Tuesday, May 31, 2011

A Sad Day in the World of T-18

I just found out that Alice, a little girl with T-18, passed away this morning. Her mother, Sara, was one of the first to reach out to me with Lily, and we have spent the past two years emailing each other back and forth, airing our frustrations, celebrating our joys, and sharing advice. I consider her my friend.

It was Sara who shared with me her experience with bottle feeding Alice when we were trying it out with Lily. I can remember when we went to Tennessee when Lily was about six weeks old and finding out that Alice was turning one and how I thought it was such an accomplishment. Sara and I shared many a story about vomiting and constipation and congestion and how absolutely frustrating life raising a T-18 child can be, but we seemed to be good sports about it. That's one of many things that endeared me to her. And Sara, like us, just wanted life to be as normal as possible for Alice, and that, too, endeared me to her.

My heart breaks for Sara tonight, and I come to this blog, not to dramatize, but to sort out my feelings and lift them out of my self. Oh, the fragility of life. . .

And Alice. . .such a beautiful, curly, blonde-headed little girl. She gave me such hope for Lily. Such a fighter. She would have been three on Friday.


Dear, little Alice, fly high my sweet child. Kiss all of those other angels you meet tonight. You will be greatly missed.

Monday, May 2, 2011


I'm loving this CSA that we are members of! (Check out our farmer's CSA here) Besides providing us with tasty, and of course, nutritious, fruits and vegetables, it seems to be providing in a different way--feeding my soul.

Last week, one of the items in our box was beets. Now, I don't know about you, but I know approximately two people who actually like beets. I'm not one of those people. I'm really not being fair, though, because I've never tasted them. That's right. Never. Yet I still will say that I don't like beets. I've actually had this fear of tasting them.

But here they were, in our CSA box. I guess, you could say, I had a few choices in how I was going to deal with these red roots. One, I could just easily throw them away, but I felt that would be a waste of our farmer's hard work. Two, I could give them away, but like I said, I only know two people who like beets, and they don't live in the Charleston area. Three, I could give the beet a chance.

I chose the third option. That meant looking online for recipes. Now here's how I feel about recipes. There are some that, no doubt, will be delicious. Others, there's definitely a risk, but hey, if someone out there says their recipe is good, it's possible that it actually might be good. You just never know. And then, there are some recipes that the first time, they actually turn out delicious, but then I try and recreate them, and well, they just aren't that good the second time around. I wondered which type of recipe I was in for.

Dealing with these beets has a similar flavor to dealing with a child who has Trisomy 18.

Can you see where my analogy is going?

I don't know that many people who actually want a child with Trisomy 18. But sometimes, just like with the beets, a person is going to get that child. That person has choices. One, throw the child away (terminate). But the way I see it, that would be a waste of The Farmer's good work. Two, give the child away (adoption). But really, how many people want a child with a disability? Three, give the child a chance.

Of course, with option number three, the parents look online, and they see that the outcome isn't guaranteed. There's definitely a risk. Some will have a child that has mosaicism, let's say, or doesn't fall on the severe side of the spectrum. Others won't be as fortunate. They will either face a miscarriage or stillbirth, or the child may not defy those grand odds. Even if the child lives, he or she may have severe problems. For those who do defy the odds, one day, everything is going well; the next, everything comes crashing down. Nothing is guaranteed.

I chose to give the beets a chance because I wanted to live adventurously. I didn't want to miss out on something that might actually be delicious. I added some juice, and Dave added some sugar. Actually, they were a sweet surprise.

I chose to keep Lily for the same reason. I wanted to live adventurously. I didn't want to miss out on something. . .delicious. . .in my life. I add lots of hope and love and patience, and Dave does the same. And occasionally, we throw in a little sugar. (Well, actually, we throw in a LOT of sugar ALL the time.)

Her life with us has been a sweet surprise.