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HAPPY WORLD DOWN SYNDROME AWARENESS DAY!
Little Blue Stroller
We recently returned from a five day get-away in Paris. While roaming the incredibly charming sidewalks, taking in the stupendous sites, and gazing at famous works of art; I couldn’t help but have to stop to catch my breath. Have you ever felt so completely overwhelmed that you can’t breathe? Usually when this happens to me, it is in times of great sadness; during my hold-nothing-back sobs where there just isn’t room for air. Like when my grandmother passed away, I just couldn’t catch my breath. Or when the three doctors and that nurse walked in to the hospital room with grim faces the morning after Annie was born to deliver the news of her diagnosis. It was as if all the air had been sucked from the room.
In Paris it was different. I was overwhelmed to the point of breathlessness in the completely opposite way. As we walked along the Seine, with the towers of Notre Dame in view, I had to stop to adjust my coat. As I looked up my new view included the Seine, Notre Dame, and Michael pushing Annie in her little blue stroller. Tears welled in my eyes, and I felt more lucky and at peace in this moment than I ever have.
Annie’s little blue stroller. The stroller we purchased just a little over a year ago before our ten day trip to Tunisia. After trying to haul Annie’s enormous (“spaceship” as her dad calls it) stroller onto buses and trains and squeezing it through crowded alleys, we decided we needed the smallest, lightest-weight stroller available. Annie’s first stroller “system” cost almost 450 euro. (And we never use it!) We forked over 59.90 euro for our little blue one.
The stroller is just over a year used. But you would never guess it. It looks like it’s been handed down for years, like the little bums of several little tykes before her have left their imprint. The wheels are worn, the light blue turning a pukish-gray, stains from gelato and spilled milk and Polish Zurek soup. From Tunisian cous cous and and Baklawa. From a hot chocolate from London, and juice from a fresh Sicilian blood orange. Sometimes as I clean off the crumbs from the crackers she loves to snack on, it’s as if I can feel the sand from the Sahara or from the shores of Ischia that once occupied the crevices of the seat.
I have a love/hate relationship with this little blue stroller. I love that I can lift it onto a bus with Annie strapped in and my enormous diaper bag hanging from the back all by myself. I hate that the wheels often get stuck making turns impossible. I love how easy it is to close and open and the tiny space it takes up. I hate that it shows every stain and ounce of dirt. I LOVE all the memories we’ve made with it. I HATE it for the guilt that consumes me for having Annie in it for too long, especially during our trips away. I LOVE it because every time we take it to explore a new city, I am reminded of all the places Annie’s experienced. I HATE it because I CAN’T go without it. Annie is still not standing on her own, which makes it impossible to put her down. This little blue stroller is essential if we are going to leave the house. I use it everyday. Rain or shine, this little blue stroller is always there, a constant in our lives. And for this, I both love it and hate it.
I can’t sugar coat it. I get sad. There are days when we’re strolling with our little blue contraption and we run into a group of children playing in the park and I get choked up wishing I could undo her buckle and watch as she runs towards all that fun. In Paris we were taking some photos in a beautiful piazza and a mother was sitting on a bench as her two children (one at least five months younger than Annie) were running and chasing each other around the fountain. My heart broke a little bit.
Which brings me to my back. It’s not easy having an almost two-year-old who can’t walk, let alone stand on her own. If we’re out of the house, she’s either in the stroller or my arms. She can’t be in the stroller for long periods without getting cranky, like any kid. And so my nights are filled with icepacks and pleas for back rubs from my husband. My back is a bit broken too.
I could sit back and say, “Enough, it’s too much, we need to slow down.” But then I catch a glimpse of our tiny folded up stroller in the corner. And we’re off.
Annie may still be extremely dependent on her little “Blue,” for now anyway. She may not be able to run around fountains, or get on a tricycle, or climb the steps to the slide. Or walk hand-in-hand with another toddler her age. She may not be able to stand as she feeds the ducks with her dad.
BUT, oh the places and things she has seen in her little blue stroller.
In a few weeks my little girl will turn 2. The time has flown. It doesn’t feel that long ago that I was in a hospital bed with her tiny body in my lap, and I couldn’t breath because I was filled with so much worry that her diagnosis would make her life harder, sadder. Everyday since her birth has been better than the last. Her life amazes me more each day. We know she’ll walk one day and that she won’t always be so dependent on wheels. But for now, we can’t wait to see where that little blue stroller takes us next!
Thankful for BOWS
Up until about a month ago, any time I tried to put a bow in Annie’s hair she would immediately reach up and pull it out. Her dad feels the same way and usually helped her free herself from the girly hairpieces.
In fact, Annie usually greatly dislikes having anything on her head. Unless of course, it is her beloved Kermit hat. She’s a super fan of the Muppets, so for Halloween we dressed her as her favorite green friend. Since then, we’re pretty sure she’d wear Kermit everyday, and often does.
As I have written before, Annie has acquired quite the wardrobe. Up until about a month ago, I don’t think the kid cared what she wore as long as I got through the painful process of getting her dressed as quickly as possible.
She’s finally reached the stage where she totally cares and loves to see herself in the next fabulous outfit. It’s a hoot and way too much fun. After she’s dressed she pulls herself up to sitting position and checks herself out in the mirror. She tilts her head to the side and flashes a ridiculous flirty grin as if saying “OH YEAH, I’m SO cute!” Her hand usually finds the side of her face and hair as if she’s primping herself. She fluffs her dress or skirt or gently pats her top, showing that she’s pleased by her attire.
