Enjoying the Small Things

Enjoying the Small Things

How Do You Address People who Make Fun of Intellectual Disabilities and Responding to the R-Word

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Over break, I received this message from a middle school student:

Hi! I was wondering if you had any advice for me. I’m still in middle school, and there are a lot of kids who call things autistic or make fun of kids with Down syndrome. It is NOT okay, and I wanted to know if you have any tips for how to chew them out. Thank you so much!

I wrote her back, commending her on being a leader and thinking her response through and told her I’d sit down and make a list of different ways she can respond. I’ve been asked so many times how I react when I hear someone use the word “retarded,” so I figured this was a good time to tackle that one too. Unfortunately, even though it feels like we are in a more accepting age, people still make insensitive remarks, use offensive language and indirectly make people with intellectual disabilities the brunt of their jokes All. The. Time. But it often depends on who’s saying it and what setting we are in that determines how I respond. Is it a stranger or someone I know? Did I overhear it or was it said to me? Was it meant to be unkind or does someone well meaning truly not understand how it comes across?

I can tell you this though. From the day Nella was born, I’ve bristled every time something was said. Things that used to slide past me in television shows, words that maybe didn’t catch my attention in conversations before–they don’t go unnoticed anymore. If you accidentally said the word “retarded” when I was standing by, and you wondered later if I heard it, know that I did. I always hear it. It’s the rite of passage we inherit when we enter the world of special needs and are given the golden scepter–yeah, that’s what I’m calling it–golden scepter of opportunity. We get to love these people, and then we get to educate the world about that love.

Why are these words offensive? In the case of actually making fun of people with disabilities, I think it’s a given–you’re just an asshole, and it will catch up with you. Deliberately making fun of a marginalized group of people who spend their entire lives fighting for a sliver of the opportunities, friends, jobs and attention that naturally come easy for you simply because of the physiological coincidence that, up to this point (remember, anything can change), the cells in your body and mind have functioned in a way that makes things relatively easy for you–well, that says far more about you than them, and you’ll have to carry that and deal with it throughout life.

In the case of using the word “retard” or “retarded,” I still hear people argue things like,”Oh, come on; you know I don’t mean it like that” or “God, everyone and their politically correct terminology. Relax, it’s just a word.” Let’s talk about that for a moment. The definition of retarded means “less advanced in mental, physical, or social development than is usual for one’s age.” For years (although considered archaic terminology now), it was used to medically define people with intellectual disabilities. So whether you think you’re referring to them or not when you laugh at some absent-minded thing you did and say “how retarded,” you are. And it’s not a bunch of sensitive moms (although I’m proud to be that too) asking you to be politically correct. It’s an international movement backed by hundreds of thousands of people–stop using the R-word.

I didn’t always used to speak up when I heard the R-word or insensitive references to people with intellectual disabilities because I actually worried more about the feelings of the person saying it. “They’re going to feel awful when I say something” or “They didn’t mean it; they’re going to think I’m too sensitive.” But, do you know what? I DON’T CARE ANYMORE! I do not suppress something I feel passionate enough to speak up about for fear of what someone will think about me. And it’s 2019! I give people the benefit of the doubt that they want to be informed, that they’re confident and strong and open to learn ways they can be better. I trust they can handle it. And if they can’t? If their own ego and issues with being confronted or being wrong means they snap back or don’t agree, guess what? NOT MY CIRCUS, NOT MY MONKEYS! I did my part. I used my voice.

Young people, 2019 is a good time to speak up. This new generation has impressed me in so many ways, and more than ever, young people are using their voices and making efforts to make kindness and acceptance cool–to change our culture, to advocate, to include. And it’s working. No matter what someone’s response is, I promise you, you will stand out for someone who is kind and confident and a leader when you speak up for people with intellectual disabilities and make it clear that you don’t approve of intolerant language; and you will be respected for it.

Do I still have people in my life who use the word? Yes. And they’re good people. Most of the time, it slips and they immediately stop and say, “I’m so sorry. I don’t know why I said that. I hate that word.” It was sloppily used in everyday language for a long time, so I understand that it takes time for people to recognize how insensitive it is. Usually, if it’s a friend, I just smile and interject, “Can’t use that word, but go on–what were you saying?” And it works. We have had people we love continue to use it–people who I know are good and loving and care deeply about Nella, yet the word is still thrown around–“I felt so retarded”–like it’s no big deal. Keep speaking up though. Recently I had a deeper conversation about it with a friend who I finally interrupted.

“Can I tell you something?” I said. “You use that word a lot. And I know we’ve talked about it, and I know you say you don’t mean it to make fun. But I’m worried about the day that Nella gets old enough to understand it–and she will; I know she will. She’s going to be confused how someone she loves so much uses that word when she knows it’s hurtful to people like her. I don’t know how I’m going to explain that to her.” There were tears, and a long hug and a “Thank you for continuing to tell me. Thank you for giving me another chance to stop. I don’t ever want to hurt Nella. If you hear me say it again, say something.”

