Thanks Kay!

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

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

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

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

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

Here they are…

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

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

Thanks Kaylea! WE LOVE YOU AND MISS YOU EVERYDAY!

Annie CAN

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In follow up to yesterday….

There is so much Annie can do.

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

 

 

 

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

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

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

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

She can tell us when she likes something….

 

 

 

 

 

 

 

 

 

 

 

 

And doesn’t like something..

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

And “Monkey”

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

 

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

She can always convince Mom to read one more book!

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

She can tell you how old she is.

 

 

 

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

She can laugh and is always making us laugh.

 

 

 

 

 

 

 

 

 

 

 

 

 

She can sleep ANYWHERE!

 

 

 

 

She can get out of her pajamas all by herself.

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

She can rock a pair of sunglasses.

 

 

 

 

 

 

 

 

 

 

She gives kisses, excitedly and constantly.

 

 

 

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

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

The difference between CAN’T and WON’T

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

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

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

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

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

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

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

So can she get married someday? Unknown.

Can she go to college? Don’t know.

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

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

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

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

She already has so many!

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Not that different….

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

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

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

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

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

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

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

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

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

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

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

Stereotype and Myth Busters

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

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

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

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

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

Most children with Down syndrome are  NOT born to older parents. Over 80% of babies with Down syndrome are born to women under the age of 35, and the average age of a mother of an infant with Down syndrome is 28 years.

There is NO known cause for why an extra chromosome appears on the 21st pair. Only that it happens during the first moments of fertilization as cells divide and is called nondisjunction.

Down Syndrome is NOT caused by the mother drinking or doing drugs. It is something that happens at the moment of conception.

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

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

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

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

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

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

People with Down Syndrome do NOT have to live at home forever. A large percentage of adults with Down syndrome live semi-independently in assisted living facilities and group homes. Adults with Down syndrome often hold jobs and have romantic relationships.

Individuals with Down syndrome do NOT all die young. The average life expectancy of an individual with Down syndrome is now 55-60 years of age, but many live much longer.

Down Syndrome really isn’t that scary. It’s actually brought more joy into my life. It has taught me how to take things a day at a time and to live every moment to the fullest.

You can learn more facts about Down Syndrome by clicking on these links.

http://www.nads.org/pages_new/facts.html

http://www.mayoclinic.com/health/down-syndrome/DS00182/DSECTION=causes

http://www.dsnmc.org/facts/

Thanks for reading and please like or share to spread awareness.

Tough Questions

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

But for now, here’s Post #2…..

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

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

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

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

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

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

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

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

Will she be able to talk?

Will she be able to go to school?

Didn’t you have the testing?

Will she have to live with you forever?

So Down Syndrome must run in your family, huh?

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

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

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

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

 Of all these encounters I’ve had with these students, my toughest wasn’t a question really at all. More like a confession. And I was NOT prepared for it, though I think I handled it ok.

It sort of went like this…

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

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

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

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

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

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

What more could I ask for?

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Down Syndrome Awareness Month

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Today marks two important dates for my family. October 1, every year, kicks off Down Syndrome Awareness Month. And this October 1, our Annie turns 18 months.

Happy Down Syndrome Awareness Month! Our family is happy about Down Syndrome, we want to share it with you, and we want you to spread the word in turn!

Eighteen months is not that long. I never imagined that in just eighteen months I would acquire such awareness. Down Syndrome Awareness, yes. But more importantly, awareness of what really matters in life. I have learned more about life and love in the past eighteen months than I had in my twenty-nine previous years. I have learned about the world, the kind of person I want to be, and the kind of people I want in my life. I have acquired more knowledge in these eighteen months than in 20+ years of schooling. I have learned about acceptance, patience, and a mothers’ love. I have learned that God’s gifts are great and mysterious, and He really knows what He’s doing. I have learned these things not entirely because of an extra chromosome; but it’s appearance sure had a lot to do with the unexpected gifts in my life for which I am eternally grateful.

Eighteen months is not that long. I would never dare claim to be an expert on Down Syndrome. I could list facts and statistics from my research and important information about my daughter’s diagnosis. But I hope to bring Down Syndrome Awareness this month, by the only way I know how: Sharing our Annie with you.

Eighteen months ago, as my tiny one-month premature baby girl was laid on my shoulder for the first time, I immediately knew something was “wrong.” The pain I felt in those moments when I realized that my life would never be the same, that starting my family wouldn’t be what I had dreamed; I thought that pain would never subside. How could it with a daughter with Down Syndrome? What would we do? What would she be able to do? How could we cope with this in a foreign country? Would she be healthy? Would she read? Would she walk and talk? Would she ever get married? Work? I hate to admit it, but I even wondered if she’d be beautiful. These questions flooded my brain. The fear broke my heart. I didn’t want the challenges attached to having a child with special needs; but even more I didn’t want her to suffer, be made fun of, be treated differently. I was scared.