She doesn’t LOVE the process of hair ties and bows. But is super understanding of the results to come. As soon as I’m done twisting those bands around her pigtails, or clipping a barrette to her hair, she gently pats at them and then checks herself out always pleased to the point of laughter.
This morning when I was changing her diaper she kept grabbing my hand and pointing it in the direction of her bows (that are kept so neatly in the perfect spot thanks to one of many thoughtful gifts from my friend Tiff). As I tried to just finish the process of the diaper change, she began getting agitated and started to grunt as she continually grabbed my hand and urged it in the direction of her frilly accessories. “Oh, you want a bow for your hair?” So I reached up and grabbed a hot pink one and placed it in her hair, lifted her up so she could admire herself. But she kept grabbing my hand requesting another and another. If I picked a blue or yellow bow she pulled it out and threw it on the floor or pushed my hand away until I understood that today is a “Pink ONLY” day.
Here’s the results of this morning’s bow debacle.
It’s funny, I rarely think about how devastated we were the first weeks of her life. But this morning for the first time in a LONG time, I remembered how scared I was that our little girl wouldn’t be able to communicate with us. And I couldn’t help myself from being bent over with laughter. I’m pretty sure we’ve got the communication thing down! Annie may be grateful for bows today, but I am thankful that Annie is a pro at letting us know just exactly what she wants!
Zia Rachel’s Post
Rachel is Annie’s youngest aunt. Mike’s youngest sister. She’s also spent the most time with Annie out of all of her thirteen aunts and uncles. We were so blessed to have Rachel studying here last Spring. She lived for four months just across the courtyard and we saw her everyday she wasn’t traveling outside of Rome. We got very used to having her around. And now that a new group of students is here her absence seems greater than it did when she left last May.
Annie loved having her around. It was amazing to watch the two of them interact everyday for almost four months straight. Makes me feel a little more guilty than I already do for having her so far from her amazing family. Rachel we love and miss you everyday. We are forever grateful for the time we got to have you here with us. Thanks for your post!
It has taken me a long time to write this blog post for Colleen. Practically ever since I left Rome, I have been afraid to confront the feelings I have about my sweet niece. I am so unbelievably jealous of the students at the John Felice Rome Center right now who are watching my niece grow and develop from one day to the next. Part of me thinks it’s not fair; that Annie’s “real” aunts and uncles should be the only ones who get to spend time with her, but then I remember what I learned during my semester abroad: Annie is everyone’s niece.
The JFRC is a family, and Mike, Colleen and Annie are the epicenter of that family. As students, everyone is invited to love Annie, to hold her, to play with her, to sing to her, and to volunteer to babysit her so Mike and Colleen can have one of their rare dates. Sure, I was actually related to Annie by blood, but every one of my classmates at the Rome Center was related to Annie by love.
When I think of my niece Annie, I immediately think of two things. The first is the wonderful time we were able to spend together; the second thing Annie makes me think of is the song “Sweet Child O’ Mine” by Guns ‘N Roses. The first one is pretty obvious, but if you look at the lyrics of “Sweet Child O’ Mine,” I think you will all agree that certain parts of the song were written for my gorgeous niece. She’s got a smile it seems to me/ Reminds me of childhood memories/ Where everything was fresh as the bright blue sky/ Now and then when I see her face/ She takes me away to that special place/ And if I’d stare too long/ I’d probably break down and cry/ Oh sweet child o’ mine.
When I returned home from my semester abroad, I had a hard time adjusting to life, not because I was a jobless college grad with zero access to decent espresso, but because I had absolutely no idea how to live without Annie. Every night I would go on Facebook, look at the pictures Colleen, my friends or I had posted of Annie, and “break down and cry.” I’m slightly ashamed to admit that I spent many a summer night weeping alone at my computer.
For those of us who are fortunate enough to have lived in Rome, I don’t know if life ever really “goes back to normal.” For those of us who are fortunate enough to have lived in Rome with Annie, I KNOW life never “goes back to normal.” I can still get teary eyed when I look at pictures of Annie, and I am definitely still prone to fits of jealousy when I see current JFRC students with my niece in their arms. When it all just seems like too much I put on “Sweet Child O’ Mine” and remember that I know what it’s like to see Annie every day, to have her reach out for me to hold her, to have her recognize my face and smile at me because I’m me. Those are feelings that no amount of sadness or jealousy can take away from me.
Pulling to a STAND!
I was all ready to sit down to finish a post I was writing about Annie’s infatuation with the Muppets, when I was beckoned by my daughter’s heartbreaking sobs to her room.
Since we’ve been back from our trip from Poland, we’ve been having a little bit of a hard time with the regular bed-time routine. Since we’ve returned we still do all the things we used to do. Bath. Medicine. Brush teeth. Bedtime stories. Hugs and kisses. At least one lullaby. Tuck her into her crib and get her kinder music playing. And usually she puts herself straight to sleep.
But for the eight days we were gone, Annie got used to falling asleep in our arms or laying between us. She’s having a hard time putting herself to sleep. For the past week, I’ve been resorting to having to get her out of her crib and laying with her until she falls asleep. I’m not worried. This kid has traveled so much and had to readjust so many times; I know we’ll be back on track soon enough. But the sooner the better.
So tonight, instead of caving and getting her out of her crib, I decided I’d lay in the bed and just be in the room with her. Within seconds of me entering the room, she had reached her hands to the top of the crib and pulled her little self up to a stand!
