Monthly Archives: October 2012

The Eternal Gift I Found in the Eternal City…by Luke Jorwic


Today’s guest blogger is a former student, Luke Jorwic. Luke studied here last Spring. He was one of the students I got to know extremely quickly and maybe too well. Not only because I could hear and see his dorm room parties from my living room across the courtyard, but because he became one of my “projects.” One of my favorite things to do is to frequent the common hangout spots on campus and kick students out. I push the stroller through the coffee bar or library and “yell” at the students to get out of here. I remind them that they are “in ROME for goodness sake, so stop wasting time here and go get to know her!” It’s easy to get stuck in our comfy Information Commons. Luke was a regular in the IC. I first thought he was obsessed with perfect grades and was constantly studying. I quickly learned  he’s addicted to real estate and can’t keep away from listings. Anyway after MANY occasions of forcing him to get out to explore, he became a quick friend. Now he feels more like family. It doesn’t help that he’s become one of Annie’s aunt Rachel’s best friends. He’s constantly in touch with us and we are so glad he is part of our lives. His words are overwhelming, even just his title brings tears to my eyes. We love you Luke and we think you are 110% cooler than us! Thank you for being a guest blogger.

The Eternal Gift I Found in the Eternal City

When I moved to Rome, there were a few things I was expecting. I expected to travel around, drink some wine, “study”, and hopefully have some experiences I would never forget.

What I didn’t expect was to find friends that I would think of every day and people so far from home who reminded me so much of my family. When I had the chance to meet the Beazley family I instantly thought we would be friends. Well really, I hoped I would have a chance to get to know them, that they would think I was at least 10% as cool as I thought them.

When I first met Mike, Colleen and baby Annie I was delighted to see a family living on campus, and saw the way they interacted with all of us students on campus as a real gift. They weren’t just a family living on campus in case Mike had an emergency; they were the heart of the campus family. Now when I met baby Annie, I was instantly pulled to her, as we all were, and also to the parents that were surrounding her. Not just doting on her, but providing her with experiences that I knew would last her a lifetime.

I instantly felt connected to the Beazleys as they reminded me so much of my family back home.  My older brother Chris has Autism, a fact that enriches and shapes my perspective on life every day, and seeing this budding family working through a diagnosis in such an amazing understated way while thousands of miles away from family left me amazed. I knew we shared the same perspectives and viewpoints without ever having to discuss them. This connection is one I hadn’t ever felt before.

Watching my fellow students interact with Annie on a daily basis made me happy each time, and seeing Mike and Colleen fearlessly answering questions about Annie’s disabilities furthered my faith in the future for individuals with disabilities. An outlook that for a lot of my life growing up wasn’t always so positive.

There is one particular night, on one particular terrace that I will never forget. It was a really transformational conversation for me and my experience with disabilities; cementing everything I’ve come to believe in over my last 20 years as a sibling to an individual with a disability. Colleen and I talked about every side of every issue that could possibly face a family with a child with a disability.

I finally verbalized what I had always known and thought. That my brothers diagnosis was a gift, one I would never ask to give back, and that it had enriched my family immeasurably. The gift of that realization is one I can never repay, and I was so happy to share it with the matriarch of my favorite Roman family. I can’t even fathom all of the amazing things the Beazley’s are going to do, boundaries they will tear down, and lives they will each individually touch, but I cannot wait to sit back and watch Colleen, Mike and their sweet baby Annie.

Gina’s Post


Today’s guest author has quickly become a part of our Roma family. Gina Crovetti has worked with Mike as a Student Life Assistant for the Resident Life Team since the Fall of 2011. We are so glad she is signed on to work for the JFRC for another year. We love having her around. Not only is she great with the students and super at her job, she is the best chef/baker, a wonderful babysitter, and an enormous friend. Last year while she was rigorously training for the Rome Marathon, Gina approached me with tears in her eyes telling me Annie’s been such an impact on her that she would like to run the Marathon for the charity of our choice. Last March, Gina raised almost $4,000 for our favorite Down Syndrome Organization, Gigi’s Playhouse Chicago. As the three of us watched her cross the finish line with an 8X10 photo of Annie pinned to her back, I was overcome with emotion. Annie’s impacted so many in the short time she’s been here already, but because of her interactions so many more have impacted ours. We love you Gina! 

Wow, contributing to this blog holds quite the expectation.  I have only read the most beautiful and awe-inspiring things from those who have left their mark here for baby Annie.  And add to that the endless talent of a writer such as Colleen.  When Colleen first proposed the idea of posting everyday and including guest-bloggers, I knew I wanted to write but knew that words don’t always flow onto paper (or electronic documents) quite as easily for me.  It wasn’t until I was with some co-workers in her apartment and Colleen was telling some of the best stories in her arsenal, how she met, fell in love with, and married Mike, that some light was shed upon my motivation to write.

I know for a fact most people do not get to know as much detail about their boss as I do, and I have Colleen to thank for most of that.  Her gracious ways with words have left me many places on the spectrum from laughing on the floor to choking back tears.

Although we’re only going on 2 years of knowing each other, I’ve gotten the chance to hear Colleen tell the memories of her past to new people in her life all the time.  We live in an ever-changing environment, with students coming and going in quite cyclical patterns.   Yet her stories stay the same, and bless her heart, so does her delivery.  Every time she starts the story of her engagement, how they found her on her wedding night knuckle-deep in cake, her pregnancy, Annie’s birth, and her first birthday, I break out the popcorn kernels and sit back and enjoy.  And each time, I get to see the faces melt off her listeners.  They “aww” at every kiss, laugh at outrageous moments, and smile bigger than I’ve ever seen when it’s over.

Then I realized one day, this immense love between Mike and Colleen, this connection of lives and hearts, this ability to retell the same story with the same passion, could only create something as beautiful and wonderful as baby Annie.  It only makes sense that this butter-ball of energy and light would come from the relationship of unquestionable love between her parents.

