My husband Tony and I were married about three years when we found out we were going to have our second child. Tony Jr. w as named after his father and we hoped to the end of the pregnancy that we would have a baby girl. This was before the age of sonograms.
Angela Joy was born on July 19, 1971 and we couldn’t have been happier. Unfortunately, four days later we found out that our beautiful baby girl had contracted bacterial spinal meningitis. She might not live through the night.
Angela survived and we spent the next three weeks in the isolation unit at Children’s Hospital. We wore sterile gowns and could only touch our baby girl through openings in her tiny isolate.
Even though she lived, Angela endured several medical issues. At seven months of age, she was diagnosed with hydrocephalus and needed brain surgery. This involved inserting a shunt to remove the fluid from her brain and draining it into her stomach.
Although delayed in her development, we found out at three years old that Angela was deaf. She was evaluated and attended St. Mary's School for the Deaf. Angela was fitted for hearing aids. She liked them so much that one day we found them buried in the backyard.
When Angela was young, she had little fear of water or heights. Several times I had to pull her out of the water . I also followed her down slides and near cliffs when we would go to playgrounds or camping. I wonder how we survived.
Angela walked, ran, and wanted to play with the other kids in the neighborhood. That's when my real problems began. I could not see where she went, and she could not hear me call. One of her favorite places was my neighbor’s garage where three baby kittens were born. I believe I earned every gray hair that I color.
Tony and I did everything we could do to give Angela as normal a life as possible. Her father taught her how to ride a bike. I wanted to protect my daughter but she needed to experience life. Eventually she mastered the skill of swimming. She was able to hold her breath and stand on her hands underwater. She finally developed a rational fear of heights, so we no longer had to be afraid of her taking dangerous chances.
As a teenager, although she could not hear music, Angela loved to dance. Her favorite was the Bird Dance. She went to several proms and stood up in three weddings. She was on a bowling league for several years until her physical condition started to deteriorate when she was in her late twenties and early thirties.
As Angela aged, her illnesses took a toll. She had difficulty walking and later became a wheelchair user. Her functioning abilities decreased. She is now a quadriplegic living in an ASPIRE Group Home.
When they say that life holds no guarantees, they are not kidding. As my vision deteriorates, I call Angela each day at her group home. She expresses herself to a mother who cannot see her, and I speak to a daughter who can’t hear me.
Nevertheless, God has given me the strength to persevere. Life goes on. And now Angela and I both color our hair.
My next story will be about adaptive equipment for the blind/visually impaired.
The Erie Cattaraugus Rail Trail (ECRT) has opened registration for the 2024 EA2EVL Fondo. Over the last three years this ride has raised $150,000 to continue to open, build, improve and maintain the 27-mile ECRT Trail that runs from Orchard Park to Ashford, NY. The trail association is making so much progress because of YOUR SUPPORT!
#1 - Date: This year, the 42-mile charity bike ride will be held on Saturday, October 5th.
#2 - Same Route: How could you forget! The fondo—or non-competitive bike ride—starts at 42 North Brewing in East Aurora and goes down Route 240, heading west on Rt 242 into Ellicottville.
#3 - Party On: EA2EVL ends with a celebration—music, food, drinks—at the Holiday Valley Resort.
#4 - Fundraising Awards: Your registration gets you into the event, access to our course and rest stop amenities. We’re asking each rider to fundraise for the ECRT Trail: A $100 donation earns you an event t-shirt and tickets for food/drink at the party.If you raise $500 or more, you get an EA2EVL event jersey, plus all of the above. Our top fundraiser gets all of the above PLUS gets to wear the yellow jersey and a $500 gift certificate from Tom's Pro Bike!!
#5 - Register Today: Sign up today, raise some money for ECRT, and enjoy the party and a great fall ride!