I’ve been feeling guilty lately, because when we travel, Annie’s therapy gets put on hold. This is actually the longest lapse in therapy we’ve had. When we were home for almost two months we decided to take a break. Sometimes her American therapist and her therapist here in Italy have very different approaches on things. For instance her American therapist pushes a bit harder, whereas our Italian therapist would rather do things ver slow but completely correct. (I’m actually sure she’d be appalled that Annie’s knees aren’t more bent in the stand she held tonight.) While we love both of her therapists, she sees her Italian therapist much more and we like the “slow but steady wins the race” approach. So when we returned in early September we were anxious to get back in the routine with her. But unfortunately Annie’s therapist has been very sick and we’ve been having a hard time finding a sub. So I’ve been playing the role of physical therapist along with the students and Mike’s colleagues. She hasn’t seen her therapist in over three months. Much too long!
For the past two months we’ve been seeing so many “almost’s” as far as pulling to a stand is concerned.
This one’s from just a few days ago.
Every time we go away though, it seems as soon as we get back home, she makes a huge improvement. And tonight, once again after a long trip away, she’s reached another milestone. And like there always is when she accomplishes even the littlest things, there was exuberant celebrating.
Annie can be pretty stubborn. I’m not sure that the next time we’ll see her do this will be any time soon. When she was eleven months she got up on all fours with her belly off the ground and did the “I’m getting ready to four-point crawl” rock back and forth for almost two full minutes. We were ecstatic! Her therapist ensured us this meant she was ready and would be crawling on all fours any day. Eight months later we’re still waiting!
She’ll get there, just like I know she’ll be pulling herself up to a stand in her crib again.
Goodnight from one happy momma!
Padrino Tommy’s Post
I can’t believe October 31st is already here. What a month it’s been. 31 straight posts to bring awareness. Awareness that Down Syndrome is a precious gift not to be mourned or tossed aside or hidden or terminated. A gift that, if we’re lucky enough to have in our lives, gives us the ability to and teaches us to celebrate everyday, to love deeper, to appreciate life on a new level we never imagined.
My hope is that, through the telling of our story and the stories of so many other families who also share with the world what a gift Down Syndrome really is, the stereotypes and stigmas society has placed on individuals with Down Syndrome will be lifted and soon disappear. We have reached our goal when a diagnosis means in the eyes of all society a wonderful blessing, an extra bonus. Because that is what it is. Yes it comes with more to worry about and a little more work, but the joy that comes with it outweighs that. My hope is that when doctors detect a marker, whether prenatally or after birth, their first words will be “What lucky parents you are!”
Unfortunately 31 days is just not enough. I have so much more to say and so many more guest posts to share. So I guess we’ll just have to flow over into November. Thank you so much for following and reading this month. If you ever know someone who is facing a prenatal diagnosis or has received a diagnosis at birth, please share the stories of Annie with them. Please offer them to reach out to my family, I’m always here to speak to anyone.
I am overwhelmed by the words that have been written by others about my daughter and my family. They continue to come and I will continue to share. Though October is over, please continue to follow our posts through November.
For now, here’s the last post for October. Post #31.
Today’s guest author is Annie’s godfather. My brother Tommy. I would consider that since we were little all of my siblings and I have been extremely close. It’s just so amazing to me that as we have grown and left home and lived farther from each other, we only seem to be constantly reaching new levels in our closeness. I have been extremely blessed by God with the family He chose for me. There isn’t a cousin, aunt, uncle, or grandparent I don’t feel close to. But my parents and my siblings are my greatest gifts.
When I found out I would be moving to Rome, an ocean away from everyone and everything I knew, my greatest comfort was knowing that my second youngest brother would be living there too for the first four months. Actually, we were dropped off together at O’hare for our separate flights to Rome just hours apart. I leaving for a new home, Tommy for a four-month semester abroad. Before I knew of my pregnancy, the two of us had BIG plans for traveling the world together while he was here living just neighborhoods away.
Before I left for Rome I sat down with each of my immediate family members to tell them the news of our pregnancy. If I could tell them in person, even though I’d be sharing the news earlier than suggested, I would. The only family member I didn’t tell was Tom. I knew he’d be in Rome and decided to save the news to share with him on his birthday in his favorite spot in the world; sitting on the Spanish Steps. I’ll never forget the look on his face when sitting next to him on the steps he handed me a drink which I had to refuse. “Come on, Coll, it’s my 21st Birthday!” “I know Tommy, and I have some special news to share with you. What do you think is the only thing that would keep me from having a drink with my brother on his 21st?” I’ll never forget any of my siblings faces when they heard the news for the first time, but Tommy, Tommy’s will be forever imprinted in my mind. I’d never seen him so ecstatic. He was beaming. If this is what he looked like on the day he found out he would be an uncle for the first time, I can only dream to be there to see his face on his wedding day or when he finds out he’ll be a father. Oh man, that will be the greatest.
The beaming and glowing diminished a little as he realized, “Wait! Do our other siblings know?” I am not sure he’ll ever forgive me for making him the last to know. But still, even that couldn’t wipe his enormous grin off his face.
After that night and a day-trip to Florence with just the two of us, plans changed. We realized quickly that me hopping all over Europe every weekend and staying in hostels and the exhaustion such travel brings would be impossible while pregnant. I was VERY sick in my first trimester and all those trips Tommy had looked forward to taking with his biggest sis would have to be taken with new friends. I could tell he was torn, on Sunday nights he would join Mike and me for Mass on campus and a home-cooked meal. I could tell he had wanted to spend more time with me, but I didn’t want to stop him from having the study-abraod experience he came to have. He traveled to 14 different cities in 16 short weeks. I loved meeting him for lunches or having him up to our home to hear all his stories. But it wasn’t what we had planned. I was supposed to be exploring all these new places with him.