To me the Beazleys make perfect sense.  Everything just fits and the bond is so secure. No one thinks twice about how wonderful Annie is.  It is fact.  There’s not a person who can disagree with her smile, turn away from her laugh, frown at her excited clapping.  And I’m writing today to insist that there is no other possible outcome to Mike and Colleen’s love than this little girl we have all come to know and love.  (And by love I mean become obsessed with – because that’s the level the student’s reach.  I’ve seen it once, I’ve seen it a thousand times.)

Colleen has taught me to never settle until my heart is full to the brim with love for another person.  And that person will feel even greater towards me.  The best part is, it’s not something you look for, it’s something that finds you, knocks you off your feet, and proves to be something you can never run away from.  This is what I cannot wait to feel in my future partner, but it is also exactly how I feel about Annie.

I had no concept of what my boss’s family would be like when I took this job in Rome.  I did not know how many meals we would cook together, how many homesick days we’d spend watching movies, how many pots of kettle corn and bowls of oatmeal we’d eat with no shame.  And I absolutely had no idea I would meet this little girl who would change me forever.  I didn’t go looking for someone like Annie, didn’t know that’s what my heart needed, until she found me.  She knocked me off my feet, opened my eyes, and made me feel unconditional love.  She absolutely has proven to be someone I can never run away from.

I haven’t told Colleen this, but I know there will come a day (but I secretly hope this won’t happen) where we won’t be able to see each other for long periods of time, with life picking up and us continuing in different cities, and we’ll set up a date at some local coffee place.  Annie will walk through the door, as a teenager, as a girl, as a woman, and I will loose everything.  The tears will stream and I’ll be baffled that for once, I’ll be the cornball telling her, “I used to hold you before you sat up on your own.  I used to try and teach you new signs, attempt to put shirts on you, watch your parents wedding DVDs after you fell asleep.”  And she’ll be beautiful, with the same gorgeous blonde hair and those big blue eyes will stare at me while she tells me about what she did over the weekend.  And I will melt.

My job is temporary, and in fact will be done next July, but there’s no going back from what I’ve built with Annie, with Colleen, with Mike.  No way it can be undone, no way I can feel less love, no way it can revert to how it was before I knew them.  My hopes for love are through the roof.

If I could look through a crystal ball to see what was ahead, I never would.  I would only hope it would knock me off my feet the way Colleen describes meeting Mike, and the way I met Annie.

Oh to be as blessed.

Kaylea’s Post


Today’s guest blogger is my sister Kaylea. I am the oldest of six children: three girls, three boys, in that order. Kaylea is the youngest of the sisters. She along with our sister Molly is so much more than a sister, my closest and best friend. For the three years before we moved to Rome, Kay was off living in Florida studying to become the kick-butt attorney she is today.  So we didn’t get to see her that often. Now, we see her even less. (Though she is currently tied with Molly for most visits to Rome with three visits each!) We treasure every moment with her. She is my rock when I start to crumble; she never fails to bring the fun when days seem dim. I see so much of her personality in Annie. Zia Kaylea, we love you and miss you so much!

I’ll never forget the moment I found out I was going to be an aunt for the first time. My sister Molly and I were the first to hear the news, which was only shortly after Colleen herself saw the double pink lines on that little white stick.  It was the day of Colleen and Mike’s big going away party, almost exactly one year after another unforgettable party celebrating their matrimony.  Now, if you’ve ever been to a party at the Weiler house, you know that the phrase “quite the ordeal” is a major understatement. And I’m not talking about the parties we kids threw when mom and dad were out of town… although those were fun too! I’m talking about the REAL Weiler parties that my amazing dad somehow manages to find the time and money to throw together at least once a year.   REAL Weiler parties seldom have fewer than 100 guests in attendance, never end before 2:00 am and usually start the night before, as dozens of cousins and friends come over to prep the food (stuffing sausages and cabages and rolling out the dough for homemade pasta, mixing the batter for potato pancakes and/or making buckets full of sangria), clean up and more importantly drink lots of beer!  

What my parents’ living room looks like on nights before and after REAL Weiler parties. All beds, couches, and floor space are filled to maximum capacity.

 So of course on the day we had the big send-off for Colleen and Mike, there were at least twenty people at the house by 10 am (when the party was to commence at 3:00 pm), and there was a LOT of running around to do.  At that point it had not even hit me that my oldest sibling was about to leave the country indefinitely.  So when Molly and I returned from a hectic beer run that involved three shopping carts full of beer, wine, liquor and snacks, and twenty minutes of freaking out because we had lost the car keys somewhere inside the huge grocery store, we weren’t thrilled when the first thing we heard as we pulled in the driveway and attempted to start unloading was “Girls, Colleen says she needs you and she says it’s urgent.”  Then as we walked in the house, carrying all the purchases we’d made for HER party, we heard Colleen shouting our names from the top of the stairs, wrapped in a towel.  We both immediately said, “Coll- it doesn’t matter what you wear, you will look beautiful in anything.”  We really thought the important thing she needed us for was fashion advice. 

 So after attempting to ignore her yells for fifteen minutes or so, we finally ascended the stairs to see what the emergency was all about.  She handed us the little white stick with a purple cap and asked, “Is this positive?”  Now the second pink line was slightly faded, but it looked like a pretty clear positive to me.  I immediately became teary-eyed, started jumping for joy and hugged my oldest sister.  Molly, the nurse, had a very different reaction.  She told Colleen that before she gets too excited, she should go to the doctor to see for certain and to make sure everything was going ok.  

From left to right; Kay, me, and Molly on that first day we found out about Annie. Mike was the only one who knew that day as we were surrounded by hundreds of family and friends to say goodbye.

 Rewind to March of 2009.  A few weeks after my wonderful brother-in-law proposed to my sister, he sat me down and asked me what I would think if he one day got a job in Italy and had to take my sister away with him.  I, thrilled that he valued my opinion, answered that although I would miss them greatly, I would also be 100% excited for them and would seize every opportunity to come visit them.  What hadn’t crossed my mind at that moment were all the things I wouldn’t be there for.  

