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!

Extraordinary Stories | Photo sessions for the Down syndrome community

As many of you who have been following my Facebook page know, October is National Down Syndrome Awareness Month.  Down syndrome is considered the most common genetic condition, and one in every 691 babies is born with Down syndrome.  According to the National Down Syndrome Society (www.ndss.org), there are more than 400,000 individuals living with Down syndrome in the United States. This month I started a photo & community outreach project to connect with local families whose children have Down syndrome.  My best friend’s son, Zack, was born with Down Syndrome 5 years ago.  I'll never forget the night my best friend told me that her brand new baby boy had DS.  I'll never forget the incredible journey of love, learning, and acceptance that this little guy's family and all of his loved ones embarked on. I'll always be SO thankful for that blessing. We count ourselves lucky to love this little boy who is blessed with an extra chromosome and lots of hugs and kisses to go around.  Because of Zack, I wanted to give back to this community and bring their stories to life through my photographs.

This month I decided to offer complimentary sessions to families who have a little one with DS.  When I reached out to this (not so little) community, I was amazed at the overwhelming response from families across Massachusetts and New Hampshire who got in touch with me.  My inbox was flooded with the most amazing, heart-warming stories, and every single one brought happy tears.  They opened their arms to me, welcoming me into their lives and sharing their stories with me.  They allowed me to play with their children, capture their true personalities, and let their little ones shine in the spotlight of my camera.  We shared hugs, giggles, tickles, “peek-a-boo” games and “ready, set, go” races.

The difference between ordinary and extraordinary is just that little “extra”.

These children are not defined by Down syndrome.  That extra chromosome is a blessing in disguise, helping the families to love deeper, dream bigger, and advocate more strongly.  Their stories are the ones that deserve to be heard.  Enjoy their stories:

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Meet Audrey  (age 9)

“Audrey is a very funny clever girl who has the most wonderful sense of humor. Her smile can light up a room and she has the most contagious little laugh and the BEST hugs that come with a pat on the back.  Some of her favorite things to do are to sing and dance to her favorite, Taylor Swift. She also loves swimming.  She could literally swing on a swingset for hours. She loves to play with her sisters and is great at bossing her dog, May, around.”   ~Audrey’s mom

“The best part of having a sister like Audrey is the way she brings us and everyone that meets her so much happiness. I like having Audrey as a twin because it makes us unique.”  ~Audrey’s twin sister

Meet Drew  (age 3)

“Drew has the ability to make people fall in love with him, his outgoing personality and endless expressions. His sense of humor, curiosity and attention to detail make me smile and fall in love with him even more, if that's possible. He loves to learn, and run around and will no doubt change the outdated perceptions of what it means to have Down syndrome. I will continue to teach him to know no boundaries, and to dream bigger until he reaches the stars!

My experience in the Ds community has changed my life. Quite literally. We were given information on the Massachusetts Down Syndrome Congress while in the hospital after Drew was born. And they were the first organization to reach out to us when we got home. From them, we were connected with our local Ds group, the Morning Travelers, where I've met dozens, if not a hundred families, many who are close friends now. When you find a community that understands, encourages and celebrates similar life journeys, you never want to lose touch. I've been empowered to step outside my comfort zone in many ways by Drew, one being taking the Chairperson role for our local MDSC Buddy Walk! I was honored to address over 3,000 people in our community this past October, 11th and applaud all of them for being a strong community of advocates. Together with the help of the MDSC, we are bringing awareness, inclusion and opportunities to live fulfilling lives to individuals with Down syndrome in Massachusetts and across the globe.”  ~Drew’s mom

Meet JJ  (9 months)

JJ is a very social little boy with big, curious eyes that are made that much cuter by his new glasses.  He is incredibly expressive, and we captured so many of his little faces on camera during our session together.  He loves to laugh and babble, and it’s clear that he brings so much happiness to his mom, dad, and big sister every single day.  This little guy is a fighter, and he had heart surgery at only 2 months old. He rocked our session together — even the tummy time, which you wouldn’t know by looking at the amazing photos that he’s not the biggest fan of.  ;o)

I just love how he's talking to his little toy in the photo below.  What a sweetheart!

Meet Lucy (2.5 years)

“Well, let me tell you about Lucy... She's very much "a Lucy". She's bright,  hilarious, loving, and clearly the prettiest girl I've ever seen. She loves cats, music, and Frozen! She's incredibly expressive, she's speaking more lately but has about 100 signs.  Sign language has been amazing for her.  She shines brighter than a diamond, and that's what I would most like to capture.