Traveling together wasn’t the only plan that changed. In November, Tommy told me he had decided to stay for the spring term. I’m pretty sure he’d admit to anyone that though he loved Rome like a second home, the arrival of his first niece had more to do with this decision. There would be family here when Annie was born after all. This news and the news that my mother-in-law had booked a flight to be in Rome three days prior to Annie’s due date comforted me when Mike and I were scared to have this baby alone.
Tommy kept his last four weekends free, planned no trips, ensuring he’d be there for Annie’s birth. Annie had different plans. On Thursday March 31st, Tommy left with a group of friends for Amsterdam. On Friday April 1st, Annie was born. Tommy wanted to leave his trip early, but I wouldn’t let him. It was his last trip after all. So three days later on a Monday, Tommy arrived at the hospital to meet his new niece. My mother-in-law was on the first flight over and arrived Annie’s third day of life. I am so grateful these two made it while I was in the hospital. They were a much needed comfort and support those first worry-filled and confusing days.
In Tommy’s post, he shares some thoughts he had and feels guilty about having. Though he may have kept those thoughts to himself, I’d like to remind him of some things he said to me those first days. Tommy was my biggest rock, with only positive things to say. The first thing he said to me after a long silence of holding Annie in his arms as I watched him fall in love with her was, “On the way over to the hospital while waiting for my third bus, I saw a mother holding the hand of her daughter with Down Syndrome after what I assume was a pick-up from school. The young girl wore a backpack and the biggest smile you’d ever seen. Both of them looked happier than any other mother/child pair outside that school. It’s going to be ok.”
A few weeks later after witnessing his oldest sister fighting through her lowest low. The two of us took a break while Annie’s Nonna Beazley and Aunt Eileen entertained the baby.We headed up to the terrace to catch some sun and do some reading.
After about five minutes, Tommy put down his book and turned to me. He said “I know you’re hurting, Coll. But you’ll understand all of this soon, I promise.” Then he said something I’ll never forget, ” I always knew, not thought, knew that one of the six of us would have a child with Down Syndrome. I can’t explain it, I just always had a feeling, always felt this in my gut. I guess I knew our family was meant for it. I just always thought it would have been me.”
Looking back on what he said, I am not sure but, he could have meant two things. The first, I suspect is what he thought. That because our family is so close and strong we could “handle it.” That a baby with Down Syndrome would be so lucky to share in all our love. But I suspect my second thought is right. I don’t know why, but our family seems to be meant for the kind of love every family dreams for their children. To have sons and daughters that consider each other best friends. That would rather be together than with anyone else. It is no surprise then that a bundle of love so immense and pure as Annie would come streaming into our lives, making us realize there is even better out there than what we thought we already had.
Tommy, we love you. You are an amazing uncle and godfather. You will make an outstanding Theologian, your insight is truly an incredible gift. Thank you for always being there, always coming back to Rome, and for sharing your words.
It’s with a great amount of humility that I attempt to put into words the tremendous impact that my niece and Goddaughter, Anne Kathleen Beazley, has already had on my life. This is especially so after reading the previous posts in which other family members and friends, who are also lucky enough to have Annie in their lives, have so beautifully and heartwarmingly expressed the joy and happiness which Annie has brought into all of our lives and which Down Syndrome brings to the world as a whole.
It has only been 18 months since I first held Annie in my arms at the hospital, just days after she was born. It’s amazing to think that that occurred just 18 months ago. This is not just because those 18 months seemed to pass so quickly, but more so because it just doesn’t seem possible that all the goodness and delight that Annie has brought to us could be experienced in just 18 months. It seems like Annie has brought so much more than 18 months worth of joyfulness and exhilaration. But, I suppose this just kind of sums Annie up. Every moment you spend with her is filled to the brim with exuberance and elation. I swear that unrestricted smile of hers has the ability to shoot straight through you and completely melt your heart. It has the power to make me want to wake up before 8am during summer vacation so I can give Annie her milk. It has the force to make the entire family perfectly content to have The Muppets Movie play through for the eighth straight time just so we can see Annie dance and clap through her favorite scenes. It even has the force to get hung-over uncle Danny to change a poopy diaper, which is as a miraculous a feat as I have ever been able to imagine. Annie just seems to naturally bring out the best in everybody she comes into contact with. This thought takes me guiltily back to the first time I held Annie in that hospital room 18 months ago.
I was the only sibling who was able to be in Rome with Mike and Colleen when Annie was first born. I, like all of my siblings, have been excited to have a niece or nephew for as long as I can remember. When Colleen told me about her pregnancy seven months earlier on the Spanish Steps on the night of my twenty-first birthday I was absolutely ecstatic. It was the best gift I could have asked for. The rest of the night I was celebrating that news much more than my finally being of legal drinking age. I was just as intoxicated with the anticipation of future trips to the zoo, games in the yard, and nights spent baby-sitting as I was from the alcohol.
Seven months later though, I stood in the hospital room holding Annie in my arms completely sobered. It was no longer gleeful anticipation that pulsed through my bloodstream but fear and worry. I was scared. I was scared for Mike and Colleen and for the rest of my family but most of all I was scared for my niece whom I already loved unconditionally. I was scared that the world wouldn’t accept her. I was worried that people would mock and insult her and turn away from her. As the only aunt or uncle who was able to be with her I felt it was my duty to push those feeling aside as much as I could. As I held Annie I made a promise to her that her other aunts and uncles and I would always be there for her no matter what. We would always love her unconditionally. We would always accept her and always make room for her. As I look back to this moment I’m filled with guilt and shame. I thought at the time that I was being brave and noble, but what I was really doing was underestimating the completely and totally dynamic bundle of sheer joy that I held in my arms. Even in that moment, with her eyes still unopened to the world she was the beautiful and life-affirming presence that she is today, I just couldn’t yet detect it.