It wasn’t until a year later when I helped my pregnant sister check in at the Alitalia counter at the O’Hare airport with her four enormous suitcases, not knowing when the next time I would see her would be, that I realized what all this meant.  I would have to see her first ultrasound picture over the internet, I would have to hear the news learned at each doctor’s visit over Skype or email, I wouldn’t get to feel my niece or nephew kick inside her belly and most disappointing of all, I would not be in the hospital with my sister when she became a mother for the first time.

 Still, when on April 1, 2011 at approximately one in the afternoon (Miami time), I received the news, by way of a phonecall from my mother, that I had a niece named Anne Kathleen Beazley, I was overwhelmed by emotion.  I was extremely happy and excited to be an aunt, but at the same time I was sad and almost felt guilty that I was not there with my sister.

It wasn’t until the morning of April 2, 2011 that I found out about Annie’s diagnosis.  As I revisited the pictures of the tiny bundle I had just seen fewer than eighteen hours earlier, I looked at them in a different light.  I analyzed them thoroughly.  “But she doesn’t LOOK like she has Down Syndrome.” “Yes, I guess her arms look kind of limp at her side, whereas other newborns clasp their hands close to their face…but she JUST DOESN’T LOOK LIKE SHE HAS DOWN SYNDROME.”  “Maybe that means it’s only ‘mild’” “Maybe she’ll be more like a ‘normal’ child than most other babies with Down Syndrome.” Looking back, I cannot even believe I had these thoughts.  SHE LOOKS LIKE ANNIE, and she’s beautiful.  And she gets more and more beautiful every day.  She has Colleen’s bright blue eyes, Mike’s button nose and light redish-blond Beazley hair.  She is part Weiler and part Beazley, part Colleen and part Michael, and she is 100% ANNIE.  The “Down Syndrome features” that she does display do not make her any less beautiful.  They do not define her. 

 As I analyzed the pictures of Annie’s first days, a new emotion came over me.  I was scared.  I was frightened and nervous for my sister.  I was terrified about the life she now had ahead of her, a life that would be much different than the one she dreamed of.  Scared for the challenges she would face.  But most of all I was scared because she would have to face them without me and Molly and Mom and Dad and Danny and Tommy and Bubba.  And although I was scared for her, I knew that she would be able to handle it.  And I said to her the only thing I could think of to “console” her.  I said, “Colleen, we have always known that you and Mike are going to be amazing parents.  God gave Annie to you because he knew that if there were any two people on this earth that could handle this, it’s the two of you. You can provide so much for her.  You can teach her so much.”  And of course I meant these things and believed them to be true.

 But I was wrong.  It was Annie that would teach us so much.  And I should never have had to “console” my sister for this gift that turned out to keep on giving and giving and giving.  And yes, Colleen and Mike are amazing parents, but God didn’t give them Annie because he knew they could “handle” her.  He gave them Annie because Annie would bring more light and love to their lives and to the lives of so many people around her than anyone could have imagined. 

 In a previous post, my brother Danny wrote about the well thought-out things HE said to Colleen after hearing of Annie’s diagnosis. I don’t know the exact contents of that email he sent to her eighteen months ago, but I know that one thing he said was something along the lines of “Annie is going to be so loved by so many people.”   And we all know I RARELY admit when this happens, but DANNY WAS RIGHT.  I just don’t think even he knew how right he was at the time.  Although I am sad every day that I am an ocean away from my sister, brother-in-law and niece, I know that every day Annie is surrounded by so many students, teachers, faculty and even Italian strangers who absolutely love and adore her. And she gives them so much love in return.  

Annie with Aunt Kay and Uncle Danny in our neighborhood park in Rome.

 This weekend, I had the honor of spending a little bit of time with the 94 year old grandmother of one of my best friends, Sandy Reitman.  When our friend Jon asked this incredible woman if she had any advice for the younger generations, she calmly responded, “I live my life based on two words.  ‘Attitude’ and ‘Acceptance’, and if you have one then you’ve got the other.”  As I thought about this later on, I realized that a one-year old baby girl with Down Syndrome had already taught me this very same thing, although she wasn’t able to communicate it to me in words as elegantly as could Mrs. Alicia Reitman.  Annie accepts absolutely everyone with open arms and a smiling face, and as she does so, she teaches others to be accepting as well.  Annie doesn’t discriminate, and neither should we.  


Off to Poland! Week of guest bloggers…


A few months back, I wrote to some former students, family members, and friends to see if they would write about how knowing Annie has impacted them or changed their views on Down Syndrome. I knew I wanted to bring awareness this month by sharing Annie and I thought the more perspectives I have of her the better. The more Annie stories we can tell the more awareness we can bring. And better coming from more mouths than just mine. (Plus I knew we’d be away for Fall Break and that I desperately needed a bit of help.)

The response has been unreal. The words they have written have knocked me off my feet, brought tears to my eyes. There is no way I could ever tell them how much their words mean. Nor to thank them for taking time out of their busy schedules to write about our daughter.

While I knew they “fell in love” with Annie from observation, I didn’t know how deep that love went. I am overwhelmed by their honesty. Floored by the impact my family has had on them. I want them to know that their impacts on us are 21 times as great as they claim ours on them to be.

Mike, Annie, and I leave for Poland today. By the time this post goes out, we will be in Munich waiting for our connection to Warsaw. The next eight posts or so will be taken over by guest authors. I am honored that they have volunteered to be a part of my little blog. They are spectacular and we love them all!  Thanks for helping me to bring 31 straight days of Awareness for Trisomy 21!

Please read all their posts! There words are much more powerful than my own! And as forewarning….there will be some tears shed in the next eight days!

For now, here’s a pic of Annie while we were packing for our trip to the beautiful, but very cold, country of Poland. Hope it makes you smile. And don’t worry, I’ll make sure her legs are appropriately covered too!

Overwhelmed with love…thanks JFRC Community!


