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.

10 comments:

  1. I came across your blog from a button on another blog. My first thought, "What a BEAUTIFUL header!" Your daughter, Lucy is a total doll! I was heartbroken to read about her illness. I realize this may sound a bit odd...but I have two businesses that I dedicate to fundraising. If you would like to learn more, please contact me at richelemcfarlin@bex.net. It will cost you NOTHING. I'll be honest...I am not one to do "parties" or go out and find customers in an outside sales kind of way. yet, I signed up to sell for a few companies. My heart always wants to donate money but with my financial situation, I can never donate as much as I'd like. So, I have decided to use those "businesses" to help others and do my share. :) Your beautiful daughter and her story just grabbed my heart. I would be willing to donate sales to this cause. I'll be honest...I really don't use these companies...this is new to me. But I am willing to help out. :)

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  2. A family member in Utah suggested this blog to me because my younger son Zachary has Bardet-Biedl. He is 3 years old and will be 4 in November and has the bluest eyes much like your sweet little girl Lucy. Thank you for sharing your thoughts on motherhood. I struggle with being the kind of mom I always wanted to be and the mom I really am but have since learned that it's okay, as long as I'm doing the best I can. We can't ask for anything more than that.
    emily.whittemore@gmail.com

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  3. Hi Shawni,

    I just wanted to let you know that I mentioned your 2 blogs in my latest post "Blog Envy" as two of my favorite blogs. Thank you for your contributions in my life as I look forward to "catching up" each day with my "Cyber Friends"...
    ~Mary

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  4. I am too pregnant to be reading this kind of tear-jerker stuff right now!! gee thanks! :)
    No, but really. Thank you so much, I'm so grateful to have found your story and your family blog as well. Will be spreading the word about little Lucy!

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  5. I was given a copy of your beautiful book from my dear friend Brigitta for my birthday. Shortly after I read it I saw the article in the Mormon Times about Lucy's diagnosis. You are in my thoughts and prayers. I can't tell you in words how much I loved this book. I have used so many of your's and your mom's tips. My children range in age from twins at 8 to a 13 year old. We have certainly had our share of tragedy, but I think as you so eloquently stated, it has brought my little family closer together and made us stronger as we apprciate and love each other so much more because of the trials we have experienced. I am purchasing a copy of your book for each of my Primary Presidency members. Lots of love to you and your amazing family and you will be kept in our thoughts and prayers that a cure for the blindness will come in time. -Karen Berg

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  6. Shawni, I came across your beautiful blogs via AshleyAnn's blog. What wonderful work you are doing fundraising for a cure for Retinitis Pigmentosa - as you wrote in a previous post 'the hearts of others who will benefit are also swelling' is so very true. We pray for a cure to be found in the coming years for my darling husband who also has RP. I know his lack of vision troubles him a greatly with 2 gorgeous little girls to raise - we would so love to find a cure. Thank you...

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  7. Hi,
    I loved reading your thoughts and enjoy your writing and wisdom. We have a daughter who has Cerebral Palsy and though she has been in pre-school and therapy for years now, I am really struggling sending her to Kindergartent this year. Man, this motherhood gig is a crazy ride, but one that is so full of blessings and joy. I'll pray for your little girl and peace for your family.

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  8. I came across your blog from mormon.org. You strike a familiar cord to me! I can relate with your dreams of motherhood when you were younger. And your family situation now! I have a son who is 9 with special needs. And we have learned so much, and wouldn't have him any other way. Thank you for supporting motherhood! I love all of your photos! I have a love of photography as well! Peace and blessings to your family!

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  9. I also found your blog from mormon.org and really appreciate your insights. I have a 5 year old with special needs and it really has changed the way I thought I would mother. I just blogged about it myself, so it was especially fun to see this post and remember, once again, that I am not alone. I keep adjusting that plan we had for the future and try to focus on the most immediate need, without losing hope that we'll reach our long term goals. Amazing what you've done for your beautiful daughter. I admire you for reaching out to help others like her, as well, when your plate is already full! Best wishes to your family.

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  10. Hi Shawni. I was chatting with one of the missionaries on mormon.org trying to find out how to contact another "I'm a Mormon" mom whose daughter has a rare genetic disorder "Joubert Syndrome" (born w/o the vermis of the cerebellum) that 2 of my daughters have and she asked if it was like B-B Syndrome. I had never heard of B-B S but then she mentioned that your daughter has RP. My daughter Suzie has RP. I didn't know there are some treatments in the works for it now. We live near Phoenix. We were married in the Salt Lake Temple too.

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