Johanna Benthal working at the North Fork North Fork Doughnut Company in Mattituck. Courtesy photo.

Today – July 4, 2021 – we celebrate Independence Day, a celebration officially declared a federal holiday in the United States in 1941. But the tradition of celebrating independence dates back to the ratification of the Declaration of Independence on July 4th, 1776.

Memorial services, fireworks, parades and picnics — all done up in red, white and blue — remind us to be grateful for the freedoms we enjoy in the United States of America. Most every American can appreciate our freedoms even more since the experiences of the past year in this pandemic. Closures of schools, churches and businesses, shortages of items like toilet paper and cleaning supplies should remind us that we are blessed to live in a country which can recover from the devastating losses of the past year and be grateful for all our blessings.

This past week I was reflecting on what independence means to me, to others and especially to people like my 24-year-old daughter who has disabilities.

When I turned 24, I was a college graduate, married for two years and the mother of a newborn. It was a life that I had dreamed of for many years and was able to make it happen with the support of my parents, my own ingenuity and a lot of prayer.

As we were raising our four children, I wondered what kind of adults they would become and whether or not the influence of our examples, guidance and faith would help or hinder them in the choices they made as adults.

Despite the trials we’ve endured, I think my kids have turned out to be very independent, well-rounded and compassionate human beings. They are successful in their own careers, some are married and they all love and respect others.

My youngest daughter is independent and successful too — though some in our society wouldn’t necessarily acknowledge her life as such by the appearances of her needs for support.

When Jo had her first brain surgery at three months old, I didn’t think about the future. I was just trying to get through each day and hoping she would live through the surgeries ahead. It was at her six-month pediatrician appointment that the first questions regarding “independent milestones” were discussed. Jo had already had six surgeries in those first six months and the assaults on her brain were beginning to show in her inability to sit or roll over independently.

The doctors recommended early intervention therapies to help Jo progress towards independence in physical stability, eye-hand coordination and speech and language. Those therapists became an integral part of our family life as they supported us all on the journey towards Jo’s growth to independence.

Jo sat in a baby sling in my arms or in someone else’s arms for the first two years of her life. She struggled to sit up unassisted and couldn’t coordinate movements to do more than drag her legs across the floor. We all moved her with us from place to place and kept in the center of whatever was happening. With a family of six, there was always something interesting happening to engage Jo’s senses and help her learn.

Finally at two and a half, she took her first steps. She never really ran, but a little skip was enough to keep up with her siblings as they included her in play. Those first 10 years were difficult ones with a lot of surgeries and hospitalizations, and some scary life-and-death situations.

I remember the first time I asked about getting Jo a walker. The physical therapist thought it was a good idea, but her neuro doctor did not. He was concerned that it would create a dependency on a device rather than force Jo to walk better.

This was the first time I confronted different opinions on what it means to be independent.

I stopped asking about a walker and felt guilty for suggesting it. We pushed to try and help her walk independently. To some, it appeared that she was walking independently. But in reality, she needed to hold onto someone else or a wall or furniture to steady herself from falling.

Within a few years, I began to develop pain in my neck and shoulders because my arms were always extended at weird angles, holding out my arms and hands to stabilize Jo.

That doctor was right; Jo didn’t need a walker because she had me.

Many brain bleeds and surgeries later, my daughter’s balance declined even more and we were seeking the help of professionals who were more concerned with her safety and stability as she walked than looking independent to others.

We moved and have been renovating our new home little by little to be more accessible for my daughter who now uses a walker at all times in the home and a wheelchair/stroller when we are out in public.

Recently I was invited to join a New York state committee to advocate for the needs of children and adults with disabilities. The group has only had a few meetings so far, but I’m excited to be a part of something that can help educate and inform our elected officials on the needs of people with disabilities and the challenges they and their loved ones face, so as to improve and develop programs to meet those needs.

In listening to the stories of families and other advocates, it’s become even more apparent to me that people without disabilities or those who lack experience caring for someone who with disabilities, struggle with understanding what independence means for people with special needs.

Last week, I was talking to a dear friend, the mother of a young adult with disabilities. She reached out to me a few years ago after reading this column to see if we could get together to talk. Years later — and many conversations over coffee and the phone later — the two of us and our daughters are close friends.

Serious health issues have caused a decline in my friend’s daughter’s abilities and increased the care she requires. Last week, we were talking about how our daughters’ needs have changed throughout the years and how we cope with those changing needs.

We were reflecting on how we measure what constitutes a good day and independence for our kids. Needs for walkers, wheelchairs, assistance with toileting and dressing and feeding change based on their changing medical conditions and stability.

Some days, independence means the ability to brush their own teeth or sit up unassisted on a couch without slouching over. Other days it means creating artwork, playing games and singing songs. Needs and abilities fluctuate and change over time.

But desire to live life on our own terms, to the best of our abilities, is innate in each individual. This desire forms the foundation of independence in individuals and in our society. The pursuit of life, liberty and happiness means different things to all of us and that is independence worthy of respect and celebration.

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Eileen is a writer, speaker and wellness coach with a bachelor’s degree in theology from Franciscan University. She and her husband Steve live in Jamesport and have four young adult children. Email Eileen