Sometimes I think it’s funny how we smile for pictures even when our hearts are breaking.
I wonder if everyone does that or if it was just me and Dave in this picture taken a couple days after our 21st anniversary that we spent at the bi-annual BBS conference in North Carolina:
Are those smiles a big, giant lie? Or is there just something inside, some part of human nature that wills us to keep going. To get up. To move on. Maybe subliminally our brains were telling our bodies that if we just keep smiling it will help us get over the fact that we realized more than ever before at that conference what our future holds.
What Lucy’s future holds.
And coming to some serious grips with that reality made that conference tough.
Every conference we’ve been to before has been uplifting and filled with hope. Maybe it was because Lucy was young enough that all the research was still so promising. We had time. We were “just on the cusp” of some serious retinal discoveries. Some clinical trials that were on the horizon we hoped would change the course of Lucy’s vision loss. Of the obesity that BBS kids battle. Of kidney and heart problems. But this year as Dave and I sat there watching slide after slide about gene mutations and insulin resistance our hearts sunk.
I want to be clear that the conference itself was just as good as ever. So many bright, wonderful people working their tails off to help BBS families. The BBS board members have worked so hard to make this happen and we are so grateful for their valiant efforts. So many good, strong BBS families full of love and hope and I think in general the families involved were uplifted like Dave and I usually are.
But reality just hit the two of us kind of hard this time around.
Lucy’s vision is getting worse. She still manages just fine, but sometimes it stops me in my tracks when she can’t see something very obvious. And I feel like we are always grasping at straws to help her with her weight and other BBS issues.
Not in my wildest dreams did I envision that my motherhood career would take me to Duke University where I would sit in a room full of families learning about neurons and cilia, all of us fighting with everything we have to hold on and digest the information, that we might grasp some sort of lifeline to help our kids.
But there I was.
(Those are just a little taste into the hundreds of slides that were shared.)
The bright spot of the conference was that Dave and I (along with some other fund raisers) got to give a giant-sized check with a portion of what we helped raise at the Turkey Trot last November (back HERE) to help some researchers who have started a new branch of research that is making some great strides to help BBS families.
So that is special thanks to many blog readers who donated and hundreds of others there on the actual Turkey Trot day.
(The majority of the money raised has gone to the Clinical Registry which is quite costly to get off the ground and run, and is off to the races with 300 registrants at this time. Pretty exciting. That portion in the check up there is going to those men up there who are working on that new branch of research…we want them to know that we as BBS families back them 100 percent by donating a portion of the money they need to get it going.)
This guy below has been helping BBS families since before Lucy got her diagnosis and we love him.
There are more and more discoveries about BBS all the time. When Lucy was first diagnosed there were only a few BBS gene mutations that they were aware of. Now they have discovered 23 of them.
And each of those different genes can have various genetic variants from that which helps explain why it is so tricky to figure out why each individual is affected the way they are.
I know a thing or two about all the work that goes into a conference like this since I served on the board for a couple years myself. It takes a lot of blood, sweat and tears to pull off something like this.
So grateful for all those people who help “mourn with those who mourn” and “comfort those in need of comfort” when the going gets tough.
Although this conference was a dark spot for our spirits since we came more to grips with the reality some of the research and clinical trials may not be fast enough to help Lucy, it feels good that there’s hope it will come fast enough to help some of these bright, wonderful kids and their families who we have grown to know and love over the years.