Nella led me to bed last night, never one to fight a decent bedtime and always eager to savor her head-to-pillow routine which, with her, almost always goes down exactly like every dream I ever had of putting kids to sleep before I became a mom—hair strokes, starry-eyed gazes, cheeks between hands and I love yous in six different languages. One of these languages is English. The others? I don’t really know, but we both understand them. My past religious submersion threw around a gift referred to as the Language of Tongues—a mystical spiritual language inspired by God. The thought of it has always set off a skeptical fit of laughter in me, but perhaps if a mother had written one of those books of the Bible and described the lock-eyed gaze she shared while nursing her baby or the sweet words she whispered against her sick child’s brow as she rocked and kissed him to sleep, there’d be “The Gift of Tongues” notations clearly linked to those scriptures. “A mystical spiritual language inspired by God” sure describes a lot of heartfelt whispers I’ve made as a mother, so I’m just going to clear up that definition for myself right here, right now. The Bible just gained two points in my book.
So last night, Nella snuggled as close to me as she could, her body molding to mine just as easy as it did in the hospital that first night, except surrounding more of me, literally…figuratively. She looked at me and smiled her magic smile that pulls my thoughts away from that thing I have to finish after I put her to sleep—that smile that summons all the clarity in the world into that one moment, that smile that is the first letter of the alphabet in the Spiritual Language of Tongues.
“Mama,” she says. “Mama, Kelle, Kelle,” she repeats. And smiles. And kisses me—three times. And holds my cheeks in her hands. And then holds her hand zombie-like in front of us. “Tickle,” she says.
I tickle her hand while I quietly sing—first Dash’s song per her request, then her own, then Lainey’s. She never asks for her own song first—always “Dash-el Omar” first.
She fell asleep quickly and I slipped out of bed and back into my evening routine.
“She out?” Brett asked when I returned to the kitchen.
“Like a light.”
Our bedtime routine is one of our constants with Nella, a calming ritual that began on January 22, 2010 and has since brought us nearly 1,825 nights of clarity. It’s the stuff motherhood is made of, these routines, but also the balm that soothes the hardships of a diagnosis. When I think about Nella struggling to learn something in a classroom full of typical kids, or Nella graduating high school and craving the independence her siblings have, or Nella seeking fulfilling employment, I quickly hop right back to where it doesn’t hurt. It doesn’t hurt at night in bed when she’s smiling and surrounded by the comforts of what she knows, where she’s just the same as everyone else.
But sometimes it does.
I had an anxiety attack in the middle of the night the other night. It was about Nella, and I knew where it originated. On our trip last week, Brett took Lainey and Nella out to the beach to play one afternoon while I tried to put Dash down for a nap. After thirty minutes or so, they returned, the girls running off to find snacks but Brett quiet and a little off. I always know when something’s up with him, he’s good like that.
“What? What happened?” I asked.
His eyes were watery. “I saw it,” he said.
“She knows, babe,” he said.
Before he went on, I already knew what that meant. Because I know him. I know us. I know what we both worry about, amid our acceptance and our day-to-day “we’ve got this.” I know what twists our hearts the most.
“She knows she’s different. I saw them playing, I saw her watching Lainey, and—I don’t know. It was the way she looked at her, the way she tried to do what she did, the way she couldn’t. There was this look. It just killed me. I know what I saw—she knows she’s different.”
It hurt hard for one second, but my instincts were triggered. I know what chute to deploy for this one. I’ve done it for myself many times.
“Stop, that’s our feelings, not hers. That’s your sadness, babe. She’s almost five, she’s happy! We can’t project those feelings on her or she’ll pick them up. We can’t do it this way. We’re all different, that’s life. We can’t bring sad feel-sorry-for-her feelings into this. We can’t parent that way.”
I wish I would have acknowledged his feelings more at that moment now that I look back. I have since, but if I were to do it over again, maybe I would have hugged him or said “I feel that way too, babe. I understand, but…” It’s just that I have this job, and I take it so seriously that sometimes I forget we’re in this together. My matriarchal commitment to paving the road for our children’s future, specifically for the way Nella sees herself, has created such a gung-ho obligation to “We treat and see you no differently than anyone else,” that perhaps I don’t make room as much as I should for moments of “This is hard, this is different.”
