An amazing thing happened yesterday. But first, a little background. In January I broke my foot and I had to give up tennis (my religion?), so I joined a gym. My first day there, a trainer introduced himself. As we left the dark first floor and entered the bright and beautiful second floor that looks like a cathedral, he revealed that he had master's degree in divinity. Now mind you that this is David Barton's gym on South Beach. (Yes, the "look better naked" gym. And, no, I couldn't make this stuff up.)
Well this week, I made a very quick trip to NYC to film a Beauty Prescription piece for Health Net. Before I left, Nicholas, my trainer suggested I stop by Saint Patrick's Cathedral during my stay. He has been counseling me in the final stages of my divorce and he felt I would be inspired in that setting.
Saturday morning I woke up before my alarm and headed out to see my long time friend Shelley who works at Bergdorfs Goodman's (The Jewish equivalent of....no never mind). On my way, I called the store and they said she wouldn't be in until later. The cathedral was precisely on my way from the hotel to my lunch date, so I decided to use this time to stop in.
I walked in and someone approached me and tried to hand me something. I paid little attention and said no thanks. I went to the right side of the Cathedral as Nicholas suggested and sat down to reflect. Five minutes later mass started. As a Jewish psychiatrist from Miami Beach, I thought mass might be a bit of a stretch. Besides, this wasn't what Nicholas suggested, so I stood up to leave. Just then the same women approached me and handed me a program. There was no way to refuse this time, so I accepted it and read:
Celebration of the Eucharist
MASS FOR PERSONS WITH DISABILITIES
Saturday in the Octave of Easter
Now she (he, they?) had my attention. My tears started to flow and didn't stop for one hour when the exquisitely beautiful service ended. What a gift this was: The time and space to reflect on all my daughter Marissa and I had been through, just as we were on the precipice of the next life-changing milestone. I appreciated the irony of this taking place in NYC where Marissa Joy was born.
I listened as the Reverend spoke about why God gives people disabilities. He said that we are all disabled and it is only a matter of degree that separates us. I looked around the room and I saw many young adults in wheelchairs, others with movements that they couldn't control, and still others emitting loud sounds they could not control. The Reverend said that those who need more care are God's sacraments. They are here to teach us the lessons of care, compassion, kindness, and patience. As a mother of a special needs child, these words rang true.
I have been on a unique journey with Marissa for exactly 20 years. There is no doubt that I would not have become the person I am without Marissa's challenges. I wonder if her hardships are in fact a blessing for me. She has required me to dig deeper, work harder and be smarter and more patient than I could have imagined. We have met so many friends, doctors and therapists. Their lives have touched our lives and vice versa. Dinner Friday night was shared with Penny Grant, Marissa's "treasure hunt doctor"; wherever she practices, we track her down. She is a rare gem and we intend to keep following her wherever her path takes her. The memory of Penny bringing a 5-foot stuffed panda to Marissa's bedside as she was recovering from brain surgery will never be lost.
Marissa has an angelic quality rarely seen in a nineteen-year-old. We have a closeness that would never exist without her special needs. She was the one who nursed me to health when I reached my personal nadir in fall 2008. She was brave, kind and wise when I was symptomatic. Others weren't. She has taught me more in 20 years than anyone, or anything, else has. Recently, I have been feeling grateful that she was born with hemiparesis (a form of cerebral palsy causing weakness of her left half). I am deeply sorry that she has had to suffer and endure seizures, surgery, countless brain scans, emergency room visits, and even bullying. But for me, it has become more of a blessing than a curse. Will she feel that way some day too? I hope so.
At the conclusion of the service, I wandered around and began to talk with some of the "persons with disabilities". I took out a card to hand to one woman and she proudly told me "I am the poster child for UCP". She grabbed it eagerly and then everyone else wanted one too. Is that all I have to give? A business card?
Today we held the Second Annual Marissa Nestor Tennis Invitational in Miami Beach. Together with the United Cerebral Palsy Foundation, Marissa and I do our small part to pay attention to helping others and help ourselves grow as well in the process.