What Does it Cost You?

For Parents of YPWCs

By Cyndi Volkers

Originally published in Youth Allied By CFIDS, Summer 1997

I’ve 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, I’ve 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 child’s 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 they’ll never be well enough to go? Why not take easier classes so they can enjoy some social time with their peers?

Too Much, Too Little, Too Late
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 family.

Our children know that I do the best I can, but often that’s just not enough when you’re 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? We’re always trying to balance on the tightrope of life and yet care for our own bodies.

Some days I’m 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.

Under Pressure
YPWCs are also required to mature much more quickly than their peers. They don’t 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 can’t go to the mall or don’t feel well enough to gab on the phone?

I don’t 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 years!

Money Can’t 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. It’s 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 lives.

What has this awful illness cost you? For our family there’s not an area of life that has not been changed. Our children have paid dearly but they are truly the winners in my eyes.