How ignorant I was. There was nothing “wrong” with my gorgeous baby girl, just different. And when we look past the labels that society has so wrongfully placed on our children, we can realize it’s just a difference and aren’t we all different anyway? Having an extra chromosome isn’t that different from me having curly hair or blue eyes. It’s something in our genes that makes up a part of us. It doesn’t define Annie.

What a beautiful journey we’ve had in the past eighteen months. And we have so much more to look forward to – NOT to be scared of.

I didn’t know then that Annie would bring more love into my life than I could have ever imagined. That every time she reaches a milestone we weren’t sure she ever would, my house is filled with celebration, surprise, and tears of joy. That things that I would have probably taken for granted as a mom of a “typical” child (like learning to drink from a straw) are tremendous feats and worth celebrating.

I didn’t know she would make us laugh everyday.

I didn’t know she would have a sign language vocabulary of 25 words by now. I didn’t know she would be able to transform strangers’ bad days into sunshine just by a mere chance encounter. She may not be walking yet, but she sure is getting into things just as much as any other 18 month old. And trying to stand too!

My bet is that not many people know that October is Down Syndrome Awareness Month. There is hardly a doubt in my mind though that they know it’s Breast Cancer Awareness Month. The towers in cities all over the world will be lit in bright pink. In stores you can make donations to the cause. There will be hundreds of thousands who participate in walks and runs. Pink ribbons will adorn clothes and houses and businesses. I am not trying to say that it is not a worthy cause. Of course it is! Women are reminded to go get that mammogram. It is incredibly important that we continue to fight for the cure and have the funds to do so. It is important to ensure that people are educated about breast cancer and to remember for families who have lost loved ones to the terrible disease and for the survivors who have won the long hard fight. With the alarmingly high statistics of cases of breast cancer in the U.S. alone, there aren’t many of us that haven’t been affected by it. I, along with Down Syndrome Awareness Month, celebrate Breast Cancer Awareness Month and applaud the tremendous efforts that bring the awareness throughout the year, but especially in October.

I bring this up only because I had no clue that October was Down Syndrome Awareness month. Not until last September, when five months after my daughter was born with Down Syndrome, I started this blog. I felt foolish. How could I not know there was such a month, for such an important cause?! But then I realized that many don’t know about it because it hasn’t touched their lives. It’s not something like cancer. It’s something that most of society chooses to turn its head away from. Many, sadly, even decide to terminate it from their lives.

I grew up with an aunt who was born with spina bifida. Wherever she goes it is impossible for her physical handicap to go unnoticed. As a little girl on outings with my fabulous aunt, I observed how others reacted to her. They usually turned away trying not to look, uncomfortable, but trying to be polite. Or on some occasions they stared, blatantly and rudely. It’s because, for most people, birth defects and physical and mental handicaps make them uncomfortable. So they turn away because they’d rather not look, they feel bad or sorry for the individuals and their families, or feel guilty that they’re thinking “I’m so glad it’s not me, not our family.”

It’s not until a friend, family member, or yourself has a child with Down Syndrome that most find out about what it’s like to live with an extra chromosome. Not until it’s touched your life. From what I have learned through the small chance of becoming a mother of  a daughter with Down Syndrome is that that extra chromosome really does come with extras one could never dream. And those extras are not the challenges and struggles, but tremendous joy, laughter, love, and pride.

So for today, I’d like you to be aware that individuals with Down Syndrome are not to be pitied. That our families don’t want you to be sorry for us or sad. We want you to embrace us, especially our children. We want you to celebrate their lives as much as you’d want anyone to celebrate your children. We want you to teach your children the importance of treating everyone – no matter how different – equally, and with love and respect. When you see a child or family with a child with Down Syndrome or whatever “syndrome” that makes them different, smile and say “hi,” not because they are different, but because they want to be seen and appreciated in our world as much as anybody else. We’d like you to challenge our children with the same expectations you’d have for any child.

If you learn of a friend or family member or stranger who has just given birth to or been given a diagnosis of a baby with Down Syndrome, do NOT cry for them, especially don’t tell them you cried for them. (This happened to me, and it only hurts more that people you love were sad on the day your child was born) Do NOT say you are sorry. Congratulate them and celebrate with them. Because I promise you, having a child with Down Syndrome is a rare, special, and glorious gift. I have said it before and I will say it always….Having a child with Down Syndrome is like winning the lottery of life.

The love our Annie shares with those around her is tremendous to witness. I know that the world is a better place with her in it. And we celebrate her everyday!

