Friday, January 25, 2013

Cleft Book

Recently I was asked to submit Bailey's story for a new book called  
I Wish I'd Known, How Much I'd Love You.

I submitted a short essay about our experience, along with Bailey's information, and before and after pictures.

It's going to be a compilation of stories from parents of cleft-affected children.
The goal is for the book to be a reference for parents going through the same ordeal.
All proceeds from the sale of the book and related items will go to cleft charities like Smile Train
(Which is an amazing charity by the way!
An entire cleft repair surgery is only $250. amazing!)

I think it is a great idea.

Finding out about your child's cleft when you are pregnant gives you time to prepare.
But it also gives you a TON of time to worry, too.
You worry about the most ridiculous things.
And the not-so-ridiculous things: like surgeries, feeding problems, and more surgeries.
The title for this book is so true; there are so many things I wish I'd known.

For me, there were a few things I knew without a doubt.
I knew Bailey would have great medical care.
I knew our families would love her no matter what she looked like - they already did.
And above all, I knew we would love her no matter what.

But there were so many other things I didn't know...

Would her cleft be big?
(Yes, it was pretty big for being just on one side.)

Would her cleft "bother" me?

Would I notice it all the time?
(Again, no.)
Would people make mean comments?
(No, except from a lab tech who said to a week-old Bailey, "You'll be beautiful someday!" I feel lucky that that is the worst we ever got.)
Would we get weird looks from strangers?
(Nope, not really. If anything people came up to us and complimented Bailey while telling me stories of someone with a cleft in their families.)
Would she be able to eat okay?
(She ate like a champ from every type of special bottle we tried.)

How would surgeries go?
(Bailey always did awesome and was back to normal within a day or two. And while she has quite a few more to go, we are taking it one at a time.)
Will she get made fun of?
(We haven't crossed this bridge yet. And I am sure the answer will be yes. Every kid has some weakness that gets pointed out eventually. Hers is just worn in an easy-to-spot place.)

Every parent wants to know that their child is going to be okay and have a normal life. I hope this book helps calm some of the worries that cleft parents face.

I will share more info when the book is published later this year. :)


  1. "Hers is just worn in an easy-to-spot place." This is why you are amazing. Your children are so lucky to have such great parents.

  2. Oh how I loathed that line, or variations of 'she'll be beautiful someday', she'll be beautiful after the surgery' etc


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