BBS

BBS (Bardet-Biedl Syndrome) is a genetic “rare disease” that affects approximately 1 in 250,000 people around the world. It causes all kinds of things to go haywire in the body, including kidney failure, heart problems, obesity, polydactyly (extra digits), and retinal degeneration (blindness). My brave, beautiful, stubborn, strong daughter is one…

I was talking to a friend the other day. A friend who also has a teenager with some special needs. It was so good to be able to relate on some things we are traveling through as mothers. The way our families have adjusted, heaved and shifted as the “special”…

Just wanted to connect people to the BBS Family Association Instagram page which is HERE. Because yes, today is Rare Disease Awareness day. And any type of awareness about syndromes is incredibly helpful because: Awareness = Care = HOPE. More awareness brings more doctors and researchers to the scene. Connects…

Remember when it was the first ever Global Awareness day for BBS? (Yeah, if you don’t, I wrote about it back HERE.) Well, we have our own little local BBS awareness here in the desert each year when we hold the Turkey Trot on Thanksgiving. One hundred percent of the…

When Lucy’s choir teacher asked me a few weeks ago to tell him more about what’s going on with Lucy, I realized we needed a little teacher meeting. Knowledge is power, and I realized none of her teachers really knew what was going on with this girl. So her “helper”…

I am going to see if I can start to stay a little more up-to-date around here. Like, let’s talk about what happened this last weekend. Started out with Lucy and I heading to Wisconsin for her doctor appointments. These mother/daughter dates are usually pretty awesome. I mean no one…

Halloween was just plain weird this year. I’m sure many can relate. Holidays are just different during this pandemic in general of course. But there was also some weird melancholy quietness mixed in to a holiday that used to be so amped up! Do I just remember it as magic…

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…