Wheels to Support Gay's Independence

My husband, Steve, and I are raising money for a van to meet Gay’s daily living needs and to continue providing her with the least restrictive living environment past the 50 years of life she will celebrate in January, 2016.

As many of you know and some of you do not know, 49 years ago Gay was born with cerebral palsy and development disabilities.  However, even if you’ve been a part of our lives for years now, I am not sure you’ve heard our family’s story from my point of view as Gay’s sister.   Over the last 15 years I have become more involved in understanding Gay’s needs and how to navigate local, state and federal systems to advocate for her health and well-being.  Through these conversations and planning with my parents, I have a much keener understanding of all that they have accomplished and the significant ways in which they have devoted their lives to giving Gay and me every chance to be independent and successful people.

If you think about it from the beginning of our story, my parents were two young people (early 20s) when Gay was born in 1966.  At the time, they knew that the Gay’s birth was difficult but it would take several years before they would fully understand the nature and extent of Gay’s physical and mental challenges. In addition, it took over 18 years and a deep commitment to advocating for other children and young adults with developmental and physical disabilities before they would meet a lawyer that decided to investigate Gay’s birth. Today, we often see ads urging people to seek legal defense for developmental and physical damage that may have occurred in the birthing process but that was not the case in 1966.

What that lawyer discovered was that my Mom’s doctor was significantly ill with cancer at the time he performed Gay’s birth and he passed away several months later. Because he was ill the night of the birth, and late in arriving to the hospital, the hospital staff delayed the birth process by giving my Mom significant amounts of medication. Essentially, during the delay, my sister lost oxygen to the brain causing significant neurological damage. Unfortunately, because of the statute of limitations, our case could not be pursued legally or financially.

I actually remember when we learned all of this information.  I was in high school at the time. However, it’s only recently, as I learn to navigate all the systems that touch Gay’s and my parents’ lives, that I realized the significant impact of not being able to pursue some sort of financial retribution for all the things Gay would need as the result of her physical and development challenges.

What I also remember is that my parents found creative ways to give us the fullest life possible with comfortable but limited means.  Gay and I were raised long before the Federal Disabilities act came into existence in 1991. Therefore, travelling was difficult because of inadequate facilities (i.e. bathrooms, seating, space in general). In fact, even going other people’s houses proved to be difficult because generally people don’t put bars in their bathrooms and wider doors in their houses. Also, if any of you know Gay, you know that she doesn’t sleep well in strange places and even the tiny light on a DVD player or Video recorder would keep her awake all night! These realities meant that my parents had to find creative ways to keep our family socially active and engaged.

I am sure many of you would remember the number of Labor day barbecues, garbage can dinners, pool parties, hay rides, and holiday dinners where my parents went all out as gracious hosts. Outside of some holiday trips to see Uncle Dick, Aunt Karen, Kim and Rick, we didn’t’ go on family vacations (until we went to Disney when I was in 8th grade and a trip to Florida when I was in college). So those parties and gatherings meant a lot to Gay and me while we were growing up.

Our family’s other social gatherings often consisted of dances/events at the Monroe school for special education students, Canoe-a-thons and other fundraisers for the Association of Retarded Citizens and lots of time at church.  We attended all of these around my Dad’s 6-7 day weeks of midnight shifts at GM, my Mom’s gardening, canning, sewing and tending to our small farm, lots of doctors visits to the University Michigan Hospital, multiple surgeries for Gay and the volunteer work my Mom did to help monitor group homes in Monroe County. 

Most of you do know that my parents have devoted their lives to caring for Gay and advocating for her needs. Because of their efforts, anyone who meets Gay comments on what a wonderful person she is and how much they enjoy being around her. 

Over the years, our parents have also purchased many items for Gay not covered by various state and federal services, all with the goal of helping her lead an independent and active life.  They have accomplished this on one income because Gay required full-time care. The purchases have included wheelchairs, outdoor electric vehicles, braces, dental care, and the current accessible van that  state and federally funded services staff use to support Gay’s independence. Staff and my parents use this van for Gay to get her groceries, attend volunteer shredding work at the church, attend church services on Sunday, run other errands, and take Gay on outings such as going to community events and the Dairy Queen. In their retirement, my parents continue to care for Gay quite frequently in their home and purchase items she couldn't afford for her life and apartment.

The current van (purchased by my parents) is also used by my parents to take Gay to doctor's appointments (as far as 8 hours to Ann Arbor and the University of Michigan Hospitals where Gay has received care since she was 18 months old, and places like Escanaba, & Green Bay).  The current van has been well used and is nearing the point of not being reliable and safe. My parents use duck tape to keep things from rattling and it has no AC in the summer. They have spent thousands of dollars keeping that van going for 15 years.

You may wonder why Steve and I are unable to provide the funding for this van. We are investing in building a home where Gay can maintain living in the least restrictive environment of her own small apartment, but will also be in our home as she ages and needs additional care.  The group home environment, with all the noise and distractions, would not be good for Gay’s health and wellness. If you can’t sleep with the DVD light on, imagine trying to sleep in environment filled with many other people. In addition, for financial reasons and because I've been pursuing my education, this will be the first home I have ever owned. This will also be the first home Steve and I have purchased together. We simply can’t afford a $45,000 van AND a home that will accommodate our family’s needs as we approach our own retirement.

You may also wonder about other money that’s available to Gay, however, no state or federal funding exists to support accessible vans for families or individuals in situations like ours.

The vehicle we want to purchase is large enough for 4 people plus Gay and allows Gay to sit in the middle of the front and back seats. It also has an electric ramp and appropriate belts and safety equipment. This vehicle would ease our aging parents' ability to travel with Gay and would allow our whole family to travel together. This link http://www.ride-away.com/wheelchair-van/?vin=2C4RDGBG0FR643199-new-2015-dodge-grand-caravan-se-plus-braunability-companion-side-manual-passenger-side-entry-handicap-van-for-sale-essex-junction-vt shows an example of this type of van.  For a recent trip to Ann Arbor, my parents rented one of these vans for $800 and when they put Gay inside, she cried with happiness. Wouldn’t it be great if Gay could have a van of her own?  You can’t imagine what it would mean to her.

Our hope is to buy a new van so that it will last longer than the used van my parents have kept running for the last 15 years. We are most grateful for any donation (no matter how large or small) that helps us purchase this important piece of equipment for our family.  If you are unable to donate at this time because of your own family’s priorities, we understand, and hope you will still share our link GoFundMe.com/waldvogelvan with others who might be able to donate.  All funds will go directly to my parents, Claire and Beth Waldvogel, so that they can purchase the van on Gay’s behalf. Our family will continue to cover the costs of Gay's car insurance and gas etc. 

Thank you for allowing us to tell our story and taking the time to listen. Please help us improve travelling conditions and continue supporting an independent and active life for a truly special sister!

Amy and Steve Martin