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Hard to say goodbye

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Even when I was a very little girl I knew my grandmother was the hardest person to say goodbye to. At the end of every visit with my grandma my mother or father would take my hand and try to lure me to the door to leave for our home just blocks away. Since I can remember, and from what family has told me, these departures always went the same way. I would stick my lower lip out in a terrible pout and tears would immediately stream down my reddening face as we exchanged goodbyes and the parent to which I was adjoined would tug a bit harder towards the driveway. I would let out a little wail and then yell out “But Grandma, I REALLY REALLY love you!” She would chuckle and reply ” Oh, Colleen, I really really love you too.”

As I grew up this became an important ritual for my grandma and me any time we said goodbye. And somewhat of a joke between the two of us. As a teenager, sometimes too anxious to leave a family gathering to meet my friends, I would sometimes forget, and as I reached the door Grandma would say from across the room, “Colleen, aren’t you forgetting something?” and I would run back to her and throw my arms around her and say “No, Grandma, I didn’t forget. I REALLY REALLY love you.” I can’t remember a visit or phone call or letter that did not end with this exchange of words.

There isn’t much more I am proud of than being a part of the Weiler Clan. Family get-togethers did not just revolve around the holidays or special occasions, they were part of our normal week. Growing up just blocks from Grandma’s and around the corner from cousins we seldom went a week without seeing each other. Grandma made sure of it. My entire childhood consists of memories in my grandparents’ backyard, at their dining table, standing on a chair in the kitchen next to Grandma in an oversized apron, and fighting with the other 24 grandchildren for spots on the floor for Christmas.

Yes, my grandmother had 25 grandchildren. Most of us grew up in the same neighborhood, just down the street from Grandma and Grandpa’s. Saying she always had plenty to keep her busy is an understatement.

My grandmother was a seamstress. If I close my eyes now, I can see her sewing room in the basement filled with her many projects. She must have had ten sewing machines. Every Halloween she stitched with love all of her grandchildren’s costumes. I never wore one that wasn’t handmade. Every mid-October we’d all gather together with Grandma in the basement and decide, or argue over, what everyone would be that year. Then we would pile in cars and head to the fabric store, creativity spinning in all of our brains. My grandma once made a mermaid costume, tank included, that my older cousin Ben wore. She could replicate any Disney character better than any costume company. When I was eight she transformed me into a flower pot by turning a lampshade up-side-down and standing my green-draped body inside of it. Yellow petals adorned my face and my hands were transformed into leaves. As a kid, I don’t think I remember thinking all this fuss was special. It was just what we did, what she did. Now, as a mother of only one, I realize what a tremendous feat creating 15+ costumes in two weeks was.  And as I have grown I realize my grandmother was a seamstress on many more levels than could ever be imagined.

Of course she was a fabulous sewer. She could dress any wedding party from scratch and make them look like they came off the runway. There wasn’t a pair of pants or Catholic school uniform in the family that wasn’t hemmed by her. Her quilts adorned most of her grandchildren’s beds and kept us cuddled in her love on cold nights. Her stitch couldn’t be beat.  But what I had missed as a child, is so incredibly apparent now. Grandma wasn’t just stitching our clothes, quilts, and costumes, she was stitching us together.

Everything I know about love and family has streamed down from her. My siblings are my very best friends, my cousins are a very close second. When I am with them, all the world is right. We don’t need anything but each other to entertain us. Twenty-five is a pretty big party. Now many of us are married and starting families and the number is getting pretty hard to keep track of. But when I am with them, I never want our time together to end.

I think this is why Christmases for the Weilers always consisted of being together Christmas Day and the day after and the next five days after that too. Grandma was the absolute best at starting crazy, unique family traditions. The day after Christmas was always called “Game Night”. We would all gather again at Grandma and Grandpa’s for leftover stuffed cabbages and we would all bring our games and toys we received from Santa to share with everyone. There was always a 1000 piece puzzle that would be started in her sewing room on the enormous table she kept in there. We’d work on it for days until it was finished.  And we always finished it as a family, with every one of us at one time or another placing a tiny piece in the right spot. Often the night after “Game Night” would be “Soup Night”, where every family would bring a new soup or favorite soup recipe to try and we would have a buffet of soups in Grandma’s basement. Of course, the games and puzzling would continue. We’d then gather again the next night for “Potato Pancake Night” and stuff our faces with potato pancakes piled high with applesauce and cottage cheese. Nights like these would go on sometimes even through the entirety or our holiday break.

Even on days that weren’t revolved around family traditions or set-in-stone on the calendar get-togethers; if I decided to walk or ride my bike over to Grandma’s for what I hoped would be a one-on-one visit with her, chances were I’d arrive to find the bicycles of at least a few of my other cousins in the driveway. Ben or Joe would be mowing the lawn, Jake would be on a ladder in the garage taking orders from Grandpa. Grandma would meet me at the door to her kitchen and tell me how nice that I’d stopped by, but let’s get to work, today we’re rolling pie crusts. I’d barely get through the door and notice that Tyler was there already kneading the dough.