One of our best friends has a brother with special needs and consequently (or maybe unrelated) has had a special connection with Nella since she was born. We’ve had some passionate discussions about ways to raise a child with special needs, sometimes through tears, and if there’s one thing for certain, our friend staunchly adheres to the philosophy of high standards/treat no different/don’t you dare feel sorry for her. I envy his commitment to this philosophy, a commitment that allows little room for sentimentality or tears and, in our friend’s case, has helped his brother achieve a pretty normal life. “My mom never treated him any different. She had six kids to take care of, she couldn’t.” I know where to turn to for military strength and a perspective away from sympathetic stereotypes of special needs, and any time I’ve ever voiced a hint of “Poor Nella,” our friend drill-sergeants me back into The Matriarch Pillar of Strength—“STOP. You think about her that way, and she’ll feel it. She’s NO DIFFERENT. You hear me?” One night, we were all at dinner together, fell into a discussion about this again, and I saw something through his militant devotion to his philosophy. I saw his tears.
It’s there. No matter how much we dedicate ourselves to things we believe in, no matter how faithfully we practice our “See no different, treat no different” special needs strategies, you cannot deny how true and real the hurt is of knowing that someone you love so desperately has to experience a life that has so many struggles. And that’s how I felt when I woke up in the middle of the night this week, remembering what Brett said he saw on the beach and further imagining our daughter in a second grade classroom, in a high school cafeteria or out in the work world and struggling to accept that she’s different or wondering why or ever feeling like she doesn’t belong. Dear God, the sadness of these middle-of-night thoughts is suffocating but thankfully—much like thoughts of paying bills or returning e-mails or traveling on a plane—fifty billion times worse and more paralyzing in the thick of darkness than it is in the morning. I can bring a clearer perspective and I can deflate every fear, every worry and every disadvantage with a contrary thought—“It could be worse” or “every child, regardless of disability, has these feelings” or “Life is hard, get over it.” These have all worked for me and will continue to work for me in the future. But this is to say, “Hi Pain. I see you.” Everyone needs some goddamn recognition from time to time, and pain’s no different.
Speaking of recognition, I returned to Brett to validate his very real feelings after my middle-of-the-night low. “I thought about what you saw on the beach the other day. I know those are real feelings, and I worry about them too. In fact I woke up in the middle of the night last night with a straight-up anxiety attack about it,” I added.
“You did? I did too.”
In the daylight, in the hope of promise and potential, we talk about Nella and continue to make plans for her future just as we have done and just as we do for the rest of our family. We see and treat her no differently than any one of us and yet we can’t deny that she has different needs, so we do our very best to support those. Right now that means working closely with her preschool team, getting ready for another IEP meeting to keep communication open with the school district she’ll eventually be a part of, and day-to-day speech and O.T. (occupational therapy) strategies. We’ve gone back and forth between weekly/bi-monthly therapy and consult basis for speech and O.T. ideas we can practice with her at home. I hesitate to give any advice on these issues because we are constantly figuring things out for ourselves, and every child is different. In our case, when it comes to therapy, success boiled down to finding really good therapists and supporting Nella with everyday support at home. That said, our most amazing O.T. and speech therapists have both moved on to different career paths, we tried an off-site speech clinic and didn’t find it helpful, and we’re now baking brownies to brownnose a highly-recommended in-home speech therapist into opening a spot on her already full case load for Nella. ;o)
My only tried and true suggestion would be to connect and make friends with some other parents further along the road. I have 3-4 moms who I turn to for all D.S. related questions, I download the apps they say are great, I make the flashcards they tell me to make and most important, with their support, I feel connected, strong and capable as Nella’s mom.
Emotional procrastination was my savior the year Nella was born. “You don’t have to think about ten years ahead right now—just love her today.” I still tell myself that and yet things are different now. You eventually have to think about things because your child’s future depends on it. (And, if you’re brand new to this, don’t worry—you’ll be ready sooner than you think.) Some of the things I kept myself from thinking about are happening right now. That’s life though. It gets harder. But see that growing curve that measures challenges on life’s graph? There’s another curve on the graph, sometimes barely recognizable because it follows the exact same arc as the challenges. It’s life’s richness curve (“Oh my God! A double rainbow!). Every day as parents makes us ready for the next day. We follow the curve, knowing it transcends yesterday’s path. We wake up every day and work hard, researching ways to do things, talking to friends, making mistakes, fixing mistakes, thinking about the future, thinking about nothing more than right this second, making plans for everything—school, teachers, dinner, playdates, college, day trips, books to read, therapies to try, birthday parties, doctor appointments and bedtime routines where, at the end of the day, our babies we love so very much hold our cheeks in their hands and say, “Mama, mama, mama.” And we hear it in six different languages.
