It’s been over two years now that this blog has had a readership extending beyond family, friends and the handful of moms who came to read ramblings of a mama in love with holidays, cute shoes and a blond little girl who completed her world. It was an interesting transition at first–putting myself out there knowing that my dad wasn’t the only one reading or commenting. Sometimes it’s been challenging. Mostly, it’s been inspiring.

I follow the golden rule of “To Thine Own Self be True” and I do my very best to write from the heart, regardless of what people think. “Be honest, yet open,” I tell myself, “Be vulnerable yet respectful.” From the day I wrote Nella’s birth story, I knew that some of the things I was writing about might be hard for people to understand–that maybe I would be judged, that maybe I would be misunderstood. Writing openly about both my vulnerabilities and joys in life as well as a handful of topics in between has been a good experience for me. I’ve become more confident both as a thinker and a writer and more compassionate toward myself and my own personal journey as well as that of others.

I learned very early after Nella was born that the community of parents who have a child who is differently abled is amazing. Through the challenges they’ve faced, they have acquired strength, compassion and remarkably impressive motivation to advocate for their children. I also learned that there is a broad range of opinions, some held quietly between parents who advocate privately for their children and some expressed openly and ardently on forums, blogs, at conventions and support groups, in books and e-mails and message boards. Our common ground? We love our children. We want the very best for them. We hope they will be happy and accepted.

Today I received two e-mails, both of them kindly written and well articulated. They drew my attention to the fact that my explanation to Brett that adults with Down syndrome generally have a “child-like mentality” might not be the best choice of words. That the world needs to know that adults with Down syndrome are accomplishing many things, holding great jobs, going to college.

And they’re right. The kindness and understanding in which they expressed it made me really listen.

While the moment Brett and I shared was special, and my use of “child-like” referred to something I admire in the individuals with Down syndrome I’ve met–an enviable enthusiasm for life, I am grateful for the opportunity to learn from others and to refine my vocabulary to advocate as sensitively and effectively as I can. It is important to me to join the many others who are working to change the stereotypes and prejudices regarding Down syndrome, and the future of our children depends on it.

Finding my own voice and form of advocacy, especially using this blog, has been challenging. Nella is two years old. We are learning. Every day.

Learning feels very good to me, and I am comfortable talking about how we are learning. But the best kind of learning involves making mistakes. And today, I learned the importance of listening.

“Listening is the oldest and perhaps the most powerful tool of healing.
It is often through the quality of our listening and not the wisdom of
our words that we are able to affect the most profound changes in
the people around us. When we listen, we offer with our attention
an opportunity for wholeness. Our listening creates sanctuary for
the homeless parts within the other person. That which has been denied,
unloved, devalued by themselves and others. That which is hidden.
In this culture the soul and the heart too often go homeless.
Listening creates a holy silence. When you listen generously to people,
they can hear the truth in themselves, often for the first time. And in
the silence of listening, you can know yourself in everyone. Eventually
you may be able to hear, in everyone and beyond everyone,
the unseen singing softly to itself and to you.” ~Rachel Naomi Remen

It is an honor to give readers a window into life with special needs. That window looks different for every family, and ours does not represent all of them. What I do hope you always see is that, no matter what our children look like or what they are able to do, they deserve to be valued and celebrated. Life deserves to be valued and celebrated, and I am grateful this blog is a place where I can share that. Celebrating life–common ground we all share.

I have very big dreams for both Lainey and Nella. I have very big dreams for myself. And as I move forward in sharing a piece of our life on this blog, please know…I am listening.

Thank you to the two kind mamas who modeled true advocacy so beautifully in their e-mails today–to kindly guide and teach.

*****

Scentsy Giveaway winner and Friday Phone Dump will be in Monday’s post. Have a fantastic weekend!

Tonight we gathered under periwinkle skies for a beach sunset to honor 3-21. On the twenty-first day of the third month, we celebrate three copies of the twenty-first chromosome along with thousands of other families across the globe who share our journey. We were joined by many others who came to celebrate, lying blankets that overlapped other blankets on the sand like giant circles in a Venn Diagram so that somewhere in the middle there was common ground–a place that united us all, regardless of our differences.

We passed shovels to babies who scraped sand and filled buckets. We exchanged stories of where we grew up. We watched as both big kids and little kids chased seagulls and braved the still-chilly water of the gulf.

