Every once in a while it hits me hard that we have a daughter who may some day not be able to see the beauty of life that surrounds her. Like when we go into a dim movie theater and she stops dead in her tracks because she cannot see anything. Or when she trips over a step that is so obvious to all of us but her. Or the way her eyes look when the sky darkens up and she realizes she can’t see and reaches out for one of us to hold her hand. It’s as if she looks right through us.
It’s times like that that I offer up my oft-repeated silent, fervent, continual prayer for her: “please help come up with some research that will help her.”
Now, I know that she will be ok if she loses her vision. I know that many people cope with vision loss and are still able to lead wonderful lives. I know Lucy’s feisty personality will help her tough out anything she comes up against.
But oh, how I want to stand up and fight against what all the facts tell us is inevitable.
That’s why we are so glad to be in cahoots with the Foundation Fighting Blindness. They are doing all kinds of research that continues to keep us hoping. And we want to help them any way we can so that they can in turn help Lucy and so many thousands of others who suffer from vision loss.
It feels good to be part of a purpose. A cause for good. That’s why I’m excited that we are gearing up for our second annual Vision Walk a week from tomorrow. (To see the report on last year’s walk click here.) We have been a little bit late on the draw but we are really working on gathering up some funding this week. My mom and I have already donated portions of our proceeds from our book A Mother’s Book of Secrets, (we give all the royalties to this and other avenues to help fight blindness). We hope that possibly others will join us in the cause. The kids are doing some extra things this next week to earn their own money to contribute…you’ll probably see them running around in their “I Love Lucy” t-shirts doing lemonade stands or extra chores. We are encouraging them to do their part to help their little sister.
To see more information, join our “I Love Lucy Team,” or to make a donation click here.
This week Elle was asked to write a paper on the topic of her choice for school. She informed me last night that she decided to write it about Lucy. I thought it was pretty fitting as we have the Vision Walk coming up so I asked for her permission to post it. She got a few of the details a little mixed up in parts, (and know that we really aren’t that crazy on Sundays), but it pretty much epitomizes the love these guys have for their sister and how this whole thing has affected them.
Oh man I’m so thankful for the children we get to share Lucy with. And Elle, sometimes I’m with you on those tears feeling like “prisoners breaking out from jail.” You are one eloquent girl!
Thank you, thank you to all those out there who pray for Lucy and love her from afar. We feel your love and we appreciate you more than we can ever really express.
Love, Shawni
p.s. If anyone wants to post our vision walk link on their own blogs or facebook to help us create awareness, please feel free! Click here for the link. We’ll take any help we can get to help spread the word.
Elle has her mother's gift for beautiful, tender expression. It is no wonder she is part of Lucy's eternal experience.
My own cheeks are wet as my heart feels your love for your baby girl.
Holding good thoughts for you all.
Elle is an amazing writer just like her mama! That was so sweet Shawni!
That was beautiful, so touching, I can just feel her sadness through her words. Lucy gives so many gifts to your family, I know she must have been a very valiant spirit to come to earth and shoulder such trials, and she was sent to the right family, so much love.
Oh man, I read this post and I'm out of Kleenex. Rats!
I will definitely contribute.
We(fellow bloggers and friends) have come to love all of your family over the years of reading your blog, but I think I speak for many who would say that Lucy has a special place in our hearts. Getting to know about her through your blog has been an honor. We laugh at her humor, we cry through her trials and we sympathize through the tantrums, but most of all, we love that sweet, round cheecked, wide smiled, blue eyed, princess and Dora loving girl that has captured our hearts.
So count us in to help with research funding and hopefully, someday, a cure for Bardet Biedl Syndrome.
Salt Lake is having a vision walk in June! I'm so excited! It's so amazing to think that every little penny is going to help our girls, my son, and every other child fighting against this Disease and blindness.You are amazing! Good luck!
what a cutie elle is, that's so sweet! I love her descriptions!
I hope & pray that the find something to help Lucy to prevent this from happening. goodness, that's so hard. but she does have a wonderful family to help her through!
Love,
tara
what an awesome writer. Takes after her mommy!
Your daughter wrote such a sweet report. You have such a loving family and I love your blog!
– Heather
paralyzedwithjoy.blogspot.com
Beautiful. Absolutely moving… you are such a loving mother. I am inspired by you and your family. I will definitely be participating in the Vision Walk. Keep up the good work.
As a former teacher, that piece of writing is what you always dream about getting turned in!!!!
Shawni-I just sent you an email to the gmail account listed on your contact page (shawnipothier@gmail.com). I have a brilliant (i think) and simple idea to get some quick money raised for the Vision Walk. If there is a better email address, please let me know at ash4545@hotmail.com. Look forward to hearing from you!
Beautifully written!
She really does have a gift. That was really touching. THanks for sharing.
So beautiful and touching. Lucy is so blessed to have such a great family.
I have been reading your blog for a while though I rarely comment…I just wanted you to know that I put a link to your Vision Walk page on my facebook profile. Thanks for sharing your beautiful family with me.
Mentioned your blog on my post today. Your Lucy is on my prayer list.
Man Elle, you made me cry! What an excellent piece of writing. It's so good to hear your feelings written so beautifully! Love to you and your darling, lucky little sister Lucy!
Awww – I love the essay! I would love to post that on the LMBBSA site – what do you think?
WOW!! You have one very talented little girl there…she is amazingly eloquent. The apple doesn't fall far from the tree. I am always touched at the tender love your children have for each other. They are shining examples for all of us!! Have a great weekend:)
~Mary
such a beautiful family!
Shawni, Elle's paper is just beautiful. I love how your children love each other…and especially how thet love Lucy.
oh there you go making me cry again. that is so sweet. you should let your little ones do a few blog posts as that was very sweet and special. Another perspective and how beautifully written
big hugs, I can't imagine facing this as a family but if Lucy had to be in any family she is definitely with the best one!
take care
Corrie:)
Sending love to you and your family. The FFB & VisionWalk is so awesome! I have RP.
That made me tear up. What beautiful children you have. Elle has such talent for expressing her thoughts into such deep meaning and with such loving words. You can tell that your family has instilled strong values and love in their hearts. I purchased your book and stumbled upon it the other day, it is very inspiring. Lucy has been a blessing to us all.
Just thought I would let you know that I saw your book in Deseret Book the other day and purchased it. So far I have enjoyed it. I haven't gotten too far as it's been a busy weekend, but I think I am going to like it.
What a beautiful paper Elle wrote, it brought tears to my eyes, you have an amazing family.
i do agree, elle is an amazing writer! hope that the story was all only a fiction..
Hope lucy will never lose her sight ever.. 🙂
GBU all …
Oh Elle, how beautiful and descriptive. Her love poured from the pages. I know you are so proud of her!! 🙂
i just made a small donation towards your cause and hope to see you on vision walk day.
Sowmya Udupa
wow Shawni! thanks for posting Elle's paper. That girl stirred a lot of emotion over here. What a sweet heart. We wish we could have been there for the walk. you are amazing!