It’s the middle of January, the glitter from the holidays is all gone and I am in the trenches of Rettland. Between seizures and appointments trying to organize food for the family and be responsible with our finances. It would be easy to get down but then I look around. I see close friends, therapist, teachers, researchers and many others that all make this crazy life the beautiful mess that it is. One of those people is Kaycie, a designer that created a beautiful functional scarf for her niece that has Rett syndrome. It is often the little things that make a big difference. For us, having a cute scarf for Claire to wear out has given her great confidence, like any girl would feel rocking some new hot fashion. Kaycie has generously offered to to let us giveaway a certificate for an Angel-Scarf.
How can you win? Simple, tell me about somebody that you’ve met on your adventures in Rettland. Maybe a new friend, another mom, a doctor that has changed your life, a stranger that was compassionate beyond expectation. Just share your story of the people in Rettland.
-If you blog about somebody post it to the wall on facebook
-Tweet or Instagram your story with the #rettland
-Comment on this post
Whatever you do, share it by midnight on Saturday January 24th. I will pick the top three stories and Kaycie will then pick a winner to be announced the following Tuesday. I can’t wait to hear about the great people from many different corners of Rettland.
Disclaimer: I’ve never done this before, if I have left something out or if there are any problems, email me at colleen@rettland.org
Colleen English 
We just love Rettland! It’s a wealth of support, knowledge & awareness! Teachers, paras, and therapist are welcome and encouraged to join. It’s simply amazing and helps all of us on the team approach to better out girls life’s as well as our families!
There are so many people I’ve met this past year that it’s hard to chose only one that has changed me/us. A year after Gabby’s diagnosis I attended the 2014 Rett conference and was instantly connected with a mom from Ohio, Colleen. We hit it off, we talk through Facebook and email as regularly as SN parents with busy lives can, and our daughters have met and get along great. Colleen is so supportive, helpful, down to earth, realistic and so loving to everyone. She’s given me inspiration and ideas in ways to help Gabby, and I couldn’t be more grateful to have her and her family in our lives. I would still be stuck in the “where do I start/what do I do” phase if it weren’t for Colleen’s encouragement. Now I’m wondering what more I can do for the Rett Community and how to make things more tailored to Gabby’s needs. It’s incredible what inventions Rett parents have come up with to help their girls!
Sara, I love this and the special relationship that you have with Colleen, you won! Please email kaycie@angel-scarf.com and she will get you set up with a certificate to pick out an angel-scarf. Thank you for sharing!
OMG! Thank you!
I’ve met MANY AMAZING people in Rettland, but the most influential person I’ve met is not even someone I like. As a matter of fact, I think he’s a meanie. Dr Olaf Bodamer is the geneticist who diagnosed Bea with Rett syndrome. He looks like a direct descendant of Leif Ericsson, but I digress. When he diagnosed her, his exact words to us were “this is not corrective. Take her home and make her comfortable. She will never speak again and she probably won’t walk. And she will never be able to control that (pointing at her hands).”
Our motivation changed that day. Connecting us to the Rett world gave us hope. Hope gave us motivation- the motivation to prove him wrong. We push her and ourselves making it as uncomfortable (and CRAZY) as possible, and in pushing we’ve gotten to know her clues, as well as communicate WITH her. She’s even destroying the limitations he placed on her that Wednesday. She’s a completely different child now because of it. She’s happy and interactive. Gone are the days of furniture fitted with pool noodles because she would constantly bang her head against things in frustration. She can communicate and participate in our everyday family activities as she should. And all because a guy with a bunch of degrees said it couldn’t be done.
Sue I love this! Not that the doctor was so horrid but at how you’ve used it, so very inspiring!
Sounds weird but the person I have come to know best from being in rettland is my self. My real true self. I fear I would have been such an ass of a parent had Rett syndrome not reared it’s head. I’m not perfect at parenting by any means, but I know that I’m way better at this-and a better friend and wife, because of living in rettland.
Ps: you are second place colleen. 😍
I have loved getting to watch you find yourself as you’ve adventured across this crazy place we call Rettland, I am so proud of you friend! Love you ❤
Amazing ideas. I have been blessed to have been working with the most precious rett angel imaginable. Along with her amazing parents. They had a very short time with her before she started regressing, and I have had a wonderful few years with her and have seen how this can affect the most amazing smart individuals. I love everyday I get with her, and would love to see these beautiful creations on our beautiful rett angels!!
Angela, you are among the most treasured people in Rettland, those that are there not because they have to be but because you choose to be. So glad that this family has you to help them on this journey.
I think Paige and Erica from Katie’s clinic…they saw me at the most disastrous point of my life and I had never met them and they opened their hearts and immediately included me in their circle and just showed me love…lots of it. Erica still continues to be my go to person for any all questions silly or not and she never makes me feel bad for taking her time and always responds right back….no matter how silly my question may be. She has been my rock through this awful time where i was, and still am full of questions and doubts and fear. I think I love her 🙂
Shirin, Thanks for chiming in. I can’t agree with you more! Erica and Paige are made of some special stuff and I am so glad that you are connected with them! It’s good to have you here in Rettland with us.