Lucy had been really looking forward to that night. She doesn’t articulate it, but I think she is feeling more and more behind her peers at home. I think in her heart she was looking for something to hold on to just like we are. So it was so great to see her mixed in with those kids (and their dog who was instantly Lucy’s best friend) with that big smile on her face.
She was pretty proud to join in that throng of people, all welding canes just like hers.
Learning stuff like this:
…from good people like these guys:
…and these guys:
(those guys above are working on a clinical trial that helps combat obesity we are holding on to hope that Lucy will be able to participate in phase three coming up)
I’ve said it before, but these people are my kinds of “rock stars” (back HERE).
So incredibly grateful for them and all the information they flooded us with those two days. Dr. Haws is pretty incredible:
Lucy has been struggling more and more with autism spectrum issues (as I think the majority of BBS kids do) so it was interesting to go to this breakout:
There were lectures mixed in that I still, after so many years, cannot seem to grasp…so far over my head.
But man, I sure am grateful for all that mumbo-jumbo they know so much about and are pushing to use to help!
And even more grateful for this crowd who showed up to head to the “BBS family banquet” with us…which was really a picnic at a gorgeous park nearby.
This is how Claire felt about not being able to play soccer with everyone on the sidelines because of her recent surgery:
And this is how Lucy felt about having a couple cousins come join in the throng of BBS families:
Tim (the president of the BBS family association) gave out awards to a bunch of BBS kids:
And we did our best at a group “family” shot:
(It was the biggest gathering ever.)
Love these fellow BBS mothers:
And these good girls:
As we talked and our shadows stretched out further in the glowing evening sun all seemed right in the world.
Until Lucy had a pretty big meltdown.
She’s been having those more and more lately and we are in the throws of trying to figure out the best way to parent that. There have been some dark days lately. I am trying so hard to put myself in her shoes…her world getting darker and darker, friends progressing in ways she cannot, all mixed in with hormones that are seemingly on steroids in these pre-teen years and it’s a perfect recipe for some tough times. I am at such a loss as to how to nurture her in the right way but the best thing, at least for that night, was to let her just have some alone time in the trees by herself.
When she emerged she was all smiles again. Thankful for these cousins to help bring those smiles out.
More sessions the next day:
Doing what Lucy loves best during lunch break:
Maybe this one is more accurate:
But despite the fact that it’s tough to put your heart through that kind of heavy stuff, there’s something pretty wonderful about knowing there’s progress. No matter how small. And that you can do something to help (still the best thing in our minds as of now is raising money to help with the registry…so grateful for the turkey trot and other donations over the years).
There is nothing like knowing you have a whole army of friends right along with you. All those people in their red BBS t-shirts are so beautiful to me. And all the extended family and friends who love Lucy. Her awesome teachers. Her angel friends. And blog readers too who have lended so much love over the years (thank you xoxo).
I’m so grateful for our “village.”
And for all the backbreaking work that went into making yet another BBS family conference possible.