Tuesday, February 06, 2007

It's All Good

I read too much. Every day I check in (and on) my cyber friends to see how everyone is dealing with the dreaded Williams Syndrome. It seems that many of us feel that if our children can get this therapy, that supplement, that surgery, all will be well. I applaud everyone's hard work and diligence. But I am also realistic. (I am also perimenopausal, so take everything I say with a grain of salt - or estrogen, if you can spare some!)
I love my Ava Mae with everything I have, yet I know that there are some things that just aren't going to happen. Oh, we will see to it that she has every opportunity possible. She will have her surgeries, her specialists, her OT, PT, etc. She will be constantly and unconditionally loved. At the same time, I will not let myself be crushed when it becomes apparent that there are just some things she won't be able to do. Let me tell you why.
As some of you know, Ava had a paternal great aunt who had Williams Syndrome. Paula Jean Turner was born February 26, 1949 - long before Williams Syndrome had been "discovered". She was a beautiful little girl, but it became obvious that something just wasn't right. Her WS diagnosis didn't come for many years. She suffered the usual feeding issues, kidney problems, hypercalcemia, abdominal pain, anxiety, and so on. Early intervention was somewhat primitive in those days. Paula attended elementary school and later participated in "educational workshops". She lived at home with her parents until her death in May 2006 at age 57.
Never mind the negatives. Paula was so sweet and kind. She was truly a ray of sunshine. She loved being with people, and displayed so much enthusiasm for every good thing that came her way. She loved church, reading, family, music, and Ava! She could play piano, speak some Spanish, and seemed to enjoy life very much. Laura tells me that Paula never lost her ability experience pure joy. Oh, Mylanta! she would exclaim. Paula also had a long-term boyfriend, Bernie, who loved her forever. At her funeral, the minister told us that "Paula never met a stranger." What more could any of us ask of our children than to be universally loved?
It's so easy to get dragged down by all the negative aspects of this damned syndrome. I think all of us secretly hope that our children or grandchildren are higher-functioning, that they have a lesser degree of WS. I cry about it myself, especially when other people seem to notice that Ava is different. But at least for today, I am going to be grateful for Ava-just the way she is.
Love, Kim
PS: Yesterday Ava smiled at me and waved bye bye! My heart is singing!


Nancy said...

I have never had so many emotions at one time now that I love my own WS kid. It's bittersweet...some days more bitter, some days more sweet. I suppose they will be like that forever. It's an adjustment for sure, but there is a lot of sweet. Thank goodness.


Kerry said...

What a wonderful post. You bring out all the goodness and I thank you for that. Thank you so much!!!

Every minute counts.... said...

Beautifully said. There are many days that I think that people with WS have an ability to connect with others that some of us can only dream of having. They can bring so much joy and understanding without ever saying a word.


Gina said...

Thanks for the beautiful post!

Lisa R said...

Wow, Kim you made me tear up at work...not that its such a hard thing to do these days. Like nance said some day are more bitter and some are more sweet :)

Love You

Aspen said...

This has been the biggest emotional rollercoaster I have ever been on. One day I will have an amazingly SUPER day, and the next I will have a SUPER meltdown.

I know that at the end of this journey, we will have such joy in our precious children.

Thanks for your beautiful words.

Kassie said...

Wonderful post!