An Innate Power to Make a Difference

[This article originally published on Bergen County Moms, March 19, 2020.]

The phrase “Down syndrome is a blessing” is a common utterance of a rare and precious insight into compassion, honesty, and wholeness.

Every year on March 21st—World Down Syndrome Day—thousands of families come together to share in the joy of the existence of their loved ones who have three copies of their 21stchromosome. Some families wear fun, mismatched socks to initiate conversations surrounding chromosomal differences. Some families take part in a virtual 3.21-mile “race” organized by the National Down Syndrome Society. In a normal year during a normal time, some brave mothers and fathers enter their children’s classrooms to share the beauty that exists in difference among all of the students; some self-advocates even find themselves on the world stage of the United Nations.

This year is a little different: we will celebrate in isolation, but never alone. One of the greatest gifts a parent receives when their child with Down syndrome is born is a network of diverse, yet likeminded parents who are always available to share a laugh or a cry when the time calls for it. Since the day each of our children were born, our lives have been intertwined with an unspoken understanding of difference, concern, love, support, and passion.

However we choose to participate this year, World Down Syndrome Day means standing beside not only our neighbors here in New Jersey and throughout the U.S., but also throughout the world. We ought not to merely hear the voices of Down syndrome self-advocates, but truly listen to the words they have so carefully crafted before speaking out on human rights issues surrounding equality and accessibility.

One of those outstanding voices is that of David Egan, the first person with an intellectual disability to be awarded the Joseph P. Kennedy Foundation Public Policy Fellowship, working with U.S. congressional offices on Social Security legislation. Lobbyist Kayla McKeon also finds herself on Capitol Hill, working with congressional leaders to pass bills that improve the lives of people with Down syndrome.

Another voice is that of Zack Gottsagen, showcasing his acting talent in the film The Peanut Butter Falcon alongside Shia LeBeouf, Dakota Johnson, Bruce Dern, Thomas Haden Church, and others. At a time when disability representation in Hollywood is under intense scrutiny, along comes a Huck Finn adventure story of a man with Down syndrome who experiences the depressing reality of adult residential placement in an area void of appropriate housing options. A tale of fiction, yes, but in line with what we in Bergen County might often lose sight of as our country fights to maintain necessary, and oftentimes vital, insurance coverage and disability benefits for those who are most in need of public assistance.

Whether diagnosed with Down syndrome prenatally or at birth, the news comes from a health care professional; therefore, medical considerations are the first bits of information shared with families, and during this current pandemic, we understand wholly they are not to be taken lightly. But these practitioners generally don’t tell new and expecting moms and dads about the smiles, the laughs, the love, or the endless possibilities that can exist when we let go of the stigma of a diagnosis and watch our children’s passions and talents flourish without limitations.

We’re not all famous, and while some of us may go on to make waves, most of us will simply be the smiling face in the church pew behind you or the quiet soul beside you in a crowded restaurant. (Remember those wonderful places?) So whether you are a family member, friend, supporter, or have Down syndrome yourself, let’s continue to show the world how downright beautiful and normal our differences can be!

As self-advocate and TV/YouTube personality Sean McElwee puts it: How can you make a difference if you aren’t different?

Happy World Down Syndrome Day!

Patti“Five years ago we were blessed with the birth of our son, Kjartan. He was joined by his little brother Lochlann 14.5 months later. Kjartan and his brother share an incredible bond. They are inseparable. Kjartan is an extremely determined 5 year old. He learns from his little brother and he teaches his little brother. He is independent. He is imaginative. He is smart. He is funny. He is very verbal. He is loving. Kjartan will always have Down syndrome, but he has proven that it will not define him. He is a true blessing.” –Patti 

Becky“I experience Lucy as 1% Down syndrome and 99% Lucy. Yes, she has the genetic factors that make up Down syndrome and some of the challenges that come along with that. But she is 99% Lucy: sweet, determined, curious, loving, adorable and absolutely delightful to her family and all those that she comes in contact with. John 9:1-3.” –Becky

 

Lauren“My daughter, Mackenzie, has been battling leukemia the last 7 months and has spent much of the time in the hospital. While undergoing treatment, she has been appointed “Mayor Mack” by hospital staff. She seeks everyone out and makes all who meet her, fall in love with her. She has brought joy to so many people, all while fighting herself. I am so incredibly proud to be her mother!” –Lauren

 

Elena“Hope is a gentle, sweet soul, and she dances long after the music stops playing. Literally! What she doesn’t say with her words she speaks with her eyes and her brilliant, infectious smile. She’s transformed me into a jukebox, interpreter, napkin, wastebasket, pillow, advocate, researcher, warrior…a mom. Hope slices a deep cut through the fog and haze of the mundane and unnecessary.” –Elena

“Life is more different than I could have ever imagined it, but it’s been better than I could have possibly imagined having Logan in it.” –Romeena 

Courtney“James is not defined by the fact he has Down syndrome. In fact, it is not something that comes up in our house very often. James is sweet, loving, resilient, loud, and messy. He is a little boy. Down syndrome is something he has, not something he is.” –Courtney 

 


Lori“What I’d like people to know about John Paul, JP, age 4, is just how fun he is. How he brightens the day of everyone he comes across. Not a day goes by that JP doesn’t make a stranger smile in his path, or turn a frown upside down with just his ability to connect with a greeting, hug, or smile. I had no idea just how emotionally intelligent people with Down syndrome were until I had JP. In a world that can sometimes seem filled with anxiety and individualism, the world needs more JPs!” –Lori

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