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 “deliberate mothering” section and you’ll find much more info.).
People first and foremost.
I’ve talked a lot about Lucy’s friends and how they are heroes to me. Guiding her when she needs help, looking out for her in group gatherings, one of them has plans to do a bake sale coming up to raise money for the BBS Family Association. They are just the sweetest and kindest. Yes, I know I’ve mentioned the friends her age. But have I mentioned that Lucy has other friends who are adults? Have I mentioned that she has an aid that is assigned to her all day in junior high school? It’s amazing and she is the best and I love her so much. (Not that Lucy will accept much help much, she is so feisty, and that is a complicated story for another day), but I have to say our public school system is the best. And the people who help her at school are phenomenal. The crossing guard is always looking out for her, the security guy at the Junior High always makes sure she’s safe. The principal waves at her and knows her by name. I’m so, so grateful.
My friends are also Lucy’s friends and she knows it. We had a couple mornings when we were dropping off the big girls at college where our babysitter wasn’t available to take Lu to school and my friend offered to take her on her tandem bike and get her all situated. Have I mentioned it’s HOT here it the desert for tandem biking? And also that we have a crazy sidewalk to be maneuvered (back HERE). Ha! That good friend of mine even took pictures of Lucy practicing for me, and I love these pictures more than I can say:
Thank you Tonia! (And did I mention Bo Jangles is one of her best friends too?? Yep, she’s the best thing in the world to Lucy, and obviously a good albeit enduring and patient “practice helper” as well).
The second morning Lu was going to need help getting to school I happened to get in on my red-eye earlier than expected so I came back just in the nick of time for our bike ride. Love that Tonia was still here and snapped this for us:
Aw I love my girl.
Ok, so getting ready to post these pictures I realize I’ve neglected to talk about one more person and some medicine that are also helping Lucy in so many ways. There is a doctor in Marshfield, Wisconsin, who has taken BBS kids under his wing. He’s a nephrologist and he had a BBS patient years and years ago and decided then and there that he wanted to help this BBS community in a bigger way. He’s the one behind the clinical registry we’ve been fundraising for each year at our Turkey Trot. He’s the one behind the BBS visits we’ve made to Marshfield Clinic so many times. And he’s the one behind the clinical trial Lucy is part of right now.
She lucked out to be one of the patients involved in “stage three” of this trial to help BBS kids with their battle with so many of the things affected by that with the syndrome. This is why we’ve been traveling over and over again to Marshfield, so many doctor appointments in the beginning. We are now at the point where we only have to go every six weeks, but it’s been a LOT of travel up until this point. And we’d do all the travel all over again in a heartbeat over and over because this medication seems to really be helping. Not only has she lost weight, but she is so much happier. She is so much more agile, able to concentrate on life and other things aside from food, and is just thriving.
There are so many other things that we are thankful for every day with this new development, and if people are interested I’m happy to go into more detail, but I wanted to throw it out there because so many have asked about Lucy’s suntan. Yes, she does get tan in the sun, and sun, of course, is plentiful here in the desert. But one of the side effects of her medication is that the patients get darker skin. At first she was really bothered by all the comments about that suntan of hers, she doesn’t want to be different or noticed for anything particular. But she has learned to embrace it. We all just look at each other in jubilation at her happiness and her thriving spirit right now.
We are just so grateful for modern medicine. Who knows where this will all lead, but we’re grateful to be on this journey to figuring things out.