Rico

RicoPeople want to know if Rico misses Ariela.

If you need to ask, you have no idea about their relationship, which was, at best, non-existent. Ariela wanted a lap dog to ride around on her chair. She liked him when he was a pup, but when he grew too big to fit on her lap, she lost interest. He was supposed to be 7 to 12 pounds. That’s what it says in the Havanese handbook. He’s a whopping twenty pounds the last time we checked, a mutant created by the GMOs in dog food.

Ariela was not impressed with his good looks and superior intelligence. He rings a bell by the door to let us know he wants to go out to do his business. He rolls over, shakes hands, and stands on his hind legs while he dances in a circle. He will do anything for a treat.

Rico was very jealous of Ariela. When I’d go to her, he’d thrust his wet snout in the back of my knees. If I continued to ignore him, he’d jump up and push my butt with his front paws. “Did you forget me?” Whenever I took her to the bathroom, a maneuver that would involve both of my arms and legs, Rico would run to the door and ring his bell.   Tinkle, tinkle, tinkle, as if his bladder was in sync with hers.

Rico served as doorman for Ariela’s guests — her attendants, friends, therapists, teachers, the oxygen delivery guy. As soon as the front doorbell rang, Rico sprang into action, barking, jumping and whining, “Me, me, play with me.” A lot of noise all day, every day. I complained that I couldn’t get my work done, hear myself think, or listen to a phone conversation over the din of Rico barking, girls laughing, and music playing.

Rico sleeps by my desk now. He has what he wants – food, water, treats, and my attention. He misses the parade.

Get away

CA coast 6.21.14Gary wanted to get away. As if leaving our home was some rite of passage on the road to healing, and new scenery could help us escape the emptiness of our house.

We decided not to go too far. “Baby steps,” my brother advised.

I wanted to see the ocean. We agreed on Jenner, a small coastal town, north of San Francisco. Gary made a reservation. “A room with a view of rocks and waves,” he said.

We left late on a Friday afternoon.

“I forgot a jacket. It could get cold by the ocean.” We were already on the freeway but still close enough to turn back.

Gary didn’t slow down. “You can buy a sweatshirt.”

“And, I forgot my nightgown.”

“Fine with me. You won’t need it.”

Traffic was slow getting in and out of San Francisco. We stopped in Sebastopol for dinner. It was dark by the time we finished. We headed toward the Coast Highway, stopping for gas in Guerneville. Then, through Monte Rio and Duncan Mills on a winding 2-lane road.

“I think we just drove through Jenner,” I said. It was just past 11pm.

“Are you sure?” There were a few houses dotting the east side of the highway. A restaurant, a gas station — both closed.

“So, where’s the lodge?”

“It’s probably up the road a ways.” We were on the coast highway by then, but it was too dark to see the ocean.

I entered the address in the GPS app on my phone. “It’s only 14 more miles.”

“Shouldn’t take us more than fifteen, twenty minutes,” he said.

“Gary, Mapquest says it will take another hour plus.”

“Mapquest is wrong.” Gary was confident. I’m glad he was driving. Night driving puts me to sleep. The road turned left, then right, then switched back and forth.

I dozed off for what felt like a few minutes.

We arrived at the lodge close to midnight.

The desk clerk joked around about I don’t know what. I was too tired to hear him.

“We’ve got our last ocean view room waiting for you,” he said.

Gary opened the door and turned on the lights. We stood at the entrance to a large room, too roomy to be called cozy, with dark tiles and flat muddy brown carpet. The king sized bed faced a sixties green Jacuzzi. Two bathrobes hung on a long rod that served as a rudimentary closet. Gary swung open the door to the bathroom and stared at the immense space. It was big enough to park our car. There was an elevated toilet seat and a raised sink. The shower had no door or bottom ledge to catch the water. You could roll right in.

“This is a wheelchair accessible room,” he said pointing out the obvious.

I nodded.

“We’re not staying here,” he said.

He wasn’t angry so much as spooked, like she had followed us. Later, we will joke and say that she was laughing at us. But, at that moment Gary turned around and marched back to the front desk.

“What exactly did you tell the clerk?” I asked Gary as he ushered me out into the night.

“I told him our daughter used a wheelchair, and she died four weeks ago.”

Sunflowers

IMG_0397San Mateo Farmers’ Market. My Saturday ritual. Fish from Mission Seafood. Lettuce from Tomatero Growers. Almonds from Francesca.

I met Kelli, and we walked the aisles. We shared a bunch of fresh basil, roots intact. “If you put them in water, they will last a long time,” I told her. I stuck my nose in the middle of the leaves. The scent of past summers, when I grew my own basil and made fresh pesto.

I ran into Kathy, one of Ariela’s religious school teachers. Then, Gina, from my yoga class. And, Jim from around the block.

Other friends, a couple I hadn’t seen for a few weeks stopped to chat. They always ask about Ariela. They didn’t know, and I had to tell them. “In May,” I said.

She wiped her eyes. He strained to speak. I kept my sunglasses on and blinked to clear my blurry vision. We stood for a while without speaking near the Half Moon Bay nursery.

I treated myself to sunflowers.

Not Her Real Name

Ariela didn’t want me to use her real name. I’m hoping that if you know her you will “get over it” (one of Ariela’s favorite expressions) and go along with her request. I agreed to change her name. For this blog, her name will be Ariela. It was, in fact, the name we had planned to give her. We wanted to name her after the nymph in the “The Tempest,” our favorite Shakespeare play. And, my father’s name was Albert. Ariela would be named in his memory. Then a few weeks before she was born, Ariel Sharon was in the news making hawkish comments. Gary said he didn’t want his daughter named after a war-monger. I thought his reaction was a bit harsh, but I let him win that one. (Did this set a precedent for the many battles we would have about our daughter? We had a lot to fight about.)

Yes, some of the stories are revealing, maybe too revealing of her and her special needs. But my stories are really about me, my experiences and struggles as a parent.  Her friends said they would help convince her that my stories might help someone else. To ease someone else’s sense of overwhelming loneliness in a world unfriendly to people with disabilities. To relieve the gnawing self-doubt that flood the minds of parents of children with special needs.  When your child is unique, there is no guidebook to tell you what to do.

Though she had been told many times she was an inspiration, Ariela didn’t want that label. She didn’t want to be special, or unique, and certainly not a marvel or miracle. She hated that. She wanted only to be accepted, to fold into the group with everyone else.

The irony is that someone else wrote a story about her that was shared many times across the web and in print. The writer used Ariela’s real name. And, why not? She had no agreement and made no promises. Unlike my stories, the other writer’s piece is entirely flattering. I make no such promises.