Originally published in Youth Allied By
CFIDS, Spring 1997
When I was a high school English teacher, I used
literature to teach my students about heroes. One of the things we discussed is
that heroes are not always the people who come out on top. Rather, heroes are
often the people who persevere, who remain loyal, who slog through the conflict
in spite of defeat, who go beyond the expected and stick to their decisions, and
who become stronger in the end. Ernest Hemingway’s heroes, for example, often
reveal these characteristics.
I’d like to suggest that parents of young
persons with CFIDS (YPWCs) are heroes. I’ll be the first to admit that I rarely
feel like a hero. In fact, I often feel like an inadequate parent who is
overwhelmed by the realities of what CFIDS has done to our daughter’s life and
to our lives as a family.
It’s much easier for me to see the hero
qualities in other parents of CFIDS kids. I see perseverance in Dave and Barbara
as they have continued to explore creative ways for Nancy to get an education
after CFIDS robbed her of her ability to read. Their doggedness in helping her
learn through audio and video books and tapes has kept her growing and ready to
merge into college life when she is ready.
I see loyalty in Ed and Linda as they stuck
with Beth after several noted New York City doctors insisted she was not sick
but instead had severe psychological problems. They refused to believe the
"experts" and chose instead to trust their daughter’s report of what was
happening in her body.
I see heroic qualities in Dave and Mary as
they slog through countless, vehement battles with doctors over Josie’s illness.
They hang on and refuse to let the press of the battle deter them from their
ultimate goal of helping their daughter get well.
I see strength in Peggy as she has endured
over a decade of standing by Sharon while she has fought through
life-threatening complications to her CFIDS.
I see unbelievable endurance in Cyndi and
Steve, who during the past decade have watched all five of their children cut
down by CFIDS. Although Cyndi’s own body is severely debilitated by CFIDS, she
has pressed on to be there for her children, through the countless weekly doctor
appointments, through the losses and disappointments, through the battles with
school officials and medical personnel. Steve has been relentless in staying at
a job he would like to leave due to its travel demands because he has pledged
loyalty to provide financial and emotional stability for his family.
Where do these heroes get their strength,
their perseverance, their ability to go on? From each other. From their
unquenchable, fierce love for their children. From the support of friends and
family. From their faith in God’s promises to walk with them no matter what.
From their hope that someday their child or children will again resume a normal
I know I draw strength from the lives of
these heroes. Each of them would probably say the same thing I said earlier, "I
don’t feel like a hero." But each of the people mentioned here — and the
thousands of parents whom they represent — is a hero. Each has made a commitment
to persevere through the long years, to fight whatever battle looms, to find
creative ways to make their child’s life more bearable, to remain loyal, no
matter what the cost.
And I know that each of these heroes has
grown stronger because of the struggle. I hope someday we get a chance to meet
each other and talk about how we have grown. I hope we continue to spur each
other on when the going gets very tough.
May God continue to give us the strength to