Week 14 - A Little Bit of Heartache.

Well, I've had a week. Kaylee has been perfectly fine. Other than one day of ouchie due to a diaper rash, she's been great. She is getting so big, and so vocal. It really is adorable. It is actually really hard to believe that she will be five months old very shortly. I can't believe how much being a mom has changed me, and my life.

However, this week I became distraught and I thought I would tell all of you why.

I was sent a comment on this blog (which I have to approve/deny) which I deleted because of it's very sensitive nature. I was sent an anonymous comment which had a picture of a deceased infant. Underneath that picture was a comment: "Be glad this isn't you. Quit complaining."

For the record, I am completely thankful that my daughter is alive and I feel for any mother who has lost a child, I cannot imagine anything more horrible.

That being said, I don't feel as though I "complain" about my daughter. I am merely expressing my feelings about our own situation, which is unique enough to warrant discussion. So, I will continue to do what I do for my daughter's sake. This is a blog more for her than anything else, and for others who find themselves faced with the challenge of having a cleft affected baby. To help those who read this to understand what I have gone through I offer this:

c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Here you can find the original poem/story -Welcome to Holland.

And to end our day or start our morning depending on where you are at in the world:

Kaylee Monster in the Ocean Swing of Doom.