Thursday, January 27, 2011

Nicole Suzanne

I don't talk about this much, but it's something I think about every year on this day and today I thought I would share.

19 years ago today in 1992 Rominal and I had a baby.

Nicole Susanne was her name. She was named Nicole because we liked the name, and Susanne was for my mother.

We knew something was not quite right when I was around six months pregnant. I was measuring way too big for only being 6 months along.

We had a high-level sonogram done and it revealed that her stomach was enlarged. This meant that she wasn't processing the amniotic fluid properly, therefore I was carrying twice the amount of fluid that you should.

This was also a sign of down syndrome, which was confirmed once we had an amniocentesis.

We met with a local down syndrome group and prepared, as best as one can, to raise a daughter with special needs. We met the most wonderful family and a special little boy who had down syndrome. We felt we were ready for this added challenge and we anxiously awaited her arrival.

After a 2 1/2 month struggle with premature labor, she was born via emergency c-section.

Because of the extra fluid I was carrying, she had been able to twist and turn a lot when I was pregnant with her. The umbilical cord was all twisted up like a phone cord and she had a lack of oxygen throughout my pregnancy.

We kept her on life support until it was clear that she had no brain functioning and would not survive.

She passed away on January 30.

While this was an event in my life that shook me to the core, each year that passes becomes easier. Rominal or I will say to the other, "do you know what tomorrow is?" and then we do the math to figure out how old she would be this year.

As tough as that time was, I still would go through it rather than not. I'm not saying I don't wish Nicole didn't survive, because I do. I'm just saying that I prefer to look at the bright side of life (are you singing the Monty Python song now too?). This probably helped strengthen our marriage, and probably has made me a better mother to Bailey than I might have been had I not lost a child.

This poem appeared in a Dear Abby article sometime after Nicole was born and I cut it out and saved it. I still have it to this day and it still means a lot to me. Even though we never got to experience Holland, in our own way, we experienced a completely different place.
I'll share it with you now.

by Emily Perl Kingsley.
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.

Monday, January 24, 2011

Winner, Winner, Chicken Dinner!

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I made this quick and easy dinner tonight.

Yes, that's a Pillsbury crescent roll on the plate, and yes, that's a store-bought pasta salad. I should mention that I'm fighting a cold that Rominal has shared with both me and Bailey. So, the fact that I made dinner at all should be celebrated.

Here's what I did.

I started by mixing up some mayonnaise, mustard, and a bit of Worcester sauce. I then slathered this all over some boneless, skinless chicken.

I didn't measure anything, but it should look like this.

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I let the chicken hang out in the sauce for a bit, then I dipped it into some Italian style bread crumbs.

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I baked the chicken in a 350 degree oven for about 40 minutes, or until it was done.

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The inside was nice and juicy, and it had a great flavor.

I realize this isn't a gourmet meal, but it was quick and easy and it got dinner on the table.

And did I mention that I don't feel well?

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So, give this a try if you just can't think of another way to fix chicken. It turned out pretty good.


Thursday, January 13, 2011

I have arrived!

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I got a special envelope in the mail today. One that I have been anxiously awaiting.

It's kinda silly, but I was pretty excited about this.

Any guesses to what it is?

All right, I'll tell you.

It's this:

Starbucks (6) fixed
Do you recognize the logo?

Yes, that is a Gold Starbucks card. A Gold Starbucks card with MY NAME ON IT! (Do I hear oohh's and awe's out there? I thought so!)

I didn't even know they existed until my friend Melissa got one! Once I found out about it, it became my life's goal to get one myself.

Yes, I set my goals high and I go for them.

Sure, I may be a bit pumped up on caffeine now, and sure I might not be able to sleep for several weeks, but I have a Gold Starbuck's card with my name on it and all is good in the world.

Starbucks (12) fixed

Except that after seeing the picture above I realize I am in need of a manicure, or at least some lotion.

Sunday, January 9, 2011

First snow of 2011!

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We woke up this morning to rain. Lots and lots of rain.

But then around lunchtime, the rain changed to snow and it hasn't stopped snowing yet.

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Of course, Bailey couldn't wait to go out in the snow to play with her friends.

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The weather people are predicting that all of this wet, heavy snow will turn to ice tonight. Bailey is hoping for a snow day tomorrow.

(shhhhh, don't tell anyone, but I am too)

The bushes in our yard are coated with snow - and so pretty.
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Hope you are warm where you are!

And Erin - I think your blog trick for my pictures worked! Thanks!

Monday, January 3, 2011

Sausage and Roasted Vegetable Penne - Again

Ok - so this is a re-post because I remembered to take pictures the last time I made this dish. It really is quite good, and I want to encourage everyone to try it. My original post was here.

This is a recipe by Melissa d'Arabian on Food Network. The original recipe is here.
I made a few changes, which I will indicate below:

1 sweet onion, cut into wedges
1 medium zucchini, sliced in 1/2 lengthwise
1 red bell pepper, cheeks removed
1/2 pound button mushrooms, stemmed (nope - did not include these - mushrooms are fungus. Nothankyouverymuch.)
2 1/2 tablespoons olive oil, divided
Kosher salt and freshly ground black pepper
1/2 pint grape tomatoes, washed and dried
2 sweet or hot Italian sausages, thinly sliced or casings removed (I happened to have chicken with asiago cheese sausage on hand and it worked great.)
1/4 cup white wine (not sure how much I actually put into the pot, because I drank what wasn't used.)
12 ounces whole-grain penne, cooked according to package instructions, 1/2 cup pasta water reserved (Bailey wanted pasta shells, so that's what we used.)
Freshly grated Parmesan, for garnish

Preheat the oven to 400 degrees F. (I roast my veggies at 425 degrees)

In a bowl, toss all the vegetables, except the tomatoes, with 1 1/2 tablespoons oil. Season with salt and pepper, to taste. Arrange on a baking sheet and roast, until caramelized, about 30 minutes, turning vegetables halfway through the cooking time. In a small bowl, add the tomatoes and the remaining olive oil and toss to coat. Season with salt and pepper, to taste, and add to the baking sheet, at the halfway point of cooking, to caramelize. (I always do this on parchment paper, mostly because my cooking sheet is nasty looking, and because it makes for easy cleanup.)

Meanwhile, in a large skillet over medium heat, add the sausage and saute until cooked through. Turn up the heat and deglaze with white wine. Once the vegetables are cooked, cool slightly, then coarsely chop. Add the vegetables and any pan juices to the sausage in the skillet. Toss in the cooked penne, adding reserved pasta water, if needed, to moisten. Season with salt and pepper, to taste, and serve in bowls topped with Parmesan.

Here's my cut-up chicken sausage. I removed the casings, because they gross me out.

Here's my veggies after they have cooked for a bit and I just added the tomatoes. They were going back into the oven after this shot.

Yummy browned sausage.

And sausage with wine. Yum!

Here's the final product again. We all love this dish.