During my yoga practice this weekend, my teacher Jess shared something that got me thinking. She said that at the end of her pregnancy with her twins, she was up 80 pounds and feeling out of sorts with her body. I can only imagine. Jess’ friend, whom I assume is another yogi, commented on how wonderful this was. Jess must have looked at her dumbfounded. What could be great about all this weight gain? About feeling like her body was alien to her? About knowing what lay ahead to get back in shape once she gave birth? Jess’ friend explained further. She said that now Jess had the gift of understanding her ill, overweight and out of shape students in a new and profound way because she herself had experienced something similar. Looking at Jess today you’d never know what she went through. When she teaches though, she shares her experiences from the heart, relates from a place of purity and connection to all of her students no matter where they are with their practice, their body, their mind. It doesn’t matter. It hit me that this level of empathy and ability to support her students through the actual asana and the emotional blocks is possible because of Jess’ journey, not in spite of it. No training or book could have prepared Jess the way personal experience has. So why do I share this story you may wonder? Simply put, I see my own journey in Jess’.
In June of 2010, my 5 year old daughter was diagnosed with Tourette Syndrome. The diagnosis came after months of desperately trying to figure out what was wrong with her. The months leading up to the diagnosis were filled with doctor’s visits, conversations with other parents, reading books and of course MANY Google searches on tics, anxiety, rage disorder, neurologists, vitamin regiments, dietary changes… I felt alone, petrified of the future, dreading the diagnosis I was pretty sure we’d be getting. Spending time with my daughter, something I had once longed for as a working Mom, became a source of stress for me. I struggled to be in the moment with her. How could I focus on the board game we were playing when her eyes were rolling, her head dragging to the side, her hands stretching and clenching rhythmically? How could there be any simple pleasures when my little girl’s brain was “malfunctioning”. When I wasn’t with her, I worried. How she was feeling? Were other kids making fun of her? What did it feel like to tic all the time? What did other parents think? Teachers? And then came the blame game, the one where I decided this was all my fault. After all, I carried her for 9 months. I had a hard time with the pregnancy hormones, vomiting through the bulk of it. I allowed the stress of my job to get to me during her gestation and early in her life. Maybe living on milkshakes and bagels while pregnant (it was all I could tolerate) had caused this. Or perhaps it was the medications I took during my pregnancy for the nausea and another health condition. The doctors said they were safe but maybe they were wrong. Or maybe this was due to all the illnesses Maddie had as a baby, toddler and preschooler, a result of being exposed to so much in day care because after all, I worked! Maybe that was the wrong choice. I was tormented.
If someone would have told me that, like Jess and the 80 lbs she gained, I was being given a gift with Maddie’s diagnosis, I would have been downright angry, thinking that person was a Pollyanna or certainly not a parent of a child with special needs themselves. Only now, 6 ½ years later, I know this to be true. In fact, Maddie’s diagnosis brought with it many more gifts than I could have imagined. They include:
- Knocking my priorities squarely into place. What really matters in life anyway?
- Learning to accept my child for who she is and who she is not. Learning to be with imperfection which, for a recovering perfectionist is quite interesting…
- Learning to powerfully stand for my child in the face of adversity
- Creating a new relationship with patience. Patience for my child and patience for people who don’t understand her diagnosis.
- Connecting with parents of children with any special need or difference on a profound level.
- Breaking the destructive cycle of controlling and managing my family and other people in my life when I had it that I knew better.
- Being responsible to figure out my greater “what for”, my purpose in life. Turns out that it’s pretty simple, to be of service to others.
- Maddie’s diagnosis got me into action to follow my dreams. With a great deal of courage and tons of support from loved ones, I recently left my corporate HR job of 17 years to launch a Career & Leadership Coaching business that would provide me the opportunity to do work I love while being of service to others and be more available to my children. Both of them. It turns out my youngest also has Tourette.
In every challenge, we have choices. We can relate to it as a struggle, something we are at the effect of or have fallen victim to. Or, we can sweep the “feels” and fears under the rug pretending they don’t exist. Or, we can chose a path of responsibility. One where we face our deepest fears and angst head on in service of our child, our family and our self. From this place, we are able to powerfully move through our stops and heartbreak to become present to the gifts available right now, TODAY..in the present moment.
Who will you be in the face of your child’s differences? How has your child’s diagnosis shaped you? Your family? What are the messages you want your child receiving in the face of adversity? Will you model how to be a survivor?
If you’re reading this with peaked interest but skepticism, I’d love to hear from you. And, if you’re thinking that I should take off my “rose colored glasses” and get real, I’d love to hear from you, too. My commitment, as a mother of two children with TS is to be of service to other parents in the NJCTS community. I’ll do this by sharing my own experiences (more blog posts to come) and providing complimentary parent coaching.