Wednesday, September 23, 2009

7 months!

I thought that I should at least post a couple pictures of Vivi and Lizzi since it IS their birthday today. And I still do not have a baby book for either of them. I keep telling myself that it is because we are now digital people and I will put together a photobook for each of them that will include only pertinent information and (this is the really genius part) it won't have any blank spaces to make me feel bad for not filling in such important information as "Who watched the first time you rode a carousel". However, this plan will only work if I actually get going and do it and so far, well, the guilt's still here. But I digress, these are pictures from today, September 23, 2009, and they pretty much capture what they're like right now.

Elizabeth, in the top two photos, has her tongue out all the time now. She has 2 teeth coming in now so we're hoping that accounts for the weird tongue behavior. Or that at a minimum she will stop by the time she gets to high school. She is crawling all over now and, if not closely supervised, will head off on little expeditions to see what goodies she can find on the floor. Lucky for her the older girls like to leave treasures lying all over the house so she can always count on something new and interesting to shove in her mouth. And if all else fails she likes to pick up clumps of dog hair (yes, I'm admitting we have them floating freely about) and try to eat them. She's a smart one, that Lizzie :)

And Vivian, in the bottom two photos, has really started to fill out. Her cheeks are getting chubby and she is developing little fat rolls on her thighs etc- yea! Please try to look past the spit up draining out of her nose in the top photo. I was trying to capture her newest trick- mini push-ups! She just started doing them within the last couple of days and it is a major improvement. Before whenever she was on her belly she would put her arms behind her and lift her legs off the ground so that she looked like she was flying. She still does that plenty, but at least now we know it's not permanent ;)

Someone sent this to me today and though I've read it before, it was always pre-kids. I know we are very lucky that Vivian seems to have a very mild form of 22q11 deletion (what we've been calling DiGeorge's or VCF), but it's still there. And it will always be there. And the worry will always be there. I don't think there's any way that we can know that she is missing part of a chromosome and ever get used to it. Right now I feel like I am constantly waiting for the other shoe to drop and I suspect that feeling, while it might lessen, will never really go away. So if you wonder what life is like with Vivian, I'd say this about sums it up.

©1987 by Emily Perl Kingsley. All rights reserved. Article printed with permission of the author.

I am often asked to describe the experience of raising a child with 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.

Monday, September 14, 2009

Overheard today while Lucia and Darby were having lunch together:

Darby: We took the babies to the doctor today. And me!
Lucia: Did you get shots?!
Darby: Yep! Right here (shows her 1 band-aid)
Lucia: Did you cry?
Darby: Yep! But only a wittle bit!
Lucia: Good job Darby!
There was more, but my memory is so terrible I can't remember what they said right now :( Hopefully it will come back to me soon! When it was going on it was adorable; they looked like two old friends catching up after a long time apart. Maybe that's how it feels to them when Lucia has preschool- like a really long time to be away from each other...

Thursday, September 10, 2009

A conversation with Darby last week.

Me: Dar-by. Wake up sweetie. Time to get up. It's almost time for dinner.
Darby: I don't wanna get up. Is it morning?
Me: No, but nap time is over. If you don't get up you won't be able to sleep tonight.
Darby: Momma my head doesn't feel good!
Me: Oh really? What's wrong with your head?
Darby: It neeeeeds more sleeeeeeeeeeeeep!