I have written, on many occasions, that before Annie I didn’t know life was capable of so much love. That Annie fills our lives to the brim with it; makes us feel like we’re swimming in it constantly. And she does.

But here’s the thing…I need you to know that Annie is just the source, the spark. The goodness and love others share with us when they meet Annie is the absolute explosion.

That’s how I feel today. Like my heart could explode from so much kindness, so much love. So much acceptance and understanding.

You see, I am one of those people that believes the world is made up of much more good than bad. Not an easy thing to believe when you turn on the news or watch the presidential debates and the nasty and hateful campaigns. Not easy to believe when hate and war and tragedy get all the attention. It’s easy to focus on the bad. Easy to see what we want changed and what we dislike.

But there is so much good all around us, too.

I see it all the time. It’s the kindness of a stranger chasing you down to return the wallet or briefcase you left on the bus. A group of students giving up their entire Saturday to clean up a neighborhood. A hug from an acquaintance after hearing of a loss. It’s holding the door for each other. It’s someone asking how you are and truly wanting to know and listen. It’s a stranger assisting with groceries or helping you up after a stumble. It’s a simple smile or hello.

It’s all the love that people who meet Annie bring into our lives. Their interest, love, concern, support and celebration of her is inspiring to witness. I am truly amazed by the showering of love that follows almost any encounter with Annie. It’s like she magnifies the good in people. Allows us to see that most people really are good and pure and true.

I remember worrying after Annie was born if people would accept her, would show an interest, want to be around her. I worried they would pity us. Being the disciplinary officer on campus isn’t always the most popular position for my husband. I worried that immature students would make fun of him and his disabled daughter. What a terrible thought to have had!

From the moment I brought her home everyone around her showed me I had nothing to worry about. The total and absolute acceptance and love everyone shows my daughter has allowed me to wholeheartedly trust in the good of people. When students meet Annie they accept and love her with nothing but open arms. Our students are far beyond immature. They would never say a negative thing, ever, about their campus baby. Because that is what she has become, an important part of their experience here in Rome an constant presence on campus. Each semester I am more blown away than the last by their reactions and interactions with her. They have reassured my belief. The world is filled with so much good. We just have to look around and notice it.

Last night I received this email from my husband which he shared with our families back home. In the subject line he wrote one word: BEAUTIFUL.  The letter from the student blew me away and brought tears to my eyes.

Dear Family,
This is a message sent out thru the JFRC listserv today about a student’s initiative brought about of his volition. Pedro is absolutely enamored of Annie and he wants to contribute the efforts of raising awareness at JFRC and beyond.


Dear Faculty and Staff of the John Felice Rome Center,  

Tomorrow, the community of students have decided to declare Wednesday, October 17th as the JFRC Down Syndrome Awareness Day. The purpose of this event is to increase positive awareness of Down syndrome by engaging the JFRC community to empower individuals with Down syndrome, their families, and their community. Please join us on Wednesday, October 17th, by wearing blue or gold, the colors of Down syndrome awareness, demonstrating that we, the community of the John Felice Rome Center, stand in solidarity with those working to empower and educate our communities about Down Syndrome.   Expect to see informational posters and flyers throughout the campus building detailing ways in which we can make our communities, both here in Rome and back at home, places where individuals with Down syndrome are accepted and embraced.   I appreciate your support and generosity in advance.  

AMDG, Pedro Guerrero, JFRC student

I had no clue, no part of the students’ plans to do something to raise awareness. And to top it all off during their very busy midterm week!

So you can imagine the tears I had to hold back today as Annie and I walked the halls of campus and saw that they were filled with gold and blue. Practically every staff member and student wore these colors proudly. Students stayed up extra late in the midst of their serious studying to make signs and ribbons to hang on every wall and door of the building. A slideshow of facts about Down Syndrome and photos of Annie played over and over in the cafeteria.

Today some 2oo people took time out of their day to be AWARE. To show support and to become informed about the realities, not stereotypes, of Down Syndrome. Most of these people are just beginning their exciting and carefree twenties. But they care. They care so much. And I will forever be grateful to them for today and everyday they take the time to LOVE my daughter. What a lucky little girl she is!

Though there is no way or words that could ever appropriately thank them for their support, I must say THANK YOU. Our students are our future. And when times have been so uncertain and ugly lately, today they made me realize our future, Annie’s future, is in the best hands. You are amazing and we’re so glad you are even a small part of Annie’s life.

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Good Mornings…


Today I thought I’d share just a glimpse of what our lives are like with our daughter who happens to have Down Syndrome.

Every morning as I lie in bed peacefully and am awoken by my babe from across the hall, I think to myself, “Where in the world did you come from?!”

Not from your parents, obviously.

Annie is different than us. She is MOST different in the morning. If any of you know her parents and have been around us when we wake up, you know how important it is to stay clear until after that shower or two shots of espresso. We’re not morning people. And that’s an understatement. We’ve never had that spring in your step, can’t wait for this day to begin attitude upon the sun’s beckoning to get up and start the day. Somehow though, Annie does. And it’s awesome.

With Annie, I no longer wake up to that god awful annoying buzzing of a mechanical device. Instead Annie has become my signal that it’s time to start the day.

This is how our mornings go…..(EVERY TIME)

When Annie wakes up she immediately sits up and begins clapping. She gets a super goofy grin on her face and claps her heart out (it’s super adorable and hilarious at the same time because at this point she still has that drunk from sleep look in her eyes). Once she’s come to a bit more, she lets out the most tremendous shout of joy. It’s not a worried cry or a “Hey, I’m up. Hurry and get me you lazy parents!” It’s more like she’s half laughing and calling out “Hey Mom! Isn’t this great it’s time to start playing again!” And though the clapping is what initially wakes me up, this joyous shout is my signal to go and get her.

And so each morning either Mike or I sleepily crosses the hallway to her nursery and are met with the world’s smiliest babe. It’s like light radiates out of her more than ever in the morning. She’s the sunshine that had been missing from our old crabby mornings. Sometimes Mike and I playfully fight to be the one to go and get her. That first glimpse of her in her crib when she knows you’re coming is the best.

