Sarah & Me:
An Update (Part 1)
What has life been like for a quad mom and her daughter over the past 11 years?
It has been more than 11 years since my last article appeared in PN. How fast the years have gone for my husband Bill and me, and how great the changes in our lives.
In my November 1996 article, Sarah was just over 2 years old—a darling baby girl who filled our quiet lives with much energy, love, and laughter. She is now a beautiful young lady, age 13, who still fills our hearts and home with an abundance of energy, love, and joy. In addition, there is plenty of homework, church activities, Girl Scouts, music, pets, and friends to keep us busy. Sometimes there is too much clutter, dust, and commotion, but life moves quickly. I’ve learned these precious years go by in a flash, and I don’t want to miss any of it.
We have been lucky to be in the same home all these years, and living in Southern California has made my life easier and more accessible year round. At the time of the previous article, I was access coordinator for the City of Whittier. It was a part-time job and worked well for the three of us.
Sarah Beth was a good baby and toddler, and my husband and I had her on a really good schedule. She napped in the afternoons while I worked, and she loved picking me up with Daddy at the end of the day. As she grew older, she came to my office on her own and greeted the entire staff. She spent lots of great time with her dad, so she felt safe and happy with me at work.
Wonderful young women from nearby colleges helped us at home. They all became part of the family. Many of them have since become wives and mothers themselves.
Catherine Comes Home
When Sarah was 2, I had a chance to obtain a service dog from Canine Companions for Independence (CCI) in Oceanside, Calif. My parents came out from Wyoming to stay with Sarah for two weeks while Bill and I left early each morning and came home in the evening with stories of
our classes and training sessions with the dogs. Although Sarah was excited to have a big, indoor dog, she was a little jealous because her small dog, Norman, was an outdoor dog.
Catherine, my CCI dog, was entering a new home with a new master, to whom she was taught to stay close. Catherine and Sarah liked to cling to my side, so we enjoyed watching the two of them work out their territory by pushing and shoving a little. Eventually Sarah decided to bite Catherine’s ear, which I caught quickly. No harm was done! It didn’t faze Catherine, but we decided Sarah would be better off if she stayed by my right side or rode on the back of my chair. With that cleared up, they got along beautifully and love each other to this day. On the other hand, Norman and Catherine got along perfectly from the start.
Having a service dog in our lives made some things easier for me when I was on my own, but Catherine is a big responsibility; she requires a lot of time, care, and continued training. Keep this in mind if you are considering adding animals to your family.
Learning to Share
Following is the story of how Sarah learned to share me with others. Once again, I had to balance my life with more responsibilities.
We believe consistent discipline has been very important, as Sarah must follow directions often and react quickly for safety reasons as well as for effective parenting on my part. Bill has always reinforced my directions with her and was great in making her follow through and listen to me without any attitude and in a timely fashion. This was extremely important for me, as all my teaching, instructions, and discipline was verbal. I couldn’t chase after her, and she has never walked away from me or tested my authority.
We believe in respectful discipline without demeaning children or embarrassing them in front of others. In addition, we’ve spent many years listening to friends and family talk about raising their children and watching them. We thought some methods of discipline were effective, so we used them when we had Sarah.
When service dog Catherine joined the family, Kelly found some tasks were easier when she was alone, but the animal also increased the level of responsibility.
We talked a lot about how we were raised and incorporated all the positive methods. And, we talked to my parents and other people who had nice children and asked their advice on a regular basis. We have a great relationship with Sarah even as she enters her teen years.
We raised Sarah with lots of different people around us from all walks of life, and she has been respectful to all of them. I think this helped her grow up to be more independent at an earlier age. Of course, some of that came from necessity, because when I was alone with her we would work out easy step-by-step ways to get things done. She learned to be responsible for picking up her toys and helping with simple chores and with the animals at an age-appropriate level but on a regular basis.
In the early years, Bill, Sarah, and I would make a game out of cleaning up or bath time. We all worked together with encouragement and fun. I believe teamwork is a great way to accomplish a lot in a little time, without one person feeling overwhelmed.
Bill and I began taking Sarah to community-sponsored activities when she was young so she could play with other children and learn to share. It has always been important to me to get to know her friends, leaders, teachers, coaches, and other parents so they would feel comfortable with me. As I got to know the kids in her classes, on softball teams, and in church, it became easier for us to be accepted as just another family.
Before I had Sarah, I always spoke with children and parents, answering their questions and trying to make them feel comfortable around wheelchairs. I have continued to visit her classes and meetings in extracurricular activities. I volunteer and give talks often. Sarah’s schoolmates and many people in our community know us well because they see us all around town at picnics, city-sponsored events, story time at the library, playing at parks, and enjoying summer concerts. The kids think it’s neat to ride on the back of my chair, watch me write with a pen in my mouth, and get to know my service dog and learn some of her commands.
