Love. Family. Parenting. Friendship. Service. Compassion. Activism. Kindness. Helpfulness. Humor. Humility. Awe. Wonder. Curiosity. Investigation. Learning. Discovery. Supportiveness. Encouragement. Cheerleading. Sacrifice. Courage. Strength. Emotional availability. Openness. Willingness. Honesty.
What stands in the way of what actually matters…
Hatred. Selfishness. Self-centeredness. Egotism. Greed. Betrayal. Dishonesty. Closemindedness. Superiority. Bigotry. Racism. Sexism. Homophobia. Ageism. Religious extremism. Separatism. Us vs. Them. Fear. Pride. Sloth. Addiction. Rage. Resentment. Gossip. Having it all figured out.
I write a lot of nonsense. This post might fall under that category, or not, or partly, or mostly. Maybe some of it matters. It matters if it helps someone in some way. If it doesn’t help anyone in any way, it doesn’t matter. All those things on the “stands in the way” list are qualities I either have, or did have, or occasionally have, or try hard not to have–sometimes successfully, often not.
Since I became a parent 13+ years ago, my perspective and priorities shifted dramatically for the better. I don’t live my life just to satisfy my own goals and interests anymore. That is so incredibly liberating. Anyone who has known me for any period of time knows that i’m ridiculously ambitious. People who are ridiculously ambitious, who are not primarily motivated by people they love more than themselves, are probably going to do a lot of harm. I know I did a lot of harm until I stopped putting myself at the head of every line.
I was having coffee with my wonderful wife this morning after the kids went skiing. The coffee was very good. The company was better. The main topic of conversation was gratitude. 2013 was a landmark year for us in parenting, and parenting is what matters most in our lives. It was a year of discovery. Our son, Nic, doesn’t like me to say much, if anything, about him publicly, so I’ll just say he had a terrific year of great accomplishments, wonderful new opportunities and he is just an awesome guy and a delight to be around. Our daughter Emma, is sometimes okay about it when we talk about her publicly, and sometimes not, but only recently has she participated in the decision-making.
Emma is autistic. She is 11 years old but speaks and presents like someone much younger. As she wrote today: “Have to understand–my mind talks heavy thoughts, but my mouth talks silliness.” 2013 has been such an important and landmark year for our family because this is the year we finally gained access to our incredible daughter’s incredible mind and thoughts. Through the use of assisted writing techniques, we have been thrust into a surreal dreamscape, where our minds are blown on a daily basis by how exceptionally intelligent, insightful, compassionate, poetic, humorous, mischievous, and profound Emma’s thoughts are.
I give full credit for this incredible gift to Emma who has to work so hard to communicate (it takes her 45 minutes to spell out three paragraphs one letter at a time pointing at a stencil board, or a letter board, and just last week a keyboard!) and to my wife, Ariane Zurcher, whose indefatigable persistence, research, exploration and commitment has led to her discovery of these techniques which have exposed Emma’s amazing mind.
If you are interested in learning more, Ariane has documented our journey on her blog: Emma’s Hope Book. She posts nearly every weekday, and she always has something valuable to say and share. Something that matters. By contrast, you can look at my past posts and it will become quickly apparent just how little of what I write matters. I seek to amuse and entertain. Sell more books. Gain recognition. On the less self-involved side, I like to stimulate curiosity, and jolt people’s perspective. I like to point out the absurdity of all the things we take for granted and think of as “normal.” Occasionally, when successful, some of it might help someone. Something might matter.
By contrast, everything that Emma writes matters. Those of you have followed her writings and commented on them have universally shared that assessment. I would also say that everything Ariane writes matters, at least to me. That viewpoint is usually shared by her autistic friends, other parents of autistic children, other parents of non-autistic children, and in general, people who care about other people.
As 2013 comes to a close, one thing I know for certain is that 2014 will be even more insanely and unexpectedly wonderful, as we learn more and more about what Emma thinks and feels. We are immeasurably fortunate. Hopefully our journey will help other parents like us, who were told when our kids were first diagnosed with autism at the age of 2 or 3, that “early intervention” was of paramount importance. It is, but not the kind of “intervention” the so-called experts recommended. The most useful information we ever could have received came from other autistic people who challenged us to put our assumptions in cold storage and open our minds to possibilities we never could have imagined. The world is a magical place. And there are magical beings living among us who can point the way to freedom and enlightenment.
As Emma said in a story she wrote for me for Christmas, “Daily she (Emma) tried to communicate her love for her family, but her words came out of her mouth wrong. In day after day conversation she was misunderstood. Finally she began to write on a stencil board and the words came out right.”
And I am so eternally grateful for your words Emma.
May peace, joy, love, freedom and wonder greet you in the new year!