Last night we were joined by family and dear friends at Shadowbox Live for the Pleasure Guild's 2nd annual Laughing, Living, Giving event, a fundraiser for Nationwide Children's Hospital Hospice and Palliative Care program.  We had a great time!
Below are the words we shared before the show.  We were honored to have been asked to tell about our experience.

We appreciate you being here this evening. We appreciate you stepping away from your own concerns -and we know you have them- to share ours.
Our daughter, Celia, would have started Kindergarten this fall. She didn’t make it to her fifth birthday though – she died in January, at the age of four. She was born seemingly healthy – her first word was “hi” and she always said it waving exuberantly, with an upstretched arm. She liked wagon rides through Grandview and swimming at her grandparents’ pool and visiting the aquarium at the zoo… Several months after her first birthday we noticed she was losing skills. She stopped walking, stopped talking, began waking at night. It took more than six months to make a diagnosis. Right before her second birthday we learned that Celia had Batten Disease – a neurodegenerative disorder with an autosomal recessive hereditary pattern. Batten disease causes seizures, blindness and premature death – it takes the childhood, and then it takes the child. There are no effective treatments and no cure for Batten Disease. Our primary goal was to keep Celia comfortable. Given her diagnosis, we immediately enrolled her in Nationwide Children’s Hospice and Palliative Care program. And we prepared to say goodbye.

Where is the good in goodbye?
Celia needed NCH Hospice and Palliative Care for almost three years. When her symptoms were not under control, Hospice nurses visited our house regularly. When she hit a plateau in disease progression and when she seemed pain free, they visited less frequently. But they were always, always just a phone call away. They were the good in goodbye. Celia was not able to ride comfortably in a car seat, so Hospice made her life easier by coming to her, and by delivering medications that helped control her seizures.  They consulted specialists to avoid unnecessary tests and trips to the hospital.  Hospice not only improved the quality of Celia’s limited life, they also made our lives, and the lives of our close family – Celia’s extended circle of caregivers - easier. Hospice staff researched Celia’s rare disease, advocated for our family, supported our decisions and honored our wishes. They were with us while we watched and waited and wept. They helped us plan for life after Celia.
Thank you all for being here tonight. Thank you for reaching into shallow pockets with deep hearts, for laughing, loving and giving… and for supporting the Pleasure Guild’s efforts to put a little bit of good in goodbye.
Special thanks to the women of the Pleasure Guild for continuing efforts to help families like ours, and to the amazingly talented performers at Shadowbox for a fabulous show and for supporting our community in such a meaningful way.


rht said...

Good group. Good cause.

The Wendels said...

Privileged to be part of something so wonderful to honor such amazing people!

Beth Ann said...

What beautiful words to share with those who truly do make the journey a bit more bearable. You all look amazing! Hope the evening out was fun : )