I underestimated her that day. I worried that the world wouldn’t accept her, completely oblivious to the fact that she would have absolutely no problem finding a place in the world. Annie faces none of the issues I worried about that day because when people see her smile, clap, or dance their hearts grow about twice the size. She makes her own room in people’s hearts. She makes the world that I was worried was cold and unaccepting seem naturally permeated with warmth and goodness.
I recently started a new quest in my life to become trained as an academic Theologian. Since I started school I have been incessantly reading books and attending lectures which attempt to give an answer to some of the most enigmatic human questions. Why is there something rather than nothing in the universe? What is the value of life? What is the ultimate meaning of it? How are we to live? I hope to dedicate the rest of my life to these questions and the reading list seems to have no end and no guarantee of finding any answers. Yet, when I look into Annie’s gorgeous eyes and see that absolutely enchanting smile cross her face these questions seem self-evident. Life is a gift of gratuitous love.
Uncle Bubba’s Post
Bubba’s my brother, my baby brother. Though it’s hard to call him that after reading what he has to say here. When I was ten my mom lost her sixth (and what she thought was her last) pregnancy when she was eight months pregnant. Because she had had five previous c-sections, six was the limit the doctors were permitting, it would be too dangerous to carry a seventh pregnancy. When I was twelve, into our lives came Bubba. Since I was about fourteen, I have always referred to Bubba as “Our Glue.” He has always had the capacity to hold us together through the roughest times. The baby boy who wouldn’t be here had that little baby girl entered our lives just two years before.
Bubba (James Thomas) has always had something extraordinary about him. A little wise beyond his years. An innate capability to understand others compassionately. When I was fifteen and the first boy in my life broke my heart, I remember sobbing with my head in my hands on the staircase. Before I could even hear him coming, into my lap crawled three-year old Bubba. He gently pulled my hands from my face, looked up into my red eyes and said “Colleen, I really liked Kyle too, but you can do better.” He was THREE!
When he was eleven and an avid tennis player traveling all over the country for tournaments, a hard-hit tennis ball hit him directly in his right eye. He lost all central vision in that eye, suffered from terrible headaches for years and had to give up the sport he loved. A year later when he found out he needed glasses and would have needed them despite the injury, and my mom turned to him after that appointment angry and upset saying “Bubba if you had had these glasses just one year ago, you wouldn’t be blind in that eye, the glasses would have protected you.” Bubba, not yet twelve, turned to my mom and said, “No ifs, Mom. It doesn’t matter, I am fine.”
When he was five I left for college. On the morning I was getting ready to leave home for the first time, Bubba pulled me into the living room and told me he had something for me. He got out his “Tarzan” cd and placed it in the stereo system and played the song “You’ll be in my heart.” He cried a little and gave me a hug I’ll never forget. I never thought a Disney song would forever get me choked up. Especially not one from the movie Tarzan.
After his injury, he put all that energy once devoted to tennis into acting. He quickly had an agent and lots and lots of jobs performing in some of Chicago’s oldest and most important theater companies. A supporting role in a Lifetime movie. In his teen years he established quite the resume. I am in awe of his talent, but blown away by his humility.
For two years while he was in junior high, I taught fourth grade at his school. We drove to work/school together everyday. And when he was just twelve, my baby brother became a best friend. I’ll never forget those two years with so much time with him.
Now that three year old toddler who made me laugh on the first day my heart was ever broken is nineteen! He’s studying theater and playwriting at NYU. He makes all five of his older siblings prouder of him everyday.
More importantly, long before Annie, my baby brother was the one teaching me so many important lessons about life. He lives every day to the fullest and doesn’t let any obstacle get in the way of his dreams while still treating others everyday the way he would want to be treated. If you meet him you would never know of his amazing accomplishments.
Bubba, I am so glad that Annie has such an amazing role model in her youngest uncle. But I am even more grateful that I have had such a tremendous role model in my own youngest brother.
We love you. Thanks for your post.
Annie has blue almond shaped eyes, chubby cheeks, chubby legs. She has two teeth, golden blonde hair, the goofiest smile. Ten little signing fingers, two music-loving ears, little wet lips for cow noises and kisses. The infinite, crazy love of thirteen aunts and uncles, two (soon three!) cousins, four grand-parents. The best mom and dad a kid could ask for. Hands that clap when she wakes up, a butt that goes up in the air when she sleeps. A cry that will break your heart. A laugh that will make your year. Down Syndrome.
These are some of the wonderful things that make up Anne Kathleen Beazley. The parts of the whole, equally weighted, that by some miracle were put together to become the most delightful person I’ve ever known.
Annie is (we all are) a mosaic. The small, intricate, unique parts of her are beautiful on their own but together they create something bigger, more beautiful, transcendent.
You may see in Annie’s mosaic, a tile you’ve never seen before. It may be a different color, a different shape, a little shinier than most. You may be drawn to it; interested in or unsettled by its difference. You may find yourself focusing on this piece of her and I don’t blame you. It’s fascinating, unique, beautiful. But, please, take a step back. Expand your gaze. You’re missing the show.
Looking at Annie and only seeing Down Syndrome is like looking at the Sistine Chapel and only seeing brushstrokes.
