Lucy has a syndrome called Bardet-Biedl (BBS) which causes blindness, obesity and other health issues. Lucy is one of thousands of children who's families are fighting to find cures for this debilitating syndrome. The goal of the "I Love Lucy Project" is to work with doctors and scientists to stop the effects of BBS before it's too late.

Thursday, May 6, 2010

Mother's Day thoughts from Shawni

As I prepare for Mother's Day this year I have reflected on the wonderful mothers that have shaped and molded my life to whom I am forever indebted.


But in addition, I have also evaluated my own motherhood. I’ve thought about that ideal, perfect mother I dreamed of becoming since I was a little girl and how my true motherhood self is so unlike “her.”


“She” (that idealized mother I dreamed of becoming, beckoning to me from the horizon of life) had children who never fought and who dressed immaculately. “She” never got frustrated or impatient. “She” would always return her library books on time. And “her” children were all healthy and normal.


But the real me stares back at me from the mirror.


I am the mother of five children who all had continual snotty noses until they were three and I still took them out in public. I am the mother who slams doors when I’m mad and can dish out a bone-chilling “evil eye” when I need to whip a child into shape. I have decided the library isn’t even my “thing” (library books can’t seem to get returned at all). And one of my children is not entirely healthy or “normal.”


You see, last year my youngest daughter Lucy (who was two-years-old at the time) was diagnosed with a rare syndrome called Bardet-Biedl. This syndrome, among other things, causes kidney and heart problems, obesity, and most heartbreaking for us, blindness.


Even though in our hearts my husband and I knew full-well the diagnosis was coming (Lucy had always been delayed and we had done enough research to know this syndrome fit…like a glove), in the back of our minds I think we dearly hoped that maybe, just maybe, it would all turn out to be a bad dream. And we’d wake up and our life would go on as planned. We would be a “normal” family. Is that so much to ask?


But it wasn’t a dream. It was real.


And in many regards it slapped us in the face.


It is interesting to look back and reflect on what has happened in a year. Countless doctors have been visited (and small pieces of my mind have been handed out liberally as needed). We have gone from worrying endlessly about blindness to obesity to heart problems to kidney issues and back again…around and around in one big, never-ending circle.


But you know what else? Our little family has learned and grown in ways we never thought possible. I have watched my four older children become the best live-in therapists there ever could be. We have fallen more deeply in love with each other as we have cried together, laughed until we cried again, and worried.


As we work to fight all fronts of this syndrome, there are some things we can’t change.

But one thing we feel we can do is stand up and fight against blindness. You see, most children with this syndrome lose their vision between the ages of eight and fifteen. But scientific evidence has given us hope that there may be a cure for Lucy's type of blindness within the next few years. Because of that time line we feel as if we're on a race against time to help fund the research to help Lucy keep her vision.


Simultaneously, as we found out about this syndrome my mother and I had just published a book about motherhood called A Mother's Book of Secrets. We had happened to choose a picture of Lucy for the cover of the book before we had any idea about what would hit us with this syndrome. In light of our new diagnosis we decided to donate all of our royalties from this book to help fight blindness.


The money we can raise through this may only be a drop in the bucket to help, but sometimes as mothers we just need to stand up and fight for whatever our childrens' needs may be.


So, back to my motherhood vision from my youth:


What I’ve realized is that I like that lady I see in the mirror much more than that sterile one I dreamed of becoming.


Because she is real.


She takes her children out and loves them even more because they’re not perfect. Their mistakes and “issues” fold into her heart and make her one with them as they work things out together. She can apologize for her many mistakes and her children know that although she strives toward perfection, she’s far, far from it. And that’s ok with them.


And that healthy, normal kid thing? Well, that lady I see in the mirror has realized that this “different” child of hers has already wrapped herself around her finger and taught her more in one year than she could have ever dreamed of learning without her. That daughter with the syndrome has taught her a whole new realm of strength, endurance and pure love.


In my “future motherhood outline” I never planned on being the one to help educate specialists about a syndrome they have never heard of before and fight for what my daughter needs with all my might. I never dreamed of being the mom who tries to encourage strangers to go on “vision walks” or to have to teach a child to walk with a cane.


But here I am.


And although last year I never thought I would say this, I’m so thankful that I’m not that Mom my younger self hoped I would be.


I’d bet that very few of us mothers are.


Someone wise once explained that you can’t direct the winds; but you can adjust the sails.


This Mother’s Day, may we all strive to embrace that wind that inevitably fills our lives and learn how to guide our sails not toward our dream-like storybook best, but our own real best.


For more information about Lucy, click here.