Almost every one of my five siblings and I grew up with one of our cousins in our same class from preschool through high school. Our cousins were our neighbors, classmates, teammates, and favorite friends to invite for a sleepover. After Grandparents’ Day at school, Grandma would scoop up her grandchildren and pack them like sardines in her car and take them for root beer floats. I got to experience this twice when I wasn’t even a student. My first two years as an elementary school teacher I taught fourth grade at the parish school I grew up in. My youngest brother and a few of my cousins were still attending junior high in the same building in which I taught.  When it was the grandparents turn to come visit their grandchildren in the fourth grade classroom, I was surprised when I looked up and saw my grandmother standing in the back among my students’ grandparents. When another grandparent asked her to point out her grandchild in the room, my grandma pointed proudly and said she’s that one at the front, the teacher. At the end of our presentation and after students had handed out cards and hugs to their grandmas and grandpas, my grandma came up and informed me that after the bell rang it was time for root beer floats. No questions asked. They would wait for me to wrap things up in my classroom, and I was going with her and my youngest cousins for the traditional trip. That she took the time to come to my classroom too, made my day. But then again, I shouldn’t have expected anything less. Grandma was always there.

She always attended eight o’clock Mass every day of the week. And for the two years I taught at the parish, my class attended every Monday before school. And after every eight o’clock Mass, Grandma would wait and my students would know to sit quietly and wait while I crossed to the other side of the main aisle to give my grandmother a hug and a big “I really, really love you, Grandma.”  She was the reason I loved Mondays!  These are the small things I love and will always remember about her.

They are the things she instilled in me that I hope to instill in my Annie and future children. That a small act can leave a huge impact. That by taking a few seconds to make someone’s day better, you may be setting the example for others to do the same. That when you ask someone how they are, you truly want to know and are willing to listen. That we can choose to take a breath in our hectic day-to-day routine and refocus on what really matters, love.

My grandmother taught me so much. She taught me to roll cabbages, to flip the perfect potato pancake, to make the best homemade applesauce. She taught me when I was eight how to sew a button on a shirt. She taught me checkers, scrabble, and my favorite card game, 500. She never let me win though, she never let anyone win. She taught me that hard work is a reward itself. She taught me to always put my best foot forward. She taught me to admit to my mistakes when I am wrong and to learn from them and move on. Though she was never one to admit a mistake herself, EVER. She taught me that if I don’t take care of me first, I won’t be able to take care of those I love the most (this is something I didn’t understand until I became a mom). She taught me to find and believe in my God-given gifts and to use them to bring good to others. She encouraged me, sometimes through tough love, to be the best I can be. She taught me to be proud of family. She taught me to laugh without hesitation, but to never laugh at others. She taught me not to judge others, and to let it roll off my shoulders when others judge me. She taught me how to properly wear a strapless bra. She taught me to make a feast out of whatever is left in the pantry, when hardly anything is left in the pantry. She instilled creativity into my soul. She taught me to listen, even though sometimes I felt that she had selective hearing. She taught me the only things you need to warm a house are family, laughter, and love. She was an amazing example of living everyday to the fullest even up to the very end.

A little over two years ago, just before I moved an ocean away from my family, Grandma sat me down for one of her chats. I hated leaving all of my family, but especially Grandma. One thing that Mike’s American colleagues and my friends here have always told me is the hardest about being away, is the constant reminder that someday grandparents and parents will not be there, and we are missing all this time with them being in another country. I knew, moving to Italy, my frequent visits with Grandma would be much fewer and farther between than I was used to. So I didn’t know what to expect for our last one-on-one visit before taking off for my new life abroad.  I was sad before I walked in the door to say goodbye to her. But then she sat me down and smiled so big and told me how happy she was for me. She asked, “Colleen, could you have ever dreamed of something better happening to you?”  She told me that she understood, though leaving her family in Wisconsin was certainly not the same as moving across the world, what it was like to leave a family for a new husband and to start a family away from her mother, father and siblings.  She told me not to look back, that Mike and I would make a fabulous life together. That that is what a marriage is. Making your spouse your priority. Sacrificing for one another. Supporting his career, knowing he would do the same for you. Home is no longer where your mom and dad are, or where you grew up. “Home is where he is,” she said. “So go make Italy your new home.” And then she gave me a big hug and said, “I really, really love you, Colleen.”

