A Father's Story
Steve Price says he's learned the essentials of loving and caring from his daughter, Monica. Compassion and a better understanding of both physical and mental limitations are also a classroom experience that his little girl has brought him. He's passing that along.
The Prices have a website, family-friendly-fun, that provides resources for other special needs families. It's a library of information that includes thousands of links as well as a newsletter, e-group forum, chat room and bulletin board.
The idea for the site came about because of the lack of information available when his baby was born.
"When Monica was born in 1987 there was only one piece of paper that the hospital could provide to us to tell us about the defect that she has and what the prognosis is," he says.
"Monica was a day old and the hospital said that life-threatening brain surgery within the next day was the only chance to save her life," Steve explains.
"A few years later, when I became aware of the Internet, I thought that I would gather as much information as I could and put it on a website so other families faced with a similar situation would have more resources than we had."
Today, Monica is legally blind with cerebral palsy, severe mental retardation, deformity of the right hand and skull and stunted growth. Despite these significant disabilities, she continues to learn and grow. Her dad says she especially enjoys anything involving music or lights.
"Monica learned to hug at age four, and has been an avid hugger ever since," he says. "When I get out of bed in the morning we hug for at least five minutes, and then again before she goes to bed at night."
Steve says that he and his wife, Louise, have learned to deal with Monica's special needs very well and work as a team.
"I get Monica dressed in the morning, Louise feeds her breakfast, then I get her on the bus. We have a nurse at home during the workweek that gets her off the school bus, feeds her dinner, washes her and prepares her for bed. On the weekends, Louise and I take turns taking care of Monica. Usually showers and getting her dressed are my job because she is about 100 pounds and Louise can't maneuver her well anymore," says Steve.
"We sometimes feel limited in what we can do as a family because of her physical limitations and the lack of respite care in our area. Finding caregivers for Monica after school and before we get home has probably been the most frustrating obstacle for us," he says.
"One of the hardest things to deal with is our inability to communicate well with Monica. She cannot talk and knows very limited sign language." Steve says he feels a "perpetually mildly aching heart" for the disabilities that Monica must live with.
"I cannot bear to think about how unfair it is for Monica to have to deal with all of her handicaps and not be able to live a normal life," he says, "it's too much sadness to deal with for very long. I deal with it by changing my thoughts to something else. My only long-term consolation is to hope that after we have died, I will meet her again in heaven and she will finally be made whole and we can know each other and have a normal father/daughter relationship."
Steve and Louise also feel strongly about the contribution that their daughter makes in the world.
"We have always wanted Monica to be a part of the community and for her peers to know her. So, Monica attends public school and spends some time each day in an integrated classroom. As Monica has been going through our local school system, the schools have been making structural modifications and human resource changes to accommodate handicapped and special educational needs. So we see Monica as "paving the way" for children with disabilities that will follow her in years to come."
He goes on, "Although Monica cannot communicate well with the other children, they have been so friendly and kind to her both in and outside of school. Sometimes when we are in a neighborhood store, a child from Monica's class will come up to say "hello" to Monica and also introduce their mom or day to her. The compassion that Monica's classmates show toward my daughter is so incredibly beautiful. Not only is it good for Monica to attend school with her peers, but her teachers and principles have all told us that their classes are also enriched by the experience."
Steve and Louise shoulder the load and deal with the sadness together, and share equally in the joy of new accomplishments.
"Just recently Monica was sitting at the kitchen table waiting to be fed when she reached across the table and pulled a writing pad and pen toward her, held the pen in her hand and tried to scroll on the pad," he says.
"We had never seen her do this before, so you can imagine the delight. Louise shouted for me to come to the kitchen so I could share in what Monica was doing. We are so proud of her and her accomplishments. She is always surprising us with what she is learning. We share a lot of unique things as a couple."
The Prices are giving back by using what they've learned to help others who face similar challenges. They are yet one more example of what it means to turn stumbling blocks into stepping stones, and their daughter is leading the way.
Written by Carolyn Murray
