by so much young energy and enthusiasm for life.

Every four months a new class shows up at the gates of our campus. They are usually curious about the family that lives among them. Part of my husband’s job is living on campus. In cases of emergency, he is the go to guy. Our first semester here, the students were excited about the news of a pregnancy. Many of the students from that semester have never met Annie, but were excited about her arrival. The next set of students were even more anxious for her arrival as my belly grew each week. They were here when she was born and here to welcome her to her new home. Many of them didn’t understand or know what to think about her diagnosis. There was much curiosity, as there always is with each incoming class since, about Annie and what her diagnosis means for her and our family.

This is where some of the tough questions began. I knew there would be questions, I just wasn’t prepared for some of them. The great thing about college students though, is that they are so impressionable. They are much more mature than they were in high school and not ashamed or embarrassed to ask questions, even the tough questions. Though most of the questions stemmed from tremendous stereotypes, myths and even ignorance, (heck, even I was ignorant about a lot to do with Down Syndrome upon the news of her diagnosis) I am SO glad the questions are asked. Though hard to swallow,they are never hard to respond to. Answering their questions brings awareness and understanding. They take back with them the facts about Down Syndrome and help to change the stereotypes and myths and spread what they know from meeting my family and, especially, from knowing Annie. The best thing about living here, on campus, is that we bring awareness every day.

When we brought our new bundle home to the university, there were (thank God) congratulatory signs and welcome signs and “We missed you” signs. Though curious, there was still celebrating. But slowly, as we starting bringing the baby out more, the questions came.

Do they have the right kinds of institutions for her in Italy?

Will she be able to talk?

Will she be able to go to school?

Didn’t you have the testing?

Will she have to live with you forever?

So Down Syndrome must run in your family, huh?

Aren’t you too young to have a baby with Down Syndrome? I thought only older mothers had them?

I wasn’t asked this last one directly, only heard by word of mouth, that a young sophomore was wondering if I had taken drugs, drank or smoked during my pregnancy? And if that is what caused the Down Syndrome?

So many misconceptions. So many stereotypes to overcome. But most importantly, an incredible opportunity to right the myths, do away with awful stereotypes, so many minds to influence and change.

(I am certain, that many of you reading this may have the same questions about Down Syndrome. Read on tomorrow for stereotype and myth busters.)

It sort of went like this…

“When I heard that your daughter had Down Syndrome, the first thought that came to my mind was, ‘less than human’.”  He explained that he had no experience ever being around an individual with Down Syndrome and these were the images that society had placed in his mind. He said he knew many individuals terminated pregnancies because of DS, so he thought “they must be less than human or why would they make these decisions.”  The individual asking me about her, was so ashamed to admit his thoughts, he had tears streaming down his face as he confessed these things to me. I responded to his honesty with my own tears, placed my 100% human daughter in his arms and  said this, “Oh, insert young man’s name, you couldn’t be more wrong. My friend Eric is 27. He was born with Down Syndrome. I have known him since he was born. He is more “human” than anyone I have ever met. He knows the exact moment you need a hug and doesn’t hold back, just comes straight at you with open arms and embraces you in, literally, the world’s best hug. His smile stretches more grandly across his entire face than any smile you’ve ever seen. I don’t know how he does it, but he smiles with his entire self, it’s overwhelmingly genuine and powerful. It can light up the dimmest room. He’s always, ALWAYS happy to see me. And never forgets to ask how I am. If I am having a bad day, and Eric walks through the back door for an unexpected visit, all is made right. His love and enthusiasm for life is so contagious, any and all worries seem to melt away in his presence.” I then said, “If that’s not human, I don’t know what is.”

If I am not certain of anything else, I am certain that young man’s distorted view of Down Syndrome was changed that day. That by listening to my stories and by interacting with my daughter, he will forever view Down Syndrome in a different, better light.

I will never forget these encounters, even though they sometimes sting a little, especially the last one. But I am grateful for the curiosity and honesty. Because how can we do away with the stereotypes and myths if we don’t face them. These students did not mean any harm, they were just genuinely worried for Annie. As Annie has grown and is developing and as her smile brightens up the campus on a daily basis, the questions have become fewer and farther between. She teaches them through just being herself; not really that different than any other baby they might encounter. She makes them aware that people with Down Syndrome have enormous potential and an important place in society. She wows them with her communication skills, her animal sounds, her infectious ciao and kisses, her applause after every song in Mass.

And the best part is, they really 100% open up to her. They fall in love with her, ask to hold her, beg to babysit (and we don’t even pay!) They look forward to seeing her at their calcio games. When I walk through a hall with her in my arms or her stroller, it is extremely rare that I get a “Hello Colleen, How are you today?” But instead I hear the excited squeals of “Baby Annie! Hi Annie! Annie, I love your dress!”, as arms reach at me from every angle to squeeze a baby cheek or grab her tiny irresistible toes, anything for a little piece of her.

At the end of each semester, as I ask students about their experience abroad and what influenced them the most, I am always amazed. Amazed that their answers aren’t: sitting under the Eiffel Tower in Paris, or climbing a mountain in Abruzzo, or speaking an entire conversation in another language with a stranger, camping in the dessert in Tunisia, staring at the ceiling of the Sistine Chapel for hours, or taking up an invitation to a home cooked meal in an Italian home.

More often than not, it is the people they met, the friendships they made, and our Annie.

What more could I ask for?

This slideshow requires JavaScript.