Today is 3-21, a day recognized for celebrating individuals with three copies of the 21st chromosome. On World Down Syndrome Awareness Day, we launch our virtual balloons (they’re yellow), have a cyber pow-wow with friends across the world who celebrate with us, and whisper our bit of gratitude for our daughter, the friends we’ve made in this community and the humble recognition that the introduction of Down syndrome into our lives has become an invitation. The world is rich with so many different kinds of people and millions of stories. The more of these people we meet, the more differences we encounter, the more stories we hear and truly listen to…the more we discover the meaning of life and find our own place amid this very big world that needs our voice, our heart and our hands. Happy World Down Syndrome Awareness Day.
I became friends with a woman a few months after Nella was born when her husband reached out to me after their own son was born with Down syndrome. “My wife is struggling,” he wrote to me, “can she talk to you?” Only a few months in myself, I didn’t feel I had much to offer but a listening ear and some pretty good “we’re going to do this” enthusiasm; but I agreed to talk to her, and after an initial tearful phone conversation, we found ourselves writing back and forth, sending pictures and joking that our kids were going to marry each other someday. Just a few months behind me, watching Lisa was like watching my own self evolve. As I knew she would, within a matter of months, Lisa let go of crippling fears and worries, fell more madly in love with her little boy and settled in to the idea that there’s so much of life we can’t control. But we can love. And take one day at a time.
I still e-mail and text regularly with Lisa and her husband, not so much about Down syndrome but about important life stuff—like funny e-cards or pictures of our kids dancing in the kitchen. Sometimes we talk about how we’ve evolved, how life seems so normal now when a while ago, we wondered if it ever would be.
I got a text this week from Lisa: “Lately, thinking of the future scares me to death. Not knowing what category we’ll be in. Our quality of life. It’s terrifying to think about. I think about this so much lately.”
I love this vulnerability. It’s real, it’s normal, and it’s healthy. It helps keep me in tune with my own vulnerabilities and address them in the company of friends.
I thought about it for a minute and realized, yes, it can be pretty terrifying, can’t it? The Future can keep any one of us awake at night, regardless of whether or not we know what we’ll be dealing with. I always come back to this thought though:
We’ll only ever be required to handle one day at a time. Thinking about all of the future right now—packing years of challenges into this one present moment when we try and force ourselves to deal with every heartache we’ll ever possibly experience in life—is not only overwhelming, but it’s unrealistic. Whatever the case, when we get there, we’ll wake up any given morning and deal with that one day. And amid the challenges of that day, there will also be lots of good things to cushion the hard moments—both for us and our children. People who make us happy, lovely things to make us smile. Coffee and music and walks outside and delicious food and good books and holding hands and kissing cheeks. And then we get to go to bed every night and wake up again and deal with the next day with maybe the same challenges but new good things too. We’ll never have to deal with thirty years of hardship on one given day, so why do we force ourselves to think about all of it right this second?
I’ve also realized both within this little spectrum of Down syndrome and in the greater world of experiences outside of it, that our worries about intimidating situations are often so much more overwhelming than the situations themselves. Because at least when we’re in the situation, there is the productive energy of doing it, no matter how hard it is, that fulfils us rather than the latent anxiety of not doing it and worrying about how hard it’s going to be, that keeps us up at night.
Take school, for example. These past four years of having Nella at home have incorporated our initial acceptance and understanding of Down syndrome and yet, there’s always been the security of having her here, with us, protected, secure, in our presence so that we feel very much in control. This probably doesn’t have anything to do with Down syndrome and more to do with parenting. Sometimes, it’s hard to let go. We worry about how our child will adapt to our absence as well as how schools and teachers and kids outside our control will treat our child. Thinking about all of this for Nella has, I admit, given me some good mother anxiety. I enrolled her a few weeks ago in a fall preschool program—a typical preschool (as opposed to one only serving children with special needs), one I fell in love with a while ago; one that felt like a good, welcoming, happy place for any child to learn. I knew I wanted a good bridge between home and kindergarten to get Nella acclimated to routines, being away from home and socializing more with other kids her age; and a once-a-week ballet class wasn’t going to cut it. Brett and I talked about the best case scenario for Nella, her needs and our family, and we decided we wanted an alternating morning schedule at the preschool we had already researched. So I met with the director of the preschool and Nella’s teacher a few weeks ago. When her teacher asked me how I thought this transition would go, I felt the strong, put-together, this-is-business mom who walked into that preschool quickly disappear, replaced without warning by vulnerable, weepy, this-isn’t-what-I-wanted-people-to-see mom. “I’m anxious,” I told her. “I don’t know how it’s going to go. I want her to be happy, comfortable, and I want her to be challenged.” My worries were so tenderly acknowledged, and it was suggested that we start coming to some classes just to visit and introduce Nella to routines before the fall. We were overwhelmed by the kindness and sensitivity of our preschool’s staff. “You can stay with her as long as you feel comfortable,” they told me.