The next part of our morning though is gold. Whichever parent gets her from across the hall brings her in to crawl into her parents’ bed with them for that “just ten more minutes” we always need. And as soon as we’re all three snug together under the covers with Annie in the middle, she reaches out those arms. She HAS to be touching us both. Arms outstretched to find our shoulders or our chins. She then lays between us completely awake and softly rubs our arms. It’s like she’s saying, “It’s okay, I know you’re tired. I can wait and while I do I’ll help by massaging you with my soothing touch.” And so for ten minutes or so we start our day together. Just the three of us joined every morning by Annie’s magic touch.

And then it doesn’t matter which parent moves first. As soon as one of us gets up, Annie is immediately sitting straight up and laughing, immediately signing for “milk”. And so the three of us get up to move on to breakfast. Her energy and enthusiasm for the morning is completely contagious. With her we can’t help but be ready for the day.

About a year ago I wrote this post about how Annie really did smile all the time but that I could never catch it on camera. I was ecstatic when I finally caught her smile on film for the first time and wrote this…

Now I don’t have to worry about catching that smile. If I wanted to I could catch it a million times every morning. Here’s this morning…

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Annie makes me strive a little harder for this kind of happiness. She inspires me to embrace and, more importantly, enjoy each and everyday. She’s changed my life in so many ways. But mostly she makes me LOVE mornings.

So here’s the thing….


There are a lot of mixed opinions out there in the Down Syndrome blogging world. A lot of authors of blogs I follow have even gotten flak for portraying too positive pictures of life with Down Syndrome. That they are not being realistic and parents who are facing a prenatal diagnosis should know how it really is. So here’s the thing…

It’s hard. It’s more challenging. It hurts. It’s scary (at first). There’s more work involved. 

I’m no fool. I know that the vast majority of expecting parents do not wish for a child with an extra chromosome; that they pray or hope with all their being that their child is not born with Down Syndrome.

Although there are some spectacular people out there who get it even before becoming a parent. My friend Danielle shared with me an insightful post from a mom who was told her unborn child had multiple markers for DS during an ultrasound. She, unlike most in her shoes, celebrated immediately; knew it was meant to be because she was special. And then her child was born without DS and she was a little bit let down. Wasn’t what she was expecting. What a beautiful story. The complete opposite of most of our stories. The devastation most feel when they receive a diagnosis. But here’s a mom who doesn’t have a child with Down Syndrome, and I thought, “Wow, she really gets it!”  You can read her post about it here….

There are parents out there too who are dying to adopt a child with Down Syndrome. Who know there’s something special there that they’d love to add to their families.

But still, this is the minority.

Most people don’t want it to happen to them.

I once had a woman tell me all about her having been tested because of her older age when she was pregnant with her children. That I shouldn’t feel guilty for not having the testing because I was so young at the time of my pregnancy. I responded by saying we are so happy Annie is here and we love her the same as we would had she not had Down Syndrome. And this woman turned to me and said, “Of course you do Dear, she’s here now. You didn’t know, what can you do?” This stung. This woman made the assumption that had Mike and I known, we would have made a different choice. The choice she would have made had her prenatal testing been different. How awful.

Before Annie, before Mike even, I remember getting emails from my pregnant friends excitedly sharing the news that prenatal testing showed no birth defects, nothing wrong, that everything was perfect so far. And I was happy for them of course.

I know it’s not something you wish for. I know I didn’t. Just like the mother whose blog I shared, I too sat in a silent room at my twenty week ultrasound, waiting for the doctors to tell me what was “wrong” with my baby. There was a marker, a big one. One that indicated a 25% chance for Down Syndrome and serious heart defects. Unlike her, I cried. I prayed, “Why me? Why this baby, our baby?” I confess the heart defect was much scarier than the Down Syndrome, but still, I didn’t want either.

And that’s the sad truth. Most parents don’t want to hear this news. That the news is something that comes along with the option to terminate or give the child up for adoption. That doctors and society claims that the quality of life of an individual with Down Syndrome is less. This topic I will be discussing later this month.

But for now I need to get back to my point. Which I am having a hard time staying focused on today.

Most people don’t wish for a child with Down Syndrome because if nothing else, it comes with more challenges than a typical child. I won’t lie, I won’t sugar coat it… it does.

It is hard. It’s hard to watch babies younger than yours walk and talk and climb, when yours is nowhere close. It’s hard to answer the questions that always come, “Why isn’t she walking? What’s wrong with her?” “Why can’t she drink from a bottle?”  It’s hard to worry about hearts and other health issues that are more common or associated with Down Syndrome. It’s hard not knowing when milestones will be reached. It’s hard.

It comes with more challenges. Parents of children with Down Syndrome never stop advocating for their children. We have to fight for the best therapies, best interventions for school, best opportunities to help our kids work to their full potential. We have to convince others, unfortunately, that their potential is tremendous. We have to work with our children everyday on fine motor skills, gross motor skills, speech.  So, it’s more challenging.

It does hurt. It hurts to think of your child being treated differently or made fun of because of her diagnosis. It hurts that most people are glad or grateful  it’s not them. It hurts that babies can be and are sometimes chosen to be terminated because they are like Annie. The worry for their future can hurt. It hurts when people say insensitive things. It hurts.

It is scary. It’s scary when doctor after doctor knocks on your door at the hospital just hours after your baby is born to tell you all the tests that need to be done. It’s scary to think about your child’s chest being cut open for surgery on his or her tiniest heart. It’s scary to think your child may never walk. It’s scary to be uncertain if your child will be able to hear. It’s scary to worry about all the health issues your child “might” face because they have Down Syndrome. It’s scary.

It is more work. It’s more work to schedule therapies and appointments and testing that a typical child wouldn’t need. It’s more work to find alternatives for feeding or head support or communicating. It’s more work to find extra hours in the day to work on development and continue what therapists are teaching and wanting us to practice. It’s more work.


