Monday, October 12, 2015

Down Syndrome Awareness Month

My sister, Dina <3
November 1975 - January 2011

As some of you may or may not know, I grew up with a sister who had Down Syndrome.  My sister Dina lived a wonderful life and passed away at the age of 35.   When Dina was born in 1975, my parents were sitting in their hospital room as the doctor walked in the room. He walked in the room with a cigarette hanging out of his mouth, sat on my mom's bed and said "your daughter is a mongoloid" and proceeded to show them a picture of what a mongoloid child looked like.  My parents reacted the way that any parent would react when finding out their child wasn't "perfect". They cried and cried and cried.  Not only was my sister born a mongolian (with Down Syndrome) she was born with a hole in her heart which can be very common in children with Down Syndrome.  Dina had open heart surgery when she was just  2 months old.  At the age of 2, the doctors told my parents that Dina most likely would not live past 5. When she hit 5 years old, they proceeded to say she will not live past 8, then it became 12 and last they said statistically, she will not live past 15.  The first 15 years of my sisters life was a literal roller coaster for my parents. Imagine thinking that your child was going to die by a certain age?! Being a mother myself, I can't even begin to imagine hearing those words.  What's great about this though is that God is the Great Physician and only God can say when your time to go is.  God had much greater plans for Dina. He used her for 35 years to bring joy to our family, to our friends and to strangers who she met along the way.

Dina was a member of the Arc of Atlantic County. If anyone has a child with disabilities and is looking for a wonderful program to involve their children in, please contact the Arc. The Arc gave my sister some of the best memories of her life.  She attended dances, holiday parties, social events, learned cooking skills and even worked with a job coach who helped her find a job. Dina worked a few jobs, some were good and some not so good. It was really so sweet seeing people treat her as if she was "normal" yet other times, it was really hard to watch people treat her as if she was a freak of nature.  Luckily for Dina, she was given 2 of the best parents. My mom and dad loved Dina with all of their heart and treated her as the princess of the family. My mom quit her job to stay home so that she could be the one to take care of Dina day in and day out.  They were the best of friends. Gosh, I can remember my mom and Dina driving around in my mom's convertible eclipse jamming out to music and Dina would sing at the top of her lungs. Another fun memory of my mom and Dina is whenever Dina had a party to attend whether it was a fancy dance or a halloween dance, my mom made sure Dina was always dressed the best.  I can remember sitting in my living room with my mom and Dina as my mom did her makeup for her halloween costumes year after year. The funny thing is, Dina won almost every single costume contest that she participated in.  My mom gave her all to my sister and still does to this day even though she has passed. I'll get into that more as I go on.  My dad and Dina on the other hand had s really special bond as well. They always liked to play practical jokes on each other. There are so many funny stories to tell of them but Dina enjoyed nothing more then smashing a big piece of cake in my dads face haha.  What I would do to hear her laugh one more time or just to even see her big smile as she was getting ready to do something to my dad.

Another great memory of our time with Dina was our dinnertime conversations. Dina's speech wasn't very clear and although we could understand most of what she said, there were many times that we had no idea at all. My family and I talk about this all the time, but every night at dinner, Dina would tell us about her day at school and we would all have to take guesses as to what she was saying. There were times that one of us would get it and she would be so excited and other times, no one could figure it out, yet she would still laugh.

Dina meant the world to me and to this day, seeing any child with Down Syndrome makes my heart sing.  I'm probably one of those people you find staring at a kid with Down Syndrome but i'm not staring at them to be rude, I'm staring at them because I would love to just pick them up and squeeze them.  If only they knew how much joy they bring to my life.

we took Dina to a Celine Dion concert and Celine Dion came off
stage to give her a hug! Celine was Dina's absolute favorite!

Remember above when I said that my mom still gives her all to my sister? Well since Dina passed away 4 years ago, my mom has continued to raise money for the Arc of Atlantic County. Dina used to participate in their Step Up for the Arc walk every year and she would ask everyone for money and trust me when I say, she wouldn't let anyone say no. It was such an important thing for Dina and she looked forward to the actual walk every year.  To this day, my mom carries Dina's excitement and dedication on. The first 2 years after Dina passed, we all created fundraising pages and asked for donations for the Step Up for the Arc walk, but the last 2 years, my mom has organized, planned and dedicated her every day to a Team Dina Golf Tournament benefit. The tournament has been held both years at The Links Golf Course in Brigantine.  The first year of the tournament, my mom had 72 golfers and raised $6800 and just last month, she had 82 golfers and raised $7600.  To us that's amazing but to my mom, that money isn't close to enough to show her appreciation to the Arc for all they did in Dina's life.

