Monthly Archives: October 2011

Sette mesi e dieci voli!


I know it has been forever since I have posted. I didn’t fall off the face of the earth. It has just been a while since I’ve had the opportunity to sit down to write at my computer. And now that I am here, I have no idea where to start. I have a LOT of catching up to do.

October has been one of the craziest and busiest months for my family. I had a husband with a broken ankle, the family made a last-minute trip to the States for a memorial service for Annie’s wonderful great-grandfather, and we returned to Rome only to leave her less than eight hours later to fly to Poland. I had a jet-lagged baby and a jet-lagged self. Suitcase after suitcase, flight after flight, train after train… I didn’t find much time to sit down, let alone collect my thoughts at my computer. Anyway, I dropped the ball on the 31 posts and feel pretty bummed about it. I actually let myself get pretty down this month with all the chaos. I had some pretty ugly moments when exhaustion got the best of me and I may have taken it out on the people I love. Nonetheless, this October we were go, go, go. In sixteen days we were on seven planes and three trains. Here’s how our travels went….

Annie, Mike, and I spent a week in Chicago, just enough time for Annie to get herself on a U.S. time zone schedule. So on our last nights in Chicago, my precious baby was finally falling asleep around 10 and waking up just a little before 8. Perfect! We left Chicago on the evening of the 11th on an overnight flight to London where we connected in the late afternoon to Rome. We arrived in Rome around 8 p.m. and I was ready for bed. Annie was ready for lunch! Bed had to wait, we needed to be ready for a 5 a.m. pick up to take us back to the airport. Fed Annie. Thankfully her Aunt Kaylea was joining us for the trip and was there to help. While Kay played with a super energetic baby, I began the process of unpacking and repacking. By about midnight I was ready to go and, more importantly, ready to hit the sack. Annie was just waking up from her afternoon nap. Brilliant.

After a long night we were back at the airport, where my husband informed me for the first time (or at least it was the first time I listened) that we had a layover in Switzerland and wouldn’t be arriving in Poland until mid-afternoon. GREAT! Anyway, found out this day that Swiss Air is truly my favorite airline. We have flown with them before, both transoceanic and throughout Europe, and we have always had extremely comfortable flights. The service is always great. This day we learned they are awesome with babies too! They even had little baby gifts for our baby flyer! On the first flight a handsome young flight attendant handed me the baby seat belt and while handing me the baby life vest calmly said “We usually don’t need these!” It was pretty funny. Then he handed me a little package and said it was the “baby version of Hamlet.” It was just a little Swiss Air cloth booklet to help entertain Annie. But so sweet and cute.

Other than a few bumps with getting wheelchair assistance for my husband, we had two uneventful flights and a happy, but exhausted baby. After taking a taxi to the wrong Ibis hotel, we finally arrived at the right one around 4 p.m. Mom, Dad, and baby decided to skip site-seeing for the afternoon and opted for a much needed nap. Unfortunately, I woke up more exhausted than refreshed. And we had a busy 8 days in front of us.

Every October for the University’s fall break, my husband takes a group of students to Poland for a study trip. Last year I attended and loved it so much, I promised I would never miss it. Poland was never high on my “to see” list. But it is quickly becoming a favored spot. Every town and city I have visited in Poland is more beautiful than the last. There is such tremendous and important history in this country. The people are incredibly nice, generous, and helpful. The food is to die for. The only down side is that it is cold! The university has been running this trip for the past six years. It is fabulous and I will be writing a post about the wonderful details of the trip in the near future. But this post is about our little globetrotter and one tired mamma.

This year, they tacked on three extra days to the usual four-day trip. Plus, we decided to tack two extra days to our trip: one in Warsaw at the beginning of the trip and one in Krakow at the end. For the study trip we added a day in Warsaw, kept the normal two days in Torun (a small university town where we meet with Polish law students and professors to hold an annual symposium on human rights), and added Krakow to the trip for an extra three days. Of course I will be writing about all we saw and learned in all of these places on another day. But for the purpose of this post, what these three cities meant was three different hotels, three trains, and a lot of lugging of suitcases.

Thank goodness for our 17 wonderful students, Aunt Kaylea, and Cousin Kelly! We never would have been able to move all the baby luggage, stroller, car seat, diapers, or mom and dad’s suitcases if it weren’t for them. Dad on crutches with incredibly sore wrists was no help in the lugging process. On top of all this lugging, I had a baby whose bedtime was still in Chicago. This meant Annie didn’t fall asleep for the first three or four days of the trip until around 4 a.m. Which of course meant mom didn’t get to fall asleep until 4:05 a.m.