I can’t make everything better for Nella, I can’t magically change the way her brain works or fix her muscle tone or promise that she won’t have moments of feeling different from others in life. But I can do my part in making the world a kinder place for her to thrive—for all my kids to thrive. “It’s like this,” I told my friend Annie the other day, “With all the world’s sorrow and problems and heartache and hatred, it can feel so overwhelming sometimes to think that we can do anything to fix it. But if someone came and told me there was one thing I could do that was guaranteed to fix it—no matter how small that fix was and no matter how silly the task assigned was, I’d do it. If someone handed me a wrench and promised me that if I turned that wrench to the right every day, it would help make Nella feel more accepted and capable and valued, I’d turn that damn wrench right, every moment of every day until I died.”
Later before bed that night I found this text from her: “I just want you to know this: one wrench I will turn every day for eternity is to practice kindness to every human like Nella. And I will turn that wrench into my kids so that somehow, someway, that goodness flows all the way down south to Florida right into Nella’s lap. Because I believe that’s how the universe works.”
And if we all took that wrench and turned it to the right, imagine how far our wheel could travel. New destinations, a world of possibility. Or maybe I’m just speaking in tongues.
In two weeks, Nella turns five. That means, for five years, you—this wonderful, supportive online community—have shared our journey. Many of you gave meaningful words of encouragement in those very first months—words we needed and breathed in and so appreciated during a challenging time. And since, you’ve shared your support in many other ways—one incredibly notable, investing in our shared mission by donating to the National Down Syndrome Society. Thank you for helping us raise over $267,000 since Nella’s first birthday to support the efforts of the NDSS—advocating for the value, acceptance and inclusion of people with Down syndrome. We are thankful for a national organization that represents us and wish every syndrome, every chromosomal deletion, addition or abnormality had such a force. Thank you so much for your kindness in contributing to this mission over the years, a mission that’s important to many moms and dads and sisters and brothers, just like you. We still and always will donate to the NDSS and support their mission, and we hope you will too. As Nella gets older, we will continue to share ways that you can help support individuals with Down syndrome and community-recognized events such as March 21 (Down Syndrome Awareness Day) and October celebrations (Down Syndrome Acceptance Month). We’d also like to learn more about other organizations helping make life better for individuals with Down syndrome, specifically in relation to post-secondary education opportunities, scholarships and employment programs for adults. Please share in the comments or e-mail us at firstname.lastname@example.org if you know of any that are doing important work and need a greater platform.
I did just write about new years, new goals and forward energy though, and Nella’s birthday is a perfectly good time for renewed action. What can you do now to share and celebrate with us?
Continue to choose kindness. Turn the wrench right with us. This world needs more love right now, and paying it forward, looking out for someone else, doing the right thing never goes out of style. When I wake up in bed at night and think about that second grade classroom, that high school cafeteria, that work place lunchroom, I’d love to know that it will be filled with kindness and acceptance—kids who will sit with her and ask her about that dance she went to—the one they know about because they sat with her the day before and heard about it. Students who will lean over and help her find that page, friends who will come over and hang out, teams that will cheer for her when she runs, employees who will take the extra time in training, graduating classmates who will clap and holler her name when she crosses the stage and takes her diploma. We create this kind, celebrative, supportive community for our children with every opportunity we are given to be the change.
I picked up Nella from preschool yesterday and was surprised that she didn’t immediately appear holding a teacher’s hand like she always does when they call her name. I waited a minute and her teacher finally laughed and yelled to me, “Hang on–she’s socializing with her friends.” I love that. I wouldn’t mind a good thousand more times in life of being told to wait a minute because Nella’s busy socializing with her friends or creating something or helping someone or off doing her own important thing.
In the meantime, we will cherish our bedtime routine–our hair strokes, our starry-eyed gazes and all the love between the sweet hands that squeeze my cheeks. We will equip each other with what we need for tomorrow…I love you, I love you, I love you.
Nella wants (with helpful suggestions from her sister) a rainbow birthday party. And we think that’s a pretty perfect way to celebrate these five incredible years.