She was right. It didn’t take me long to realize that, though siblings and cousins and grandparents are important, Mike (and now Annie) are all I need to feel home. I didn’t think I could live so far away from my sisters and brothers, that the distance would be harder on Mike and me. But it wasn’t. It made us closer and stronger than ever. And when I called Grandma from my new home so far away, she would share more and more of what it was like for her having to start over in Aurora. We bonded over our adventures of being so far from familiarity.

And then Annie was born. And my grandmother and I began to bond in a way I never could have imagined. The first eight months in Italy, I spoke to my grandma on the phone only three times. After Annie was born I don’t think we went more than two weeks without at least an hour phone call. My dad set her up with her very own calling card, and made it as easy as only hitting a few buttons on the phone. She became a pro at knowing the exact time to call considering the extreme difference in time zones. I knew she was one of the few people I could actually get a hold of given the time difference. I usually called between 6:30 and 7:30 in the morning her time. She was always up and if I called any later I would be interrupting her extremely busy social calendar. I had to call before Bridge, or poker, or ladies night out began.

You see my grandmother and I now had more than moving away from family in common. We shared the bond that only mothers of children with special needs can understand. And the new mothers in my life, who were brought into my life because of my Annie and their beautiful children, know exactly what I am talking about. Not until you, stretched out on a hospital bed after  just going through the pain of delivery, have heard the words from your doctor’s mouth that your child has an extra chromosome, or spinal bifida, or any other number of possible birth defects, could you possibly understand. Only my doctor’s words were words of reassurance, that “Yes, Annie has something that makes her different and there will be challenges, but you will take her home and love her and quickly realize that it is not that different really.” The words my grandmother heard almost fifty years ago upon the diagnosis of her youngest child being born with spinal bifida were much different. She was told to leave her in the hospital, that her baby would be a burden, that she would die and if she didn’t they would find a place for her. Knowing what I know about my own personal experience, the doubts I had of my capabilities as a mother to a special needs child, the fear and excruciating sadness I felt, even the anger; I could never begin to comprehend what it was like for my grandma. She, of course, did not listen to those doctors. She told them they didn’t need to find a place for her baby, because the only place for her was home. She brought my aunt Mary home to her six older siblings not knowing what to expect. Forty-seven years later, Aunt Mary is a happily married woman with a wonderful life and brothers and sisters and nieces and nephews that love her.

I am so grateful for the phone conversations we shared and that she was able to hold Annie so often when we were home. My grandma shared with me what it was like for her and was so glad that times have changed and that Annie has so many opportunities, therapists and doctors to help her. She told me that for the rest of my life I should be prepared for surprise, because Annie would surprise me when I least expected it. And that she never forgot the day when Mary was just two years old, and she heard her say “Mama” from the crib and looked up, to her surprise, to see her standing all by herself with her head peeking out from atop the crib. She said she had no idea what Mary would be able to do, so she did what she knew. She treated her as much like her other six children as she could.

My grandmother was as interested in Annie’s development as any of my family members, maybe even more so. It’s all she wanted to hear about every time she called. “What’s that baby up to and into now?” She’d make me hold the phone up on speaker and she would talk to Annie for hours. She loved hearing Annie’s noises and even if I was in the middle of telling her about an exciting adventure in Tunisia or Poland, if Annie made a peep she’d stop me and no longer care about my story, “Oh, Annie I can hear you! Are you saying Mama yet?” And I’d never be able to get her back to the conversation. She was fascinated that Annie uses sign language and wanted to hear all about it. When we happened to be in Aurora and visiting at Grandma’s house, she asked about all her therapies and what she should be doing with her to help. She asked to read the book I was reading about Down Syndrome, and she did.

In many of the books I have on Down Syndrome, they warn of grandparents having a hard time accepting the diagnosis or of an outdated attitude toward individuals with Down Syndrome. That when they were born, these children were not allowed into society, were hidden in institutions, that it was something to be ashamed of. Well, with a grandma like mine, I guess I could have skipped those chapters, huh?

And you know what? She taught me more about raising a baby with special needs than any of those books. She shared with me how she dealt with the pitying looks from others. How God really knows what he’s doing and if we have faith, we can see the challenges He sends us are really His biggest gifts. She cried with me over how hard it was to send Mary into a school where she was tormented by mean girls who constantly made fun of her because she was different. That sometimes she felt she had to be harsh to help Mary to be tough, and that it wasn’t easy. That if we treat our babies differently others will too. And most of all, that they are our babies, our children, and we love them with all our heart as they are.

Two months ago, I received a phone call in the very early hours of the morning from my dad. Because of the hour of the call, I immediately knew that something was terribly wrong. My grandmother was in the hospital. We packed our bags and flew home in time to say our goodbyes. She died on Saturday, July 21 in the afternoon with all of her children around her.

