The Life-Changing Question That Rocked My World
“Things are as they are, we suffer because we imagined different.” Rachel Wolchin
“To wish was to hope, and to hope was to expect.” Jane Austen, Sense and Sensibility
Have you ever experienced a moment when you are hit with a question so profound that it makes you reevaluate all you have ever held to be true? I was lucky enough to have this happen to me. 10 years ago I was sitting in Dr. G’s office. I had been seeing a therapist because I had been struggling with Jack’s challenges. It was an intense time–there were so many issues and I felt so helpless, exhausted and depressed. I was at my wits’ end. I needed coping strategies and I needed them fast.
I had been sobbing and discussing the loss of my dreams for Jack. What he would never have, achieve, or experience.
Jack will never experience friendship, I wailed. He will never have children, never fall in love, never create an independent life for himself. I went on and on—you get the gist. Finally I looked at my therapist. He stopped taking notes, sighed and looked me straight in the eye. He asked:
Who do you think you are to judge what makes a meaningful life?
Wow. That stopped me cold. He then went on.
You have a very limited viewpoint because you observe him from the outside. You don’t see his inner life. For all you know, he could be experiencing more peace and fulfillment than you could ever imagine. You are only focusing on what he lacks. Jack will experience many of the same feelings you do, but they will look different. He will have his own unique struggles and joys, but they will be on his terms—not yours.
Jack eyes his hamburger in a restaurant–pure joy!
Who do you think you are to judge what makes a meaningful life?
I still grapple with this question. Jack may not speak or sign, but what he does have is an absorbing inner life. I can only guess at his thoughts by close observation. What I see is encouraging. Jack can be mesmerized by the sound of his own fingers rubbing on cloth, or the hum of the lawnmower outside. His serenity would make any practitioner of meditation envious. Sometimes I hear him laugh out loud when he’s alone in his room. I smile and like to imagine what he is thinking.
Resting and thinking pleasant thoughts
I left the therapist’s office all those years ago, but that question still remains. It influences how I parent BOTH of my kids even today. Special needs or not, parenting isn’t designing a newer, fresher, 2.0 version of my own life. It is helping my children know themselves and expanding the definition of a meaningful existence.
Quality time with Bubba Sue
“There is a victory in letting go of your expectations.” Mike White
“Peace begins when expectation ends.” Sri Chinmoy
“Whatever happens in the world is real, what one thinks should have happened is projection. We suffer more from our fictitious illusion and expectation of reality.” Jacque Fresco
I’m the mom of 2 great young adults, as well as of a very spoiled plott hound named Bubba Sue. I grew up in New Jersey, but have lived in the Cincinnati, OH area for the past 18 years. My husband Mike and I have been married for long enough not to look like our wedding pictures, but even after all these years, he still makes me laugh. After 15 years of questions and no answers, Jack got a diagnosis of Smith-Kingsmore Syndrome. I wanted to write this blog to help special needs families know they are not alone.
