Beautiful chaos. That about sums it up. To the unknowing passerby, it’s your everyday gathering of families, the perfect Friday night let down from the busy week. We’ve got margaritas for the parents, a counter full of comfort food and a large open play space for the kids – fully loaded for our adventurous beings-with a climbing wall, toys and even a zip line. By all accounts, there’s nothing out of the ordinary about this scene – except that there is. Within this modest group, there’s an overabundance of chromosomes in the room, that of the 21st to be specific, making the reality of the gathering entirely extraordinary. Truth be told, it’s part of what accounts for the chaos, and all of what accounts for the beautiful.
The idea originated between a few dads feeling the need to connect over the children that had stormed into their hearts and given them an unexpected title; that of “father of a child with special needs”. Before long, a shout out on the well-traveled waves of social media, paired with the boundless energy and heart of the group’s organizer, Amanda Reynolds, led to over sixty families (and counting) coming together to form what has been coined “The Lucky Few, Down Syndrome N.H.”. The name originates from a book written by a mother who adopted two children with Down Syndrome. It’s one of those rare reads that is astonishingly transparent, entirely heartwarming and leaves the reader jealous of anyone whose life is touched by this extra special extra chromosome.
On any given monthly evening together, there are kids from six months of age to young teens. Conversations around the room run the gamut; from impending heart surgeries for the little ones to celebrations of the toddler-sized accomplishments of crawling and furniture surfing, to more hushed conversations among parents of older children about self-care. Advice seeps out of every corner of the room, from where to find adaptive swim, dance or other lessons, how to apply for respite care, recommendations for various therapists or strategies to protect our fragile hearts when our children are not accepted by their peers.
I can’t help but step back and recognize the underlying irony in the excitement we all feel in coming together. Here we are, spending so much time outside of these monthly get-togethers, trying our best to assimilate our children into the world of the typically developing. We sit through countless IEP meetings advocating for our kids to be incorporated into the mainstream classroom, log hour upon hour at various therapy sessions to develop our children’s speech, build coordination and muscle tone and prove to the world that our children are more alike their typically developing peers than they are different.
And then “The Lucky Few, NH” gathering rolls around and you can almost feel the collective sigh of relief as each parent steps over the threshold to enter a world where, if only for a few hours a month, we don’t need to prove anything to anyone. We don’t have to sit and listen to doctors, therapists and educators, (all well-intentioned, mind you, and for whom we are entirely grateful), coach us on what we should be doing to “better” our child’s chances at navigating what is often an unforgiving world. It just plain feels good to be in a room full of people and not have to explain your child’s behavior, answer questions as to why your toddler is not yet walking, or smile politely and talk for them when someone addresses them and you know your child doesn’t yet have the words to answer for themselves. It is comforting – and refreshing – to be surrounded by people who “get it” when you say you’re tired and understand that the “tired” isn’t necessarily because your child’s sleep isn’t sound and she can get up anywhere between 2:00am and 5:00am. It’s a safe place, if you will, where it’s ok to admit raising a child with special needs is not easy. It’s about the gift of relating to all the unspoken challenges that can tag along with this unseen extra chromosome, the fears that can creep in when thinking about the future and wondering what it will look like for your child, the emotions that can take over when you realize your child will struggle more than most and the exhaustion of having to always be one step ahead of these vulnerable souls in order to create the safe and happy world every one of our kids deserves.
For these few hours each month we get to celebrate all there is about our children that makes them so unique and marvel at the strength, perseverance, grit and unmatched determination with which they rock their extra chromosome and push past any limitations the world tries to force on them. We get to sit back and smile as we watch them play and laugh to ourselves at the secret we hold close to our hearts while so much of the world remains unknowing; being blessed with a child with Down Syndrome is better than winning the lottery. The effect of this time together is almost medicinal and somehow seems to turn the circles under our eyes and gray hairs on our heads into marks of pride as we talk, laugh, fill our tanks and march back out into the world owning and loving the title of “The Lucky Few”.
Happy World Down Syndrome Day!!
