I read this little story on my friends blog. Someone I hope that you will keep in your prayers. She is pregnant with a well anticipated baby girl who has Trisomy 18. A chromosome abnormality that is 'not compatible with life'. We are praying that this baby is a miracle and proves so many wrong. She is due April 20th, and I ask that you please pray with me for this family, baby girl and all of the staff working for her. That they will have some very precious moments, days, and years with that baby. It is all in Gods hands and I hope he blesses them immensely. If you'd like to read more, here blog is here.
Here is the story. It was written by a woman with a child with special needs.
WELCOME TO HOLLAND
I am often asked to describe the experience of raisinga 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 are going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guidebooks 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 guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never 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, Holland has tulips, Holland even has Rembrandt's.
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 for your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, ever go away, because the loss of that dream is a 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.
written by Emily Perl Kingsley
There hasn't been too much going on here in our house. Lucas is getting over whatever it is he's been fighting. His giant tooth is still giant and working its way to the surface. And yes, I'm still freaked that my little baby is going to have a humongous tooth. Oh well. It should be the least of my worries.
We talked with the dietitian and she was a bit concerned about his weight, or lack there of. Skinny little sucker. He's 14lbs 3oz. Not that great. So she sent me some carbohydrate powder to add to his formula. So far, he's tolerating it. Well, I guess. He's not super gassy like he is when I concentrate his formula. But he's having diarreah like no tomorrow. I changed a diaper, he pooped in it. I changed it again, he pooped in it. That went on until 4 diapers later, I said, 'no more. You're sitting in this one'. (OK, so I didn't make him sit in it. But I did say it!) And yes, I even got pooped on tonight. Oh fun. So I'm not sure if this will get better, or he'll lose weight from pooping all day. I guess we'll see.
Tomorrow is Easter pictures. They boys are going to look so handsome. I can't even stand it. Hopefully they cooperate and we can get some good pictures. So I'll be sure post them whenever I receive them.
So that's it for now. I know I have more to say, more to write. But that's the story of my life. In school they teachers used to always say....' good student. Talks too much.' Ahh, great description of me. Maybe that should be on my headstone. Rachel, daughter, sister, wife, mother, friend, baker, talks too much. Nice.
Thanks for reading.