What Does it Cost You?
For Parents of YPWCs
Originally published in Youth Allied By
CFIDS, Summer 1997
Iíve been spending some time lately
reflecting on what chronic fatigue and immune dysfunction syndrome (CFIDS)
costs. We all know of the huge financial burden this illness causes, but what
about the emotional, spiritual and physical costs?
The Price You Pay
As the mother of five children, all diagnosed with
CFIDS, Iíve had a unique opportunity to observe the price that young people with
CFIDS (YPWCs) must pay. Our second child, Steven, recently graduated from high
school. I sat in the audience reflecting on how much harder it was for him to
reach this milestone than most of his friends. Did the other mothers think of
all the sleepless nights that they rubbed their childís back? Did their children
come home in excruciating pain from sitting in school desks for an hour or two?
Had their children worked through school vacations to keep up with their classes
because of missing so much school? Where were their children when Steven was in
bed for his freshman and sophomore years?
Each day our children must make numerous
decisions about what they will pay in effort, time and energy to live with
CFIDS. Do they try going to school for an hour or two and risk fainting in front
of their classmates? Do they go out with friends on Friday for pizza if that
means it will put them in bed for days or weeks? Should they take honors classes
and prepare for college when it looks like theyíll never be well enough to go?
Why not take easier classes so they can enjoy some social time with their
Too Much, Too Little, Too
As you can see, the
questions far exceed the answers when it comes to parenting a YPWC. What further
complicates things in our home is how debilitated CFIDS has made me. There is
never, ever enough of any of us to meet the needs of each member of our
Our children know that I do the best I can,
but often thatís just not enough when youíre a sick mom of sick kids. If you can
only tolerate one evening outing per week, which honor assembly do you attend?
Which choir concert? Which graduation? Weíre always trying to balance on the
tightrope of life and yet care for our own bodies.
Some days Iím able to be the caretaker
while one of the children is in the hospital or home sick in bed. Sometimes the
roles are reversed and they must care for me. Our 20-year-old spent her spring
break from college cleaning our home and doing loads and loads of laundry
because I was too sick to be up. She only is able to be up a couple hours a day
and yet she willingly used her precious energy to care for us.
YPWCs are also required to mature much more quickly
than their peers. They donít have the luxury of energy spent on silly outings or
all-night sleep-overs. Many of these teens miss out on dating, football games,
proms and even lasting relationships with their classmates. How can a teenage
boy relate to his friends when he can no longer get out of bed, let alone play
tennis or football? What about girls who canít go to the mall or donít feel well
enough to gab on the phone?
I donít think there is one easy solution to
these questions. Instead, each family must help each YPWC through each of these
terrible losses. Maybe a friend can come over on Saturday for a quick lunch.
Possibly a church group could have a pizza night at your house instead of
church. Flexibility becomes very important during these difficult
Money Canít Buy Me Love
Although our families all pay a huge price when
living with CFIDS, there is also a huge profit. As our older children close the
teen chapter in their lives I am amazed at what kind of people they have become.
Instead of being bitter, angry or resentful they are strong, mature and Godly
young people. They know what is truly important in life and therefore spend
their time and energy in those areas. Itís a testimony to our God that they see
the blessings that He has provided for them. They have learned to be
compassionate because of the pain they have endured. They have learned what it
means to persevere in order to finish high school and now begin college. They
are aware that there may be times when they can only handle one class or none at
all, but they always strive to move forward in some area of their
What has this awful illness cost you? For
our family thereís not an area of life that has not been changed. Our children
have paid dearly but they are truly the winners in my eyes.