Down Syndrome: Where We Are Now

October is Down Syndrome Awareness Month when thousands of families across the globe advocate for the people they love and educate friends on what it is they want them to know about Down syndrome. What I want you all to know has hopefully been woven into every single thing I’ve shared online for the past eight years–yes, in posts specifically about Down syndrome, but more so in what I’ve shared that isn’t–the celebrations, the holidays, the family trips, the everyday stories of hustling kids out the door, attacking neglected piles of laundry, attending to work, exploring hobbies, raising a family and filling in the gaps with the sweet simple pleasures that make life grand. Hopefully through all of that, you’ve read between the lines this subtle yet screaming message–that Nella fits perfectly in this family and that having a child with Down syndrome is not an experience to be pitied, but a joy that very much fits the profile of the American Happy Family dream, especially when you understand what happiness really means.

I have learned that no one is entitled to being part of the 699 in a 1-in-700 odds, and that becoming the “1” can sometimes be a golden ticket to a secret only other ticket holders know. That secret did not reveal itself to me the day Nella was born because I had a lot of fear and expectations of what my family was supposed to look like to chisel through (I skipped the chisel and went for the bulldozer–we had a lot of digging to do), but it came. And here we are.

When Nella was a baby and her diagnosis was still fresh, one of the editors who interviewed me pursuing the possibility of publishing Bloom admitted she saw a memoir about raising a child with Down syndrome more of a compilation of many years, perhaps written when Nella was ten or older and looking back at the lessons we learned over a longer course of time. She wrote again after Bloom was published, shared the sweetest congratulatory words and commented on how she realized the importance of sharing just the first year–because it was hard and raw in the moment and might have been sorted out as no big deal written with the hindsight after ten years. And she’s right. I’m glad I wrote that book when I did because we need first year books for first year moms. We need all the details of grief and acceptance because the process is complex. I wouldn’t be able to tap into those feelings today because mostly Down syndrome is no big deal, and that’s what I’m getting to…that Where We Are Now, 8 ½ years in, is exactly where the other ticket holders told me I’d be when she was born–infinitely happy that we were chosen to be her family. There’s a good chance if we would have waited for an 8-year memoir that I would have turned in a manuscript only to have my editor call me with, “I thought this was going to be about your journey with Down syndrome? I’m confused–you wrote a lot about holidays and celebrations.”

Of course, I don’t want to trivialize the challenges of raising a child with special needs. Let’s just get this out of the way: parenting is harrrrrrrddddd. And parenting a child with Down syndrome does, of course, come with added commitment, especially in laying the groundwork for a fulfilling future and finding resources for that. But it’s a commitment much like marriage. We know marriage gets harder as we get older, and yet people choose life partners every day because we know that love is fulfilling, we know that committing to the challenges makes us grow, and we know that spending life together with someone you love is one of the greatest joys man can ever know.

It is that joy that makes this journey rich. Nella’s presence in our family brings an acute awareness of all that is good in the world–her love for others, what it feels like to celebrate an accomplishment for someone who worked so hard to get there, her laughter, her dancing, her willingness to try things even though they don’t come easy, her radical acceptance of everyone she meets. Nella is a mirror for our family. Every day we see before us the very bones of our existence–what makes a person beautiful, separated from the chaff of the things we mistakenly get caught up in that we think make us impressive–our GPAs, the colleges we went to, our jobs, our promotions, our age-defying bodies, our bank accounts, our accolades, our wardrobes, our home decor, our social media followings. Nella helps guide the standard of purpose in our home and reminds us what’s worth celebrating, and we will always have that. Last weekend, our neighbors stopped by to chat, not intending to stay long. We leaned against counters and talked about our week in a messy kitchen with plans to get back to our cleaning and weekend to-do list when we were done. The lights turned off suddenly in the middle of it though, and we turned to see Nella, smiling in the darkness, as she plugged two disco lights into the outlet on the kitchen island and commanded, “Dance.” She led the celebration that eventually turned into a Conga line as we snaked around tables, laughing and wiping away sweat from our impromptu weekend cardio. Nella yelled for Alexa to play the songs that are perfect for dancing, and we moved our hips through those flashing rainbow lights until we crashed in bed that night. That is what is buried in the golden ticket. That is what I want you to know.

