Celebrating Down Syndrome Awareness Month: Family Portraits with Toddlers

If you saw the blog last week, then you know that October is Down syndrome awareness month. It’s a chance to celebrate the many abilities and tell the inspiring stories of children and individuals living with Down syndrome. Earlier this year, on World Down Syndrome Day (3/21 for 3 copies of the 21st chromosome!),  I was able to connect with a few families in the Saratoga Springs area whose children have Down syndrome. One of those children is Theo and I gifted him (and his family) a portrait session so we could capture what makes Theo so incredible and unique! 

Theo is just 20 months old but he is already bringing so much joy and happy energy to his family. He was born at 32 weeks and spent two weeks in the NICU. A little warrior, he wound up hospitalized again just 2 weeks after he left the NICU for RSV. This guy has been through a lot! When we met, he was working so hard on reaching his next big gross motor milestones, and his family called him “The Maniac” because of how excited and motivated he was to stand and crawl. He loves hugs from his big sister Adelina (what a beautiful name!!), and he was just the most cuddly little guy.

Although Theo isn’t quite two yet, you can already see the incredible bond that he and his sister have. He loves being near her and they are so sweet together! She is kind and patient with him, and I know that all of the challenges he’s already faced has brought this family even closer. I truly couldn’t stop smiling while they were in my studio. Theo brought ME so much joy and for that, I will always be grateful. 

To Theo and his family, thank you for sharing your story with me. I am in awe of what this little guy has been through - and the happiness he continues to exude. I know that he will continue to grow into his personality. He honestly reminds me a lot of my best friend’s son, Zach, who inspired this passion project to document and capture what makes children with Down syndrome special! I am so lucky to have this honor for so many sweet families.

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Meet Cylie - A Session to celebrate National Down Syndrome Awareness Month

As we continue our annual passion project of portrait sessions to celebrate National Down Syndrome Awareness Month, I am excited to share this adorable studio session of Cylie and her little sister Hailey.

Cylie was filled with smiles and questions, pointing out everything in the studio and completely in awe of the tiny wraps, headbands, and all of the baby portraits & cake smash photos on the walls. She was filled with curiosity and excitement, and I absolutely loved photographing these portraits for her family to enjoy.

Her little sister jumped in for a few photos, too, and they share the sweetest bond!

Future Rockette with that leg kick!

Did you know that individuals with Down syndrome are generally extra flexible due to the low muscle tone and loose ligaments that are commonly associated with DS? For Cylie, that means she can really get that leg up high for those leg kicks! :o)

These girls are so sweet together, and I absolutely loved capturing their special bond on camera.

Meet Kaysen - A Portrait Session for National Down Syndrome Awareness Month

Kaysen has the biggest smile, and such an infectious giggle that everyone around can’t help but laugh with him.

He is such a little sweetheart, and I absolutely loved photographing him this month as part of our annual passion project in honor of National Down Syndrome Awareness Month. When he saw that I had my camera, he was eager to sit down and pose, and he completely melted our hearts with his beautiful personality.

Kaysen’s big sister joined us for a few portraits, and I loved watching the two of them interact and cuddle up together. He adores her! They have such a strong bond, and you can already tell that she watches out for her little brother while also being his biggest fan.

From his mama:

”Kaysen has been special from day 1. He is an IUI baby and after years of trying, he was chosen for us. Kaysen has a more rare form of DS. It's called Robertsonian Translocation 21;21. This means instead of having a full 3rd- 21st chromosome, he has a 3rd attached to one of his current 21st which makes it extended. He was born without a diagnosis and it took 8 weeks to finally narrow down what it was.

”He is energetic, full of life and hysterical. His smile is quite the lady killer… and he knows it! He adores his 13 year old sister, Arabella. Kaysen has exceeded expectations and continues to defy odds. He keeps his therapists on their toes!”

I absolutely loved meeting this special little guy and his family, and I’m so glad we were able to capture these beautiful portraits for them to enjoy!

Three of Hearts Cake Smash | Down Syndrome & CHD Awareness

Meet Harper, Catherine & Mae.  These birthday girls are our "Three of Hearts."

These three baby girls met for the first time at our breastfeeding photoshoot on the beach with Julia's Way in June 2017.  During the photoshoot we discovered that they all were born three days in a row, and they all underwent major heart surgeries at Boston Children's Hospital in their first few months of life.  

These girls are now thriving -- they are heart warriors and breastfeeding champions.  When we also realized that their first birthdays were coming up, we knew we had to do something special to celebrate!  

TIME FOR A VERY SPECIAL CAKE SMASH!

I'm pretty sure that Mae is the smiliest of the bunch -- she has such a wide range of expressions, and I love how excited she was during our session together!  Her sparkling eyes and auburn hair will melt your heart!

You'll see that every baby's journey is unique, and Mae's mom shared a little bit about what makes her daughter "Mighty Mae."

