When a Man in the Elevator Didn't See the Whole Picture of My Son With Down Syndrome
Well it finally happened.
The other day I had a first I knew would eventually happen; it was just a matter of time.
While leaving an appointment a gentlemen in the elevator with us looked over at my son Kaleb, and I watched the recognition in his face which followed with, “Oh bless you guys.”
Even though I knew something like this would eventually happen, I was unsure of how to respond.
Part of the gentleman’s statement might have been geared towards the oxygen and monitor with Kaleb, which depending on the extent of his knowledge could have even been part of what he meant, knowing that those with Trisomy 21 are more prone to health issues and are evident with Kaleb’s extra accessories. In reality the oxygen and monitor have more to do with his premature birth at 28 weeks. We don’t always go into the full birth story, NICU stay and medical file with every person we meet.
I really do not believe this guy meant anything negative by his statement. As we were talking, we discovered a mutual friend who has a daughter with Down syndrome. He began talking about her and it appeared to be an attempt to make sure we knew and understood that he was friends with her. But I was aware that he saw Kaleb’s diagnosis first.
In the beginning, after receiving the diagnosis, I struggled with this, so I get it — even though others assured me I would not always think or see his diagnosis first. Already at only 6 months of age, I am experiencing this and find myself thinking about it less and less. I also know when others view Kaleb they might first see Down syndrome. My hope and prayer is that they will not stop there, that they look beyond the diagnosis and see Kaleb.
Later while talking with big brother Kaden, I got out my phone, pulled up an email and showed him a picture that his teacher sent me of him playing at daycare. He thought it was cool that his teacher had taken his picture and sent it to Momma. We looked at it, and we pointed out his Kansas City Royals World Series Championship shirt, his Thomas watch and how much fun he seemed to be having. He then proceeded to take his finger, trying to move the picture around and said, “I want to see more.” He told me about his friends and other toys in his room. He knew there was more going on than what the picture could capture. It showed just one snapshot of what was going on. The picture didn’t include his friends who were playing nearby, it didn’t show more of the toys around or the feelings he felt while playing.
It is the same for many when they see someone who looks or acts differently. They see the initial picture, a picture that seems different. I have gotten to know Kaleb, I have fallen in love with the person. When I see Kaleb I see his beautiful eyes and his irresistible chubby cheeks. I see his spunky personality — a personality that shows itself more and more. I picture those big smiles I love and our “talks” we have as he coos at me. As with Kaden’s picture I know there is more to Kaleb than what meets the eye. That snapshot of his outward appearance or of his medical equipment doesn’t tell the whole story.
March 21 is World Down Syndrome Day, a day where we recognize those individuals who are born with a little something extra. It is a day to celebrate those individuals who so beautifully show us every life can leave its mark and has something to offer this world. While having an extra chromosome gives them something in common, we recognize and celebrate their individual personalities and varying talents/abilities. It gives us a day to show the world that there is more to the picture than what meets the eye.
Follow this journey on Adventures, Reflections, and Life Lessons.
The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!
Amanda is a professor, writer, and founder of the nonprofit, Mighty Miracles Foundation. However, her favorite titles are wife and mother. She is the mother to two boys. Kaden, is a sports crazy, baseball obsessed, kind hearted, old soul who is six year old. Kaleb, is their ornery and stubborn three year old who has shown since birth he was writing his own rule book. Kaleb was born at 28 weeks at 2lb 2oz and a birth diagnosis of Down syndrome diagnosis. Since he has also added cerebral palsy to his medical file. Kaden teaches the Dickinsons new life lessons as he continues to grow and enter new stages in life. Not to be outdone Kaleb is determined to show life from a different perspective.
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