Since it’s Down Syndrome Awareness Month, I’ll tell you a little bit more about where we are now. The answers to these questions change with time, but this is the 8-year-old stop on the journey for us.

Academically
We are working patiently on continued reading and math strategies. Nella can read basic level books with sight words she recognizes and is beginning to show great progress in phonetically deciphering words and writing them. She is in a typical second grade classroom where the community of students love her, support her and cheer for her. She also receives more individualized instruction in a special education classroom. This year, during a presentation about Down syndrome that we request her class receives (she was not present), a little boy wanted to know more about her other classroom. Her wonderful special education teacher invited them all on a field trip to that classroom where they learned more about her instruction there, saw her name on her other desk, celebrated her work taped to the wall. One little boy exclaimed, “Nella’s so lucky. She gets two classrooms.” Slow and steady progress is okay, and we celebrate consistent forward movement and social growth, communicating with her team and committing to the specific learning goals we created together. Learning often comes in peaks and plateaus–things will seem slow and steady for months and then BOOM–everyone will be e-mailing that she’s having a crazy amazing few weeks of vocabulary leaps, social breakthroughs and overall accelerated pace in reaching her goals. Our hope is that Nella will be able to attend one of the many college programs in the country for people with intellectual disabilities someday. If not, that’s okay too, but knowing these programs are available helps give us something to shoot for. We just want Nella to have as many learning opportunities as possible–ones that help prepare her for independent living, teach her important skills she can use for a job someday and mostly, ones that enrich her life, quench her thirst for knowledge and give her a great sense of community. We don’t intend she’ll take her wand to college, but don’t break it to her yet.

Nella’s awareness of her disability
Once Nella was in school and we knew she’d have more opportunities to naturally compare her abilities with others, we made a conscious decision to talk about Down syndrome with her at a basic level, mainly with the purpose of her understanding there was a great reason why she wasn’t able to complete the same work and shifting our perspective to celebration. One way we help achieve that is introducing her to other kids that have Down syndrome, pointing Down syndrome out when we see kids who have it in advertising or on T.V. and getting all excited as a family with her for the fact that she has this awesome little thing that makes her unique. While she doesn’t articulately communicate that she understands what it means to have Down syndrome, I know she’s aware of it in the same way other kids are aware that they have short or long hair, brown or tan skin or were adopted at birth. She knows it takes her a little longer to learn things, but given the resources she has and the incredible people at school that are privileged to work with her because of it, I think she’s okay with it. One of our biggest areas of advocacy for Nella is making sure her awareness of her disability is always equivalent with celebration, self love and capability. 

Something we’ve celebrated lately…
Nella is beginning to own her voice in a crowd. Her teachers have reported that she’s being more vocal in her classrooms, sharing answers out loud among peers. Last week, in an after school musical production class she’s taking, I peered around the corner to spy and was shocked when Nella agreed to participate in a song game where she says her name out loud to the group and everyone sings back to her.

A mantra I live by in raising a child with Down syndrome…
Just today. Yes, a lot of what we do with Nella subconsciously incorporates our hopes for her future, but all that is every required of us at one time is today. We don’t have to have it all figured out. We wake up every morning and be the very best parents we can be to all of our kids, just today. I’m also motivated by the mantra, “If Nella shows up, so can you.” She faces more challenges because of her disability than most kids and yet she shows up every day–walks in her classroom, pencils in her worksheets, listens to her teachers, sits in the group even though she might not understand everything, talks to friends on the playground, pushes through her shyness, tries things again when she’s previously failed. Knowing that keeps my flame burning when I’m running and want to quit, when I want to back down from something that scares me, when I’m feeling tired or unmotivated or burnt out by naysayers. If my daughter can do it, so can I.

A worry for the future…
I won’t deny that we are in a beautiful window right now. Our kids are all still in our home, Dash and Nella’s favorite companion is each other, our school feels close and homey and shares our visions of inclusion, support and high standards for Nella. Sometimes I worry for the other shoe to drop. I also worry about our job industry drastically changing in the next ten years with computers taking over so many of the kinds of jobs that Nella will be able to do. Here’s where the kryptonite to my worries lies though…creativity. I believe in the creativity of good people and know that it solves problems. I trust my own creativity and know that my love for my daughter will keep me fighting to fit a square peg in a round hole until death us do part. Astronauts brought Apollo 13 home. We got this.

