Changed by a Child
Excerpt from Changed by a Child authored by Barbara Gill…
“I lay looking out the window from my bed in the maternity ward of a Minneapolis hospital on a Monday morning in the last week of March. The sky was leaden and the ground was covered with dirty snow. The dead, gray scene reflected my deep despair. Just the day before I had been told that my new-born son, Amar, my first child most likely had Down Syndrome. On Sunday I had felt numb disbelief. But today I knew that it was true. I see myself, as if in a movie, going home, carrying the baby. I walk up the steps and in through the front door, which closes behind me. And there the film stops, with the picture of the brown house and its blue door. I cannot see what life is like inside the house or what I will do when-if-I come out again.”
Barbara Gill’s opening paragraph beautifully illustrates the opening chapter for a parent of a special needs child, when she writes “I cannot see what life is like inside the house or what I will do when-if-I come out again.”
I believe most of us approach parenting with a great deal of excitement. There is no way to fully anticipate how it will feel to experience “unconditional love” or to be fully prepared for the inevitable challenges that lay ahead, and most of us lack a full appreciation of the rigors and risks.
Most new parents gradually awaken to the challenges, but this isn’t the case for a parent with a special needs child. Whether the child is diagnosed with an illness at birth or during their life, the love the parent feels for their child often becomes coupled with fear, confusion and a sense of anxiety about the future. It becomes difficult to separate your faith from your fear and often the two become woven together.
Some of us are fortunate to find comfort through living angels. Those angels who help us along the journey: doctors who spend extra time listening to our fears; therapists who patiently work with our children and teach us how to continue the work at home; friends and family who offer us hugs and respite from this unfamiliar world, and finally, one of our most special blessings is bonding with other parents on the same journey.
Two years ago I was introduced to one of those parents, Michael Crane. Just as I couldn’t have predicted 20 years ago that I would use the slow cooker to create employment opportunities for adults with disabilities, I believe Michael and his wife Teena could never have envisioned starting the non-profit “In Chef’s Hands” before their son Scott was diagnosed with muscular dystrophy at age 4.
With love and determination they wanted Scott to fully experience life. When he entered his last year of life at age 23, Scott asked to spend his remaining months cooking. Michael and Teena went to work to enable his wish. I asked his culinary companion (and newest Zen employee) Eileen Considine Boggins to reflect on that last year with Scott.
“Gifts come into our lives, often at very unexpected moments. One of the greatest gifts of my life has been the relationship that I had with Scott Crane. He was a 23-year-old man who was receiving hospice services from the organization where I work. He had been diagnosed at age 4 with a rare form of muscular dystrophy. This life limited disease may sound like it was an enormous obstacle in one’s life – it is, but that was never the focus with Scott. His goal was to live well, laugh, love those around him and most importantly cook and eat! I was introduced to him because I had a culinary degree and was informed this young man wanted to spend time cooking for his family, himself and of course eating the results of his labor of love…. If you had told me when I graduated culinary school that I would developing a “Food Therapy” program with a hospice patient, I would not have believed it! This one time meeting led us to weekly cooking sessions for over a year and a friendship that remains forever in my heart.
Week after week we explored our senses. We would HEAR the olive oil sizzle as we sautéed vegetables for our goat cheese pizza; we would SEE the Rustic Italian torte rise in the oven; we would TASTE the chocolate ganache before we filled the butter cream and coconut frosted cupcakes and finally, we would SMELL the garlic throughout Scott’s childhood home on the savory dishes we prepared, as he was a garlic lover.
I continued to be amazed by this young man, generous, loving and concern for others. I recognized that I may have been the mechanism to help him cook, but he taught me many “lessons of life” in cooking therapy. Scott’s quick wit and sense of humor filled our hours in the kitchen with laughter and friendship. One example of this that is etched in my mind was the day we decided to make Baklava. Scott determined it was much easier to place nuts in a zip lock bag and roll over it with a wheelchair rather than using a rolling pin. He said, “All Chef’s need to be creative with their resources”.
So in celebration of Scott’s life and In Chef’s Hands we have adapted recipes from the cookbook that he and Eileen spent a year creating. We hope you’ll enjoy these slow cooking creations as you start your Summer of Zen.
Author’s Note –
Please join us for a weekend of Zen.
- Friday 19th June at Elawa Farm for our Summer Slow Cooking class highlighting vegetarian and seafood dishes.
- Saturday June 20th at the Andersonville Galleria between the hours of 1-4 pm where we will have a Zen Cooking Sampler. A percentage of all the zen blends we sell that day, either online or at the Galleria, will benefit our packaging partners at Planet Access.
- Sunday June 21st at Chicago Botanic Gardens where we will be at the Farmers Market on the esplanade from 9-3pm. Come and sample our raspberry white choc chip bread.
Zen Moment
“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.”
~Elizabeth Stone
