Lupus – A Mother’s View
IN Honor of Mother’s Day in the US, my mother wrote this article about being a mom of a child with Lupus.
My daughter Christine has had Lupus, with the accompanying vast array of symptoms, since she was 15 years old. During college, in her attempt to explain her illness, she wrote about Lupus and its debilitating effect on her energy, by a comparison to waking up each day with a limited amount of “spoons“.
Having spoons has always been an inside joke in our family. If Christine was having a particularly bad day, she might call me and say, “Mom, I have no spoons left today.” I often sign my cards to her-”May you always have spoons.”
Christine has tried to educate our family, friends and even total strangers with her analogy. Well this is a view from the other side of the spoon, so to speak. Having a child means worrying your whole life about their happiness. Having a child with a chronic illness means worrying about grades, dating and makeup; but also about pain, medical tests and future prognosis. Somehow you survive.
Christine is often asked about what it is like to have Lupus. You see, she doesn’t look sick, so she is a curiosity to some, an enigma to others. Few people ask me what it’s like to have a child with Lupus, and I think it’s because they already know- it’s every parent’s worst fear. No parent wants to be healthier than their child.
Christine lives with chronic pain and fatigue and a constant pendulum swing of good days and bad. Being her mom means struggling not to be so effected by them, especially the bad ones. I am not so good at this. I have often found myself overwhelmed and in bed crying, after seeing Christine in a flare-up, or hearing that down, resigned tone in her voice. It’s a roller coaster ride I would prefer not to be on. But then there are her good days, and when Christine is having one, she seems to want to pack a lot of life, laughter and joy into 24 hours and luckily for me , I have often been around for the ride. Christine, more than most, realizes the gift of a “good day’, a gift most of us take for granted. Hopefully, she has rubbed off on me, and I try to appreciate the little things. I remember once taking Christine home from a doctor’s visit and she asked me to stop for a Mc Donald’s ice cream flurry. I felt rushed and tried to dissuade her, but she persisted, saying “mom, it’s such a little thing and it will make me happy.” I don’t really know why I remember that so vividly, but I think of it often and I try to cherish the little things that make me happy, like a warm cup of tea, or relaxing in my recliner.
Having a child with Lupus means trying to coax her into experimenting with vitamins, heat, cold, massage therapy, herbs, and physical therapy, whatever. I always think everything will work, while Christine approaches life more cautiously and often thinks nothing will work. She has been known to say I dwell in “Pleasantville”, but I like it here and plan on staying. Pleasantville is filled with hope and promise. I think in dealing with any chronic illness you always need hope, otherwise you might as well raise your hands up in defeat- the illness has won.
I used to save my sick days at work for my chronic colds, but for the last decade I hoarded them and used them oh so sparingly, just in case I needed them if Christine got sick. I found myself conveniently sick on weekends, as if my body knew I had no time to be ill. In reality, I always felt I could never be as sick or as tired as Christine must feel. That’s a difficult one- there’s a lot of guilt in feeling better than your child.
Being Christine’ mom often means waiting a lot. I’ve become good at waiting- waiting in doctor’s offices, waiting for test results (now that seems like an eternity), waiting in emergency rooms (always in the middle of the night), and even waiting for Christine as her sluggish body tries to catch up with her good intentions. It has meant being flexible, as plans need to be changed the last minute, to accommodate her unpredictable flare-ups. I used to feel that everything was important, but I’ve learned from Christine that the world doesn’t come to a halt if you are a little late or even have to miss something. I remember once trying to get her out the door in order to be on time for a doctor’s appointment, and Christine was moving very slowly that morning. I was upset because we would be late, but when we got there we still ended up waiting for almost an hour. A lot of what I worry about never materializes or turns out not to be as important as I thought. I’m still trying to remember that.
As a parent of a chronically ill child, I have encountered those who stop asking about how Christine is doing and how she is feeling, because they feel uncomfortable with any negative response. I thought of lying and saying things are wonderful, but most of the time I just say things are good and bad, which they usually are. There are those that continually ask about Christine, and I appreciate their good wishes, concerns and prayers. My closest friends don’t just ask about Christine, they ask about me. It’s easy to get lost in the shuffle. It’s easy to remind your child to take care of herself, and run yourself into the ground in the process. I have become so much better at being the caregiver than taking care of me. I am finally learning that lesson from Christine too. I have seen how important it is for her to take care of her body and her spirit, and I am thankfully realizing to do the same.
On the other side of the spoon it can be depressing. If your loved one is down, it’s a constant struggle not to be down too. Beside dealing with your own depression, the parent juggles emotions of fear, disappointment, anger and fatigue; all the while trying to be optimistic, calm and hopeful. I have learned though a lot from being on the other side of the spoon. I (along with Christine) am stronger than I thought. I have discovered many life lessons about patience, acceptance and joy for life I have shared many special memories with Christine, with a greater awareness and appreciation for them. I am so proud of the woman she has become, not because of the Lupus, but despite it. I guess I can say the same for me.
Written by: Janet Miserandino (Christine’s Mom)