I write these events down because I want to remember every detail. These events are part of my daughter's history. How she came to be in my life. Even though I will never know what her dreams may be , I want her to know that she was a part of my dreams every step of the way. - Elisabeth's Mom
When I was 10, I remembered seeing a young man with a long pony tail, contorted face, and a slim stiff body just barely fitting into a wheelchair waiting in line next to me at an amusement park. It appeared to me he was saying something with an "f" in it while people kept cutting in front of him. I could see what was happening because I was at his wheel chair height.
"I think this guy is in line," I said quietly wondering if I was only guessing or if he was having a medical problem. "Are you okay?" I asked him directly. He flailed even harder. How could all these people in line be wrong and an 10 year old be right, I asked myself after he rolled out of sight.
At the department store I was working while in college, I shared an elevator with a distinguished elderly couple who was pushing their daughter in wheelchair. The daughter looked to be my age. She was wearing pearls, a cashmere cardigan, kilt, and her silky blonde bangs were held in place perfectly with a barrette in sharp contrast to my unkempt permed hair, faded jeans, and plaid-patch-worked shirt.
I asked the young woman, "Is it hard getting dressed in the wheelchair?" realizing afterward how stupid this sounded. Her parents responded with an encouraging smile giving me the green light to enter into their daughter's space on my own without their help.
I saw her several times afterward each Friday around lunch time. I brought with me a cosmetic counter sample to give to her. The last time I saw her, she was wearing a pair of jeans, permed hair, and plaid- patchwork shirt, and I was wearing cashmere and pearls.
My husband and I bought our first home next to a group home. There were 4 men under the care of health care workers coming and going. They spent most of the time on their deck in back where I could see them sitting, rocking, or pacing, from my kitchen windows. I never put curtains on these windows. My husband built a playhouse for my first born in one of the many trees we shared with our group home neighbors and my daughter soon became friends with them.
At work during a program I was assisting in, I asked a little girl in a wheelchair with tubes running everywhere, if I could take her hand so she could feel the roughness of the limestone and trace the bump of fossilized sea creature from 600,000 million years ago. Somebody in her group said, "she doesn't understand what you're saying" but I took her hand anyway. I saw her eyes tracking my movement.
I remember having the "what if" feeling while my daughter grew inside my body. She wasn't kicking or moving like my first baby. I remember in a quiet moment of prayer and meditation, blurting out "okay, if its going to happen, let it happen," and afterward choosing the name Elisabeth because she was trying to send me a message.
Within the pantheon of Catholic Saints, I picked St. Elisabeth's name because she had connections. She would watch over my child because everyone else up there appeared to be busy watching over other children. The children in Africa, the children in China, the children in America.
When we found out 4 months into the pregnancy that a peanut-size cyst was developing in part of the brain and it would have to be monitored, I asked God for strength and guidance. When the doctors at 6 months saw dilated ventricles, a loosely wrapped bundles of nerves, I started telling my family about the news. Most of them were saying I was being pessimistic and that she would be "okay" but I wasn't asking for their opinion. I was just relaying the information.
Whatever those triggers are that prepare a baby to come out never happened. She was born blue, long fingernails, no reflex. Not even sucking. By the time she was three month, it was confirmed. She was missing her corpus callosum and the folds in her brain were not normal. She was legally blind. She would be severely "mentally retarded."
I joined a parent nurturing infant group to learn the tricks of the trade. I already knew how environment, learning, and human development worked together so it was a cakewalk here. Resonance boards, light shows, beads, massage, patterning, brushing, and toys. She didn't sleep for 3 years. She took naps on and off. Finally, a retired pediatrician who recognized the effects of sleep deprivation on me suggested I get hydro-chloride to help her develop a sleep pattern. It worked. By the time she was 4, she was sleeping through the night on her own. Just in time for her little sister's arrival into the world.
When she was 18 months, I switched daycare because the one I had chosen could not handle her anymore even though they were on the "list." I found a daycare that offered outpatient services so she could receive PT, OT, and Speech on site. So instead of driving around throughout the day, going back and forth to work, I drove one and half hours twice a day. Life was getting easy.
I found 3 strong advocates who helped me identify her strengths and abilities and develop an early education plan for her before I met with anyone at the school. When she was school age ready, I visited classrooms and talked with teachers to see how they could develop her strengths and abilities. I found the perfect school where she would be valued for her strengths and abilities by her peers and teachers. In all honesty, I have not been able to define exactly what her disability is. That I imagine will be determined by others.
I write these events down because I want to remember every detail. These events are part of my daughter's history. How she came to be in my life. Even though I will never know what her dreams may be, I want her to know that she was a part of my dreams every step of the way.
She was wanted and she would be welcomed in our world like all our children should be.