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.

Love,
MRB

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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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…https://ourromababy.com/2011/10/05/caught-it/

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.

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…. http://momastery.com/blog/2012/07/07/birth-story/

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.

BUT IT’S SO WORTH IT. IT MAKES IT THAT MUCH BETTER.

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. http://kelsicorner.wordpress.com/  And just like her Kelsi is to her, Annie is the child I never knew I always wanted! 

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.

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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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.

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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….