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!