BBS

Ok, really “two days” in the life, but from the time we leave to the time we get back it really is close to 24 hours. We do these visits lickety-split. For about a year now we have making this regular trek to Wisconsin as part of a clinical trial.…

I’m so grateful for all the things available in this day and age for a kid with a syndrome. (If you are new to this blog and want to know more about Lucy’s syndrome, click in the “about us” section above as well as the “parenting special needs” in the…

I have sent four children off to junior high school, one by one.    They planned out their first-day-of-school outfits.  They poured over the supply lists.  They packed up their backpacks overflowing with Kleenex and Clorox wipes after trips to Target and took off with their little packs of biking…

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…

Two different stories merge into one right here.  At first they may not seem BBS-friend related but just wait for it 🙂 First: Last year we had a pretty spectacular fund raiser at the elementary school.  It was a “run” where kids got “sponsors” who would pay them for as…

Elle’s friend is an exceptionally incredible singer. I’m telling you, she’s so good that pretty much every time I hear her I’m brought to tears.   She has recently teamed up with this really cool organization called “Cinematic Pop” which is founded on the premise of mixing classical music with…

Last month I got to go visit with Lucy’s Braille teacher at the school.  We had only emailed up until then and from the first email I knew that I loved this lady!   I honestly don’t know how in the world we have lucked out to get the most…

Over the years since Lucy got her BBS diagnosis Dave and I have had opportunities to go to a few BBS conferences where we have met so many people we have fallen in love with. That is so easy when you can relate so much with the BBS commonality. There…

Today I’m deep into the task of updating “I Love Lucy Project” information in preparation for the next annual Turkey Trot coming up (click here to see what happened last year). Makes me excited that we can help from afar and that half of the funds will once again go…

…a day late… I was wondering if there was an update on the donations for the I love Lucy project that you initiated last fall? Somehow I couldn’t find it on the blog but I would love to have an update! {Dave and I did a kind of “call to…