Some of the best memories from Sarah’s childhood are from working with children in reading groups, helping with vocabulary and spelling tests, and reading lines with the kids for school plays. Most of them know me and enjoy speaking with me or coming over to our home. It is easier for Sarah because kids don’t ask her as many questions, and she is rarely put in awkward situations. She shares the enjoyment of my involvement with the site counsel at school, volunteer work at church and in the community, and being a mentor to others—with or without disabilities.
I have had to keep in mind, over the years, that Sarah is a child, even though she acts very mature. She still needs “kid time,” so I must make sure I have others to help me throughout the week. Her schoolwork and activities come first. On top of her regular chores, she can make a little money if she helps me with extra projects. However, she prefers earning it by tutoring and babysitting other children.
Years ago Sarah decided I was a productive mommy even though I couldn’t walk like the other moms. She doesn’t think of me as different, because I multi-task and do lots of things with her. She just knows we accomplish our tasks differently. Most of the time Bill runs errands, but on nice, slower days, Sarah and I load my chair with bags, dry cleaning, the dog, and her backpack and we roll to three or four places before or after dance class, school, or work. Sometimes Catherine, my service dog, helped while I carried Sarah and her scooter on my chair.
At the park or in the kitchen, my wheels, desk, and battery case were great steps for Sarah to climb up to counters or down from trees, monkey bars, or clotheslines. I always carried snacks and water so we were quite self-sufficient. Sometimes we would run out of steam or time and call Bill for a ride home or take public transportation. All this time with her was precious and could never be replaced.
Communication Builds Memories
We talked about our day, people we knew, and situations we encountered. I found it was a good time to teach her about nature, safety, songs, colors, numbers, family history, and stories. We developed a very close relationship, and as she became older we continued to spend lots of time with each other, talking about all kinds of things.
We learn a lot from each other and have opportunities to help one another. This makes us happy and gives Sarah confidence and the ability to grow and make good decisions. I know God put us together for a reason.
Sarah doesn’t always like that I have physical limitations, but we are honest about the situation and she can talk to me without either of us having hurt feelings. She still enjoys one-on-one time with her daddy, but she is also comfortable with others when we are not with her.
Sarah has made me a better person. My personal growth, wisdom, patience, faith, and understanding have increased daily. Working outside the home was great for me and a good example for Sarah. It taught her responsibility, independence, and that people with disabilities can be productive and successful. Since she was raised with a parent with a disability, she didn’t know any differently until she got a little older and saw children with two able-bodied parents. She asked me questions sometimes but was always content with my answers.
My perspective about raising children from a wheelchair is that it is very important to carefully balance my life. I keep a calendar with all our daily activities listed. From there, I prioritize my activities based on their importance and my energy level. As I age, my body doesn’t always keep up with my desired schedule! I have to stay down a little more these days because my skin tolerance is not as good as when I was younger, and I have lost most of my muscle mass.
Although my husband and Sarah are my first priorities, I have tried hard not to lose myself and the personal interests that keep me happy. I continue to visit friends, read, exercise my dog, and even go shopping and to the movies by myself. I ask for help when I need it. Throughout the years I have tried to have outside assistance with my personal hobbies, like journaling, genealogy, cooking, correspondence, scrap-booking, planning/preparing for the holidays, and many other extras. Sometimes I have had good adaptations set up with my mouth sticks, phone, door pulleys, and many homemade devices for drinking water and standing on a regular basis. Without ever owning my home, it has been difficult to maintain permanent solutions.
I appreciate my life, my husband, my friends, my siblings, and especially my parents, who raised me to be strong, confident, and to never give up.
in Part 2, Kelly talks about being flexible, taking better care of her body, quitting work, support systems, having children, parents as role models, and setting priorities.
In 1994, Kelly Hanson’s pregnancy test showed “positive.” She and her husband Bill were shocked, scared, skeptical—and thrilled. When Kelly was 17, she had broken her neck in an automobile accident. As a C3–4 quad, she knew her life would take a different course, but she never dreamed having a child would be part of her journey.
In “And Baby Makes 3” (April 1995), she took PN readers along for the roller-coaster ride of her pregnancy and the delivery and postpartum care of little Sarah Elizabeth. “Sarah…the First Two Years” (November 1996) described bringing up baby—a bright, active toddler who presented new challenges every day. The following article contains some insights and advice about parenting from the perspective of this quad mom.
Sarah & Me:
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