Heather

It was the rectangular cup dispenser.

The little, plastic, forest green kind that hold those baby cups you can use for mouthwash, or to rinse after you brush your teeth. My mom always tried to make me keep the same cup the whole time we visited. Heather told me she could care less, as long as I threw the old ones away. I’ve always used a new one every time I brush my teeth, as long as my mom hasn’t been standing next to me making sure I don’t ‘waste’.

I smiled and squinted in the dim light, my eyes directed at the cup dispenser for a good five minutes. I swept my gaze from side to side to view the soft blue towels, the toothbrush holder, and the lamp with the tiny beach chair. Nothing had changed--the brassy, stringent Neutrogena soap still sat on the counter. The tiny toilet was still barely off the ground.
The magazine rack was full of Entertainment magazines, even the most recent one that my grandpa must have placed there out of comfort. In the drawer I opened, there was a Ziploc baggie full of bobby pins, hairclips, and a hairbrush covered in red hair. Behind me was the shower that dominated the entire right side of the bathroom, a giant handicap shower that they put in the house when they moved to San Diego. I glanced back down at the cup dispenser and slid a cup out. It came out with a short whoosh into my hand as always, and I looked at it, turning it around and smelling it and crumpling and uncrumpling it as I stared into the mirror, watching my jet-lagged self, waiting for something to happen.

My father was born the second of five children, with one older sister, two younger sisters, and one younger brother. The two littler sisters, Heather and Holly, were both born with arthrogryposis, an extremely rare type of spinal muscular disorder that appears at birth. The disorder involves the gradual deterioration of the voluntary muscles in the body. When Heather was born in March of 1960, it was very rare for a baby to be born with the disorder. When Holly was born a year and a half later with the same problem, it was shocking. As far as my family knows, two with the same disorder in one family had never happened in recorded medical history.

Heather was born with a double curvature of the spine as well as with arthrogryposis. The shortening of the tendons in her joints caused her baby hands to be clenched into tiny, unmoving fists, and her feet to be “rocker-bottoms” with no heels. My great-grandmother was a nurse and would stuff little bundles of fabric into Heather’s clenched fists. The bundles went slowly up in size until Heather could use her hands, but they were never completely straightened out. She was attached to a stretcher for six weeks when she was eleven years old, with screws in and a halo around her head. There were also metal rods through her femur that were attached to ropes and weights. Another rope was attached to the bottom of the board she laid on, to flip her tiny body occasionally so that she could continue to stretch. Her breathing capacity was only about 38% of a regular human being’s, and when she slept at night, she slept with oxygen. She grew to be four feet six inches tall, with a curved back and crooked fingers. Heather could never come visit me at home in Orem because of the high elevation. Earlier in life, she had gone to BYU, but couldn’t visit Provo later in life when her breathing capacity had diminished. My family would go back to Nashua, New Hampshire, to see her, Holly, and my grandparents, along with other assorted relatives, as often as we could afford.

I would dress up in my aunt's tiny clothes at seven and eight years old and have a grand old time. All the nieces and nephews would play office in Heather and Holly’s papers, and ride on the special chair that went up and down the stairs so Heather could get from floor to floor. Heather and Holly played cards with us, told stories to us, watched movies with us, and adored us beyond all loving capacity.
After Holly died when I was very young, Heather and my Poppy and Grammy moved to San Diego, along with my cousins who lived just around the block from them in Nashua. They moved in just around the new San Diegan block, and we got to visit more because they were all closer. Visiting them there was my favorite vacation each year.
Heather was my favorite person in the world, the only grownup who really understood and actually listened when I spoke. We would go shopping for hours and hours in big California malls, Heather on her scooter with me walking happily beside her. She would always slip me twenties and fifties whenever my grandparents weren’t looking, and I’d have to spend them while we were shopping so my parents didn’t know either. We sat and talked for entire days about all the twelve-year-old love problems I was having. She never failed to be completely interested in everything my parents were sick of hearing from me. When I wasn’t in California, we e-mailed and talked on the phone regularly.

Every time we went out in public, people stared. When Heather was little, a child saw her and said “Look, Mommy, it’s E.T.!” It didn’t seem to bother her when she was older, when we were out to eat or shopping. If people stared, which they always did, she didn’t mind. Sometimes she just stared right back. They especially stared when Heather (at four feet six inches) needed assistance walking, and would hold onto my six foot, ten inch dad’s hand. I loved to see them walking down the street together.
Heather was smart, a little sassy, and more opinionated than the rest of our very stubborn family put together. Whatever she said went, on any subject and in any circumstance. She knew everything about everyone in our family, every grade we got, and about everyone any of her nieces and nephews ever dated.

In November of 2006, Heather began to have problems getting enough oxygen. My aunt Beth started to sleep on Heather’s floor, getting up periodically throughout the night to make sure she was still breathing. One night, Beth woke up, and Heather wasn’t breathing. She died quietly at the hospital.
The funeral was quick and not very painful. It had to be arranged quickly so that it wouldn’t become a big, organizational mess with scheduling. We had the gathering at the church, trucked back to my grandparents’ house, and ate. A lot. There was enough food in that house to last the thirty or forty of us a month. All of Heather’s nieces and nephews sat and giggled ourselves silly, stuffing our faces and trying to think about other things.

About nine months later, in August 2007, my family returned to San Diego for our yearly visit. I was so excited. This was my favorite vacation. The best vacation. I’d had a hard summer and was so relieved to be going to my safe haven to rest!
I got to my grandparents’ house, hugged them hard at the door, and ran inside. I dropped my bag in Heather’s study and ran into her bedroom.
The walls had been painted, the oxygen tank was gone, and the single bed was replaced with a queen. The closet was empty, the drawers were bare, and the smell of pill capsules and Cetaphil was gone.
I ran into the bathroom. There was the rectangular cup dispenser. The little, plastic, forest green kind that hold those baby cups you can use for mouthwash, or to rinse after you brush your teeth.
I stood there in that bathroom, in her bathroom, holding that paper cup, and I cried.

Today is her 50th birthday. Us girls miss and love you, Heath. Happy Birthday.