I Love My New Look, But I Hate it Too!

Arghh! I have to take the time now to go back through every single bleeding post on this site and click on "post options" and then "allow" because for some reason when I switched the template it defaulted to "don't allow, hide comments." Not only does this mean that you can't comment or see comments for older posts. It also means that everytime I write a new post I have to check that darn button again. And I can't seem to fix this default function.

Soooo, while I work on that. I just wanted to say what an amazing feedback from my column yesterday. I heard from people all over the world. Some with NF, some parents with NF, and some parents of kids with special needs. I heard about how thankful everyone was for my column, but I also heard some pleas for help and understanding. I've been working to respond to all of those emails and comments because I know how important and hard it is to reach out to someone.

One absolutely incredibly, multi-talented young adult with NF emailed me. Her name is Jenni and she's very self-deprecating - aren't we all? But not only is she thriving with NF she's got TWO (count em - 2!) blogs and is really developing an amazing voice and talent for writing. So here, from Jenni's baking blog is one of the funniest and most well-written posts I've read in a while. Who knew you could do yoga in the bathroom!

Getting Out of My Head: Food Version: Yoga


  1. DAra, Your coloumn was amazing. You should link all your columns to your blog. You are amazing. I'm sorry that your son was diagnosed with NF, but I am glad he was born into such a wonderful loving family as yours. I worked at a children's hospital for several years where we had a whole clinic for children with NF. It was really wonderful to see how the parents were able to form such a great support group for each other and the kids could bond with others who were dealing with the same things. Thank you for writing about NF and educating us all. I really admire your wisdom, honesty, and love. XOXOXOXXO

  2. I know. One of the most wonderful things about this hospital was the camps it had for kids with similar diagnoses and the support groups for parents. I think those things made all the difference. The community it created was so wonderful and supportive for everyone. I loved that hospital. And since you asked...I worked there as a grantwriter and I also wrote stories for their PR magazine. Inspiring stories about patient families and stuff like that. It was really great. I loved working there. But now I don't think I could keep up with a full time gig like that. I don't want to miss all the fun stuff with the kiddos when they are little. Not to mention homeschooling. That wouldn't work out at all.


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