Upholding an annual tradition, I read two months’ worth of old blog posts from Nella’s birth last night, stopping at my sister’s entry from two days after she was born:
At 4:24 pm, January 22, 2010, six pound Nella Cordelia Hampton entered the world and our hearts.
Nella has Down’s Syndrome.
I never changed the incorrect spelling of Down syndrome because I like that it represents us then—we didn’t know anything about it. We didn’t know that “D” is capital and “s” is lowercase, we didn’t know that there’s no “apostrophe-s” in Down, and we sure as hell didn’t know that someday “has Down syndrome” would be one of the least defining predicates that follows the subject of our daughter’s name.
Four years later:
At 4:24 pm, January 22, 2010, six pound Nella Cordelia Hampton entered the world and our hearts.
Nella has…
…this crazy infectious smile that takes but two seconds to extract from even the grumpiest moments.
Nella has…
…a determined little run, and when she’s tearing across the sidewalk to demonstrate her independence, she shakes her right arm in sync with her feet and looks backs and giggles at the distance between us.
Nella has…
…a special way of knowing when anyone needs love, and she never holds back from offering a pat on the back or a tight hug.
Nella has…
…the most impressive dance steps—twerking ain’t seen nothing on her signature “Go Low!” move.
Nella has…
…favorite books and colors and places, numerous ways of expressing herself, notable interests, repeated routines for getting into trouble, a growing repertoire of “naughty” words, the best laugh, remarkable qualities for facing challenges and an ocean of opportunities awaiting her future.
And I suppose I should tell you that Nella has Down syndrome.
While her birthday will always hold deep sentiment for our family and raw memories of the day she was born, today’s no different than any other birthday for any other kid. It’s a celebration of life. Every day—no matter who our child is or how many chromosomes she has or what she may have to face in the future—is an opportunity to celebrate life. That’s what makes us all the same.
My personal notes to my daughter are written with pen in her keepsake book today, but the blog invites the eyes from many walks of life—some of whom share the journey of raising a child with special needs, many who don’t. So I take this as an opportunity to talk about what has become second nature to us—a part of our lives that has woven its fibers so intricately with the others that it’s hard to make it out from the entire tapestry.
I think that Fear is the most cancerous and incapacitating emotion there is. It eats away at the good we have to offer, cripples us from exploring dreams and pulls our focus away from where it should be. Fear is Productivity’s Kryptonite and Gratitude’s Predator.
I’ve trained to be a Ninja Warrior against Future Fear, knowing that with every challenge we’ll ever be given in life, our job will never require more of us than to face one day at a time. Thinking about all the what-ifs for Nella at once—if she’ll be accepted, if she’ll get made fun of, if she’ll be sad or feel different, if she’ll be healthy, if she’ll find employment, if she’ll be taken care of after we’re gone—can feel like having the wind knocked out of me. But I’ll never have to face all of those things ever at once, so why worry about them all at once. One day at a time. We have more than what it takes to love and support our children for just today. And I can wake up and say that again tomorrow and the next day and the next day after that.
I do find it appropriate once in a while to give Fear limited visitation rights to challenge my hope and determination from ever sliding into that blind optimism realm or, simply put, to “keep it real.” Some sad people drink to feel happy. Me? I drink to feel sad. Beer and Bon Iver are the Mucinex for my sadness and fear, so that’s what I do to cough it up. I drink and listen to music and push the bruises of our challenges to feel them more deeply every once in a great while. I’ll cry and talk to Brett about how things will feel when, say, Nella understands more about her limitations, and we give ourselves a good night to feel the hurt.
Thank God the best things happen when we’re awake and sober though, and when you strip away a sappy playlist and a few beers, you find the clarity of hope. I choose hope over fear. I like to think of hope as the place where realism and optimism meet, and that’s where we begin each and every day.
I hope my children feel loved and accepted and yet face enough challenges in life to broaden their perspectives and transform the weaker “I feel happy with life” to a more powerful “I feel fulfilled by life.” I hope they take care of one another. I hope they have opportunities to contribute and loved ones with which to celebrate and share.
I hope this girl knows how exotic and beautiful almond eyes are; how valuable her abilities, her love, her mere existence is; how full these past four years have been with her.
As my sister wrote with the announcement of Nella’s birth:
It’s as though the stars were aligned and all was and is exactly as it should be. Perfect. When really, God could not feel any closer.
Happy Birthday to our Nella.
We’ll eat cake tonight.
