Life with Ella and Emerson

This is a blog dedicated to my beautiful daughters, Ella and Emerson. Emerson was diagnosed with a rare, genetic disorder called Williams Syndrome when she was 5 months old.

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Location: Wisconsin, United States

Tuesday, September 30, 2008

One Last Plea...

If you have a little time this week, please e-mail 1 or more photos of your kids or give me permission to use one from your blog. I am going to be working on the slideshow this weekend for the benefit and could really use a few more. So far I have 8 kids and I just really don't want every other picture to be of Emerson :)

Here is my e-mail: nbeaumier@yahoo.com
Thank you, Thank you, Thank you!!!

Wish us luck. We are starting to collect the silent auction items and I am starting to feel way over my head.

Wednesday, September 17, 2008

Help?

We are in the midst of planning our second annual "WS Awareness Event" to raise money for WS research and Dr. Bonnie Klein-Tasman from UW-Milwaukee. Last year, we raised almost $10,000!! Dr. Klein-Tasman is such a great resource and is really devoted to helping families with the dual diagnosis of WS and Autism. As we know, these are often the families in greatest need of answers and support. Dr. Klein-Tasman told me that this donation last year helped keep her lab focused on Williams Syndrome. She has many graduate and undergraduate students from all over the country that she is training and she can really help increase the pool of experts in the field. Anyway, here is what I am asking:
1) I wanted to do a "Faces of Williams Syndrome" slideshow similar to what Laura (Michaela's mom) did recently. If you could send me via e-mail (nbeaumier@yahoo.com) a recent picture or two of your child that would be great.
2) Also, I thought it would be really cute to have lying on the tables at the benefit a picture of your child along with their first name, age, age of diagnosis, and then a blurb about them. This can be as much or as little as you would like. It could be a snapshot of their personality and/or in depth what it means for them to have WS. Make it whatever you have time for. I just thought this would really tug at some heartstrings and also some pocket books. :)

Thanks in advance and check out our website at www.williamssyndromeawareness.com

Wednesday, September 03, 2008

Junior Kindergarten - Mixed Emotions

My sweet girl started 4 year old kindergarten today. She was so excited that she inhaled breakfast, got dressed and ready to go and then waited around for 20 minutes asking 100 times if the bus was coming because she didn't want to miss it. As I was ready to walk her up the block to catch the bus, she decided she wanted Daddy to walk her up. Are you kidding!? What!? No way?!?! All of these thoughts went through my head, but I could tell she was potentially fragile this morning so I sent her out the door with Daddy and shed a few tears alone. These tears surprised me because she has been sooooooo ready for school and I know will just love it, but I am still sad. She is so little and kind and sweet and pure-hearted. I don't want that to ever change. I want her to stay kind and for people to be kind to her. I am also sad for Emerson that she is losing her constant companion and playmate.

So anyway, of course I jump in my car and head to the school to make sure she makes it okay and doesn't get trampled by the hoards of children or end up in a 6th grade classroom. A bit paranoid, but again, she's so little. She did great, kissed me goodbye and never looked back. She is so ready to be a school kid and I am not quite as ready to let her go.