If you’ve every felt the great satisfaction and tremendous pride after being faced with something extremely challenging and working your butt off to ensure success or at least felt the self-gratification from your enormous efforts, you know what I am talking about. Some people choose the easy road. Would rather have everything handed to them. Luckily I learned far before Annie came into my life, that that’s not the life I’d want. That hard and challenging and scary, sometimes even hurtful things in our life not only bring the best opportunities for growth in life, but are the greatest gifts. I wouldn’t take away any of the challenges, heartache, or hard times in my life. And there have been many. I wouldn’t change them because they have shaped me. Have taught me about life and love and how to treat people, but more importantly about the importance of a positive attitude.

An incredibly wise former student of ours here shared a quote today  that applies to what I am trying to say here perfectly. He wrote, “The happiest  people don’t have the best of everything. They just make the best of everything.”

So as for painting too positive a picture, I don’t think the authors of such blogs are lying or hiding anything. It’s just a different attitude. Not everyone has this attitude and that’s okay. There are parents out there that would take the DS away if they could. And that’s okay too. Some have a harder time with acceptance and hurt and challenges. Totally normal.

And maybe some people don’t agree with presenting such a positive picture of life with Down Syndrome when there are obviously more challenges. But I don’t think we’re leaving anything out. For us anyway it has been far more wonderful and beautiful than I can ever imagine life without it.

And it’s always better with a positive attitude. When I am sad that Annie can’t walk, I find a way to be grateful for the extra time with her in my arms. When we finally get that therapy we worked so hard for her to get, I sit back completely gratified and watch the progress that follows. When I think about people being mean and hurtful, well I think of it as a filter, Annie and I don’t want those people in our lives anyway. I have learned that people being insensitive is human and forgivable. Though there are health issues to look out for and worry about, we thank God everyday for the health she has now. We focus on the blessings not the challenges and being able to do that alone has been a blessing in itself.

I am stealing a quote from one of my favorite blogs. You can find her blog here.  And just like her Kelsi is to her, Annie is the child I never knew I always wanted! 

Missing Family


I met my husband four and a half years ago on a snowy and bitterly cold night in Philadelphia. I never believed in love at first sight, but standing there on my aunt’s freezing front porch as I answered the door to let him in, it happened to me. It would be months before we actually started dating; living in different cities neither of us wanted to start off with the distance between us. But about every three weeks Michael would fly to Chicago to play in his band with his buddies and we would meet up for a drink or a dinner or quick coffee. During our second meeting in Chicago over a beer and peanuts, Michael explained to me his plans to live and work abroad in Italy someday. Without a second’s thought, I reacted, “Well then, I think you should date someone else.” (I should remind you that at this point we weren’t even officially dating yet.) I explained that my family was my life, Chicago my home and I could never live far from them.  That if he wanted to fly me to Italy or anywhere else in the world six times a year that’d be just fine, but my family was the only place home could be for me and I would never leave them. I wanted my children to grow up like I did, down the street from cousins, constantly surrounded by family.

Funny how life doesn’t always turn out like you plan.

Nine short months after that very conversation we were engaged with plans to establish Chicago as our home. Nine even shorter months after we were married we learned we would be moving to Rome.

By then I was extremely excited about the opportunity to live in Europe and obviously more on board than I had been during my initial reaction to my husband’s dream job. When your other half has the opportunity to follow life’s dream, something that had been dreamt about years before you came into the picture, you give up anything to make that happen. You have to at least try. Right?

And it’s been great. I love my life here. There have obviously been ups and downs. My first four months living here I cried a lot. Didn’t know if I could really make this my home. Really missed my family. Mike has always been so supportive and his reaction to my tears was and is always, “You say the word and we’re on the next plane home.” That only made me cry harder. If he would do that for me, I needed to try harder. We came up with a plan (Ha! You’d think by this time I would’ve known better than to make “plans”). We decided that three years would be enough of an effort and that if by then Rome didn’t feel like home, we’d start making plans to return to the states. Annie was born and things were rocky for a bit. I was unsure if I could handle everything here so far from family. But as her therapies and doctor’s appointments continued to go extremely well, our new plan was “A day at a time.” If the day comes that we feel we’re not meeting Annie’s needs in Italy, we head home. She’s doing great, her therapists are great, we have no plans to leave.

We’re starting that third year right now. Year three in Italy. And as I boarded the plane this last September to head back to Rome after a long visit in Chicago, I thought. “Wow, I really can’t wait to be back home.” That’s when I knew. Whether we stay here only one more year or the rest of our lives, Rome has become my home.

And though I feel like we’re where we’re supposed to be, it’s still hard. It was hard during my pregnancy to not have the convenience to hop in the car and drive to my parents for a comforting meal. Even coordinating phone calls can be hard because of the time difference; so when I was sick during the last months of the pregnancy I couldn’t even just pick up the phone to vent to or cry with my mom or my sisters. It was unbelievably hard the day Annie was born to not have any family there. It was even harder to hear the news of her diagnosis with our strongest support system an ocean away. It was hard that my mom didn’t hold her first grandchild until she was four weeks old, even harder that my dad didn’t hold her until she was three months. It’s hard being away.

I miss them every day. But somedays are worse than others. This weekend has been especially hard. Maybe it’s because of the recent posts from my dad and brother. That I sometimes feel guilty for keeping Annie so far from all that love. I miss the Sunday brunches around Mom’s dining room table. I miss sitting on the porch with all five of my siblings laughing through the wee hours of the morning. I miss living just neighborhoods away from my sister and brother-in-law and the weekly, even daily dinners we’d have together. I even miss how much my brothers make fun of me when I am home. I miss coffee in the morning with Mom and Amalia and Kaylea or whoever’s up for it that day.  I miss the ability to see them everyday. Cause that’s how we are, if we can see each other everyday we do. Every minute we can be my siblings and I are together. My dad’s my hero, my mom my complete and absolute role model, and Molly, Kay, Danny, Tommy, and Bubba are my very best friends. I miss them so much it hurts.

