I don’t talk a whole lot about Vivienne’s special need because, well, most days it just doesn’t come up. She’s an amazing kid – bright, silly, happy. With the sassiest comebacks ever. And physically, despite her skeletal dysplasia and bilateral arm deformity, she’s quite capable. She does pretty much whatever she wants, in her own special way. But recently her… Read More
Gus. again.
Oh my, y’all. This little guy is still waiting for his family to find him. His file is with Lifeline and will return to the shared list at the end of this week if a family does not come forward for him. I can speak personally of Lifeline. We LOVE them and consider them to be one of the very… Read More
Gus
Look at this little guy. His name is Gus. And he is just one year old. And his special need is dwarfism. Ooooh, I can’t stand it. Don’t his little chubby, dimply arms look just like Vivi’s? As y’all probably know, our Vivienne has dwarfism. We still aren’t quite sure what form of dwarfism she has, as there are many,… Read More
sassy pants
This girl. Is so incredibly sweet. Smart. Loving. Adorable. There is not a person (or animal, for that matter) in this household that is immune to the allure that is Vivienne. And you can probably see why. Truly, she has enchanted us. Which is sayin’ something when it comes to the 6′ 2″ and 195 pounds of tough guy she… Read More
another visit to Boston
Today Vivienne met with the geneticist at Boston Children’s. Again. Not a whole lot was learned, though. Other than confirming that our girl is growing, along her own sweet little curve, and her legs actually look quite, well… normal. WOOT! And that, because of the discrepancy between her relatively normal legs, and her not-so-normal arms, our girl is quite possibly… Read More
gifted
I am just nutty about Vivienne. We all are. One of my favorite things about this little sassy pants is her ability to embrace life. She inhales it, at full force, every minute of every day. And doesn’t let anything stand in her way. A quality I think will prove to be essential for our precious girl as she navigates… Read More
Sunday Snapshot: {just as she is}
Things are better. Much, much better. I mean, how can they not be… when she’s around? Just look at her. Falling in love with this child has been the easiest thing I’ve ever done. And it’s because I do love her so, that I think her ‘diagnosis’ has been so difficult for me to bear. I found myself feeling fiercely… Read More
the elephant
There is an elephant standing smack dab in the middle of my brain. Until now, I just haven’t felt ready to really talk about it… despite the fact that it occupies the majority of my brainpower lately. And, other than when I am safely nestled in my husband’s arms and free to bawl my eyes out, I haven’t. I still… Read More
here to there
Wow. I am just mentally exhausted. Uninspired. It’s been so much harder to hear those ‘words’ than I expected. But, with all things that are hard to bear, I’ve just got to process it. Live in it. Embrace it, whether I want this for my daughter or not. It just is. It is who she is, and the truth is, I… Read More
how I love…
this girl. The news we received yesterday just solidified that, in so many ways. Vivienne has skeletal dysplasia: “Skeletal dysplasias are bone and cartilage disorders that affect the growth and development of the skeleton and result in short stature and dwarfism.” There is more to share, but I’ll have to collect my brain before I can do that here. I… Read More