For being such a great trip, it was also the most difficult trip of my life. Exhaustion is too small a word for what I felt during my time in Poland.  I still don’t know how we did it. But that’s our life…always on the go.

When we arrived back in Rome after a late night flight from Krakow, I turned to my husband rather crabbily, and said thank you for a wonderful trip, but NEVER again. It took two days of resting and one enthusiastic waiter to make me realize I really didn’t mean that.

On our second night back in Rome, we decided to take Kay to our favorite spot for dinner. It’s a family run place and we know the owner and his son who run it well. They were, as always, happy to see us and especially happy to see the baby. But since we hadn’t been in for dinner in quite some time, the son asked us where we’d been. My husband began to explain the travels of our family over the past two weeks. He stopped him mid-sentence and said, “Aspetta! (Wait!) How old is your baby? And how many flights has she been on?” We responded she will be seven months next week and two days ago she was on her tenth flight. This young man was so amazed he went on to say, “I am 29 years old, and I have been on half the flights as she has.” He then went into the kitchen and dragged out his father, brought him to our table and kept repeating “Sette mese e dieci voli!” He did this with the other waiter and a few diners too!

I share this story only because in those five minutes of astonishment on that waiter’s face, I realized how truly amazing Annie’s life already is. It’s so easy to get caught up in the chaos, to complain, to let exhaustion win. I spent too many moments upset and crabby with all we had to do that I forgot about what we were so blessed to be doing. I forgot to sit back and see all that my family is experiencing, all the places we get to see, all the love by which we are constantly surrounded. More often than not, it is someone else, (like the waiter) who is on the outside that reminds me how truly lucky my family is. When I am down and homesick or just plain sick of Rome (yes, it can happen), all I have to do is remember the time I was on the bridge of the Castel Sant’Angelo on the most beautiful day with the most spectacular view with my sister-in-law Ginny and she turned to me and said, “God, can you imagine what it’d be like to live here?” I had to laugh and remind her that “Yes, Ginny, I can, because I do live here.” But it actually was exactly what I needed to hear.

Sometimes we get caught up in the life we think we want that at times, sometimes – at the most important times – we miss the one we’re living. That’s what Annie’s teaching me everyday. Live in the moment, love every moment you can. They pass too quickly and you can’t get them back. Are we more tired than we would have been if we had skipped this trip and stayed home after our trip to Chicago? Definitely. But I wouldn’t trade all the memories we made and lessons we learned in Poland for the world. Seven months and ten flights.

Annie, your story has only begun!

Things I wish I knew…and some myth busters


Down Syndrome is NOT a rare genetic disorder. It’s actually the most common genetic condition. About 1 in 700 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.

Down Syndrome is NOT caused by the mother drinking or doing drugs (I have actually been asked this). It is something that happens at the moment of conception.

Babies with Down Syndrome are NOT “strange looking.” They’re actually EXTRA cute.

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.

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 50 years of age.

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.

One thing I love about Down Syndrome…


For 31 for 21 to raise awareness for Down Syndrome, many of us blogging moms are choosing to blog about the same topic on Thursdays. Today’s topic is one thing you love about Down Syndrome.

How could I possibly pick only one? Wow. Can’t do it.

Here goes….

I love the little gap between her big toe and the rest of her toes.

I love her beautiful sparkling almond shaped eyes with her beautiful brushfield spots that come and go.

I love that she gets to be a baby a bit longer.

I love the lessons I am learning.

I love the people it has brought into our lives.

I love the contagious smile and genuine love that shines through it.

I love the constant celebration every time an obstacle is overcome.

I love her doctors and her therapists.

I love watching the determination in her eyes when she wants a toy. Yes, she has to work harder than most kids to get it, but it is this extra work that helps me to appreciate the simplest things.

I love the smile that stretches across her face when she realizes her hard work paid off and desired toy, blanket, or mom’s hair or necklace is in her hand.

I love the journey it is taking me and my family on. Will there and have there been bumps along the journey? Yes. I am learning that the bumps are just as important and rewarding as the smooth stretches.

Mostly, though, I love it because it is a part of my daughter. And, more than anything else I have ever loved, I love EVERY part of her.