The night of her wake our family gathered at Aunt Pat and Uncle Wayne’s house for food and family time after a long and very sad day. The night couldn’t have ended more perfectly. Stuffed into the couch, chairs, each others’ laps and every inch of floor space in the smaller of the two living rooms, all of her grandchildren sat together (smashed together). Though there were plenty of other rooms for us to spread out to, we wanted to be together, and though our bodies are a bit bigger, it felt like it did when we were kids at Christmas crammed on the floor of Grandma’s living room. We laughed so hard we cried, we teased each other, told stories like we always do, not a moment wasn’t occupied with complete joy and laughter. And like it always is when we’re together, I don’t think any of us wanted the moment to end. It was perfect and I know Grandma was with Grandpa smiling down on the sight of us all thinking “All the world is right as it should be.”

Two weeks ago, the day before Annie and I flew home, my aunts had me go with them to Grandma’s to go through her things to point out a few things I might like to have. Living so far away, I won’t be able to be there the day the whole family gets together to decide who will get what. As I walked into my grandmother’s for what I am sure was to have been my last time, I didn’t realize how unprepared I was for what was waiting behind that front door. There, in perfectly organized piles spread out throughout the home, sat most of my childhood memories. In perfect little clusters. Every corner I turned something reminded me of a special memory of my amazing grandparents. Like the boring looking wooden clock in the kitchen that used to sit just above Grandpa’s head at the dining table. I used to stare at it when I needed to be distracted from staring at the enormous amounts of butter my grandpa would spread on his bread. I’d LOVE to have that clock!

The thing about all of this, is that the things that would be nice to have aren’t the expensive looking antiques. They are the little things that remind us of our childhood with our grandparents. I am sure the tiny children’s turtle stool which is at the top of my list, is on everyone’s list. We all loved and sat on that turtle stool as long as our bums could fit on it.  Or the scrabble game that is so old the box isn’t even a box any more but more like two worn-down pieces of thin cardboard sort of keeping the pieces together. All of her grandchildren extended their vocabulary on that board with those very Scrabble tiles and argued with Grandma over her cheating. The rolling pin that she’s had forever that each of us felt her hands over ours on, guiding the dough to make the perfect crust. The things that are of worth to us, the ones people will put up a fight for, are the little things. Their worth can’t be measured. They are things that if we had in a special place in our house, may make us feel a little bit closer to her. But you know what?  It doesn’t matter who gets what. Because we all won! We all had her. And we are forever connected because of her. So whoever gets the turtle stool, well we’re all going with it, they get a piece of all of us.

On that last day at Grandma’s, as we wrapped up and my aunts sat at the kitchen counter compiling my “list”, I became completely overwhelmed with emotion like I never have in my life. My aunts noticed and sat me down in the only chair in the room that wasn’t covered in Grandma’s things.  And then I lost it. I realized that I hadn’t physically seen Grandma as I remember my Grandma since last November. We had talked so much it had felt like only yesterday. The loss of my grandmother completely began to sink in. Only Suzie and Julie and I will know what was shared in those moments, but it was a beautiful goodbye and I will never forget it.

On the afternoon of the day of my grandmother’s funeral one of my aunts mentioned to me that she was worried that the get-togethers wouldn’t happen as much any more because Grandma always made sure they happen. And I thought about that a lot and what it might be like. And then I realized, they will never stop. Grandma’s stitch is too tight.

Thanks for that Grandma. And, like always, I REALLY, REALLY love you.

Annie’s Little Treasure Box

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When Annie was born, as I am sure is the case for all parents upon the arrival of their firstborn, we were showered with gifts. Showered, though, is an understatement. We were literally up to our ears, buried, swimming in gifts. We received packages daily that were flown across the ocean. When family members flew to Rome to meet Annie for the first time, their suitcases were overflowing with gifts sent with them from people back home, many of whom Michael and I had never met before. The amount of love and support we received and continue to receive will never be forgotten.

For at least the first two years of her life her closet will look like this….

There are over 60 dresses that currently reside in her wardrobe that are sized 12-18 months. I kid you not. These are only the dresses that currently fit her. This does not include her dresser filled with t-shirts, onesies, pj’s, and pants. It does not include the bins and bins of clothing sized 0-12 months. All gifts! Excessive, of course. But every time I open that overflowing wardrobe, I am reminded of the overflowing love in our lives, the overflowing love for our Annie. And as I dress her each day, I tell her about the person back home who bought her this dress and how much they would love to see her in it.

That’s the best part about gifts. It’s not the physical, material thing. It’s remembering the love behind them. Like remembering my parents’ best friends from their time as students in Rome, the Feldners, as we sip wine from the glasses we received from them for our wedding. Or bringing home fresh flowers to fill the vase from “Aunt” Mickey. When I am sick, I immediately go to my tea box and am reminded of my best friend, Danielle, who always took care of me after every surgery in high school.

