10 Lessons My Daughter Has Taught Me


My daughter Christine is my hero and my inspiration. I know every mother loves her daughter and thinks the world of them, but Chris has taught me so much.

Chris was a vibrant child full of life and loads of energy, which she channeled into dancing. As a student at the High School for Performing Arts in NYC, Chris began to complain of severe joint pain and fatigue. After many doctors’ visits and a multitude of diagnoses, Chris and I went to the Mayo Clinic, where she was told that she indeed had Lupus. When we came home Chris hung up her toe shoes and focused her energies on things that were not as hard on her body- like theater, crafts and writing.
1.Chris taught me that when life hands you lemons, you need to make lemonade.
Chris struggled with the almost daily symptoms of pain, mouth sores, rashes, fatigue, fevers and feelings of general malaise. As she put it, “sometimes I feel like a truck hit me during the night.” Through it all, Chris tried to lead a pretty normal life, finishing high school, attending college at Hofstra University, working, dating and last year marrying a wonderful man. Many times people ask Chris how she feels and I often overhear her say “fine”, yet I know she is in a flare-up of her disease. When I ask her why she isn’t honest, she explains, “Mom except for a few close friends, no one really wants to hear how badly you feel.”
2. Christine has taught me a lesson I still struggle with- don’t whine and don’t complain!
The first time Chris was hospitalized at the age of 17, a young intern actually came in to examine her at 11 o’clock at night. Without missing a beat, Chris said she was tired and the doctor would have to come back tomorrow. I came from a generation, where I was so thankful the doctor was even there.
3. Chris taught me to stand up for myself and not to accept the unacceptable.
Throughout my children’s high school and college years, I remember so many of my friends being worried about things that seemed silly to me- like messy rooms or their choice of clothes. Little things seem so unimportant when you deal with a chronic illness. I was worried about Christine’s latest dose of steroids and its effect on her body or her upcoming hospital visit. Unfortunately, having a chronic illness, puts things into perspective. Even now, my co-workers will get so riled up about the latest memo or ruling from the higher-ups, but those things just seem to roll off my back.
4. Chris has taught me not to sweat the small stuff- we have bigger things we need to focus our energies on.
I remember once when Chris and I were coming home from a doctor’s visit, she asked me to stop at a McDonald’s for an ice cream. It had been a long day in the city and I was tired, but Chris persisted and I gave in. We sat in the parking lot, enjoying our ice creams and Chris said “See mom, wasn’t this little treat worth our time?”
5. Chris has taught me to enjoy the little things in life, they help to make the not so good times, easier to swallow.”
A few years ago Chris began a website called- www.butyoudontlooksick.com. As a family we had always joked about how many people told Chris she looked so well, as if her good looks was an indication of how good she felt. The website became a resource for information, as well as comfort and support to so many people literally around the world. What began as a place for Chris to reach out to other people with Lupus is now a place for anyone with a chronic “hidden” illness. Her readership has grown to thousands and she has touched the lives of many.
6. Chris has taught me that one person can indeed inspire others and make a difference.
This year Chris became pregnant, despite warnings by doctors that it might be hard on her body. It was a VERY difficult pregnancy, marked by 5 long months of nausea, as well as three hospital stays. Despite it all, Olivia Emma arrived almost a month early on July 18, bright eyed and most importantly, healthy. Mommy and daddy are bsolutely in love with their baby girl, as I am too.
7. Christine has taught me to keep reaching for my dreams, despite obstacles in my way.
As a parent it is very hard to watch your child suffer or be in pain and I hope Chris never has to experience that, yet I ‘m sure she will in some way. Just recently, Chris celebrated her 30th birthday and while everyone sang Happy Birthday with big smiles, I couldn’t help but feel a pang of sadness when I realized Chris has now reached
the point of living with Lupus more than half her life. A very sad day in my life was when Chris was about 21, she said, “Mom, I don’t remember what it feels like to be healthy.” …..but I do.
8. Chris has taught me that you can’t go backwards, only forward, one day at a time.
Every year Christine gathers up a huge team of family members and friends to walk in the local Lupus Walk, sponsored by the lupus Alliance in Long Island. Each year she surpasses herself in both team members and monies raised. Chris has always had a great sense of humor. She used to comment that getting a bunch of people with fatigue and pain issues up early in the morning to walk a few miles, might not necessarily be a wise idea. She had once suggested that we all meet at night and instead of a walk, we could see who naps for the longest.
9. Chris taught me to try and find humor in any situation
As a worrying mom, I had always reminded Chris to take care of herself. Especially when she was younger, I probed her about what she ate, if she took her medication and how much rest she got. Old habits die hard, and now that Chris is a grown woman, I have to stop myself from doing that. In recent years the tables have turned and Chris has often checked on me; asking if I’ve taken my vitamins, reminding me to drink water, etc.
10. Finally, Chris has taught me the importance of taking care of myself.
Hope these lessons help you. Best wishes to all.
Christine’s mom
written by Janet Miserandino © 2008 butyoudontlooksick.com

  • Jerry Gilson

    It took me ten years to get a diagnoses of lupus.That was six years ago.Doctors did not believe I could have lupus because I am a man.
    Yesterday, our local newspaper had a full page article on lupus and told of the many hardships we who live with the disease have. They interviewed me, and I was able to tell my story, in the hope that maybe another person who is trying to find out why they hurt and are so tired and so sick, might find comfort in knowing that there is an answer. Maybe even a man.

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  • Crystal

    One thing I’m still learning is recognising my limitations then accepting and respecting them. The last 2 are the hardest part, I always want to push even though I know I will pay later. Sometimes it is worth the pain, usually it is not.

  • Berni Sutcliffe

    I have just found this website…and what a joy!
    Sometimes to appreciate the beautiful colours, you have to notice the shade as well.
    Love to all, Berni