Thursday, December 06, 2007

Feeling the Love

I grew up last Saturday.

The Great Lakes region of the Williams Syndrome Association held a holiday gathering in Troy, Michigan. Dominick, Laura, Ava, and I packed up the car and drove a couple of hours south to our very first WS gathering. All the way there Laura kept telling me she was very anxious, sweaty palms and all. I, of course, being wise and mature, assured her there was nothing to be
afraid of, that we were going to have a great time. Besides, the party was being held in a church, and how scary could that possibly be?

When we walked in the door I was humbled, rendered speechless. All these faces, WS faces, and I was momentarily stunned. Ava's peers. This is her future. This is as good as it gets.

The next thing I knew, Ben Monkaba, beautiful Ben, welcomed us personally. A huge grin on his face, he thanked us for coming and directed us to the check-in area. Next, a lovely young woman (also WS) offered to take our cake that we brought to share. Another young lady appeared and took our coats. And all of us felt IT. That church was literally bursting with love. I have never experienced anything like it, ever in my life. Even Ava felt it. She was in her glory, smiling and hugging anyone she could. She even suckered Terry Monkaba into cuddling with her and carrying her around the room.

After we got settled and the introductions were out of the way, music therapy began. Ben Monkaba and Louie, the music therapist, led the group expertly. Everyone joined in, even the kids with hyperacusis. They just sat at the back of the room. We sang Christmas carols, shook our jingle bells, and just had a rousing good time. Ava didn't quite know what to do, but I could tell she was thoroughly enjoying the music. She was swaying to the beat and just taking it all in. Heck, everybody was loving it. We took lots of pictures, but I don't think it is appropriate to post them without consent. I wish I would have thought of that before the party ended!

We met a number of really kind people, exchanged some phone numbers, received great advice, ate lots of yummy food. It's a brotherhood (or sisterhood), this WS thing. By virtue of having a child with WS, you belong. No questions asked.

The evening was capped off with a live band, of which two members have WS. Ben Monkaba kicks butt on the drums! It was so cute. The teenagers were dancing next to the stage, arms waving as though they were at a rock concert. I half expected to see some Bic lighters flashing. Even Ava got up and danced, toddling along with some of the older folks. It was a beautiful, enlightening, and comforting evening.

WS is not the worst thing that can happen.

Update: Ava is spontaneously standing up and walking these days. Not all the time, because crawling is still so much faster. Still, she's progressing now in measurable ways. She has also learned how to open cupboard doors. Ouch.

Her surgery is scheduled for December 13. Please pray for her. She is our world.


Katie said...

How absolutely fantastic!
I got those goosebumps Laura felt just reading about it - jumping headfirst into the unknown but honest glimpse at the future... nervewracking.
I am so glad everything went so well!
I am praying for Ava, and of course you.
take care,

Ava Jewel Leilana said...

how wonderful, i look forward to attending a ws gathering someday. I will pray for you and your family and will say an extra prayer for your Ava.

Heather said...

Your story has me bawling my eyes out right now. I never felt like we belonged anywhere until last May at our first WS gathering. It was happiness like we have never felt before. Caleb was just overjoyed. I was so nervous, but When we all met, it was like family. I mean, it felt like we were actually family. So much understanding and love. Not feeling like you need to explain why your child acts a little differently. No akward questions or staring. It was amazingly beautiful! Thanks for sharing, and I'm so glad you went. Love, Heather

Amy said...

Awww, fun! I wish I could've gone, Troy is about three hours from here. Somehow I keep missing the get togethers! Argh!

Julie said...

It sounds wonderful. I am so glad you got to go. I went to the conference in September and there were alot of teenagers there. They were an awesome group of kids. All smiles. It helped me look forward to the future with Noah. He is going to grow up to be a great kid, if I can just get him to stop biting. :)

nichole said...

I pray for Clare and all of her blogmates - including Ava - every night. I will most definitely have Ava in my thoughts on the 13th.

Nicole said...

What an amazing post. I am very touched by your experience and cannot wait to go to a meeting like that myself.

I will be praying for sweet Ava and her wonderful family. Take care.

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Every minute counts.... said...

I want you to know that the feeling you are talking about is why I volunteered to be a Region co-chair. What better feeling than a room full of love and you decribed it to a T.