I few months ago I took my little girls to the zoo.
I love to have the chance to concentrate on my kids a few at a time, so I was excited. So were they.
But I was also nervous.
You see, the trip was planned so that we could meet up with a family I met through this blog...a family with not one, but two children who have the same syndrome Lucy does.
Their mother (Mary) is quite amazing. She has been dealing with Bardet-Biedl for a long time (her oldest with the syndrome is sixteen). She has started a website and she puts together a conference each year for families who deal with this syndrome to get information and support (I'm going this summer).
It was wonderful to meet her and to get energy from all she is doing. And her girls were so sweet and well-adjusted...so cute with my girls.
But sometimes quite frankly it scares me to confront the issues Lucy may have to deal with.
I know I need to be educated about it. But sometimes it makes worry fill me up to overflowing. Mary's girls have many obstacles in life. Probably the toughest thing for them is their kidney issues. One of the girls had to have a kidney transplant, the other dialysis. One has a leg that grows more quickly than the other necessitating specially made wedge shoes for one foot. The older daughter uses a cane and has lost much of her peripheral vision.
There's a huge, wide spectrum of how Bardet-Biedl affects kids.
And we just hope we can learn enough and be aware enough that we can be prepared to help Lucy any way we can.
I'm thankful for Mary's example in doing just that. She doesn't seem to even get phased by all this stuff...she just pulls up her bootstraps and does what needs to be done to help her girls.
Because, man, we sure love that girl.
Thanks Mary, for all the information and help.