Caught it….


Annie is used to being in front of the camera, not really sure I can say she likes it, but she’s in front of one constantly. As you can and will see from the MANY photos I post, we literally have thousands of pictures of her. However, it’s frustratingly rare that I can catch her radiant smile with her looking right at the camera. Don’t get me wrong, we have hundreds of pics with her smiling, we just catch it when she’s interacting with someone else, she just doesn’t cooperate for camera. Either she’s sick of that big black flashing machine in her face or she’s just bashful in front of the lens. Whatever it is, it’s really hard to capture her smiles. She really does smile a ton throughout the day, just not for the camera!

She’s even worse for video. Every time Annie discovers a new trick, we run to get the camera to try to catch it on video. And every time we turn that blinking light on, she stops and just stares at us. Once I can figure out how to add video to my posts, I’ll show you what I mean. We’ve tried to catch her rolling over, laughing out loud, holding her bottle and drinking all by herself, passing a toy from hand to hand. You name the trick, we’ve tried to catch it! We have endless amounts of videos with Annie just pausing whatever she is doing, turning her head to the camera, quiet and staring blankly. The only background noise in these videos is usually from her mother, laughing “damn it (pardon my french), missed it again! Why won’t you do anything for the camera? You have family across the ocean who want to see what you’re up to!”

Needless to say, we have quite the photo (and pretty boring video) collection. We treasure them all, but when we catch that smile with her looking straight into the camera, it’s GOLD.

Our Little Jet Setter


Today we flew from Rome to London to Chicago. We’ve been up since 4 a.m. Rome. It’s now almost 2 a.m. Rome time, and we are finally sitting at my parents’ house.

Mom and Dad are wiped and Annie is ready to play! Even after an incredibly busy and adventurous day. Here’s how Annie’s day went….

Woken up by mom at 4:30, at least three hours earlier than usual. Didn’t phase her. All smiles, even at this ungodly hour!

Dad has a broken ankle, so Annie and mom (Annie in carrier of course) had to roll all the baggage, baby seating, etc. out to the courtyard to wait for the driver.

Met driver. Flirted with driver. Cooed the whole way to Fiumicino Airport.

Arrived at Fiumicino around 6:00. While mom and dad clumsily got luggage situated on the curbside, crowd of young Italian men (smokers of course) formed and cooed at Annie. “Bellissima bimba,”  “Ciao piccola!”

Since Dad is on crutches; waited for wheelchair assistance to help us through security and to our gate. More admirers gathered.

Nice Italian lady who’s supposed to be assisting Dad, wants to “assist” mom instead; aka hold Annie while mom goes through security.

Flirts with nice lady supposed to be assisting Dad.

Mom pries Annie from arms of nice Italian lady. Head to gate.

Nice, uneventful flight to London, plus lots of adoring stares from several passengers.

Lovely British flight attendant offers to hold her while mom gets carrier in position for trek for our connection. More flirting. Carrier in position. Lovely British flight attendant not ready to give her up, walks Annie all the way out to the terminal, followed by several other flight attendants and pilot. Annie has new fan club at Heathrow. “Cheerios” and “Good days” and a kiss from lovely British flight attendant.

Meet frantic traveling family in family changing room. Really grateful for our day so far!

At this point it is probably about  11:30 a.m. Annie hasn’t cried once 🙂 Love this girl.

Wheel chair assistance running VERY far behind. Decide to make trek to gate with carry-ons, baby, and dad on crutches. Gate is VERY far away. Regret this decision.

Lots of contagious smiles and flirting on way to gate.

Still no fussing. Who is this kid?

Board plane for Chicago. Hold up boarding process a bit because passengers pause to get a glimpse of Annie as they pass.

Annie spends the duration of the flight in arms of mom, dad, or little bassinet thingy hooked to wall in front of mom and dad. 8 hours on plane. Mom and Dad exhausted. Annie cooperates as usual. Eat, play, sleep. Laugh at ceiling of plane. Laugh at new surroundings in bassinet. Laugh, laugh, laugh.

Annie loves the bathrooms on planes. Today, I realized that every time I have ever taken her into a bathroom to use the changing table on a plane, she does her little “I’m so excited” dance. She pulls her hands to her chest and puts her feet straight up in the air and smiles the biggest, bashful smile. I have no idea what it is about an airplane bathroom that fascinates her so. Maybe the close quarters or the fluorescent light. Maybe it’s the break from the dark row of seats. I really hope it’s not the smell. But whatever it is, she loves those bathrooms.