But please, don’t ignore the tile. After all, you wouldn’t, you couldn’t, ignore her beautiful blue eyes. It’s crucial, pivotal, essential. Without it something would be missing. Like Rome without the Trevi Fountain, Annie without Down Syndrome isn’t Annie. Rome would still be an impossibly amazing city, and Annie would still be my niece who I would love without end. But the Annie we’ve been given—and of this I am perfectly sure–is the best version of Annie there is.
If you are willing to expand your gaze, if you are able, (really it’s pretty easy, Annie does most of the work for you) in front of you will appear the most magnificent sight. You will see a girl who in the morning opens her eyes, remembers the world exists and that she’s a part of it, and claps and squeals for joy. You’ll see a girl who always shares her food with her uncles. Who loves to make her parents kiss. Who dances her heart out. Who lights up when her dad walks in the room. Who has some deep personal connection with the Muppets. Who can wash away your bad day with a smile and a pat on the back. Who has stolen the hearts of us all without saying a word. Who brings an impossible amount of joy to everyone she comes across.
You’ll see Annie. Beautiful, playful, happy, infinitely-loving Annie. In full view.
I remember the first time I laid my eyes on her, completely, fully. My eyes swelled, my heart pounded, my head became light, and I had to leave the room. I was overwhelmed by the amount of love I felt for her and from her. I couldn’t understand how so much love and joy could come out of one little girl. I still don’t really. But I have a feeling it might have something to do with that beautiful, unique, precious little tile.
Loving Annie….Molly’s post
Today’s guest author is Annie’s godmother, my sister Amalia. I can’t start writing about her for today because this post would then be three times as long as it already is. Molly, there is no way I could ever put in words anyway all you mean to me and all you have done for us. Thank you for being my best friend. Thank you for all your love, even the tough love I often need the most and that no one but you can give. Thank you for being there every step of the way during our pregnancy and crazy past two years so far from you. But mostly, thank you for loving Annie the way you do. We miss you everyday!
It started over two years ago, when Colleen shared the exciting news that she was pregnant. It somehow made that very difficult week, when my best friend would be moving 5,000 miles away from me, a lot easier. The joy I felt moments after Colleen called Kay & me upstairs to join her in the bathroom, to show us those two precious pink lines, really carried me through having to say goodbye. It’s funny how I used to resent having to share a room with my messy older sister. Looking back I know how lucky I am, to have shared everything with her. Before she married Mike, we even chose freely to be roommates. Even though she was still messy, those were two of the best years of my life. When Mike and Colleen lived in Rogers Park, they had Patrick and I over for dinner once a week. I sort of took for granted that I would get to see them whenever I wanted, which is why my heart sank when they told me they were really moving to Rome. I wasn’t sure how I was going to handle her being so far away. Which is why the distracting news of the pregnancy was so bittersweet. I was going to be an aunt!!! But from a very great distance.
I think expecting the baby made it easier on my entire family. We were able to focus our thoughts on this very happy news. It took away from the sadness of missing Colleen and Mike. We were also excited for them, creating a life for themselves in Europe. The fact that their family was growing made that year all the more special.
They left in August. In December, somehow my parents, four siblings, and fiancé came up with enough funds and vacation time to visit the Beazleys in Rome for Christmas. God bless Mike, as he welcomed 8 of his in-laws into his three-bedroom apartment for ten days. When we arrived, I was overjoyed to see Mike, Colleen, and the baby bump! I had a rough flight over, so my family went out to see the city, Colleen and Mike went for their 20-week ultrasound, and I took a nap. I woke up from my nap in a jet-lagged fog, hearing my sister crying as she sat down on the bed next to me. The ultrasound revealed that the baby had a two-vessel umbilical cord, meaning there’s a 1 in 4 chance that the baby has Down syndrome. I wasn’t worried for a second, but it hurt me to see my sister so scared and devastated, instead of being able to enjoy the pictures they came home with. Looking back, I regret so much what I said to her in an effort to provide comfort. “Colleen, I’m sure everything’s okay, I’m sure she doesn’t have Down syndrome….” I told her to just think positively, and try not to worry until there’s something to worry about. I never entertained the idea that the baby may have Down syndrome, and if that’s the case, then everything will still be okay. Of course I knew that statement to be true… as a pediatric nurse I’ve had the privilege of caring for (and loving) sick children with Down syndrome. But I never let my mind go there. I couldn’t bear the thought of Colleen having anything but a perfectly healthy baby. So I refused to believe that maybe this baby, who I already loved so much, could have a genetic condition, and many medical problems and life challenges that would go with it.
Colleen and Mike were faced with a very difficult choice: have an amniocentesis to facilitate further diagnosis, or forgo the invasive genetic testing, knowing they would not find out anything until the baby was born. As a healthcare provider, I respect genetic testing, and the decision that parents make during their pregnancies to investigate and rule out chromosomal abnormalities. I understand that parents want to be prepared, and sometimes the more information we have, and the sooner we have it, the better we can take care of the patient. But I am extremely proud of my sister and brother-in-law for the decision they made, refusing to allow even the slightest risk of complications for a procedure that would tell them one of two things: 46 chromosomes, or 47. Because 46 or 47, we will love this baby just the same. The only thing they didn’t know, that none of us knew, was that the 47th chromosome would be the greatest gift that any of us would ever get in life. The kind of gift that is so good you could never want for it, because you never knew there was something that good for you to have.
