I could lie to you and tell you it was the best, most celebratory experience taking this picture with my kids for World Down Syndrome Day. However, that would be sugarcoating an afternoon activity that took twenty minutes (and should’ve taken two) and produced some very serious grey hairs on my head.
I began venting to a friend about how I felt trying to get 25 wiggly first graders who were hangry and cranky to take this photo without them beating each other up. I said how unfortunately I was probably going to post it with some caption that praised the fabulousness of the day (of which there was a lot) and let people in on zero part of the frustration I felt in the moment taking this photo. In that conversation, I realized that is often the same balance that those of us who have a loved one with Down Syndrome juggle on a regular basis - sharing the highlights in the most real and true form.
I absolutely love and adore my brother and living life alongside him, with everything that is in me. I wouldn’t change anything about our family or him. However, there are moments and aspects that frustrate me to no end, weighing heavily on my heart, that I often choose not to share with most people.
Some are things that Josh does, like frequently refusing to do what we ask of him in a timely manner or ever at all, having a meltdown in a public place or in front of our friends, or constantly moving or throwing away my personal belongings in our shared bathroom because they’re not where he wants them to be. Perhaps these are things that others experience with their own “typical” siblings but in a different or lesser way… I don’t know.
Some frustrations are things other people do. We go through others not thinking to invite him to watch a football game or hang out with a group until I speak up for him, looking to my parents or me to ask what he is saying as if he’s speaking another language, using a tone of voice or verbiage that they would use with a child, assuming what he is or is not capable of or what he does and does not want to do, or making ignorant stereotypical remarks such as “they’re always just so happy and loving”.
I often set aside these frustrations and my fierce sister bear advocacy wrath as I strive to shed only a positive light on Down Syndrome and those in this Downs community. But the reality is that he and this life I’ve been blessed to live with him are truly the best. He is the reason for so many of the best things in my life, and he is the reason I chose to teach and love those with hurdles of their own to overcome.
Again, I’d be lying if I said that fiercely loving someone with Downs, as well as teaching and encouraging complex little kids, is easy. Neither is easy. However, both are insanely worth it. Those I have met with Downs and my students are all creative, hilarious, brilliant, unique, kind, and worthy of the same love and inclusivity that is given to all. That’s the positive reality.
Even as I write this, I find myself smiling at the millions of reasons why every single day with Josh is beautiful. His smile can literally light up any room. He has a “cool dude” swagger walk where he puts his hands in his pocket and pretends like no one else is around. I can always count on his consistent goodnight routine with each one of us in the house. He blows my mind with his intelligence and mental ability, contradictory to what his IQ number shows. He is unapologetically himself and is boldly and confidently who God made him to be. The list of why he is so special is endless which is why painting a positive picture of the life we live with him comes so simply.
I recently read a quote that said “Happy is a mood. Positivity is a mindset.” So although living with and advocating for someone with Down Syndrome may often require ten extra doses of patience and cause an unfortunate awareness of the injustice around us, I choose to look through the lens of the millions of blessings God has brought to my life and my community through Josh. I don’t think the end of the ripple effect of Josh’s life, love, and diagnosis will ever fully be reached.
This balance of sharing the positive truth of what Down Syndrome looks like along with sharing the sometimes challenging elements of Down Syndrome can be a fine line to walk. Although the line can be sprinkled with hurdles, its solid foundation is made of blessings that I will always recognize and advocate for every chance I get.
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