SMILES

Hi,

My name is Julie and I am the mom of 3 cleft affected children; Claire 10 (UCLP), Aiden 7 (CBCLP) and Duncan 5 (CL). Our first 2 are biological and the third adopted. As cleft affected babies are our only experience; my husband & I became certified foster parents (for CA kids) they tried to have us take any 'medical fragile' child; because they had only 2 CA in 30 years. Well, 2 weeks later we got the call about a newborn left at the hospital - and that is how we ended up with three.

Life is certainly an adventure. 2 years ago Aiden was in Kindergarten. The kids at school were asking "What's wrong with your lip?" When Aiden told them that he was born with a cleft, the 5 year olds didn't understand.

He came home and asked me if I could read a book to his class about clefts. We couldn't find an appropriate one; so he said, "then you write one, Mom." A Special Smile was (self) published in October!

We feel this book is a great tool for parents, teachers and friends of children with differences or a special smile. It helps explain in young listeners and young reader’s words what a cleft lip and palate are. My hope is that this book is used before the cleft affected child is asked that natural question, “What’s wrong with your lip?â€

I purchased a copy and look forward to reading it.

I think that SMILES' social service would be even greater if more stories of families and their experiences where officially included.

Though my wife and I shared our experiences on our son's condition in an effort to educate, help, console, and create a sense of belongingness we never really shared more than 3-5% of our past and present experiences.

I would like to think that this sentiment is commonplace among us--members of this support group and beyond.

Gregory (father 10 yoB born with PRS)

gregory wrote:I think that SMILES' social service would be even greater if more stories of families and their experiences where officially included.

Please note that among other initiatives, the expansion of family stories on the site is in our list of priorities this year.

Thank you for your observation

SmilesAdmin
Smiles@Cleft.Org

Gregory...

Did you get the book in yet?? Did you like it?? Zach is only 5 months old but I was thinking about getting it for later use.

Thanks

We got it about a week ago; maybe more.

It is a nice book about embracing differences--a cleft story as a child would be able to understand it.

It is well written, informative, and the illustrations are very nice.

All four of my kids were interested in the story. As I reached the end there was silence; this assured me that this story had reiteratively confirmed all that my wife and I had discussed with them in the past.
A few seconds later, as I attempted a slow but peaceful escape from the sofa, there was flurry of even more questions coming from all of them. I guess, one can never have enough of A Special Smile.

Gregory

Thanks for writing this book. I haven't seen it yet, but ordered a copy for my nephews (ages 4 & 7) right after their baby sister was born a couple weeks ago with unilateral complete cleft lip. I also asked my local library to purchase a copy but haven't heard yet if they will do so.

I just ordered one of your books. I sent you an email regarding it - I hope you get the email.

Thanks for writing a book that speaks to the need.

And thank you for caring for your cleft children. It takes special parents to raise our babies with special smiles.

Jennifer
Nanny to Taylor (uclbcp)
9 months old

Julie,
I got my book today and I wanted to say thank you.

For writing it - it was very informative, easy to understand and will be a blessing to many children.

For signing it - what a treasure for Taylor to have through her life.

For being the kind of mom you are. Taylor lives with us because her parents could not deal with her birth defect. But you not only see these children as special but you have taken on children that you did not have to.

May God bless you in abundance!

Jennifer
Nanny to Taylor (uclbcp)
9 months old