Thursday, May 27, 2010

A Word of Thanks

Oh. My.

OK, I need to take a sec here and catch my breath. A minute ago, I just finished posting about my cool crocheted shawl and blahblahblah and as I was about to skip back over to ravelry before heading off to bed, I noticed this:

Someone made a donation to the Spina Bifida Association of Northeastern New York through my firstgiving page. A hundred dollar donation.

I wish I could thank this person by name, but the donation came in anonymously, at least as far as I could see. (Can you tell this is the first donation that I've ever gotten?) So, Mr. or Ms. Anonymous, my most sincere thanks go out to you via this post. You truly took my breath away.

For those who might not know, my younger daughter, Little Z, has spina bifida. For those who might not know what spina bifida is (and I had never heard of it before Little Z was diagnosed), it's a birth defect with the potential for some absolutely horrific consequences: profound cognitive delays, paralysis, hydrocephalus and more. Little Z is tremendously lucky that she's managed to dodge many of the worst effects of SB, and we are eternally grateful for that.

We're members of the Spina Bifida Association of Northeastern New York because of Little Z. SBA of NENY has been a lifeline for us, and we try to raise what funds we can so they can keep helping families like ours. I could prattle on and give statistics about how many families they work with, or how much information on SB prevention they've distributed, or the advocacy work that they do. But, that's not the real face of this organization.

It's this.

When Little Z was first diagnosed with spina bifida, when I was just 20 weeks pregnant with her, the doctor who made the diagnosis told me flat out that I should schedule an abortion for the next week. No suggestion of a second opinion, no attempts to find out the extent of Little Z's neural compromise, nothing. When Little Z was born (in a different hospital with a different team of doctors), so much of our energy was focused on helping her get well; what little we had left over went to her older sister, Big Girl, who was a trooper throughout that difficult, difficult time. Instead of the joy and excitement that accompanies the birth of a baby, all our friends and relatives were asking how Little Z was faring -- were there infections? complications? setbacks?

And then, our welcome packet from SBA arrived in the mail. It contained lots of information about spina bifida that we desperately needed, and it even contained a very sweet gift: a CD of lullabies. But, most importantly, it contained a welcome letter. And that letter began, "Congratulations on the birth of your baby!"

God, I needed to hear that. In all the whirlwind surrounding Little Z's birth, I don't think anyone actually congratulated us. No one omitted it intentionally, no one was trying to be unkind or thoughtless, but everyone -- us included -- had other, more pressing thoughts on our minds. And I had no idea how much I needed to be congratulated on the birth of my precious baby until the people at SBA did it.

We raise funds for SBA because they need to keep their doors open. They need to keep educating, advocating, and yes, congratulating new parents on their precious babies who just happen to have spina bifida.

I'm incredibly moved that someone I don't even know has donated to a cause so near and dear to my heart. I don't have any other words but the ones I've already said: Thank you. Thank you. Thank you.

1 comment:

urban muser said...

A nice post. You sound like a great mom!