You may be asking what the point of my story is.... The point of my story is that since I started my photography hobby as you may call it, I have been wanting to photograph kids with Down Syndrome. The thought has crossed my mind on several occasions but it wasn't until this past August that I decided I was definitely going forward with it.  On August 27th, I was sitting at dinner with my girlfriends and I told them how I wanted to do a photo shoot for Down Syndrome Awareness month and that I wanted to find several kids who had Down Syndrome to photograph.  I was unsure of the correct wording to use in my facebook post but they all helped and inspired me to post my model call.  Within minutes of posting the model call, I had several emails and posts from parents of a child with Down Syndrome or people tagging someone they knew with a child who had Down Syndrome. The outcome was way more then I expected and I was suddenly so excited.  I planned my photo shoot for October since October is Down Syndrome Awareness month.

Once I knew that things were getting real, I started planning out my vision as to what I would like my images to look like. I got this vision of little girls wearing frilly lace dresses and boys wearing bow ties and suspender.  I then contacted Posh Peanut boutique on facebook and told them what I was doing and told them I was looking for a boutique to either discount or donate the dresses for the photo shoot. To my complete surprise, they quickly replied that they would like to donate all of the dresses for the photo shoot. I couldn't believe how quick someone could say yes to that.  A week or so later, I came across an IG shop on Instagram called Closet of HJK. This little shop sells adorable bow tie and suspender sets so I sent them the same message that I had sent to Posh Peanut and to my surprise again, Elise replied saying she would like to donate all of the bow tie sets. Everything was just falling into place. The amount of excitement that I was feeling was indescribable.

Dina sang a song for my husband and I at our wedding in 2009 <3

Today, someone asked me why I did this photo shoot and what I was hoping to get out of this photo shoot. For one, I did the photo shoot for my own joy. I knew that seeing these little ones and capturing them on camera would bring nothing but happiness to my life.  Second and really the most important reason that I wanted to do this photo shoot was to help raise awareness on how those with Down Syndrome are some of life's biggest blessings.  When I was pregnant with my first son, I went to my 12 week check up and the doctor told me that I was due for my genetic testing to test for Down Syndrome along with other things.  I told him that I was going to pass on the genetic testing because if my child was to have down syndrome or any other syndrome or disability, it wouldn't matter to me.  At that time, knowing that I had a sister with Down syndrome, the doctor got very firm with me and told me that I needed to get the genetic testing and that if him and his wife found out they were possibly expecting a child with down syndrome, they would terminate the pregnancy right away.  The amount of sadness, shock, disappointment and anger that I felt in that moment was surreal.  I walked out of his office with tears streaming down my face, got in the car and called my husband right away. I never went back to that man's office and can hardly bare to hear his name.  That being said, I can't help think that sadly and unfortunately, many people would have the same exact response that this doctor did and many people terminate their pregnancies with just the sheer thought that their child could have down syndrome.  I can honestly say that I feel bad for those people. I feel bad that they missed out on the opportunity to have a child with Down syndrome. They missed out on the absolute joy that their child with Down syndrome would bring them. Please don't get me wrong, raising a child with Down syndrome has it's hardships such as medical issues like my sister did but what i've learned from raising 3 kids of my own over the last 5 1/2 years, they all come with hardships. Some more then others.  My goal from this photo shoot and my blog post is this....I'm hoping that I can help open the hearts of even just 1 family who may be contemplating terminating their pregnancy due to having a child with Down syndrome. If that family is yours, please know this....although you will have your ups and downs as you raise your child with Down syndrome, your heart will love that child thousands times more then you could ever imagine and you and your entire family will be blessed eternally.

Well, yesterday, October 11th at 4:30 pm, my dreams of my Down Syndrome photo shoot came true. I met 11 of the most beautiful children i've ever seen.  All in all, I would say there were about 30 or more people at this photo shoot. Some people included the parents, grandparents, siblings, aunts and friends.  The amount of joy on everyone's face as we did the photo shoot was more then I could handle.  The photo shoot was so much fun. Some of the kids were happy as ever, some overwhelmed, some naughty and some stubborn. These are all the adjectives that I think of when I think of my sister. During all of the craziness, I was able to capture photographs that exceeded every expectation that I ever had.  There were a few times that I looked over to see my mom with tears in her eyes and a smile on her face as she reminisced of my sister being that small. There were times that I heard my mom cheering on these little kids from behind me as she got them to look at the camera. Although I was loving my role as the photographer, I wish that I was able to sit back and take in all of the craziness and excitement. My heart is so happy that I, along with the help of Posh Peanut, Closet of HJK, my mom, my friend Heidi and her daughter and the participation of my 11 families could pull off such a memorable experience.  Yesterday is a day that I will never forget and a day that I hope to replicate each year during Down Syndrome awareness month.

Thank you to everyone who helped make my vision a huge success.  My sister Dina is most definitely looking down from Heaven giggling away and so happy.

I hope you all enjoy these images as much as I do.

Please look below for the link to view my facebook page :) 

1 comment:

  1. Parabéns pelo belíssimo trabalho, sou mãe de Ruan 5anos ele é muito especial em minha vida. Sou fotografa infantil e farei meu primeiro ensaio coletivo com crianças com Síndrome de Down.