Now that Annie has been added to the equation, it’s tremendously difficult. I miss watching her dance with her uncles every afternoon when they arrive home from work or school or the days events. I miss them fighting over who gets to hold her next. I miss watching them make her laugh and as they teach her new things. I miss the boys sitting with her teaching her about “great music” and compiling Annie playlists of the greatest artists of all time. I miss them all laying around the vintage record player listening with their ears as close as possible to “The Band” and “George Harrison.” I miss how all five of them will break out in song singing “Baby, now that I found you I won’t let you go. I built my world around you, I need you so. Baby Please don’t go. Babe I need you. Yes I need you!” Or “Here comes the Sun.” I miss Molly’s squeals every time Annie does something cute. I miss Kay getting Annie up in the morning or having her crawl into bed with her. I miss sitting back and watching all that aunt and uncle magic.

And I know Annie misses them too. In a glass case in our living room, on a the second shelf from the ground, sits two picture frames. In one frame sits her mom’s family, in the other her dad’s. All her aunts and uncles and grandparents in one spot.  Everyday since we’ve been back Annie crawls up to that case, gets up on her knees and knocks at the frames until I come over and get them down for her. She then holds them one at a time and carefully points to each family member’s face. She usually isn’t done until she’s pointed to everyone three times, and the dogs at least five times. She then gives each picture a kiss and we place them back on the shelf. Which reminds me, those frames could use a good wiping down.

I feel so blessed that Annie has two amazing sets of grandparents. Thirteen wonderful aunts and uncles. Two adorable cousins and one on the way. We are so grateful for all this love in her life. And we miss them everyday.

Letter from Uncle Danny


Today’s guest blogger is my brother, Dan. He’s the youngest of three lawyers in our family. He is being sworn into the bar in a few weeks and we couldn’t be more proud of him. Though nothing makes us prouder than the amazing uncle he is to Annie.  I’m not going to say much more about him because his letter says so much about the kind of person he is. We love you and miss you every day, Zio Danny! And your Annabelle can’t wait for the next chance to dance with you to The Felice Brothers’ “Radio Song.”

Dear Annabelle,

I write you at the request of your mother in honor of the second Down Syndrome Awareness month of your young life.  She did not specifically ask me to write you a letter but rather that I write something expressing how much you and Down Syndrome have beautifully impacted my life over the past year and a half.

I decided that the way in which I am most qualified to speak on the subject is in a personal letter to you. If the letter serves as nothing more than a concrete expression of how much you mean to me and how much I love you, then the letter will be 10,000 times more valuable to me than the time I have spent on it. And if by some miracle some wisdom or awareness is imparted onto someone then we will count that as a bonus.

Before I start I want you to know that it was with great pride and nervousness that I accepted this assignment. Pride because you and this cause mean so much to me and nervousness because contributing to a blog belonging to as talented a writer as your mom is a daunting task; but just as you do when your mom challenges you with a new and seemingly impossible task, I will let out one sigh and then give it hell until I can smile with pride at my effort.

In this month of Down Syndrome awareness I must ironically admit that my greatest sin in my response to your diagnosis was too much awareness, or at least the wrong kind of awareness. Before I sent an email to your mom expressing my sheer joy about your birth I spent hours researching Down Syndrome. I thought that the worst thing I could do would be to say the wrong thing and accidentally hurt your mom’s feelings. I read about and considered the possibility that you would have heart defects, learning disabilities, and other health complications. I let those things define you and that day. I celebrated the first hours of your life by imagining the difficulties you MAY face. What a terrible and unfair thing to do to you. Never before had I put a newborn through this exercise in my mind, why would I start with you?

But I did and I agonized over the wording of the email I sent your mom, trying to be extremely sensitive to your diagnosis. Hours later, I decided I was finally satisfied with the wording of the email. I read it out loud and began to laugh. I realized that the email was worded almost exactly as I would have written it had you not been diagnosed with Down Syndrome. And what should have been obvious to me from the beginning, and would have saved me a lot of time, was finally clear; it was clear that the response you and your family needed and deserved from me was simply the love and support I would give any child born to one of my siblings.

It is unfortunate that throughout your life you will be treated differently by people you meet simply because you have Down Syndrome, but as this happens try to remember two things: that most of these people are not bad people at heart and more importantly know that you have the power to teach these people about the beauties of Down Syndrome. I know you have this power because I have experienced you exercise it on me countless times. I admit that on the first day of your life I spent most of it thinking about heart defects and the learning and developmental challenges you might face, but then I met you.

From the first moment I met you the only heart I was concerned about was my own. It melted when I met you, skipped a beat the first time you shared your food with me, and I knew it would never be the same after your baby-hogging Madrina tried to steal you from me and you turned from her and hugged me tightly around my neck, letting everyone know you were not quite ready to let me give you up.  The only learning challenge I think about now is whether I can keep up with your sign language vocabulary and the only developmental issues that cross my mind is whether I can pull off your latest dance moves. Without even trying you opened up my eyes to the beauty of Down Syndrome and to the fact that those beauties are not really different than the beauties associated with any human life. I’m excited to watch and hopefully help you open the eyes of those who have not yet had the great benefit of knowing how awesome you truly are. 

Annie, I do not think that it is a great secret in our family that I have wanted to be an uncle for a long time. If your mom and dad would have had a shotgun wedding, I would have been on board because it would have meant I would have been an uncle even sooner. Having had a lot of time to dream about being an uncle, I developed some pretty high expectations for my future niece or nephew. I want you to know that you have already exceeded every one of them. People ask me all the time how it is to finally be an uncle. I always tell them that it is unbelievable but also a little scary because I never knew I was capable of the kind or amount of love I feel for you. You are the greatest gift in my life. Happy Down Syndrome Awareness month! I miss you so much!