The rest of our Christmas trip in Rome was amazing, and Colleen bravely kept a smile on her face to ensure that it was. We all got to feel Annie kicking through her belly, making us realize how soon we would be aunts/uncles/grandparents. Saying goodbye again was hard, knowing Colleen would be bringing this baby into the world a few months later, without us by her side.
I got the phone call extremely early in the morning on April 1st, Mike informing me that the baby was coming a month earlier than expected (no fooling), and Colleen was having a c-section within the next hour or two. On April 1, 2011, I experienced the most extreme emotions imaginable, the highest of highs and the lowest of lows. At some point in the afternoon, Mike called me again, announcing the arrival of my first niece, Anne Kathleen Beazley. I was bursting with happiness, but dying inside that I wasn’t there to see her. Colleen eventually called me later that evening, sounding worried. The doctors never said anything, but she was worried Annie had Down syndrome. Again, I regrettably tried to comfort her by telling her that I’m sure she doesn’t, if the doctors have not told her, and she doesn’t have certain obvious features, then everything is okay, Annie is just a healthy baby…no genetic condition to worry about.
I went to bed happy, so excited to be an aunt. At about 4am, I awoke to another phone call….my hysterical sister on the other end of the line. I will never forget that horrible feeling…..the ache in my heart, the gut-wrenching feeling of helplessness and fear. The kind of feeling you get when someone you love is completely devastated, and there’s nothing you can do to make it better. I tried to ignore these sharp pains and searched for words for my sister, and all I could find, all that I had, were my own hysterical cries to echo my sister’s. I like to think that maybe I could have been stronger, had I been there in Rome, at the hospital, with the ability to just put my arms around her and give her a hug. The ability to hold Annie in my arms, to help convince my sister, a terrified new mother, that everything was going to be just fine. But I wasn’t there. I couldn’t give Colleen a hug; I couldn’t hold Annie in my arms. Those were the hardest five minutes of my life. All I could do was cry when my sister needed me the most. I have no memory of what I said to Colleen that morning, but I hope that during that hour-long talk I provided her with the support that she needed.
After we hung up, I tried to go back to sleep, but the long list of potential medical problems that Annie may have was racing through my mind. What if she needs heart surgery? What if she has a seizure disorder? What if she has Leukemia? What if, what if, what if…..
And then it was “how?” How are Colleen and Mike going to care for this baby with special needs, so far from home? How are the Italian doctors going to give her the care that she deserves? How is Colleen going to cope with this, with no family other than Mike to help her? How is Colleen going to understand Annie’s treatment plan, when all she can say in Italian is “That baby can swim!!” ??
Then it was “why”? Why did Colleen have to face this scary diagnosis, so far from home, and so far from the support of most of her family? I never shared this with Colleen, but during these first few days I thought, “Why not me, instead of her?” I was naïve, and felt that I would be better prepared to care for a special needs child than Colleen would. I know these words make me seem like a terrible person, but I truly felt this way; not because I didn’t think Colleen would figure it out, or be able to handle it, but because I didn’t want her to have to. I wanted everything to be easy for Colleen, Mike, & Annie. During that first day or two, maybe because they were still in the hospital, awaiting results from the echocardiogram, renal ultrasound, and many other tests, I was viewing this diagnosis as a burden. I hate that version of myself, too bogged down with worry about Colleen’s emotional well-being and Annie’s physical health, to see that this diagnosis was not a burden, but a blessing.
I was surprised by who the person was to snap me out of this clouded state of mind. It was my mother-in-law, Peggy McSherry. I’ve lived my whole life knowing how incredibly lucky I am to have the most loving, dedicated mother on earth: Maureen Weiler. My first year of marriage has made me realize I am also one of the few lucky young women out there to have an amazing mother-in-law, one that only makes your life better; one that makes you feel loved just like your own mother does. On April 2nd I was crying a lot, really worried and scared. And when I shared the news with Peggy that Annie was born, she was smiling so big, and asking to see her picture. Then I said, “Peggy, she has Down syndrome.” For some reason I felt the need to say that, maybe because I was looking for comfort in my state of fear. Peggy didn’t flinch, she just immediately gave me this confused look with furrowed eyebrows as she said in her sweet high-pitched voice, “Well, that’s okay!” Like, ‘who cares? why would you even worry about that?’ And as my mind went to all the babies in the hospital with Down syndrome that I cared for after surgeries, and all the challenges they faced, I thought…well, doesn’t she know that this could be really hard?? But then I realized, it didn’t matter…all that mattered was loving Annie. So I forced myself to stop worrying about Annie, and just let myself love her. It was the best feeling ever, like the weight of the world being lifted off my shoulders. From that moment on, thanks to Peggy, I celebrated her life instead of fearing for it. I think that’s what this month is all about: celebrating life. I think it’s what my sister is working so hard to promote with this blog, and especially Down Syndrome Awareness Month. It’s about love and acceptance. During those first days of Annie’s life, I was guilty of what Colleen is trying to put an end to. I put Annie in this category of being a child with Down syndrome. As a healthcare provider, I’m trained to do this, to know which patients are at risk for certain conditions, so that we can detect problems early, and optimize health. But as Colleen has said so many times, babies with Down syndrome are at increased risk for having hundreds of conditions, all of which any healthy “typical” child could also have. Don’t let a diagnosis, whether it’s Down syndrome, muscular dystrophy, cystic fibrosis, or any other condition, define a child’s life. Just love them, as an individual, unique person.