My sister was at a nice restaurant recently and overheard a table of diners use the word several times while they were enjoying their meal. As she was leaving, she walked over to the table and said, “I’m sorry to interrupt. I know you probably meant well, but I couldn’t help but hear the word “retard” used several times. I hear it a mile away. I have a niece with Down syndrome, and it kills me when people use that word as a joke. I just wanted to say something.” One of the men apologized and said he completely understood, one of the wives shooed her away with “Okay thanks, you can leave now,” but I bet they’ll remember the encounter. At least next time they go to drop the R-word, they’ll think about the woman in the restaurant who loved her niece.

All that said, I think it’s helpful to have prepared scripts when you’re advocating. Sometimes we don’t say anything simply because we can’t think of what to say. So I’m giving you some things to say today–a whole repertoire of responses for when you hear someone use the R-word or casually joke about people with intellectual disabilities. Whether it’s a friend or a stranger, said with intention or thrown out in ignorance–address it. Gently, firmly, seriously, with explanation or without. But please, say something. 

Here are a number of ways to address it:

  1. “I know what kind of person you are and I’ve seen how much you care about people, so I know you didn’t mean to hurt anyone. But jokingly using the word “retarded” to refer to your lapse of thinking is so hurtful to people with intellectual disabilities.”
  2. “Dude. It’s 2019, and that word is archaic and offensive. Get a dictionary and find another word.”
  3. “I made a promise to myself to speak up every time I hear that word used. I used to use it too until I realized how offensive it is. Please find a different way to phrase that.”
  4. “Hey, you’re better than what you just said. Maybe don’t make amazing people who work so hard and struggle with being accepted the brunt of your jokes. You’re too good to sink so low.”
  5. “Can I ask you something? Do you know anyone who’s autistic or has Down syndrome? Because if you did, I don’t think you’d joke like that. I have a friend who has an intellectual disability, and he’s really amazing. He doesn’t deserve to be the brunt of jokes.”
  6. “Friends don’t let friends use the R-word, so I’m stopping you right here.”
  7. “Choose a different word.”
  8. “Volunteer with me at one event for people with special needs, and I dare you to talk like that again. They could teach you a few things. You will love them.”
  9. “You sound really ignorant when you say things like that, and I know you’re not. Raise the bar, dude.”
  10. “Have you been living under a rock? We don’t use that word anymore.”
  11. “It surprises me that you’d use that word. You’re always so sensitive about the language you use.”
  12. “Would you say that live on camera if you knew people were going to hear it and judge who you are by it?”
  13. “People with intellectual disabilities have enough challenges they have to face in life to be accepted. Being the brunt of your jokes shouldn’t be one of them.”

Addendum: I forgot one my friend Liz uses when friends forget and say it. She tells them that anyone who uses the R-word has to run a naked lap around her house. Game changer. I’m just sayin.

For me, it’s easy to address because I have a child with an intellectual disability who is my heart. It is easy to explain to people how much I love her and how much it would kill me to watch her hear that word, knowing it’s been used for years as a joke with an underlying punchline that says that an intellectual disability makes you lower than everyone else. Because that’s exactly what you’re saying when you use the R-word or make intellectual disabilities a laughing matter. Because of that, it is easy for me to advocate. To speak up over and over and over. And I only hope that all of you have the privilege of loving someone like Nella too.

How I Changed my Mind about Dolls with Down Syndrome

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One of the great things about having a larger social media community is that people send you things they think you’ll like. It’s like having your own little army of personal shoppers, and there are numerous items in our home that were found simply because a sweet reader took the time to send me a link with “These rainbow tennis shoes have your name all over them!”

Because we have a child with Down syndrome, people also send articles and stories and news clips that pertain to special needs, and I love it. I feel informed and continually inspired by the constant stream of new stories people send my way about the great things people with Down syndrome are accomplishing, the breakthroughs in research that are being made to improve their lives and the new products, opportunities and advocacy that is happening within the special needs world. I’ve learned so much thanks to the links people send me, and if a story or product doesn’t resonate with me, it’s not a big deal–we move along.

Shortly after Nella was born, I wrote about the rite of passage all special needs families go through after delivering their babies–being e-mailed the Road to Holland poem 923,402 times by well meaning friends who don’t know how else to help (if you sent it to me, good for you–it’s a beautiful poem). I wrote how I felt about the poem which, at the time considering I was Stage 1 in acceptance, was “Don’t tell me I’m stuck in Holland–I’ll find a way to get to $#@*ing Italy with my daughter on my back, thank you very much.” I’ve softened since and, while I still firmly believe that having a child with special needs metaphorically makes you a dual citizen of both Holland and Italy and that you are not limited to just one, I recognize the intent of the poem and so appreciate the number of resources out there for families dealing with special needs in different ways. I’ve never been one to buy a chromosome slogan t-shirt, but we all take our corner in the advocacy ring, and we need all the bases covered. If wearing a t-shirt about Down syndrome is fitting for you, get on that base! I guess what I’m trying to say is that I’ve realized that just because I’m not into something doesn’t mean I have to be against it, and that we can change our minds about things whenever we want to. Which brings me to dolls with Down syndrome.