A dream for the future…
A house for me and Brett with a little carriage house (with twinkle lights–duh) in the back where Nella can live independently someday, maybe even with someone she loves. We will check up on her and she will, of course, roll her eyes and complain about her overbearing mother. Friday game nights at our house. Siblings who visit her often and beg for her to come be with their families because The World’s Best Aunt makes every home better. A job she loves, whatever that may be. Good friends she can socialize with. Catching her eye when she’s 40 years old and being able to spiritually connect with her like I’ve done since the day she was born…”I’m happy,” those eyes will tell me.

One thing friends do that is so helpful on this journey…
Request playdates. More than anything right now, as her awareness of second grade social lives develops, I want Nella to know she has friends. Heidi does this more than anyone, and her commitment to always making sure Nella has a vibrant social life makes me love her even more. Once, when Heidi found out that Nella was sad after Lainey went off to a sleepover with friends, she called me and said, “I’m already in the car. I’m coming to get Nella. My kids are all excited. Pack a bag, it’s a sleepover, tell her her presence is requested for a party. A big party.”

My stomach lurches when I…
…hear the word retarded. From the moment she was born, I’ll bet I’ve noticed every. single. time. it was said in my presence, and I wince…for Nella. No matter how you use it or choose to define it, no matter what you feel about politically correct terminology, no matter how many “friends with disabilities” you have…the use of the word embodies shame for people who don’t learn as quickly. It’s hurtful, and carelessly throwing out that word when there are a number of different words to express what you really mean to say is ignorant, lazy and makes a distinct statement about your level of compassion.

Want in on some golden ticket secrets?
In the past, people with Down syndrome have been patronizingly generalized to one personality–precious angels, always happy, who exude love. I’ll get to the love part in a moment because–yes, there’s a lot of love; but I think it’s first so very important that people understand individuals with Down syndrome are complex individuals with varying interests and abilities. They’re funny and witty and love particular books and movies and restaurants just like you, and they get pissed off at the same kind of things that piss you off. They develop crushes, fall in love and break up. They drink beer, celebrate accomplishments with champagne toasts, and develop awareness for what constitutes appropriate drinking. I have a friend in AA who recently revealed one of his AA meeting buddies is a girl with Down syndrome. She leads the group occasionally and has found great community in helping others face their addiction. Perhaps that’s not something to be celebrated, but I admit I cheer a little every time I discover something someone with Down syndrome does that people would normally think their disability limits them from, even if it’s attend AA meetings. Full inclusion. So to generalize people with Down syndrome as sweet and loving and happy is to trivialize their real dynamic personalities. We are living in a new age of awareness. We’re seeing models with Down syndrome included in regular advertising for everything from children’s toys to women’s bras (Yay, Aerie!) and reading headlines about young adults with Down syndrome launching business ventures, graduating college and starting movements. I want you to know that Nella is funny, understands jokes, does her homework, gets mad at her brother, defends her territory, organizes her siblings’ belongings by the door before we run out to school (seriously, she keeps my head on straight), problem solves sometimes better than everyone else in the family; and now that I’ve told you that, let me tell you about her love. It isn’t cute or precious and is far above what can be summarized in a syruply-uttered, “Those kids with Down syndrome–they’re so loving.” Her love is spiritual and connected to the deepest parts of people that need to be seen. She knows things. She knows people’s feelings–can sense when they’re hurting. She will try and fix it.

A few weeks ago, I got sick after a long run without water or proper food fuel. I ran to the bathroom and curled over the toilet to throw up, shooing everyone away and assuring them I was fine. Everyone ran but Nella. She stayed in the bathroom with me, pulling my hair aside, rubbing my back, whispering “It’s okay, Mommy. It’s okay.” She brought me a towel, stroked my hair like a mother, held my hand and waited for me to finish. The depth of her awareness and her desire to love me through that little moment brought me to tears.

“You just tired?” she asked. “You want water? You’re okay, Mommy. You’re okay.”

This is just a little bit of the behind-the-scenes magic that we experience every day. We pour love on our children with no expectation of affection back, and yet the boomerang effect of our nurturing is fierce with this one. Sometimes I fall asleep with her stroking my face, listening to her whisper, “I love you, Mommy.”

So if you’re still reading after all that…that’s where we are now. We feel pretty damn lucky.

Happy Down Syndrome Awareness Month. Thank you for celebrating with us.