Sunday, May 9, 2010

Fairy Dust

We moved to Florida in 2005. I had just been diagnosed with RA, and my symptoms were not even remotely under control.

My daughter, Kate, was just six then, and painfully shy. She was invited to a birthday party at Libby Lu, a retail wonderland for all things girlie that hosted make-over parties for the three-to-nine-year-old set. Kate reveled in the delights of her sparkly up-do, makeup, and pinky-pink nail polish. But she otherwise clung to me as her resident BFF at this soiree.

When the party pixies were all made-over, the hostess brought out the Wishing Dust. The children received special wands with feathery marabou tips, and were instructed to dip the wands into the pot, filled with glitter and dreams. If they sprinkled themselves while making a wish, it was sure to come true. Kate gave both of us a generous dusting as she earnestly made her wish.

The next morning, she asked me how I was feeling. When I told her, “Not too bad today honey. I think it’s going to be a good day,” her eyes grew wide. “It works!” she exclaimed.

In that very moment, my heart broke. Given a single wish, my baby would, without hesitation, give it to me. She longed to have her mother back – the one who put her in the Baby Bjorn and hiked mountains; the one who took her to tennis and dance lessons; the one who spent hours at the lake; the one who got down on the floor to play board games and solve jigsaw puzzles.

No matter how hard we try to keep the pain of arthritis to ourselves, our children are affected by it. They recognize that we are changed. Some, like Kate, would do anything to help us. Others may resent it. Still others may experience fear – is mommy sick? Is she going to die? Am I going to be like she is? Being a parent with a chronic illness comes with a unique set of challenges.

For me, talking to my children has been the best medicine. Reassure them that they are safe, and they are loved. Maybe mommy can’t play ball today – but we can read together, or watch a movie. I don’t hide my RA from them; we share the trials and the victories. Through my RA, my children have developed compassion for others with compromised health. Most importantly, my children still love me, despite the fact that I’m not perfect. Happy Mother’s Day!

Wednesday, May 5, 2010

So Long, Moon Face!

Those of you who have read my earlier posts know that I recently stopped taking Prednisone. Today I want to share with you an observation, in retrospect.

I was indulging in a nostalgic moment with my sister, browsing through photos last weekend.

“Oh, Cheryl – your moon face is gone!” she exclaimed, examining a brand new picture of my daughter and me.

I grabbed the album out of her hand and searched the face in the picture as if it contained the whereabouts of the Holy Grail. Indeed, it told me something that I wouldn’t dare to let myself hope for previously: my face is starting to look more like it used to. Feigning a need to stir sauce, I abruptly walked away, hiding the tears that I just couldn’t suppress. I’ve been waiting five years for this day. Waiting, but not allowing myself to hope – at least not too much.

Dealing with R.A. can be overwhelming. As we struggle through each day, coping with the simple things we can no longer do, such as chopping vegetables, scouring a sink, running, even clasping a bra behind our back – we face each challenge, at every juncture assessing what needs to be a priority in that moment. Overcoming pain and loss of range of motion becomes the most basic, primal focus. As we ascend from a flare, or as our meds begin to help, focus shifts to managing fatigue and the side effects of medication. We hardly allow ourselves to indulge in mourning over the loss of our looks – a vain and superficial pursuit in light of the infinitely more pressing issues about our health. But dealing with Prednisone’s telltale moon face can be emotionally devastating – even if we don’t want to admit that to ourselves.

So I am going to tell you this, and I mean it from the heart: YOU ARE BEAUTIFUL. You are neither vain nor superficial for feeling anxious about the changes in your appearance that you bravely and willingly subject yourself to in order to mitigate a far greater problem: arthritis pain. You are courageous and strong. And, believe it or not, you will not be on Prednisone forever.

Today, I am basking in the light of my face returning to normal. I am reveling in the joy that I no longer need Prednisone. I am ever grateful for the relief it gave me, but even more glad to bid that phase of my treatment adieux. So long, moon face – hello me!