“Mae has had quite a first year. 3 separate heart surgeries including a pacemaker all before 7 months of age. She was inpatient for 75 days before coming home for the first time! A total of 136 days in the hospital in her first year of life. I can’t wait to celebrate her resilience and beauty in this photoshoot. She’s our “Mighty Mae””

— Mae's mom

Little miss Catherine (Cate) is adorable & sweet, and oh-so-dainty.  This sweet little girl didn't want to get her fingers too messy during the cake smash, and she spent most of the time trying to figure out how to get the frosting OFF of her fingers.  Oh, and she has the most adorable eyes framed by her purple glasses!

Cate has come such a long way, and I love this message from her mom!

“Cate was in the hospital for 80 straight days starting right when she was born. She has had 3 major surgeries, one of which was open heart surgery. She has come so far from a 5lb 3oz sick little heart baby to a 17lb happy little girl who sits up, babbles, and plays with toys. ”

— Cate's mom

And Harper was the frosting queen!  Not one to shy away from sugar (this is a girl after my own heart!), this cuddly little girl was immediately covered in frosting and loved making a great big mess.  She had her fingers in the cake before I even picked up my camera, and she definitely loved this birthday experience!

Harper's mom shared a few inspiring words on her heart warrior's journey:

“This session is so important to me because prior to her diagnosis we were expecting a “normal” healthy baby. The news of her Trisomy 21 devastated us, but her heart defect caused us to mourn her. We anticipated the worst and grieved her loss prematurely. I want others to know that neither diagnosis is not necessarily a terminal one and that she has brought so much love, joy, patience and understanding into our lives. She has changed every member of our family for the better!!!”

— Harper's mom

Loved this session?  Leave a little love for our "Three of Hearts" in the comments below, and please share this session on Facebook to help us spread the love for these heart warriors!

More Than an Extra Chromosome: World Down Syndrome Day 2016

Happy World Down Syndrome Day!

March 21 is World Down Syndrome Day, celebrated today because individuals with Down syndrome have a third copy of the 21st chromosome.  Naturally, 3/21 is the perfect date to celebrate how amazing these individuals are that rock that extra chromosome!  (But really, we celebrate them every day!)

If you've been following along on my page for awhile now, you know that Down syndrome awareness and advocacy are two topics very close to my heart that I share about often on my social media and website.  You can read more about the beautiful stories & smiling faces that I've been fortunate enough to capture over the past six months here through our ongoing photo series celebrating children with Down syndrome.  Meeting these families, listening to their stories, celebrating their children, capturing their true personalities, and hearing the ways in which their photos have impacted YOUR LIVES has made this such a meaningful project for me, and one that I am proud to continue sharing each month.

When the opportunity arose to organize photo sessions for children in the Albany area with Down syndrome, I was excited and honored to have the chance to meet so many more inspiring families.  This time, I approached our photo series with a new mission in mind.  So often in stories that focus on these amazing individuals, the word "extra" is often followed by "chromosome".  But there is so much more to these incredible people than just a tiny piece of DNA!  They are more than just an extra chromosome.  They are extra silly, extra brave, extra smart, extra charming, extra chosen...... extra everything!

I hope you'll enjoy their beautiful stories and their smiling faces, and remember to take a moment today to do an extra good deed for someone in honor of World Down Syndrome Day.  Want to take it a step further?

Educate yourself: www.ndss.org
Find a Buddy Walk: http://www.ndss.org/Buddy-Walk/
Contribute to scholarships for adults with Down syndrome: https://rubysrainbow.org

"We had a prenatal diagnosis, and we tried to educate ourselves about Down syndrome.  So much of the information is terrifying, and we were scared.  We decided to prepare for the worst and hope for the best.  KiraLynn is the youngest of 7 children and is the light of our world.  Our journey is nothing but joy, and love.  I wish I could go back and tell myself not to worry so much.  She is happy, loving, goofy, has a terrible temper, and is wildly mischievous.  She is everything."  ~KiraLynn's mom

"Our story is unique, just like Brennan. We got his diagnosis a week after he turned 1. There was shock, sadness, fear and so many questions. I don't remember the day when I realized that I no longer was upset about this. Having a child with Down syndrome is an awesome gift! I feel honored that we were chosen for this, after all, we only had a 1 in 600 chance." ~Brennan's mom

Brennan was diagnosed with Down syndrome after his first birthday, which is much later than when the typical diagnosis occurs. Read his mom's touching story published for GiGi's Playhouse, Inc. here: http://gigisplayhouse.org/syracu…/uncategorized/downsyndrome

Evan's 9 year old sister, Ella, wrote this touching story about her brother for us to share in honor of World Down Syndrome Day.  I love the love!  It's so true when they say if you want to know how to treat a child with Down syndrome, just watch to see how their siblings treat them... just like everyone else!  This is the sweetest.

