Crazy to Most, Normal to Us

By Emily Ann Hupe

When I walked into the hospital for my scheduled c-section on November 17, 2004, I had no idea that those would be the last steps that I would ever take, as an able bodied mom. A rare complication during my procedure, caused a bruise on my spinal cord at T 11-12. I had no feeling from the hips down on my right side, some feeling on the left and no bowel or bladder control. I was now a full-time wheelchair user. Waiting at home for me, were my 6 other children ages: 11, 9, 7, 5, 4 and 2. I had no idea that cold November morning, as I stared down at the perfect face of my youngest child that the next 12 years would nearly destroy our beautiful little family.

I would have over 10 surgeries numerous complications and procedures over the next 12 years. The first 2 years, I lived in constant and excruciating pain. There were countless doctor appointments and procedures. I was in a constant state of "preparing for" or "healing from" something. During this time, I was desperately trying to "mom" from what I came to refer to as "the worst seat in the house". Life for me was measured in hours between pain medication and how many good days that I had in between surgeries or complications. We have home schooled all of our children, so that further complicated my situation. We spent most days in my room and bed, during those first 2 years.

Dinner time!

Slowly we settled into a new normal. My husband is self employed so he was home most days. He would get up at 4:00 AM, work until 8:00 AM in his office and then help get the kids and me up for the day. He would then be Mr. Mom for the day and return to his office after dinner until the bedtime routines began. Often times, he would work late into the night as well. We did not have family close by and we lived 45 minutes from most of our friends in town. People pitched in, at times, and were amazing. However, the reality was that everyone was busy with their own lives and we were on our own most of the time.

The Impossible Dream Becomes a Reality

Deborah, at the helm of The Impossible Dream

Over two years ago, we featured mobileWOMAN Deborah Mellen, an avid sailor & a philanthropist who is now sailing the world and educating others about the possibilities for people with disabilities.

Deborah’s story began tragically as many do, when she became paralyzed in her mid-thirties, in Tuscany Italy. Originally from New York, Deborah and her Italian photographer husband, moved to his hometown in Tuscany to experience adventure and hopefully raise their future children there. Unfortunately, this dream was shattered due to a motor vehicle accident. 

Needless to say it was a long journey to recovery for Deborah, requiring many surgeries, support and emotional strength. One activity she found therapeutic and life-saving was being on the water.

“Most of my rehabilitation was done in Miami, Florida and it was there that my surgeon put me in touch with Shake-a-Leg, an organization devoted to bringing the experience of sailing to people of all abilities. I fell in love with the beauty of sailing, the wind, the water, the silence and peace. Water was an element that offered me the physical freedom that I no longer found elsewhere.”

 

Deborah & her dog, Winter enjoying peace & tranquility

The Universal Design Toolkit and the Universal Design Living Laboratory

By Rosemarie Rossetti, Ph.D.

Rosemarie with her husband, Mark (& kitty!) at home

My Story

On June 13, 1998, my husband Mark Leder and I went for a bicycle ride on a rural wooded bike trail in Granville, OH. After riding for a few minutes, Mark thought he heard a gunshot and slowed down to investigate.  As he scanned the scene he saw a large tree falling. He shouted, “Stop!” But the warning was too late. Instantly, I was crushed by a 7,000 pound tree and paralyzed from the waist down.

Coming home from the hospital in a wheelchair in July 1998 after my T12-L1, spinal cord injury, I realized how my home intensified my disability.  My husband and I knew that we had to sell our home and find something more suitable.

Designing and Building the Universal Design Living Laboratory

My husband is 6'4" tall while I am 4'1" seated in my wheelchair.  Our heights and reaches were factors in the home design so that we were both accommodated.

In September of 2004 we hired architect, Patrick Manley to draw the house plans for our new home.  In January 2005 we hired kitchen and bath designer and internationally renowned universal design specialist Mary Jo Peterson.

We hired Robert August in October 2005 to help us with branding, marketing, and contacting international and national corporations to partner with us by contributing products and services.

Mark and I bought an acre and a half lot in December of 2006. We broke ground on September 23, 2009. In addition to being accessible, universal design and green building construction principles were followed.  We received the highest levels of certification from three universal design national certification programs.

We acquired 214 contributors and had hundreds of people volunteer to help us.  Our home could not have been built without their support. Mark and I have personally funded the Universal Design Living Laboratory and served as the general contractors.
 

On May 18, 2012 we moved into our new home.