Unlike two years ago when we spent this same evening on the beach, there was no ceremony tonight–no tears, no prayer, no speech. The meaning of this day was fully present in the unspoken.

I’ve been thinking about this post all day–how I want to represent awareness today, what I want readers to understand. I could give you a lot of facts and figures. I could talk about important major headlines in the news right now like prenatal testing and abortion politics. I could tell you about inclusion and its importance in the education of all children. These are all critical topics–things I read about, things I care about, some of which I’m still figuring out.

But what I express best is what’s on my mind right now.

Right now, I am thinking that Down syndrome is the best thing that ever happened to our family.

It is amazing what can happen when you open your eyes to the world around you. It is amazing to be afraid–to feel it, to acknowledge it, to face it head on. And oh, Good Lord, is it ever amazing to be transformed by love in a way that awakens parts of you that needed to come alive.

I think about a lot more now–what kind of person I want to be, how challenges make us grow, how the world is changing, how we need to be reminded that we cannot control everything and if we could, how predictable and flat our world would be. I am so much more aware of beauty. Of people. Of unique differences that make our world rich and interesting.

I want to be a great mom. I want to be strong and amazing. I want my children to be strong and amazing. I think we’re headed in the right direction, and Down syndrome is teaching us a lot about that path.

A few months ago, out of the blue, Brett asked me “Hey babe, will Nella be smart?”

These questions always catch me off guard. Brett’s so very go-with-the-flow and doesn’t really have a lot to say about Down syndrome. He’s always said “Let her show us who she is” and he’s pretty unphased by any information I present. Between the two of us, I’m definitely more the research girl. He says Nella’s a better teacher than books, and he’s right. But I wanted to address the situation appropriately.

He must have sensed my confusion as he quickly followed with, “I’m totally okay if she isn’t smart. I just want to know…could she be smart?”

I formulated my response thoughtfully. “Babe, I will never say what the future holds because I will never put limits on my child. I think she’s brilliant, but she might not be able to show it quite like Lainey does.” Feeling the need to maybe soften the blow or prepare him a little more, I continued. “Adults with Down syndrome generally have a child-like mentality, Brett. You know that, right?”

He stopped and thought for a moment. “You mean, when she’s older, it will be like we still have a kid, right?”

I braced myself for sorrow. “Well, kind of,” I answered.

And I waited.

He raised his head and his eyes met mine. He was beaming, smiling, excited.

And, with tears, he finally said, “That is so awesome.”

*****

Tonight I am grateful for what we are learning. I am inspired by the way challenges are shaping us. I am fueled by any remaining fear and sadness. I am motivated to see people for who they are inside–for what they have to offer rather than what they are lacking or how they are different. I hope you are learning this with me.

In explaining to Lainey our celebration tonight, I expounded on the deeper meaning of today. “Remember how Nella has Down syndrome?” I asked. She repeated the term “Down syndrome” and quickly connected it to our Buddy Walk last year and Nella’s therapy visits. We went on to talk about a lot of other things that make people beautiful and unique as well. “We’re all different in a lot of ways but we all like a lot of the same things too,” I reminded her. I then initiated a list of all the things that make us unique and awesome. “Some kids have wheelchairs, some kids have blond hair, some kids run fast, some kids run slow, some kids have brown skin, some kids have blue eyes, some kids know how to read, some kids don’t, some kids talk differently, some kids are short, some kids are tall…” and when I came to the part where “some kids have Down syndrome,” Lainey smiled and took ever.

“Just like some kids wear green shirts and some kids wear blue shirts, right Mama?” she asked.

My eyes pooled with tears and I hugged her. “You’re right, baby.” I answered.

Thank you again for coming here.

Yes, there are more challenges. But tonight, what do I want you to be aware of? Well, I hope you see it like my wise 4-year-old daughter.

The world is rich with unique differences. Some people wear blue shirts. Some people wear green shirts.

Happy World Down Syndrome Awareness Day.

To learn more about Down syndrome and the many accomplishments of individuals with Down syndrome please visit ndss.org.

If you are pregnant and have a new diagnosis or you know someone close to you who is expecting a child with Down syndrome, visit downsyndromepregnancy.org for a wealth of helpful and assuring information.