Paul, Virginia’s 16-year-old son, lay in his white satin-lined coffin, dead from complications of Hunter’s disease.
Though Virginia suffered life’s most devastating blow, she clasped my hands in both of hers and introduced me to family members. I was in awe of her self-control.
For years, tending to Paul filled Virginia’s life and, for the last few months, she struggled to add days, then hours to her son’s existence.
Bonds grow differently between a child with special needs and the family. As some of these children age, their dependence increases, not lessens, and the family reaches down inside itself and widens the space to accommodate all the needs of that child. In addition to deep love, the space contains doctor visits, rituals of medicines, therapies and oftentimes life-or-death emergencies. And now, for Virginia, that space was a void.
She is a gentle woman who epitomizes the refined lady of the south, and Virginia was to mourn for her son in her own way, in her own time for years to come. I never saw her cry. Paul’s picture is placed at the kitchen sink where the vision falls while doing dishes; another is on her dresser and a large portrait is in the living room.
A widow for many years, what was she going to with her life after he was gone? I wondered.
It wasn’t long before I found out.
We met years before when a small group of parents of a variety of special-needs children banded together for support. The group needed what every new group needs – public recognition, money to sponsor activities and a way to encourage new members to join. Within our tiny group, a parent with superb public relations skills became our president, a parent with writing skills wrote a monthly newsletter but raising funds was a problem.
Virginia has more than the genteel nature of a lady – she has the heart of an entrepreneur with viable ideas for fundraisers, not only for the group but also for herself. She facilitated fundraisers for the group and she began a service so new that the state licensing people scrambled for the proper and appropriate licensure. That’s what led to her starting a respite service and a group home with a foster parent license.
The procedure grew long and worrisome but within time the Paul Drew Respite Care Center and Group Home became a reality with referrals from the state and parents of our group. From experience, Virginia knew parents needed affordable time away from their chronically ill children. For $1 an hour she encouraged them to get 24 hours of respite – the minimum time necessary to get a break, she says in her soft Southern drawl.
With her respite care center, the first home she rented was the home of a family that transferred to another city. The husband, an inexperienced landlord, somehow believed Virginia would bear the structural and functional expenses normally carried by the landlord.
The next home she rented was settled in long enough to have an official ceremony dedicating her service to her deceased son but it wasn’t long before the landlord indirectly made known his objections. A case of NIMBY (Not in My backyard).
Virginia faced another move – the third in less than two years. She relocated to a historical home in Gainesville, Florida where her business thrived.
I’ve helped when she needs to get out and again I was in awe of this woman. The amount of care Virginia provides these children is, no exaggerating, staggering. Each day she, and visiting nurses, cared for between four and seven totally dependent people age 3 to 88; sorting laundry by its sanitation level, blending food for those who cannot chew, getting fluids to ward off urinary tract infections into those who cannot swallow; lifting into wheelchairs those who can sit and frequently turning others who cannot; changing diapers, giving medications – the list is as endless as it is exhausting. She never loses sight that these are people first and disabilities second.
There is Simon who gazes into my eyes with an intensity I haven’t seen since my children were infants, and who smiles broadly when his gaze is returned or he’s talked to. She cares for Paula, a cerebral palsy patient who has learned to communicate via a computer board on the front of her motorized wheelchair. There is tiny Jason who accidentally suffocated as an infant and is fed through a tube. The list goes on like Santa’s good boy and girl list, and 48 names appear on the plaque of the Paul Drew Respite Care Center and Group Home.
During an especially trying time of my life, Virginia called to see how I was doing and I whined to my then 57-year old friend, “I though that as I got older, life would get easier. I thought by now that I would have a career, that my life would be settled, but it’s not. The older I get the harder life becomes!”
“It will always be that way, sugar,” she said.
I was quiet for a moment. “What do you mean? That the older I am, the harder life will get?”
“No, sweetie, what I mean is even if your life was settled, even if you have no problems, there would be problems. Or you would feel like you did.” She laughed softly. “It’s the same for everybody, honey. No matter how much somebody has or doesn’t have, they always want more. And they feel like if they don’t get it that something is missing. You hear about rich people who are just as miserable as a poor person – you’d think they were one and the same. Both the rich and the poor – they want more. I thought by the time I was 60 that I wouldn’t have to work anymore. See?”
I saw, but to get a better answer, I repeated my tale of sorrow. I wanted her to tell me to keep plugging away at life and, after a certain age, we can slide on into home. That good guys always win. That the American dream is no dream. That effort is rewarded. But no. She’s telling me that life goes on being a series of problems, that no matter how little I have or how much, I’ll always want more. I trusted her wisdom too much to discount her. She’d already been through a lot in her lifetime.
An auto accident nearly sheared off her left foot when she was young. After years of stress, the pain and swelling now threaten her livelihood and she may have to give up her license.
“After I was in that car accident, it took nearly four years to settle my case. By then, we’d lost our business because I was in a wheelchair for a year and a half. I had little Paul and he was hyperactive back then. I remember cooking dinner for my family and chasing after my son from that wheelchair. By the time an offer of money came through, I had to settle for what we could get before we lost our home and our land, cause that’s all we had left. And by the time we paid the attorney’s fee,” she sighed, “there wasn’t much left. I just didn’t have any choice at the time. We were about to lose everything.”
I began to feel my troubles shriveling down to size. Throughout her lifetime this woman lost a success business, then her husband and son to untimely deaths, and now the resurfacing of an old injury forcing her to face finding yet another creative way to provide an income for herself into old age. If ever I met a good guy who should be winning, it was this woman.
After we hung up, I sullenly mulled over what she said – no matter how old I get, that life’s problems never go away, that people always feel like something is missing.
Could someone like her pass on a message as depressing as that? I wondered. Just as a rock thrown into water takes time to reach bottom, it took a while for Virginia’s true message to sink in. I’d seen Virginia through hard times but through good time or bad, she faced them with peace of mind. Maybe what she’s telling me is that it doesn’t matter what my problems are, or how much money I have. The idea is to be content with myself, even when I’m not content with my circumstances.
Life is a series of problems, and the older I become, the more challenges I will face. That’s life and nothing can change that.
Virginia’s message is simple: Quit yearning for things I don’t have and be content with what I have and what I’m doing today. That is not giving up. It’s acceptance. While I continue to work toward a goal, I have to quit setting the time of arrival as though my life is a series of plateaus I feel I have to reach and, instead, enjoy the trip.
I don’t know what Virginia will do once she can no longer be a respite care provider but she already has several ideas in mind. She may open an antique shop she’s talked about for years, or she may become a live-in companion for some lucky person.
No matter what she does or where she lives, she possesses a rare quality that suffering can’t touch and money can’t buy. She walked a thorny path and covered that hole of “what’s missing” with a blanket of being content and at peace with herself in any situation.