I was wrong about so many things those first few days. I was wrong about how sick Annie would be. She really was, like I said to Colleen on April 1st, “just a healthy baby.” I was wrong about Annie not getting the care that she needed in Rome. It turns out, Annie has sees a physician that specializes in Down syndrome, something the vast majority of children in the states do not have access to. He’s amazing, he will not let Colleen & Mike say “Down syndrome” during the visits…he says, ‘”we don’t talk about babies with Down syndrome, we just talk about Annie.” She has a therapist that comes straight to her living room floor to play with her three times a week. Annie is thriving in Rome.
Most of all, I was wrong for thinking “Why not me, instead of her?” Colleen is the most incredible mother to Annie. As lucky as she is to have Annie in her life, Annie is so blessed to have Colleen, the best mom she could ever ask for. Despite my medical background, my love for children (especially Annie!), the endless hours of research and the 30 page paper I wrote about Down syndrome, I know in my heart I could never be as good at raising Annie as Colleen is. It didn’t take long for me to realize how amazing Colleen is with her. During the first 6 weeks of Annie’s life, before I was able to meet her, I Skyped with Colleen as often as possible. Each time, I saw her struggling to feed her baby. It was beyond frustrating, as Annie was so hungry but unable to latch on. Colleen knew that breastfeeding would be instrumental in Annie’s speech development. Colleen did not have a lactation consultant in Rome to walk her through this. She took advice from a friend, a lactation specialist, back in the states, via Skype and phone calls. Colleen, Mike, and her doctors worried about her failure to gain weight as expected. Still, she never gave up. Six weeks later, Annie figured it out, and Colleen was finally able to feed her baby without a constant fight. Colleen believed in Annie then, like she always does, like she always will.
Shortly after this breakthrough, I was able to fly to Rome to finally meet my niece. After arriving, Colleen placed this tiny baby in my arms. Annie opened her bright blue eyes and just looked up at me. Talk about love at first sight! I don’t think there are words to describe this new kind of love that I instantly felt. Of course I knew I would love my niece, but I was not prepared for this, I had no idea I could love anyone this much. My next feeling was fear; and that’s the first thing I said out loud, “Oh no! What if I don’t love my own children as much as I love her?!” And Colleen just rolled her eyes and laughed at me. “You will,” she said. But really…that fear has not gone away.
Today’s guest blogger is Annie’s aunt Ginny. Often it is by mere chance the most special people enter our lives. Ginny is one of those special “by chance” people in my life.
We married brothers. Because of this we share the same last name, the same in-laws that we adore, the same receding hairline on our husbands’ heads. All things I would share with any woman Mike’s brother Andy chose to marry. But because of the brothers we married, Ginny and I were brought into each other’s lives. Her presence in Annie’s and my life is one more thing to add to the list of how marrying Michael has enriched my life. She is an amazing friend, sister, aunt, confidant, shoulder, and example. I can’t go another word without mentioning her amazing husband, Mike’s brother Andy. They are one of the power couples always there for us when we need support and love. You two are so important to us, always there for us, and we couldn’t imagine life without you. We can’t wait to meet Annie’s new Beazley cousin soon! Thanks for your honest words. I know it’s hard to admit some of the initial feelings associated with Annie’s birth and diagnosis; but it’s so important to address if we are to change it for others. We love you Aunt Ginny!
As a teacher, I work with a variety of students with different needs. When Colleen was pregnant and Mike’s brother, Andy, and I heard there was a possibility of the baby having Downs Syndrome, we both had very conflicting emotions. My first thought was “There isn’t a more perfect couple for that baby” and I still believe that to be true today. My second thought was fear. Not fear of Downs Syndrome, but fear for the future and the unknown. Fear for how this baby would be treated, looked at or judged someday. Fear of how other adults or children would look at him/her in the hallway at school or out in public. Fear of what challenges he/she would face. While we didn’t know Annie was a girl yet, I wondered: Would she be verbal? Would she be able to be in a mainstream classroom? Would she be able to participate in similar activities to kids her age? Would she have friends? While some were focused on the immediate issues she would face at birth, I was looking toward the future and I was fearful that my niece would be looked at like other children with Downs: misunderstood. While Andy feared the unknown, I feared knowing too much about the stigma attached to Down Syndrome in our society.
Around this time, Andy & I were going through some challenges and learning to pray for God’s will rather than our own. While some may have prayed that Annie would be born with the exact right number of chromosomes, we practiced praying for God’s will to be done. We prayed for what He had planned for Mike, Colleen and their baby and that He would give them the strength to face whatever challenges He brought their way, if any. While it is a hard thing to pray for the unknown and for extra challenges, we knew that God sometimes has plans that are outside what we see for ourselves. I also knew that Mike and Colleen were made for something special. They never took the easy route so why start now?! And from the moment I saw little Annie’s face, I knew she was meant for them. I’m not going to lie and say we were no longer scared for them, but we knew Annie would be better because of them.
I try hard to believe that God never gives us challenges we can’t handle. That to me is one of God’s true miracles. Seeing Annie with Mike and Colleen is a miracle. Seeing everything she can do and has learned is a miracle. Not because we never believed she could do it, but because it was God’s perfect plan for her and them. I am grateful that God has placed Annie in our lives, albeit thousands of miles away. She never ceases to amaze us, teach us, thrill us, make us laugh and smile and debunk every expectation we did or did not have of her. And we know without a doubt, she would not be the same amazing little girl without the parents she has. Watching Mike and Colleen with her makes us realize that it doesn’t matter how the rest of the world may see her someday. It doesn’t matter how others look at or question her. They’re only seeing half of the picture. The other half of Annie is at home and can be seen reflected in her parents’ eyes when they see their beautiful, smart, happy little girl who is perfect for them.