Tuesday, April 17, 2007


My mom has a great blurb: Whoever said life was fair hasn't lived it.

Ain't that the truth.

I was so excited to have a granddaughter. I wanted so much for her-college, boyfriends, a career. I felt that we DESERVED a healthy baby. Laura didn't smoke, drink, or eat unhealthy foods. She exercised daily, got lots of rest, and took her vitamins religiously. And even though Ava was unplanned, no family could have loved her or anticipated her birth more than we did. Enter Williams Syndrome.

I work in public health. Day after day after month after year I talk to women who, with their "fiances", are popping out one healthy baby after another. No matter the drug use, welfare dependency, multiple fathers, unemployment, chlamydia, siblings in foster care: they always manage to keep making more healthy babies. And bitching about how hard it is to be burdened with children. At one point I seriously considered taking a leave of absence because I HATED THOSE WOMEN!!!! I actually said to one complainer, "Well, aren't you LUCKY to have such a healthy baby!" It was all I could do to be civil, let alone give a damn about any of them. Sadly, if I let myself think about those days too much the rage comes back just as harshly as ever.

So what changed? I met all of you! Although we are all scattered, I know that a quick post or email will bring the support that I and my family need. I found this network because Teresa, WONDERFUL Teresa, sent me an email through the listserv with a link to her blog. It was the best thing that ever happened to me. Clare Bear's picture popped up and she looked like she could be Ava's sister. And then came Tatum and Erik and Brady and Szabi and Avery and Emerson and Abi and Daven... And suddenly I didn't feel alone or singled out any longer. Every accomplishment your kids' achieve gives me hope for Ava. Your tears and anger validate my feelings. I truly don't know how I could manage without you.

I am so proud of all of you, of us, because navigating these waters has been, and will continue to be, the hardest job any of us will ever have. Yep, even those of us who are just grandparents. It's ok to feel sad and angry. I like to think that we are a real help to each other, even if it is only online. Who else could possibly understand?

So, Nancy, please don't feel alone. Keep sharing your feelings and know that we are all in this together. 'Kay?

PS: This picture was Ava's very first. All I could say (between racking sobs) was, "Oh my gosh, she has Julia Roberts' lips!"


Nancy said...

Oh, God, you made me cry and smile at the same time.

Thank you.

Kerry said...

You rock, Kim :) And you said it all. Thank YOU for your support and kind words... it is always wonderful to see your name :)

Aspen said...

I know exactly what you mean. I too held a grudge against so many moms who were drug addicts, alcoholics and so on that had these amazingly brilliant babies. When I had lived a great life, had an amazing husband, had a perfect pregnancy...did everything right and WHAM. I was hit hard with WS. I love Daven dearly and wouldn't change a thing now, but the grudge still exists and it will be terribly hard to let it go.

Ava is a precious angel and you will realize that more everyday. Thanks for sharing your true raw feelings. We are all a great team!

Lisa R said...

She does have her lips ;)It is a blessing that Tatum is mine I do not think that my local friends would be handeling it as well....to think it could have been worse.
Yesterday while in the hospital I had the chance to read the USA Today...it said our generation has endured more stress and tragity then any other and a huge way we deal is support from the computer...I would be lost without mine and all of you...You are so right Kim. Thanks

Every minute counts.... said...

I have totally felt like yeeling at so many people it is not even funny. Even my own sister-in-laws! One has a little girl who she can't seem to spend any time with. The other has four kids that she can't wait to get rid of. I find it very hard to be nice to them on many occasions. How do these two women get healthy kids and the last sister in law and I get kids with major medical issues!
Thank you for your insight into being a grandmother dealing with WS. I really learn alot from you and your perspective. Thank you !!!!

Gua said...

I'm sitting right here- in your chair! The thoughts could have been typed on my keyboard! So many times I've looked at wayward mothers (I'm assuming a lot, I realize) and have known that they can't possibly, CAN'T POSSIBLY, know how very, very lucky they are. But then I look at who we all are, and I know I'd never trade places. Because the things that are under our control are very, very good. I'm proud of my daughter, my new son (didn't have a choice there, but he's a good one!) and really proud of Erik. And I have a very good life.

Jean, Erik's Gua