More Than A Diagnosis – World Down Syndrome Day – Maria’s Story
Today is World Down Syndrome Day. On March 21, people with Down Syndrome and those that love them throughout the world are raising public awareness and creating a single global voice advocating for the rights, inclusion, and well being of people with Down Syndrome. On this World Down Syndrome Day, it is my honor to introduce you to someone that is very special to my heart, my daughter’s best friend, Maria. Maria is a sweet, spunky, and beautiful seven year old girl. We met Maria two years ago when my daughter started kindergarten. She has brought so much joy, laughter, and love into our lives.
I wanted to share her story with you as a part of my More Than a Diagnosis series. Throughout my life, I have been blessed to know many amazing people that were given a special needs or terminal diagnosis. I do not believe that this was by accident. They have stories to tell, and I want to help them tell those stories. I started the More Than a Diagnosis series in the fall when I shared the story of my sweet friends Amanda and Alianna. It is my goal to continue to capture beautiful portraits of those that were given a diagnosis and did not let it stop them from living happy and fulfilled lives. They are an inspiration. I want to use my platform of photography and social media to help them reach those that may need it the most.
I asked Maria’s mom, Kelsey, to tell us more about their lives. I asked her about when they received the Down Syndrome diagnosis, challenges that they have faced, what life is like for Maria, some of her favorite things about Maria, and how she envisions Maria’s future. This is their story. Thank you Kelsey, for sharing it with us.
“On Mother’s Day my husband and I found out we were pregnant with our first child. A few months later, we had an ultrasound done to determine the gender of our unborn baby. It was a girl! At 36 weeks pregnant our little baby Maria was born. One of the best feelings I’ve experienced as a mother has been holding my newborn children in my arms for the first time. Unexpectedly, the day after Maria’s birth there were health issues that required her to be admitted into the Neonatal Intensive Care Unit (NICU). While there, Maria was diagnosed with Down Syndrome as well as a heart defect (common for people with DS) that prevented her from breathing and eating on her own.
Down Syndrome is the most common genetic disorder. Typically, people are born with 23 pairs of chromosomes. People with Down Syndrome have an extra chromosome in the 21st pair, so they have 47 chromosomes. At the time, I knew little about Down Syndrome. It was just a label. What I did know was that this beautiful, perfect, tiny (she wasn’t even 5lbs when she was born!) baby girl was mine. I was her mother. God chose me to teach and raise her. That was all that mattered.
Maria stayed in the NICU for the first 26 days of her life. Initially Maria had a feeding tube that ran from a syringe through her nose and directly to her stomach. In order to go home, Maria had to reliably drink from a bottle. The nurses who worked with her couldn’t get her to eat as much as when Eric or I fed her. Eventually, the doctors agreed Maria could go home because she would only take a bottle from me. What was the point in staying at the hospital when I could easily feed her a bottle in the comforts of my own home?
After discharge from the hospital came the many doctor visits. At one point there were 9 different doctors following Maria for various reasons. Maria was frequently monitored by her cardiologist because her heart defect turned out to be more serious than originally thought. We had hoped that it would resolve itself and the holes would close. One of them did, but the other two did not. As a result, Maria was prescribed 24-hour supplemental oxygen for a time and later a few medications. Eventually, Maria had a cardiac catheterization procedure to patch the holes in her heart and she did not need the oxygen anymore. We didn’t let these bumps in the road stop us from enjoying our baby girl and living life as a new happy little family.
Maria was my sidekick. We went everywhere together. Mommy and me classes, park playdates with other toddlers her age, the grocery store, beach, zoo, community events, etc. From the beginning, Maria has been a source of love and happiness for others. She can brighten anyone’s day with her beautiful smile and sweet spirit. Don’t get me wrong, sometimes she can be mischievous, but there’s just something about her that brings joy to the lives of people who cross her path. Some parents of children with Down Syndrome joke and say “love” is on the 21st chromosome because many children with Down Syndrome are known for being extra kind and loving.
As time passed, it was evident that having Down Syndrome impacted Maria’s development, but didn’t stop her from meeting typical milestones. These milestones- sitting up, crawling, walking, talking, etc.- came with time but were that much more momentous because Eric and I put lots of time and effort into supporting Maria in reaching those goals. Maria has helped our family learn patience, love, purposeful planning, acceptance of people who are different, and to think outside the box. Our lives are better because we’ve had the gift of having Maria in our family.
Maria’s preschool years were a busy time. Our priority was inclusion. We wanted Maria to be around typically developing peers to help her learn age appropriate behaviors and skills. Our local school district did not offer an inclusive preschool program, so we paid for Maria to also attend a private preschool in a neighboring school district with an excellent inclusive education program. It was so wonderful to see her interacting with her peers, learning along side them and being an important part of whole group. I have never wanted Maria to feel like an outsider or visitor in her classroom, so full inclusion was important.
At Maria’s transition meeting from preschool to elementary school, we made it clear that inclusion was our goal for her educational experience but also in life. At school, Maria fits in with her “typical” peers and has lots of fun playing with her classmates after school. Her friends love her for who she is, and she is so happy to be their friend. I think every mother worries if their child will make friends and feel included with their peer group. It’s no different for a mother of a child with Down Syndrome. Maria has been fortunate to have friends who are loyal, respectful, protective, patient with her and look past the things she can’t do and instead meet her where she’s at and build her up.
I have high expectations for Maria’s future. Maria will have a meaningful and productive life in the real world. Maria will live independently, get a job she is passionate about, and have genuine relationships, just like her sisters and everyone else. She may need some accommodations and assistance along the way, but I know she will be able to do it. There’s no limit to the possibilities.
Another mom of a child with Down Syndrome once told me Maria is exactly how she was meant to be and the people around her are the people that need to learn from her the most. Maria has helped me to learn to think creatively, to see the good in others, and that everyone has an important role to play in life. As we help Maria, she helps us become our best selves”.
Portraits by Loni Brooke Photography, San Diego County Family Photographer. If you or someone you know would be a great candidate for a complimentary portrait session as part of the More Than a Diagnosis series, please email brooke@lonibrookephotography.com.