Annie has been given SO many gifts. She has gifts from all over the world. Teddy bears from Berlin, Poland, Annville, PA,  and London. Beautiful beads from Jordan and Germany. Handcrafted Italian dolls. Authentic clogs from the Netherlands. Handmade blankets and booties from Italian grandmothers. Quilts, clothing, toys, and books from the U.S.A. An Italian traditional coral bracelet for luck. A beautiful camel from Tunisia. The list goes on and on. Her room is adorned with them and in each corner is a story for us to share with her of our friend who traveled here or there and thought of her.

Sitting among her books, just under her hand painted clogs, is one of my favorite gifts of all.

It is a hand carved wooden box. It was made with love by the cousin of our dear friend, Maria, in the small town of Bagnoli Irpino in Avellino, Italy. When Annie was only a few weeks old, Maria presented us with this gorgeous box.  The details are incredible. On the inside of the lid of the box is a carved inscription that reads “Roma Aprile 2011. a Annie Kathleen con tutto il mio amore….Zia Maria.” Which translates to the simple message of…Rome, April 2011 To Annie Kathleen with all my love, Zia Maria.

Just looking at the box anyone can tell it is special. But having it in my hands I was overwhelmed and thought, “I must find a very special purpose for this amazing gift.” And so it has become Annie’s treasure box.

So many times as we meet new people visiting the campus here in Rome, they make the comment, “What a shame! She won’t remember any of this. Of her time here and all her travels.” So we decided to give her a way to remember. Every time we travel to a new town or country we purchase or find something very small for Annie’s box. This way when she is older, all she will have to do is open the box to remember all the places she has been.

So far the box contains the cap she wore the night she was born. This will remind her that she couldn’t wait for Mommy and Daddy to prepare for her arrival and came four weeks early. Her hat, as evidenced in photos, was entirely too big. Underneath the cap, is her “coming home outfit,” a gift from Carla, Anna, Nadia, and Maria. Who all knew Mom hadn’t had the time to purchase one before her early arrival. Because of this, Annie will know that thanks to them, she got to come home in something pink rather than yellow or green or gender neutral.

In the opposite corner lies her first pair of baby booties. Italian baby booties are gorgeous and every baby should have a pair. She wore these for the first two months of her life. Folded in the bottom of the box is Annie’s baptismal bib from her baptism at the Vatican. The rest of the contents include treasures from all of the places she’s been. A hand painted egg from Krakow. A double decker bus from London.  A tiny hand painted key from Tunisia. A rock from the beaches of Ischia. A shell from the sand on the shore of Minturno. A music box from Paris. (Annie hasn’t been there yet. It is a gift from her Aunt Rachel who spent the last semester here in Rome with her. We hope one day the two of them will explore the Louvre or walk the halls of Versailles Palace together).

By her second birthday we have plans to add treasures from Greece and Sicily,and to hopefully add many more. She is only fifteen months and has so many wonderful memories. Yes, we know she won’t “actually” remember them. But we are keeping them for her. Her life already has been so enriched. Yes, by the gifts she has been given. But SO much more by the people behind the gifts. The people back home who love her so much already and from so far away, who have only met her a handful of times. The people here in Rome, who hardly knew her mother when she was born, and that she now considers aunts and uncles. We love you so much. Thank you all for the beautiful gifts, but more importantly for your support and love!

The small things

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Living in Italy has taught me many things. More importantly it’s taught me to appreciate the small things. And when I say small, I mean REALLY small. Everything here is smaller; the homes, the cars, the roads, grocery stores, the portions at restaurants. You name it, it’s smaller. The only thing that’s not smaller in Italy is the churches!

When we first found out we’d be moving to Rome, and I saw for the first time the tiny apartment my family would be moving into for at least the next few years, I was beyond nervous. I was leaving my brand new, luxurious and spacious two bedroom, two bath condo, with every kitchen amenity one could dream of for THIS! I mean “this”.  The university’s campus here in Rome is located in what used to be a convent. Our apartment is made up of one long and narrow hallway with three little rooms, a very nice living room area, a ten foot galley kitchen and through the kitchen is the entrance to our tiny bath, senza tub. When I first saw the apartment, it was and had been housing a family of four for the past eight years. I remember thinking “How do they live in this space?”

Then we moved in. I was six weeks into my first pregnancy. I had just left the only state I had ever called home. I had no friends, no family, other than Mike of course. I remember getting out of the car after Mike picked me up from the airport after a very long and lonely flight. He walked me up to our new digs with my two suitcases. He helped me get settled for a few minutes and then he had to get back to work. I walked around my new house. (It took me a mere two minutes to check everything out). Yep, two minutes. Wow, this is it? We had been left two chairs in the living room and two odd uncovered foot rests. The whole apartment was hospital white with fluorescent lighting.

