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.

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.

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)

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!

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!

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.

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At our 22-week ultrasound, Dott.ssa S. brought in a medical translator, the first time in over 10 appointments that she did this. I was immediately alarmed. The doctors informed us that they found an abnormality in my umbilical cord. I was told that I had a 2 vessel cord and given the option for a late amniocentesis. The doctors told us their was a 25% chance for DS, a possibility that the baby could have a serious heart defect or other defects, or that the baby would not survive the pregnancy. SCARY!  I looked up to my doctor with tears in my eyes as she rather coldly told me, “You have five days to go through with the amnio.” “Why five days,” I asked. She then informed me that after five days, it would no longer be legal to terminate this pregnancy. My husband and I were in shock. We immediately said we wouldn’t terminate, no matter what.

And that’s when it happened: The first spark of a beautiful friendship.

She told us that, legally, she couldn’t tell us what she thought we “should do”. She was glad to hear that we decided against the amnio. She ordered some tests to check the baby’s heart. She spent over two hours with us that day. And after 16 weeks of meeting with her, I saw for the first time what a caring and compassionate doctor I had. She made our next step so easy….we let go and let God. I am so glad I didn’t get the amnio. I would’ve been freaking out through the whole pregnancy, researching everything, and worrying about all the things Annie could have. Undoubtedly, this would have been harder on her during the pregnancy. Dott.ssa S. quickly became Giorgia, available 24/7. She kept me calm and strong.

I started having contractions at 6 1/2 months and had to go on medication to stop them, with periods of bed rest. Annie was born almost a month early via C-section because I had too little amniotic fluid left. We received a clinical diagnosis (testing still had to be done for confirmation) at the hospital the morning after, though I knew the moment they laid her limp body on mine (a topic for another day). Giorgia was there along with a pediatrician and geneticist. She stayed in the room with us for so long I can’t remember. She cried with us and held our hands. She said ALL the right things, which I needed, because following our sharing the news with others, so many said the wrong things. After ten days of non-stop tears, I sat down and wrote this….

Today, for my first post, I was going to write a brief summary of our story and how I came to be writing this blog in the first place. Instead, I am writing to celebrate a life we lost yesterday: Annie’s Great Grandpa, who died yesterday at 85.

Great Grandpa (my husband’s grandfather) was the kindest and most generous man I have ever met. Three years ago I was lucky enough to have met Michael, the man of my dreams, who I am certain is the man he is today in great part of his grandfather. He’s my husband’s grandfather, but has been a huge part of my life since I met Michael. Great Grandpa has filled our lives with love in so many ways. He has not only touched his family members’ lives, but so many others, even strangers through his enormously generous heart. His donations to numerous organizations have reached and touched the lives of so many, with donations to an organization for Down Syndrome research being one of  the latest on his list. We’ve been so far from him the past year after moving to Rome. And we were really used to seeing him all the time. When we lived near him, Michael and I had dinner with him nearly every week. When Annie and I were home for the summer, we visited often, but he was so smitten with her he called everyday, sometimes twice a day to see when his next visit from her would be. His apartment was literally wallpapered with photos of his three great-grandchildren.

We named Annie after his amazing wife Anne Kathleen, who passed last Christmas after a 17-year bout with Alzheimer’s. If you’ve ever read or seen The Notebook, the story is so similar to the love between my husband’s grandfather and grandmother. He moved into her nursing home when her illness progressed to the need to live apart from him. He visited her everyday, knowing very well the love of his life wouldn’t recognize him.

Great Grandpa was blind and had just recently needed to go from having caretakers during the day toaround the clock. He hated this and his lost sense of independence. His death was very sudden and quite surprising. He had a moderate stroke five days ago and we were told that in six weeks he would be on the road to a good recovery. We booked a flight for Michael to go back to the States to see him…it’s very hard being so far away. He was supposed to leave today. Yesterday Great Grandpa’s lungs began to fill with fluid and the doctors made it as comfortable for him as possible. He died early in the morning. Michael never left. We are so sad we didn’t get to see him one last time.

We are trying to celebrate knowing that after 16+ years Great Grandpa is together again with Great Grandma, but my family is hurting and we miss him more than words can say.  He ended a recording of a storybook for Annie by saying “Annie, I love you and I always will!” We are so glad she will forever have this message with his voice behind it.

Grandpa, we love you and we ALWAYS will.