Living in Lilac

Here we are at the 5th annual Izzy Gala.

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I look at this photo and can only think about how lucky I am. On a purely surface level, we are lucky to be afforded the comfort and luxury of spending an evening at a “purple” tie event on the 18th floor ballroom of the historic Biltmore Providence. Not everyone gets to dress up in a gown, sip champagne, tear up the dance floor to a live band, and retire to a beautiful room facing the city’s statehouse alongside their dashingly handsome best friend. It is a privilege to take part in such an experience.

That “luck” extends beyond the feeling of glitz and glamour. I think we can all agree that having cancer doesn’t make one lucky by any stretch of the imagination. I suppose what I mean is more serendipitous. All of the twists and turns that life has taken in the past few years that have led to deeply routed connections with some incredible individuals. I always harp on community that exists around illness and it is truly beautiful to see it in action.

The Izzy Foundation blossomed out of grief. The grief of a child leaving the physical world too soon as a result of cancer. From the ashes of loss came rebirth and Isabelle Wohlrab’s tiny, loving, spirit would live on. In Izzy’s memory you have a brightly decorated family room in Hasbro Children’s Hospital that provides comfort and respite to families that are just trying to hold it together through some of their toughest days. You have over $23,000 in scholarships this year alone for children and their siblings to be able to go to school and ease the burden of growing medical debts. These are tangible results of a community that decided to make life better for others facing similar battles.

When Dr. Robison was giving her toast, she spoke about the intention behind this year’s theme “Living in Lilac”. Beyond continuing with the purple theme, it was important to her to communicate that in spite of it all, you and your loved ones can live a full and vibrant life alongside cancer. It cannot dull all of the laughter or love or generous spirit we have within us. This year I listened to her  deliver the toast not as Dr. Robison, my trusted oncologist- but as Tina, Izzy’s mom. It was raw, authentic, and hopeful.

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As the primary facilitator of my care since 2013, I’ve always known that Tina “gets it” when it comes to evaluating medical decisions from the standpoint of quality of life, impact on family, work, etc. Last night was a reminder of that level of understanding.

That understanding extends to the Women and Infant’s staff present that have also become like family. Last night I had the pleasure of bopping around to Tom Petty alongside people that have consistently gone beyond the call of duty to ensure that I stay well. To these medical professionals, you aren’t just the next patient on the schedule. They cheer you on, they cry with you, they hurt when you hurt. They don’t just go home when their shift is over. These are people that on the most human level, feel for your experience and do everything they can to help improve it.

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Living with cancer can be a lonely task whether you are the patient or caregiver or loved one. We don’t always understand the disease and we don’t always feel in control of our fate. Sometimes we feel exhausted, utterly depleted. Sometimes we let the fear of “what-if’s” consume our projections of the future. Sometimes it feels like too much for any one person to handle.

Well, it is.

But- with the support, warmth, and drive of a community that understands the plight, we can come together and lift each other up in unimaginable ways.

Last night’s event was bursting with the kind of love that could only be captured in the heart of a spirited child. I am grateful to those that made it possible for Cory and I to share that experience. It means more to us than you know.

Izzy would be so proud.

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11 thoughts on “Living in Lilac

  1. This post made me cry. I cannot begin to imagine how much love was in that room last night , but I DO know that I am so grateful right now. Grateful for you and grateful for the compassionate people that have helped and guided us through the past four years. We have been blessed . 💜

  2. You looked beautiful. Thanks for your commentary from the dinner last night. Obviously, you have wonderful doctors and a great support system. Take care and Happy, HEALTHY New year. Our best to Cory.

  3. Write the book Jess – put these all together and publish. This collection of essays can inspire and support – who knows – how many. You have a gift – share it. The Jess I know – funny, witty, compassionate, raw and honest – it’s all there in the pages of this blog. I am so happy and relieved that you are feeling good these days – prayers and hope – lots of it – that it continues. I have been blessed that you were i my life, that I had you as a student, had the privilege and honor of mentoring you. That was a gift. Truly. xoxox

    • Warrior Jessica! i can only say a generous, “thank you” for your honest, continued spirit writing. I treasure that you are one of my, “life teachers!” I wish you,”gifts in the New Year!”

  4. You looked like a Hollywood star, Jess! Thanks for sharing this with me (us)! We love you and stand by you always!❤️

  5. You look absolutely stunning, Jess! And this is beautifully written (as always). You continue to be an inspiration to those around you. Sending love and well wishes from afar, and hope to see you soon ❤

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