Tuesday, July 1, 2008

CdLS conference



I give up. I've tried for two days to gather my thoughts and write about a tangle of emotions after the CdLS National Conference in Chicago. I went for the profound, the conversational and the funny. I weighed a meditation on my struggles with faith and surrender. None worked. So what the hay. When in doubt, lead with the facts:

  1. 85 children, 125 families and a whole lot of love. It was overwhelming, comforting, heartwarning, relaxing, sad, powerful and sometimes a little scary. I'm still putting my mind around everything, but there's no doubt I'm glad I went. Left to my own devices, without the expectation of disapproving tut-tuts from Mo, I probably would have chickened out.


  2. Hope is a party girl. After cloistering her for months during cold and flu season, we're rapidly discovering she digs the night life. Truly the belle of the ball, Hope was the youngest and smallest child at the conference. Strangers stopped to take her photo. A photographer asked to be her agent. It was wonderful to be in a place where people appreciated Hope only as a true-blue cutie, where we weren't on guard for the inevitable follow-up: Why is she so small?


  3. It's true: There is a vast spectrum of affectedness with CdLS. I had thought it was bunk. We saw children who we wouldn't have suspected had any condition. We saw those with profound disabilities. I spent altogether too much time trying to size up Hope and determine where she might fall in the mix. I immediately felt guilty, as though I'm setting conditions rather than simply accepting the unknown. But I'm a parent. I worry.


  4. Grandma Clem is kick-ass at the license plate game. Mo's mom went along for Hope's first big road trip, loading the Oldsmobile Silhoutte with junk food, cheesy books on CD and a yellow highlighter that never strayed far from the map of the United States. Lookit! It's Missouri!


  5. CdLS is heady stuff. We caught a fascinating but too-brief seminar on research that made us want to rush for our biology books. I always wondered how 1 mutated gene can cause so many issues, from short stature and reflux to curved eyebrows and small feet. I naively assumed each of the 30,000 human genes controls specific traits: One for blue eyes, one for bad posture, etc. Nope. The gene that goes astray to cause CdLS is something of a regulator. Its job is to tell a slew of other genes how much to turn on and off as life is formed. How much is lost in the translation could determine the level of severity. And there's hope. More research = a chance to pinpoint how the gene interacts with the brain and develop drugs to actually treat retardation. It sounds crazy, but it's exhilitating.

8 comments:

Misty said...

WOW! i keep hearing that the 'gene' part of the seminar was fascinating and it really sounds as if it was. i am so glad that you all got to go. thank you for sharing what it was like. i am hoping to go in two years... we'll see what life brings us!

p.s. LOVE the picture of her in the sink! :)

Pam said...

So glad you guys had a good time! The pics are precious...she was always super cute, but man oh man...she a stunner now! Love the pink bathing suit!!
miss you guys! Give Hope a smooch and a sniff for me!
xoxoxo
Pam

Lisa said...

I'm so glad you were able to go, and I've been waiting for those "profound thoughts" because I figured you'd have lots of insight. I'm sure it was so emotional/sad at moments but also inspiring at other moments. We're very sad we missed LPA convention in Detroit. We were there a few days beforehand but had to leave the day the convention started. Major bummer. Yes, the Roloffs were there!

Karen said...

Awesome recap, beautiful photos! Wish we could have gone, but I was afraid to travel this close to my due date (and I also don't have any extra vacation time apart from my maternity leave). Where is the conference supposed to be in 2 years?

Anonymous said...

Hi Karen... I think it's in Dallas. ;)

Joel

Sonia said...

I'm glad it was a positive experience for you guys. The pictures are awsome and Hope is just adorable! We are also hoping to make it to Dallas in 2 years. this is the second time we aren't able to go to a conference so third's a charm... we hope!

trisha said...

I really have to stop reading these posts, becuase they make me cry

trisha

Sandi said...

Love all the photos! I enjoyed meeting you all at the conference. Hope is absolutely adorable :-)