• The Power of Community

    Most definitions of parenthood are variations on a theme – “The state of being a parent.”

    This is a useful construct if you understand what it means to be a parent but for many of us, parenthood is an ever evolving, often terrifying, but always rewarding job. Most of us learn what it means to be a parent through trial and error until we settle into the role. After a while, we get the hang of it.

    But if you’re a parent of a child with cancer, this quote probably resonates: If parenthood came with a GPS, it would mostly just say: RECALCULATING.

    When you child is diagnosed with cancer, all bets are off. Each day brings new challenges and even greater unknowns. Everything you ever thought you knew becomes unclear and decisions once made without thought are now scrutinized and agonized over. Routine flies out the window, hospital procedures dictate schedules and sleep is brief and interrupted. Healthy eating? Forget about it. Many of us rely on caffeine, fast food, and the undying love for our children to keep going each day.

    When added together – sleep deprivation and coffee overload, junk food and escalating stress – the toll on cancer parents is high.

    Taking care of those we love takes priority over self-care.

    That’s where 13thirty Cancer Connect comes in. Thanks to a grant from the Greater Rochester Health Foundation and Excellus Blue Cross Blue Shield, our parents are making the time to take care of themselves. 13thirty Fit – Parents is a 12-month program offering physical fitness classes, gentle yoga, and free massage to help alleviate the burden of caregiving.

    Just like our programs for teens and young adults, our parents’ programs are designed to help weary parents build a new peer community with others who understand. At 13thirty, everyone ‘gets it’, so words are often unnecessary. Support is free for the asking and the coffee pot is always on!

    If you are a parent, come and visit our Center. We’ll give you the nickel tour and listen for as long as you need. Contact Steve at (585) 563-6221 to register for fitness or yoga and to make a massage appointment. Not only will you feel better, you’ll make new friends with like-minded folks.

    You deserve that and more, don’t you think?


    About the Author

    lauren-spiker-1Lauren Spiker is our founder, executive director, and chief visionary with a pulse on what’s happening in the world of AYA oncology. Her dreams are big and bold!

  • fence with mirror

    Painting in the Garden (and other Life Reflections)

    We must cultivate our own garden. – Voltaire

    “Have you thought what you’re going to do with my ashes when you get them back?”

    This was not a question I’d ever imagined being asked, especially by one of my children. So, when Melissa surprised me with that question one beautiful spring day seventeen years ago, it took me a minute to respond even though I had, actually, thought about it. Knowing that my 19-year old daughter would die soon of a cancer that could not be cured, I had thought of many unimaginable things.

    Melissa's Story 13thirty

    “Yes, I have,” I sadly responded. Knowing that she thought cemeteries were lonely places, I suggested that we might spread her ashes over the Grand Canyon where we had recently spent a bittersweet last family vacation.

    “Hmmm, I don’t think that’s a good idea,” she said. Seeing my puzzled look, she continued. “Remember how windy it was the day we were there? It would really be gross if my ashes blew back on all of you.” I still smile remembering how hard we laughed at the thought.

    “Do you have a better idea?” I retorted when we stopped laughing.

    “How about the garden?” my always-wiser-than-I daughter offered. It was a perfect plan. She knew we loved to be in the garden but more importantly, I think she knew that tending to and nurturing tender plants and nascent blooms would console my grieving heart when she was gone.

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    And she was right. Over the years, Melissa’s garden has grown from the first small bed, where her ashes rest under the arms of a lovely garden angel, to a rich tapestry of color and texture covering our entire side and back yards. This is my sacred place. The place where I seek and find peace. The place where my soul rests alongside hers. A haven from the day’s harried pace and society’s many conflicts. Here, the world makes sense as days pass as predictably as the seasons change.

    As it has through time, spring’s rebirth grows into summer’s glory and eventually yields to the bronze of autumn and the quiet hush of winter’s snowy cover. I take comfort knowing that this universal cycle will always start anew and that the energy within all living things changes form but never dies. Because this is what I believe, my daughter’s ever-present spirit fuels my resolve to carry on and strengthens my confidence that life does happen with purpose.

    Recently, Melissa’s garden became a respite for a small group of other moms whose lives, like mine, were turned upside down when their children were diagnosed with cancer. We came together on a beautiful summer’s night, planted our easels throughout the garden, and with brush in one hand and a glass of wine in the other, absorbed the quiet solitude as paint took shape on canvas. mary Beth 1

    As evening light started to fade, we stood back and admired our work. The finished pieces were each unique. Different color schemes, brush stroke, perspective, vantage point. But each was inspired by a common bond – the shared experience of motherhood.

    I’ve learned over the years that being a parent and gardening are very similar. Both involve patience, nurturing and the willingness to sometimes overlook pesky, unsightly weeds – or children, in the case of parenting. To do both jobs well, one must have the courage to envision and hope for the future. Neither happens overnight and shortcuts never work.

    But perhaps the greatest similarity is that both parenting and gardening are difficult, exhausting tasks leaving one bone-weary and often disappointed. It’s physically, emotionally, and psychologically draining with little respite, especially when parenting a child with cancer.

    The 18th century French writer and philosopher Voltaire once wrote. “We must cultivate our own garden.”   On this magical evening, four moms whose paths would likely never have crossed had it not been for cancer, heeded Voltaire’s advice. Together, they created art inspired by the beauty around them and their individual life experience. final paintingsIn this holy place, they found their own peaceful patch of earth, savored precious moments of solitude and refreshed their weary souls in the company of friends who understand.

     


     

    This is the wonder of 13thirty Cancer Connect. We support teens and young adults on their journey through cancer and beyond, as well as being a place for parents to connect with each other and build understanding and encouraging community. If your teen or young adult has endured cancer’s treacherous road and you have a need to “cultivate your own garden”, we invite you to join us! The coffee’s always on!

     

    About the Author

    lauren-spiker-1Lauren Spiker is our founder, executive director, and chief visionary with a pulse on what’s happening in the world of AYA oncology. Her dreams are big and bold!