Unfortunately when you have a child with a chronic illness, you come to think of yourself as some sort of expert on the subject. It’s not exactly a specialty that you dreamt of having, but one nonetheless that you take ownership of with some sense of pride.

My daughter Christine has had Lupus for over a dozen years now and we have both seen a vast number of doctors’ offices and emergency rooms. I have even written articles and spoken on T.V. about what it felt like to
be the parent of a “sick” child and how to handle a medical crisis. But time has proven that no one is an “expert” at this.
About a week ago Chris had to be rushed to the hospital and because it had been a while, thankfully, since her last emergency room visit, I actually felt “out of practice” at this routine. I had no “emergency bag” pre- packed with water; snacks and reading material- I didn’t even have quarters for the vending machines. Didn’t I read my own articles? I used to carry a list of Chris’ meds on me, but since she has been a bona fide adult for a while now, I no
longer carry that now out of date scrap of paper. I felt like a fish out of water- I felt unprepared. I actually felt a sense of panic creeping in- a deep sense of sadness- “uh oh, here we go again”. With any illness that comes in waves, it’s easy to think that all the storms are behind you when things are going well for a while. As a parent you are so happy that your child has been healthy that when a bump in the road comes again, it ends up feeling like an
insurmountable mountain.
So what did I learn from this last visit? I am now at the point in my life where I am not always the teacher to my daughter, but quite often she is the teacher for me. While in the E.R. Chris was calm, as were her friends, and she said “Mom ya gotta do what ya gotta do.” Not exactly Shakespeare, but I knew what she meant. Yes, being sick
sucks, but whatever she has to do to handle it she will, and whatever I have to do as her parent to help her- I’ll do too. That’s it. I guess all the articles and great advice in the world doesn’t always prepare you for life’s curve balls, but the bottom line is- she will get through it.
So if bad days come your way I hope you remember these words-“Do what ya gotta do.” Plain and simple. We might not always be prepared, no matter how savvy we think we are as patients or caretakers, but the bottom line is- with the help of family, friends and our own inner strength, we will do what we have to do.
Medical update– Chris is recovering right now and walking around the house- or I should say wheeling around the house with a walker and “doin’ what she’s gotta do.”
-Written by Janet Miserandino, Butyoudontlooksick.com ©2006