by Virginia Esslinger
Virginia and Mary Jo at The Inter-Agency Picnic.
Back in 1970, I was teaching pediatric nursing at the nursing school at St. Michael’s Hospital in Grand Forks and I took my students on a field trip to the institution in Grafton. None of us was prepared for the devastating experience we had there. After what I saw at the institution, I welcomed the 1980 lawsuit The Arc filed against the state of North Dakota for the appalling way the residents of that institution were treated. Little did I know that in a few years I would have a child with an intellectual disability.
I had a career I loved as a nurse, I had a husband and four great kids, ages 18, 16, 13 and 11. And then it happened! We were surprised to learn that I was pregnant with number 5. It was a shock to our whole family. My 16 year old’s comment was, “Well Mom, better you than me,” to which I replied, “You got that right”.
Because of my age, we knew that the risk of the baby having Down syndrome was higher. I wanted to know if the baby had it so we could get prepared. The kids wanted to know, but my husband said it didn’t matter to him; we would care for and love the child regardless of what he/she had, if anything. But the kids and I prevailed and testing was done.
The test revealed that our baby girl did, indeed, have Down syndrome. The first few weeks after the diagnosis were quite devastating for me. It felt like I was living a nightmare and a black cloud was hanging over me. My 11 year old was crying one night and when I asked her what was wrong, she said, “What am I going to do when the kids tease me about having a r——-d in the family?” So we went into action.
The first thing we did was ban the word r——d from our vocabulary. We forbid it to be used anywhere around us. This was in 1984! Long before the R word movement that is now prevalent.
I knew someone who had been involved in The Arc, Upper Valley, although I didn’t know much about the organization. So I called the office and asked if they had any information about Down syndrome. They sent me a book about Down syndrome which was pretty positive, thank goodness, because back in the 80s there was a lot of negative information about people with intellectual disabilities. Most evenings our family had dinner together and the conversation around the table often was about Down syndrome. We looked at pictures of children with Down syndrome and we developed the one-minute response that the kids could use to explain Down syndrome to their friends.
By the time Mary Jo was born, everybody was ready. My 16 year-old had band practice the morning she was born. When she announced that her baby sister had been born that morning, the band played “Happy Birthday” for her. The kids’ friends brought gifts for the baby and clamored to see her. When Mary Jo was a couple weeks old I brought her to the 11 year-old’s school and let her take her to her classroom to show all of her classmates. They were thrilled. And my husband formed a special bond with that little girl that was evident until he passed away. Now that he is gone and the four older kids are living in other parts of the state and country, she is my partner and pal and keeps me busy.
Although Mary Jo’s Down syndrome brought with it a number of medical and physical challenges (she has had 4 open heart surgeries and 8 other surgeries plus numerous other procedures, hospitalizations, etc.) she is vibrant, busy, active, curious, sometimes lovable, sometimes not as lovable, but always a fierce self advocate and is actually proud of having Down syndrome
When Mary Jo was about 4 months old, I received a call from The Arc asking if I would serve on a committee. I agreed. I don’t recall what committee it was, but it was the beginning of a long association with The Arc.
Over the years I have served on committees, served on the board of directors for many years, and served in just about every office on the board including president. I also served as president of the Arc of North Dakota for several years. I have testified at the legislature in Bismarck, once bringing Mary Jo along to attend a dinner with some legislators when we were trying to get the Workers with Disabilities legislation passed.
I tell everyone that we need to constantly support organizations like the local, state and national chapters of The Arc and other organizations that advocate for people with various intellectual disabilities. Because of their efforts, life for people with intellectual disabilities is profoundly better than it was before 1980.
However, as we have seen recently there are always challenges to the benefits and services that are provided to support people with disabilities, usually in the name of state or national budget problems. They try to solve them by decreasing benefits and supports for the most vulnerable in our population.
So to The Arc, Upper Valley I say “Keep on keeping on. We need you.”