"Evan is a great brother. I love Evan because he loves me. I love how he loves to play with me. He is so much fun! We like to play a game where we are magicians. Evan is the best magic partner ever! Evan is really good at making friends. When I'm sad, I always want Evan because he makes me laugh. He says, "why sad?" I say, "because." He'll say, "why because?" He knows a lot about me! He knows I love laughing and he doesn't want me to be sad so he makes me laugh. If the whole world knew Evan, then everyone would want to be me so Evan could be their brother." ~Evan's sister

Below, these three beautiful sisters have so much personality: Autumn, Masha & Summer.

"From the minute Coco was born and diagnosed with Down syndrome our lives have been filled with joy. Coco, named before she was born is the perfect name for her because it fits her to a tee...she's fun, sweet, playful, fashionable and yes full of sass!" ~Coco's mom

"Peyton is an energetic 5 year old little boy who loves to play outside and spend time with his siblings. He LOVES to be the center of attention and can be very mischievous but he says he's being "silly"." ~Michelle

"Reese is our 7 year old princess.  She loves anything purple, pink and sparkly.  She also loves music, swimming and dancing.  Anyone who has spent any significant amount of time with Reese has told me that she has impacted their life in some way.  Her smile and her hugs bring joy to everyone that she meets.

"We found out that Reese has Down syndrome the day after she was born.  At that moment, I decided that we would not treat her differently just because she has Down syndrome.  Down syndrome is just one small part of who she is."  ~Reese's mom

"We received Lukas' diagnosis at birth and it was a huge surprise. There were so many emotions surrounding it all but the one that stuck out the most after my love for him was fear. Fear of raising a child with a disability that I felt unprepared for, fear of Down Syndrome and not knowing what it truly meant, fear of how he would be perceived and treated in his life, and mostly fear of the unknown.

"Four years later I am happy to say that I no longer fear raising a child with Down Syndrome for I do not see it as a disability but a different ability. I have a greater understanding of Down Syndrome and see it in a different light than previously. The only fear I have left is the fear of how he will be treated and perceived by others. Lukas is a beautiful, funny, sweet, smart, loving son and big brother. He has brought more laughter and joy than tears and sadness to our life. I never knew I could love someone as much as I love him. I wouldn't change him for the World but I will change the world for him so that welcoming a loving soul with Down Syndrome into the World isn't something to fear any longer because to me he is perfect just the way he is!" ~Lukas' mom

"Allie is an amazing little girl that brings a smile to anyone that meets her. People seem to go out of their way to come to her to say hello. She can make the darkest days just shine! She really is the best daughter, little sister, granddaughter, cousin, niece, and friend that we are all lucky to be blessed with. Allie bear is our darling!" ~Allie's mom

"Our sweet boy Ryland had quite a few surprises for us during his first twenty four hours of life!  Between learning that he was born with Down syndrome and discovering that he had a rare combination of heart defects, it was quite a whirlwind at first!  He's come a long way and fills our hearts with so much joy each and every day.  He is a very social little boy who can brighten anyone's day with his infectious smile and contagious laughter.  Laughing, babbling, playing with his sister, and "dancing", are just a few of the things he loves to do.  Ryland rocks our world and we couldn't imagine life without him.  He amazes us everyday with his abilities and we are beyond proud to call him ours!"  -Ryland's mom

"Oliver's diagnosis came as a complete shock to us 10 days after his birth. At first we were devastated and scared. We didn't know much about Down syndrome back then. I wish I could go back and tell myself how amazing he would be. I wish I could tell myself that I would literally thank God for giving us the chance to be his parents! I wish I would have known how funny and silly and how stubborn and smart he would be. I can barely remember what it's like to not know about Down syndrome now! Oliver has brought so much love to our family and brought so many new friends into our lives. He is taking us all on a new and incredible journey. Even all the way to China to adopt another child with Down syndrome!" ~Oliver's mom

"Oscar is a sweetheart. He loves to be cuddled more then anything else. He has been through a lot in his short life. More than we will ever know. He was found abandoned in North western China approximately 2 weeks after he was born. Most likely because he was born with Down syndrome. We came across his name on an adoption advocacy group page. The agency had chosen the name Oscar and since we already had an Oliver and thought that was cute I decided to click on it.

All the children listed had various disabilities, but Oscar happened to also have Down syndrome like our Oliver. And his birth month and year were the same too! It just seemed so meant to be. As a family we decided to do it and signed a commitment letter the next day. 8 months later we went to China and brought him back home to New York.

Now Oscar is a part of a family. He is one of five siblings. He has two big dogs! He gets to have birthday parties, celebrate Christmas and decorate Easter eggs, go trick or treating, apple picking and swimming and go to school. He gets to wear red on Valentine's Day and hand out cards to his friends and wear green on St. Patrick's day! He has a forever family. So many other children are waiting right now all around the world for their forever family to find them. http://reecesrainbow.org/" ~Oscar's mom

Finally, a very special THANK YOU to our friends at Buckingham Confectionary in Malta, NY for donating these delicious treats in blue & yellow to all of the families that came to our photo sessions for the #WDSD16 photo shoot!  We truly appreciate your generosity, and thank you for supporting our cause!