So much love,
Uncle Danny

the power of a simple hello


The piazza was almost entirely empty – eerily empty for a Friday afternoon – as we cut through to the final destination of our bus stop. It was a perfect June day, not a cloud in the sky. I remember noticing a couple sharing a panini on a bench under an enormous palm tree. But other than that, no one. I remember thinking, “Where is everyone?”

I wouldn’t have noticed them had the piazza been in its normal hustle bustle form. After passing the couple and their prosciutto and mozzarella, there they were, the only people between us and our stop. They must have been twenty yards in front of us, walking ahead, not toward us.

And though I could only see the backs of them, I knew. The way you recognize things others wouldn’t because you have experienced it first hand.

An elderly father and his daughter walked hand-in-hand. Her head hung low, even from behind I could tell she wasn’t taking her eyes off the ground. Her stature was short, her head a bit smaller, her arms hung loose and short at her side. She looked slumped over, even from behind.

I don’t know if it was her stature, her walk, or just my intuition; but I knew. I knew she was like Annie.

I don’t know what overcame me that day. Maybe it was because, living in Italy, I hadn’t had that many opportunities to connect with other families with children with Down Syndrome. Because of my language barrier I have found it difficult to reach out to the programs and support groups here. I stick to the comfort of online support and attend meetings and playgroups only when I am in the States. It wasn’t that this was the first individual with Down Syndrome I had ever seen in Italy. Ever since Annie was born, I see and notice individuals with Down Syndrome everywhere. On the bus. At the market. Outside of churches. In restaurants. Living in our neighborhood. I notice, I always notice. I had just never reached out. Maybe I wasn’t ready; maybe I lacked confidence because of my inability to communicate in Italian. I don’t know.

But something nudged me that day.  I started walking as fast as I could without looking too anxious, Mike called out from behind me as he pushed Annie in the stroller, “Where are you going? What are you doing?” I ignored him. I was on a mission.

Somehow moments later I found myself just a couple yards behind them. The father must have been in his early seventies. White hair, wrinkled skin, a hunch to his walk, well-dressed, like most Italian men. The woman wore a long sleeved purple shirt and blue jeans with sneakers. Her hair was dark and graced the edge of her face and top of the back of her neck in a short bob. There was no conversation between the two of them as I approached.

I cleared my throat and then I thought, “Now what, you fool! You don’t even speak Italian!” But somehow the words exited my mouth. “Mi scusi. Buona sera.” The father turned and I recognized the worry in his eyes. The fear I feel when I am not sure how a stranger will react to my daughter’s syndrome that is so obvious because of her appearance. “Will this stranger cringe at the sight of her difference and excuse herself and walk away? Will she reject the young woman, my daughter, attached to my arm? What does this woman want with us?”

But then the girl, who moments before had her eyes glued to the floor seeming to avoid all eye contact, sheepish and shy, immediately transformed. She turned to me and held her head up high. She was in her early forties. She had a beautiful complexion and deep dark brown almond-shaped eyes. She smiled and without a moment’s hesitation dropped her father’s hand and walked straight up to me and reached out with absolute confidence and kindness. She introduced herself and shook my hand. She asked my name and that’s as far as I understood. I panicked…”Don’t just stand there woman, say something, she’s waiting.” The father was apparently confused by this encounter. I explained that I was American and couldn’t speak much Italian and turned hoping Mike and Annie were close so he could save the day like he always does and be my translator.

They were. And as Annie rolled up, I saw the recognition in the father’s eyes. The confusion faded away, was replaced by an understanding smile. And before I knew it, the woman was shaking Mike’s hand and playing with Annie’s toes. She confidently introduced herself to them and asked how they were doing. She told us excitedly of her and her father’s plans for the day. They were going to an amusement park to ride all the rides. She shared what a fun and great day it had already been and that she planned to ride her favorite ride at least three times. The purest joy and proudness radiated from her as she told these strangers about her day.

We spoke in the middle of the piazza for a few minutes and then her father urged her on, reminded her that those rides were waiting. There was no mention of the words Down Syndrome between us that day;  just two families bumping into each other and sharing a friendly encounter. We walked together then for a bit and when we arrived at our stop said our goodbyes. The father whispered, almost only lipped, the word “Grazie.” I am sure it was merely meant as a “Thank you, it was nice to meet you.” But as they crossed the street to walk away, I noticed the girl didn’t resume her slumped over, face to the ground stature. She walked with her head up and seemed even a little taller than before. So maybe my simple “Hello” made a small impact. Maybe it made her already wonderful day a bit brighter. I’d like to think so, but don’t know.  I’d like to think that we gave them even a little bit of what they gave us that day.

What that simple hello did for me, I will never forget. It reminded me that Annie will bring so many special encounters like this. That families of individuals with Down Syndrome share an incredibly deep and special bond. It’s like we already know each other without even speaking. It gave me the confidence to reach out more often, language barrier or not. It showed me the tremendous potential of confidence and kindness in Annie.

But most importantly, it gave me a glimpse of our future with Annie. Here’s a parent of an adult with Down Syndrome, with years of experience beyond any I have met, and the best part is: he’s on his way to take his forty year old daughter to the amusement park. Excitement painted on her face like a six year old’s at Christmas. Her zest for life and fun completely contagious. And I thought, “Wow. I can’t wait!”

Annie already radiates so much excitement and joy over the littlest things. Seems so content and happy with whatever each day brings. I am certain she’ll be making sure we’re having fun and living everyday to the fullest for the rest of our days. We already call her our “roller-coaster baby” because of her sheer joy at being tossed in the air and her non-stop laughter  during a bumpy stroller ride.

She may not be able to do certain things that other eighteen month old toddlers are enjoying, like being put down to go and run around a playground, or climbing the steps to a slide, or jumping on her own through a sprinkler. But my bet is that we’ll catch up. We’ve got plenty of time. That Annie will have and experience all that fun a million times over. And that when she’s forty, she’ll be dragging us to the roller coasters. That she’ll constantly be reminding us that life is a ride and to enjoy it everyday. And baby girl, the ride’s already been so great.

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