So we started three weeks ago—Nella and I popping in together to get to know the teacher and feel comfortable with the classroom. I thought it would take a while and that by the end of the year, we’d feel really good about starting this fall. I had no idea that within a few days, my child would be thriving—running down the hallway to her classroom, dragging her lunchbox, talking to her classmates and sitting quietly on the rug for circle time, listening to Pete the Cat. On Day 3, I left the classroom without Nella even noticing. I walked down to the director’s office. “She’s painting at the table with her friends,” I cried. “She’s fine. I worried for so long how she’d do, and she’s absolutely fine.” The director smiled and stepped away from her desk to hug me. “Kelle, this is just the beginning of a lifetime of her surprising you,” she said. So she’s in partial-week preschool now, officially enrolled and putting her lunchbox inside the cubby that says “Nella”…like a boss.
I expect that there will be days where Nella doesn’t run down the hallway so happily to her classroom, and that transitions to new experiences won’t always go as well as this one did. But what a waste of perfectly good anxiety—all those times I worried about the challenge of preschool when we both did far better than I imagined.
There are challenges ahead for all of us—both in our own lives and the lives of those we love. The most productive thing we can do is to face those challenges head on and to accept that life will sometimes be hard. I find more comfort and strength in accepting that fact than in resisting it. I hate resisting and dreading and pushing against all the ambiguous what-ifs of the future. It’s exhausting mind-consuming work.
As for those random text exchanges like the one Lisa and I shared this week? There are things we worry about that loom in the future—things about Down syndrome we might not be able to control like health or dependency issues. We’re working as a community to find ways to make life better for individuals with Down syndrome every day, and we are moving forward. The therapies, scientific research, educational strategies, classroom accommodations and new expectations are changing the future for all of us. But there’s more.
Some of those imaginary future scenarios we create? You are that hypothetical situation. You are the parent of the student in our child’s class—the one we hope teaches your child to reach out to ours, invite her over to play, sit next to her at lunch. You are the employer who we pray sees potential in our child and hires her to perform a job she’ll love. You are the teacher in our child’s classroom, the one we want to work hard to meet our child’s needs and accept the challenge of creating a classroom environment that includes him and allows him to thrive. You are the high school student who we fear might not take the time to get to know our child, the coach we hope finds a way to let our kid play, the school board member whose vote matters in terms of decisions regarding our children, the co-worker who might need to practice a little extra patience and compassion in making sure our children settle in to their new jobs and feel welcome. You are the thinkers and doers and world-changers who can help alleviate fears for millions of parents world-wide and make life better for people with disabilities. That’s you.
Special needs is very much a part of every one of our lives because we live in communities that teach, employ, support and benefit from the contributions of individuals with special needs. Special needs is very much a part of every one of our lives because we all have them—needs.
The world is rich with so many different kinds of people and millions of stories. The more of these people you meet, the more differences you encounter, the more stories you hear and truly listen to…the more you discover the meaning of life and find your own place amid this very big world that needs your voice, your heart and your hands. Happy World Down Syndrome Awareness Day.
And remember: we are all on the same team.
Love someone with Down syndrome? A child, a sister, a brother, a niece, a friend, a neighbor, a co-worker? Leave a comment writing your pledge and the name of your loved one today.
I am a thinker, a doer and a world-changer, and I will use the stories I hear and the things I learn to help make the world a more accepting place for all of my children, but today, I celebrate Nella. Nella, I love you, and I will never stop exhausting my energy and using my love to help support you and make the world recognize your incredible gifts.
And parents sharing “10 Things We’ve Learned” raising a child with Down syndrome…I’m over at BabyZone as well today for World Down Syndrome Awareness Day.