Plane lands in Chicago. About 20 passengers comment on what an amazing little traveler she is and stop to let her grab their fingers. Everyone wants to meet her.

Even the officer at customs cracks a HUGE smile for Annie. He can’t believe how calm and content she is after her 13 hours of airports and airplanes. It’s the first time I’ve gotten a smile at customs!

Our little jet setter knows how to travel! She did way better than mom and dad!

Please excuse the lazy writing….It’s been a LONG day!

Più domani! (More tomorrow)

Lessons from Aunt Mary


I have always tried my best at being politically correct when speaking about race, religion, people with disabilities, etc. It’s not something I have ever tried to push onto others; I just always wanted to be conscientious of the way I spoke so I wouldn’t hurt anyone’s feelings. I grew up in a family where anything less was unacceptable. “Don’t judge a person until you’ve walked a mile in their shoes” and the classic quote from Bambi: “If you don’t have something nice to say, don’t say anything at all” are phrases I constantly heard throughout my childhood.

I was extremely fortunate to grow up surrounded by so many aunts and uncles. I am so grateful that they are all a continued and constant part of my life, even living so far away. I consider myself to be close to all of my aunts and uncles; but my youngest aunt and I are very close. She was born with spina bifida. She is one of the strongest, bravest, and most influential inspirations in my life.

Ever since I was a little girl, Aunt Mary would take me everywhere with her. Even at the age of 5 or 6, I was aware of the stares. She taught me very early in life to hold my head up high and not be ashamed of who I am.  It didn’t matter that those people who couldn’t look past her disability stared; they were the ones missing out. I got to hold her hand and see the world through her eyes. I was aware that my aunt walked differently than the rest of the adults in my life, but to me she was (and still is) fun, smart, and a bit crazy (in a good way) Aunt Mary. Aunt Mary who loves to be with her nieces and nephews more than anything and who has forever spoiled them rotten. Who can make you laugh so hard you fear you’ll pee in your pants. Who loved to host sleepovers. Who has to have all our love interests pass the “Mary test” before a “relationship status” can be set.

When I was old enough to talk to her about her experience with a physical handicap, I learned so much about this amazing woman. She was made fun of nearly every day of her elementary and secondary education. And still she somehow managed to get out of bed everyday and walk through those school doors (of course, my grandmother would have it no other way). Not only did she have a physical handicap to challenge her everyday (including leg braces, multiple surgeries, a shunt, learning to walk without the ability to feel the ground beneath her feet), she was constantly teased and ridiculed for it. She had more people holding her down than up. But with the love and support of my family and her unnervingly strong will, she has accomplished so many wonderful achievements.

My aunt graduated from college with a degree in psychology and went on to earn a Masters’ degree in Social Work. She has spent so much of her life bettering the lives of others, mine especially. She is one of the most intelligent, beautiful, funny, caring, compassionate people I know. It saddens me that so many people didn’t or don’t look past her physical difference to see what I and all of the people her life touches get to see.

Aunt Mary taught me many lessons; some big ones, some small ones  She taught me at age 4 that punching my little sister in the toilet definitely wasn’t going to get me the orange pop I wanted, or anything else for that matter. She taught me how to apply make-up and how to paint my nails. She taught me that giving up is never an option. She taught me what being a true friend really means. She taught me what I deserve out of love and life, and to never settle for anything less. She taught me to look beyond the outside, to see within. She, more than anyone else in my life, taught me how to laugh at myself.

When I was ten she taught me never to use the word “retarded.” She made me so very aware of the ways words, unlike the common “sticks and stones” phrase, can really hurt people. She taught me to think before I speak. And for this I am eternally grateful.

Fast-forward to today. I am the mother of a beautiful baby girl who was born with an extra chromosome. Who will undoubtedly, like all children, one day have her feelings hurt by words. However, my baby, like my aunt, is different than the “norm” because of a syndrome she was born with. And will, like my aunt, face more ignorance and, undoubtedly, more hurt than the “typical” children her age. Before Annie was born it never bothered me how other people talked, I just tried to be incredibly careful of the way I talked.

Now, I am on the other end. The end where those words sting. So today I am asking that you try and think before you say, “I’m retarded” because you forgot the grocery list, or “What a retard!” when the quarter-back fumbles the ball. And also that you try a little harder to take the time to look past the outside to see what there is inside. I think you’ll be pleasantly surprised!

