Some people have special needs that aren’t visible, like my daughter and cystic fibrosis. To the average person, she looks like the perfect picture of health. She’s just a little bit chubby, tall for her age and extremely full of energy. In fact, she’s a really healthy one-and-a-half-year-old. She’s currently in the 50th percentile for weight to height, eats well, and has never had so much as a cold. Stitches? Yes. A cold? No.
Strangers are always making comments like, “Well, she’s a healthy kid.” Moreover, family and friends who don’t see us often like to say, “She looks good” with a hint of surprise in their voice. I think much of the time people expect to see a frail, skinny little girl who could break at any second. But so far, she’s the healthiest kid I know.
The truth is it takes a significant amount of effort to keep her that way. She has chest percussion therapy twice a day, takes vitamins twice a day, takes Prevacid once a day, eats a high fat, high salt diet, and takes up to 5 pills (digestive enzymes) each and every time she eats or drinks. She is never around people who have the sniffles or a cough. In October, she will be fitted for The Vest, to shake up her lungs and keep the mucus moving. Over the years, she will only add more treatments, therapies and medications to her daily regime. Frequent two-week long “tune-ups” in the hospital are often needed for CFers to stay healthy as well.
Not too many people realize these efforts exist. But with CF, it is all about prevention. It’s a similar story for children with autoimmune conditions as well. So what do you say to people who wonder if your child is really actually “sick” when he or she isn’t presenting any visible condition or illness? What’s the answer when people tell you that you are overprotective or are over-reacting to a situation?
Often times, I want to offer up a checklist of everything we’ve done that day to keep her healthy and everything we will do the rest of the day as well. I want to remind them that only half of those with CF live to be age 37. I want to tell them that she’s been having trouble gaining weight the last few months and I’d hate to have her have to get a feeding tube. I want to bring on the dramatics, paint a picture of despair, and let them know that life isn’t easy when you have a condition like CF. But I never do.
Instead, I offer up this simple statement, “Thanks. It takes a lot of work to keep her healthy, but she’s doing really well so far and for that we are really grateful.” Okay, so maybe I’ve never said those exact words, but that is what I should say. It’s the truth without the drama or the sympathy plea. Because the truth is, while sympathy can feel good sometimes, I don’t want anyone feeling sorry for me or for her. She’s a tough kid. She’s a fighter. And no matter how much work it takes to keep her healthy, or how many times I have to explain why she is so healthy, I will gladly do it every day of my life.