The definition of the name 'Lucy' is 'light', and that's exactly what she is. When we found out that she had Down Syndrome, I can honestly say I was not scared. I have never feared for how her life would be. She's been through so much in her tiny little life, I have no doubt she can and will achieve whatever it is she wants to do. That extra chromosome is part of who she is and I would not give it back for the world. She is exactly the little girl I always knew she would be.”  ~Lucy’s mom

Meet Maeve  (8 months)

“I found out when I was about 6 months pregnant that there was a 99% chance Maeve would be born with Down syndrome. We found out about her having Down syndrome and the fact that she had a heart defect that would require surgery within a couple of weeks. Needless to say, that was a rough time. But we decided pretty quickly that we would do what we needed to do for her and stayed pretty positive for the rest of my pregnancy so by the time she arrived we were more excited than nervous.

She had open heart surgery when she was about 3 months old. Her first 3 months really just seemed like a lead up to the surgery day. But she did great, she was in and out of Children's in 6 days. And now that it's been months, it almost seems like it never happened. I say a lot that I wish we could go back in time to when we first found out about all of this and tell ourselves "Don't worry. You'll love her like crazy and she'll be awesome."

I guess I'm biased but Maeve really is the best baby. She's happy, super chatty, sleeps well, smiles a lot. Honestly, we don't even think about Down syndrome all the time. She may get to milestones a little later than other kids her age, but for the most part she's just like any other baby. She sleeps, eats, cries, poops, smiles, and makes us laugh every day. She just got her first 2 teeth a couple of weeks ago and in the past week she started sitting up on her own! Something new every day.”  ~Maeve’s mom

Meet Liam  (23 days new)

“We love so many things about Liam. His beautiful eyes, that always appear so alert and attentive when he is awake, are adorned with gorgeous eyelashes. He is happy and content to be held and cuddle when he's not eating. He sometimes shows off an adorable pout that may be hard to say no to when he is older.

The first few days were a mix of a lot of different emotions. Much of Liam's arrival was a surprise. I delivered at a birthing center because we wanted an out of hospital experience. My labor moved at a rapid fire pace and only lasted  4 1/2 hours. My husband travels for work and missed Liam's birth by just 2 hours. When I first held Liam in my arms, I had a feeling he might have Down syndrome, but I didn't want to ask the midwife until my husband arrived. I learned later that the midwife noticed physical characteristics right away but decided to wait until my husband was with me to say anything. I will forever be grateful for these first few hours when I was able to meet my son, hold him, and bond with him before I knew he had Down syndrome. I knew him as Liam first, before I knew he had a disability. He was my perfect, beautiful baby boy who I loved immediately and unconditionally. Learning he had Down syndrome did not change any of this.

When my husband arrived we asked the midwife if she thought he had Down syndrome. She explained that she noticed the palmar crease, low set ears, and large space between his first and second toes. Then we discussed being transferred to the NICU to check his heart and lungs. The NICU was an incredibly hard experience as we didn't even want to be in a hospital in the first place.

We drew strength from taking one moment at a time and the love of our family. Our parents flew out immediately to be with us. They shared in our sorrow, but also rejoiced in Liam's arrival. This was so important for me. As a new mom, I so wanted people to celebrate and gawk over my beautiful new baby. I needed to see people delight in his presence. This helped get us through the 10 days in the NICU.

Right now we are still in the process of letting go of some previous expectations we had before we knew he had Down syndrome.  We are making room for new ideas as we begin the journey with Liam. We are trying not to focus on Liam's limitations but all of his potential and gifts.

When I hold Liam in my arms, I just see my beautiful baby boy who is an absolute gift. Sometimes I think, "oh yeah, he also has Down syndrome." But that's never my first nor most important thought when I hold him. I hope this is always the case. First seeing Liam for the amazing person he is, while learning about and embracing all of his unique qualities including the fact that he has Down syndrome.”  ~Liam’s mom

Want to learn more about Down syndrome?  Check out the National Down Syndrome Society's webpage here:  www.ndss.org

Do you know someone who would love this post?  Share it with them!  :o)

25 families contacted me this month about sessions for their little ones with DS.  I'm excited to make this an ongoing project, and I've compiled a list of families that I will be in touch with for photo sessions throughout the year.  Want to share your story with me?  Email me at nicolestarrphotography@gmail.com.  I can't wait to meet your little one and hear your heartwarming story!