Where do I begin? I know it's been awhile since we posted.
Lots has been happening...but definitely the most exciting (and absolutely overwhelming!) event of the past two weeks was the CHARGE syndrome international conference. Mom (aka "Grammy"), Maxwell and I headed to California on Thursday morning and returned late Sunday evening.
I will write more in the future about this conference because quite honestly I am still wrapping my thoughts together about all that we experienced. In a nutshell, it was intense, overwhelming, amazing, wonderful, frightening, supportive, funny, eye opening, loving...and the list goes on and on.
It was such a joy to meet our CHARGE "family" in person and get to experience the joy of each other's children. There definitely is quite a bond among us...and I don't know what I would do without their love and support.
While it was so incredible to be surrounded by people who truly "get it," it was also eye opening to see the probable future ahead of us. The extreme behavior issues probably caught me off guard the most. The weekend was definitely filled with "take your head out of the sand and face reality" moments.
And it was also filled with many inspiring "we can do this" moments.
For all that these amazing children and adults endure, it truly is incredible to see how much they overcome. For example, it was mentioned several times in presentations that truly these children should never be able to walk. Their missing vestibular system, poor eyesight and vision and extreme muscle "floppiness" are horrible barriers to being upright and mobile, yet a good amount of individuals with CHARGE do overcome and walk. They beat the odds time and time again.
So yes, it was an absolutely incredible weekend for learning, learning, and learning. (But far from a vacation though, that's for sure! Maybe next year Max will be ready for that!)
I promise lots and lots of photos if/when my camera is found. I was taking a gazillion photos of Max in the airport and plane (of course) and tucked it into a seat pocket. I am hoping, hoping, hoping it is found quickly!
P.S. We missed you Ellen!!! :)
5 comments:
Sounds like you had a great time and learned lots Amy, I hope Max is feeling better soon. Samantha
MISSED U TWO hope the camera isnt still in the plane thing id love to c pics of the conf of max of eva of everyone
Glad you guys had a good time, Amy, although sorry to hear that Max got so sick his last night there and still isn't feeling well. Your description of the conference sounds just like I felt when we attended the one in Miami two years ago. It's a wonderful, amazing experience, yet deeply overwhelming and emotional at the same time.
Hope Max is feeling better soon. And I hope they find your camera--would love to see your photos!
Hugs,
Leslie and Katie
Amy, what an emotional weekend for you. I'm glad you got to see the positive things, too. Thank you for educating ME so much about CHARGE as well as the special needs community. You are truly going to change things, and create such a good future for you, Max, and your future family. I'm so sorry you forgot your camera. I'll pray for it to be returned, for you to get some rest, and for Max to overcome his bugs quickly. You're doing an excellent job with everything, Amy. :)
I HOPE YOU GET YOUR CAMERA BACK!!! You are the only one (Jeremy might have got one or two) that got pictures of Max, Eva, and Evan on the couch together and I didnt get one because my camera died before we got that pic. You little lady and that camera are trouble....LOL!
We had a wonderful time meeting you and Max he is a sweetheart and you are so sweet and funny. I hope when you come next time we can all go out to dinner again.
Hugs,
Crystal and Eva
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