I love you Aunt Mary! Thanks for all the lessons!

21 things about my baby


I wish I knew continued…..

I wish I knew Annie’s diagnosis wouldn’t put our lives on hold or alter the dreams we had for our family.  She’s more like a typical child than not. We are a regular family and still get to do all the things a regular family does. When we were first given the diagnosis, I thought our lives changed forever, that we may have to move back home (to the states), that we wouldn’t be able to do the things we had planned. I remember at her two week appointment asking her pediatrician if we could take her places, for some reason, specifically, if we could take her to the beach. He looked at me funny and laughed. He said in his broken English, “You can take her everywhere. Your lives are the same. She will swim and laugh and play and be just like all children, just a little bit different.” I realize now how silly I was to think I wouldn’t be able to do these things with my baby girl because she was born with Down Syndrome.

Another mom in my online support group gave me the best advice yet. She said “don’t change any of your plans just because of Down syndrome until you HAVE TO, or WANT TO.” When I read these words it was like a weight was lifted off my shoulders. My family has been given the wonderful opportunity to live abroad in the gorgeous city of Rome in the beautiful country of Italy. Moreover, we have the opportunities to travel all over Europe and even into Africa for my husband’s job. I had been so excited to share these wonderful adventures with the child I had been expecting for the past 8 months and had been dreaming about since I could remember. What a life we would be giving her! When Annie was born, I thought we had to give that up. Again, how silly I was! Annie has been to so many places with us. We are enriching her life in so many ways, but she has enriched ours SO much more.

The same mom who gave me the advice I so needed to hear in those early days, recently came up with this great idea for us to share 21 things about our babies with Down Syndrome. So I am choosing to use this great idea for today’s post. My 2nd of 31 straight daily posts to share Down Syndrome awareness. And you will see…Down Syndrome doesn’t hold us back one bit!

She’s only 6 months and it’s surprising how hard it is to only pick 21 things!

Here goes…

1. Annie was born in Rome, Italy.

2. She looks exactly like her dad. Especially when they are sleeping.

3. She loves bathtime.

4. She was baptized at St. Peter’s Basilica, aka The Vatican.

5. Thankfully, she loves to fly. She has flown over the Atlantic twice already and will make the journey 6 more times by the New Year.

6. She’s stubborn and knows how to get her way.

7. Annie has a total of 13 “real” aunts and uncles and counting. She loves and misses them every day.
We’re still counting her adoptive aunts and uncles. 🙂

8. She is the youngest kid living at the JFRC university campus. She is also a favorite on campus.

9. Her favorite color is green. You may think it’s too early to know this, but we do. Just ask her Aunt Ginny and Uncle Andy.

10. She once faked sleeping to get out of physical therapy. Our therapist in Rome comes to our home. Annie threw a fit, fell asleep while nursing for a bit (or so I thought). She hadn’t heard our therapist’s voice in a while so she opened her eyes just a bit to check to see if it was safe to wake. It wasn’t, so she “went back to sleep” 😉 I kid you not, this really happened and she was definitely faking.

11. She has already in her first 6 months of life traveled all over Italy and been in 4 states in the U.S.  In two weeks she will add Poland to her list.

12. She’s beginning to suck the same exact fingers I sucked as a child: Left hand, pointer and middle. She does this while twirling the hair on the back of her head with her right hand. So precious. She still loves those thumbs though!

13. Every morning when she wakes up she kicks her covers off…just like I find her dad in the morning.

14. She prefers veggies to fruits. Every time I introduce a new fruit she makes a classic sour-puss face. Here’s prunes…

15. She’s swam in the Mediterranean Sea.

16. She is a Daddy’s girl!

17. She attends Calcio (mini-soccer) games on Wednesday nights. We have a “for fun” calcio league for the college students studying here in Rome. Annie and I are Team Blue’s Mom and baby! We are undefeated so far. Dad plays for Team Red, they’re not very good. 😉

18. She sat in on a law school lecture when she was about 4 weeks, via skype. Uncle Danny couldn’t resist. She almost got him in trouble.

19. She is the middle of three great-grandchildren on her father’s side. And the second youngest of 11 on her mother’s side. The oldest of any of these cousins is THREE!!!

