I’ve been “watching my feet” a lot again recently. This is a habit I developed about 18 months ago when I was pregnant with my daughter and, at the 20-week ultrasound, we found out that there was something wrong that seemed possibly inconsistent with life. I was right in the middle of my yoga teacher training at Whitman Wellness Center and I was finally starting to internalize the idea that, for me, yoga was a way of approaching life and not just a series of poses that I would come to when I needed a good workout. This way of thinking had been in process for a long time. Yoga had already seen me through the loss of my father; international aid work in the midst of a civil war; a deeply scary attack on a beach in Cameroon; and, most recently, years of infertility. I came to my mat with varying degrees of reliability through it all but found myself, each time, relieved to return to the spaciousness that yoga provided. Now, my yoga community held me up in my grief and I made it to the mat, a life raft that kept me from drowning in despair. I did not have the energy to push myself through sun salutations or triangle pose or, anything, really, other than child’s and corpse poses but they provided what I needed, which was a reminder to deal with what was in front of me. When all of the testing was done the news that our daughter had Down syndrome came as a relief. My husband and I celebrated! We had used our time together during that uncertainty to set our intentions for our new baby and our lives together. We said that we wanted her to be able to play outside and accompany us on hikes, kayaking, camping trips and other outdoor adventures (with some of the possible diagnosis she might never have left the hospital); we wanted her to be able to contribute positively to her community; we wanted her to be able to experience love, happiness, and true friendships. My fellow yogis knew our values and celebrated with me again, a person with Down syndrome can do all of these things and so much more. Looking at my feet, and yoga, had gotten me safely to the other side of another personal crisis.
After I dealt with the surprise of my daughter’s diagnosis I started to learn everything I could about Down syndrome. The truth is I had never met or interacted with anyone with Down syndrome and I was nervous. My husband, having worked all over the world and had met many people with Down syndrome said, “anyone who is afraid of having a child with Down syndrome has never met anyone with it”. The more I found out, the more I realized that I had to make a decision – to push for Julia Grace to get the absolute best of everything or to advocate for inclusion for all children and adults with Down syndrome.
A year later, my decision is clear and I’m again looking at my feet, although for a different reason. About six months ago I recorded a spoken word piece on my iPhone while driving home from Boston Children’s Hospital. A week or so later I was with friends in Vermont and felt myself pulling out my phone and saying, “listen to this”. At the same time I wondered why I was sharing this set of intense ramblings with these particular friends. They didn’t have a child with a disability, they are child free by choice, in fact. It seemed they couldn’t relate at all but something told me that they needed to hear it so I asked them to listen to it. Tony, who is an Emmy-award winning filmmaker, got a light in his eye and said I could do something amazing with this. As surprised as I was, his vision excited me. About six weeks later, just in time for World Down Syndrome day, we released Why Be Normal (https://www.youtube.com/watch?v=ZaKRpbjmGO4&feature=youtu.be). We’ve had over 30,000 views and new and expectant moms have written to us telling us how it had touched their hearts and helped inspire them to expect more for their babies.
That was the start of our non-profit dedicated to reimagining life with Down syndrome and that is how everything about this process has been. A week later I picked up a flyer for a grant writing class and knew I had to sign up although I couldn’t begin to imagine why. There they helped me clarify my vision and understand that I needed a framework to hold and actualize my ideas. Since then everything has flowed forward with a simplicity that is both remarkable and confounding. Don’t get me wrong, it has been an astounding amount of work and has taken diligence and organization but people ask me how I work full time, have a 13 month old, and work on a start up non-profit and I have no real answer other than I just do it. Ideas just come to me and I follow them. Or the right people come into my life at the right time and offer me what I need or introduce me to someone that has a skill that wants to help. It’s the idea of “being in the flow” that I learned about while studying yoga and it is always humbling to watch it in action.
We have been a non-profit since May of this year and our second big project encourages moms of babies with Down syndrome to breastfeed. We’ve released a series of photos and they’ve been shared widely online, including by “Love What Matters” and “PopSugar Moms” (almost 10 million followers between the two social media pages). The photos have inspired an article on the French news site LCI and have been shared thousands of times and we’ve received hundreds of positive comments. We have an inspirational video in production; we are working with several specialists to write a book on breastfeeding babies with Down syndrome; and we are developing a database of lactation consultants who specialize in working with this population. I have new ideas and inspiration coming in every day and I sometimes feel rushed forward by the exciting progress. But, when I’m overwhelmed with how quickly this is all happening and wonder how in the world I am going to honor the trust and resources that the Down syndrome community has place in me, I just remember to look at my feet, they haven’t led me in the wrong direction yet.
Learn more about our projects at www.juliasway.org.
Nicole Starr Photography