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.
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.
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.
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.
Thank heavens for good friends who "get" this whole BBS business so well since we are all in it together.
Over the years we have shared a lot, these families and us, and this time in particular their camaraderie meant even more than ever to me and Dave.
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.
And who knows, we are still hopeful all this research will still be able to help our girl some day even if it's a reversal of some retinal degeneration (that is a huge possibility...we hope!)
We are so grateful for this Lucy girl of ours. She has changed our whole family for the better. We learn from her every day. And man alive that girl has so many supporters and people who adore her and would do anything for her.
But all this time later I can still hardly hold back the tears of desperation that linger from those days we spent at Duke University where we realized more than ever that the buck stops at us. Sure, there are many larger forces at work that I'm confident will make a difference somehow some day. But our responsibility as parents looms large and ominous as we realize there will never be a time when we can stop pushing. Bigger issues await as Lucy grows older. With friends, learning (this usually perfect score girl is coming home with so many red-marks on her math papers as she is trying to grasp the new 4th grade concepts), how to maneuver as she grows older with lingering vision, healthy eating habits, and a whole slew of other things we worry constantly about.
I like to talk about all the joys of parenting on this blog. But the hard, cold truth is that amidst all those joys that are so apparent and real, sometimes parenting is a heavy load.
And the buck stops at us. I hope I can remember that God is there to help us carry that load.