20. She loves being kissed under her chin more than anything.

21. She is the source of more love and happiness than I have experienced in my 30 years combined. She is our “miracle baby.”

Annie~ We love you more than words could say!

Down Syndrome Awareness Month


October is Down Syndrome Awareness Month.

Awareness is something I wish I had had more of.

I wish that I had known more about Down Syndrome before. Not before my pregnancy, or before Annie’s birth. Just before. Most people don’t know that much about Down Syndrome unless it affects their lives. And even then it’s not until it affects their lives that they do know. More times than not, when parents find out their child will be born with or has been born with Down Syndrome they know close to nothing about what it is or what it means. Things unknown and foreign can be a very scary and overwhelming, even unwanted. I think that’s the hardest part.

This doesn’t mean I wish I had gone through with genetic testing so I could research and prepare. Had that been the case, I would have found very little of the awareness I wish to share in this post. If I had chosen to undergo testing, would I have been a little bit better prepared? Maybe. Since Annie’s diagnosis, I have done a lot of reading and research. Some very helpful, some NOT. In honor of this Down Syndrome Awareness Month, I plan on sharing all the things I wish I had known. It’s hard to know where to start, but here goes…

I wish I knew not everything you read is always what it seems.

If you look Down Syndrome up in the dictionary, this is to some degree  all you would find.

Down syndrome |ˈdoun ˈsindrōm|(also Down’s syndrome) noun

  • congenital disorder arising from a chromosome defect, causing intellectual impairment and physical abnormalities including short stature and a broad facial profile. It arises from a defect involving chromosome 21, usually an extra copy (trisomy-21).
  • ORIGIN 1960s: named after John L. H.Down (1828–96), the English physician who first described it.
  • usage: Of relatively recent coinage, Down syndrome is the accepted term in modern use, and former terms such asmongol, Mongoloid, and mongolism, which are likely to cause offense, should be avoided.
Words that stick out to me when I read this definition are defect, intellectual impairment, and physical abnormalities. All of these words would be scary to any expecting mother, especially when there is very little awareness of what living with Down Syndrome is like.

I know that I shouldn’t take offense when every time I pick up a book on Down Syndrome, I first come across the word “defect.” Defect suggests a fault or imperfection. The exact definition of defect is “a shortcoming, imperfection, or lack.” So every time I pick up a book on the syndrome my daughter has, I have to read this rather negative word. Usually the readings I have come across describe this defect in greater detail: “something goes wrong during fertilization,” and  “mistakes can occur during meiosis,” or “Down Syndrome as a result of faulty chromosome distribution.” However, not once in all this reading have I come across the cause for this “mistake.”

So, my thought is if no one can determine why Down Syndrome occurs, who gets to determine that something “went wrong,” or “mistakes were made,” or “that a fault occurred?” 

Certainly something “different and unique” occurred. But if we can’t even find the cause today, when science is at a point when we can detect the presence of the 47th chromosome as early as 8 weeks into pregnancy, who’s to say it was a mistake?

Down Syndrome is not a fault or imperfection, rather, it is a development that deviates from what scientists (and, as a result, society) deems to be the “norm,” “benchmark,” or whatever you want to call it. Imperfection is hysterical in its own right. Who in this world has a “perfect” baby? There is an obsession among people in the last half-century or so (arguably longer) with PERFECTION. The perfect hair, the perfect body, the perfect house, the perfect score – and on. Instead of calling the development of a 47th chromosome a “defect,” “fault” or “imperfection,” we should do the simplest of things and recast the 47th chromosome in a positive light and call it “extraordinary.” Who in our perfection-obsessed society doesn’t love extraordinary? Few, if any. This is the same attitude I wish existed toward Down Syndrome and people with Down Syndrome.

So, until someone can prove otherwise, I choose to ignore the books and to believe that something “special, unique, and extra” happened that “normally” doesn’t. I choose to believe that there is a reason for this extra appearance in 1 out of 700 or so pregnancies. I choose to believe that there is a reason higher than science – since science can’t prove it – that Down Syndrome exists. I choose to believe that Annie was made the exact way she was meant to be. And you know what? I am thrilled with that!

Almost forgot to mention….Our baby girl is 6 months today! And it’s been the best six months of our lives. Happy half-year Annie! The picture at the top of the post was taken today. The slideshow starts with a pic of Annie just hours old, then a day, then a week then months 1-6. She’s getting so big!

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