My pregnancy hormones quickly signaled immense emotional breakdown and triggered an unbearable headache. I sat on the floor in my new “kitchen” facing my sink/counter space, next to my four feet tall tiny fridge. My back nearly touched the tiny hutch for storage behind me. I sat and I cried. My crying turned into bawling and hysterics. I cried for the dishwasher I left behind, my stainless steel super sized appliances, the boxes and boxes of fancy wedding gifts we’d received just 10 months earlier, which are now sitting collecting dust in storage at our parents’ places.

My husband and I didn’t live together before we were married and we had spent the first six months of marriage making our apartment our “home.” How could I start all over? How could I do this here; with no Crate and Barrel, no Target, no CAR, AND while pregnant and experiencing the worst “all day” sickness ever?! I sat and I cried. I sat on that floor for nearly 2 hours and just cried. (At least I was close to the bathroom for when the pregnancy nausea got the best of me.) I was scared and nervous and all the excitement I had when I learned we would be moving to Italy suddenly evaporated. I wanted my mom and my sisters to be there to help me plan transforming this “space” into my home. Thinking about not having them there for mere decorating purposes made me realize they would not be there the day my baby was born. I had always pictured that day my whole life. The man in the room’s face was always blank (until I met Mike), but my mom and Amalia and Kaylea were always right there. Or at least in the waiting room with my three brothers and Dad. This realization was the onset of even more nausea.

After two very long hours on the floor, I composed myself and started unpacking. My husband was amazing and dedicated every weekend that first four or five weeks to trips to IKEA. THANK GOD for IKEA! Our entire apartment could be an ad for IKEA. We picked out paint with the help of a few of Mike’s amazing colleagues; Martha, Gabriella, and Cristina. They were not my mom and sisters, but the job got done and the colors made an enormous difference. I learned I was not alone, that Mike’s colleagues who had been strangers just days before would become great friends and a source of great comfort when I was missing home. I learned quickly after Annie’s birth that I was wrong, they would become “family.”

I spent days frustrated because I didn’t know where to go to buy things for the house. And then once I would find a place and finally get there they would be closed for siesta! I hated this two years ago. I have learned to love it and that life is to0 important and short to work 24 hours a day. That stores should close for family time. And that, though maybe inconvenient, the Europeans have got it right. Why do we always have to have everything at our fingertips 24 hours a day? What does it hurt to wait til tomorrow and grab your family and go for an unexpected outing, or spend the evening concocting meals from what seemed like an empty pantry, or starving and, instead of moping, having a tickle session on the floor to distract from the pangs of hunger?

I learned that having a tiny home is a gift. It forces us to spend our days outside exploring and learning and soaking in our beautiful city. Of course, we make memories in our residence, but home is much more. Home is Rome. It is the tiny cobblestone alleys, the beautiful piazzas lined with artists and musicians, it’s the delicious gelato melting down the side of  your fingers on a hot day, it’s the kind neighbors you meet on the autobus you’d never have met had you stayed inside. I pray I can take this attitude back to the states, where things are faster paced and super sized, whenever we move back . That Chicago, or Springfield, or Hersey, or Smallville will become our next adventure with hidden treasures to discover.

Our house is our “home”, of course. But it has made me realize that it is primarily a place for sleeping, getting clean, and eating. That memories are made under our roof, but our most spectacular memories are made under the stars. Or under the columns in St. Peter’s Square. Or sitting beside the fountains watching the tourists and feeding the birds. Stumbling upon a surprise concert in front of the Spanish Stairs. Tasting carciofi alla giudea or stracetti con porcini e tartufo for the first time. Taking in the sunset from il parco degli arancia.

The most spectacular memories are the small things, the stumble upons. I stumble a LOT in my tiny apartment. I stumbled over the boxes that didn’t fit when we moved here. I stumble constantly over our fold out dining table that hardly fits in the hallway, our “dining room.” I stumble when I try to pass Annie’s highchair (that takes up the entire kitchen) when trying to get to the fridge or the stove. When I stub my toe or feel cramped in my space, we pack up and get outside! Just yesterday, Annie and I packed up to explore and we stumbled upon three amazingly friendly French women visiting Rome for the first time, a five year old boy celebrating his birthday, a new gelateria, and caught the glimpse of a beautiful green parrot in a palm tree.

The dishwasher I cried over that first day, I don’t even miss. I would, however, miss all the things Italy has opened my eyes to. That if you don’t “get out there” and experience all the small things your city or town has to offer, your life just passes you by. What will you stumble upon today?