The first time someone sent me a link to a doll with Down syndrome, I clicked on it and frankly felt angry. It didn’t highlight the sweet facial characteristics we loved about Nella; it exaggerated them, making the doll an easy target for jokes. It was sold with the persuasion that your child with Down syndrome deserved a doll that looked just like her, but I thought all the sweet baby dolls in Nella’s room–the same ones Lainey played with–did look just like her. I found the suggestion that she needed a special doll, different from the ones her friends were playing with, offensive and exclusive; and I made a firm stance within that we do not believe in dolls with Down syndrome. I even turned down a generous sponsor opportunity with a large doll company releasing a doll with Down syndrome for Down Syndrome Awareness month, explaining to my media agent that the product was not a good fit for our family. When she e-mailed me back personally, commending me for turning the opportunity down if it didn’t feel right, she shared that she had a friend with a child with Down syndrome and would love to know more why it didn’t fit. I explained to her that the foundation of our special needs beliefs and advocacy was “more alike than different” and that marketing a different doll for kids with Down syndrome felt isolating and contrary to that.

Perhaps it’s the fact that we’re now almost nine years into this, and I don’t bristle as much at things (except, of course, things that we are required to bristle at–intolerance, injustice). Perhaps it’s the fact that we’ve had some years for doll manufacturers to perfect their art, thank the Lord. Or maybe it’s that as Nella grows, there are more obvious differences than there were when she was a chunky little cherub on my hip. As she recognizes those differences herself, I want to make sure we are celebrating them in a way that makes her so very proud to be exactly who she is. We can choose BOTH forms of advocacy: Down syndrome is just one little thing that makes Nella unique so we celebrate all the other ways she is like her peers AND Down syndrome is just one little thing that makes Nella unique so we celebrate the hell out of this amazing thing that makes her so very special.

So when an online friend, two weeks before Christmas, sent me a message that said “Did you see these?” with a link to a children’s shop in Australia, I clicked on it to find a video with the caption, “Look at these beautiful dolls with Down syndrome–we’re adding them to our shop tomorrow!”…and I fell in love.

I fell in love with the dolls that subtly capture in the most beautiful way those special little features we love. And I fell in love with the shop and the way they curated their products and the thoughtful way the dolls were being sold–wedged in between all the other beautiful dolls that had dark hair and blond hair and brown skin and white skin and Asian eyes and almond eyes–all photographed and categorized in this beautiful collection of dolls that celebrated all kinds of differences, no big deal. For the first time, I wanted a doll with Down syndrome for Nella, and I wanted it bad–so bad, I woke up early to make sure I could put one in my cart before they were sold out. I wanted to give it to her and tell her it was a special doll–a doll that had Down syndrome just like her so she could add it to her collection of all the other dolls that are just like her but know that this one shared something extra.

On Christmas morning, Nella was presented her doll as our family surrounded her, all beaming and telling her that the doll had Down syndrome–“just like you, Nella! Just like you! Isn’t she beautiful?” You should have seen her smile. She immediately took the doll, gently placed it over her shoulder and patted her back.

She carried that doll around all day, telling Lainey multiple times, “She has Down syndrome, Lainey. Just like me.” It was one small thing we could do to help her feel what we hope she is surrounded with her entire life–the message that people with Down syndrome are beautiful, capable and loved. And I knew she felt it holding that doll.

If you haven’t seen this video of the little girl with a prosthetic leg who finally received a doll made to look just like her, watch it. It’s a perfect example of what a powerful message of acceptance a doll can bring.

The doll company that makes our doll is Belonil, a company in Spain, but we purchased it from The Small Folk, the only company I could find that would ship the doll internationally.

I feel strongly about a lot of things both when it comes to raising a child with special needs and raising a child in general. But I’m learning to add the phrase “right now” to those feelings–“I feel strongly about this right now.” It helps me abstain from judging other opinions, allows me to recognize my strong feelings might be associated with current circumstances and/or pain and keeps the door open for change.

Oh, and the doll’s name? We all anticipated what Nella would name her being that she’s known for her creative Barbie names. I mean, we’ve got Pee Box, Paquel, Poop and Grocery Store sitting in the Barbie car right now.

But be still our hearts when we asked her what she wanted to name her doll and with no hesitation, she proudly answered “Nella.”

Down Syndrome: Where We Are Now

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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.