Emma was excited to go, telling Toby "Toby! We're going to meet people we don't know!!!" Can a person get more sociable than that?! We knew they had a childcare room and as expected, Emma could not wait to go. She was engaged before I even got Toby out of the stroller!
Scott stayed with the kids for a while, until Toby would de-cling! Before I left I saw a shy little girl come in with her mom and asked Emma to make friends with her. She did not hesitate, loving to make friends (and be "in charge" if possible!).
I went to a session on "Being Positive" lead by an outrageous and dynamic woman from Venezuela. She talked about basically loving yourself - and having Moebius herself, I am sure she was inspiring to the people with Moebius in the room. She inspired me!
This quote was a great mantra for every woman and one I will share with Emma in the future.
I also attended a session by Dr. Kathleen Bogart, a social psychologist who has Moebius. I was able to ask about when/how to discuss Moebius with Emma, because is was very clear that we need to help her address it with her peers. We learned that since the facial difference is an "elephant in the room", it is best to bring it up lightly, so people can see past it and not be fearful.
We have really not emphasized Emma's differences with her, so we need to broach it gently so she does not become self-conscious or insecure. We know friends and family, who show her such wonderful love, will continue to show her that she has a place of safety and normalcy.
Having had her hair done, nails painted and barefoot, Emma (and Toby) joined us for lunch. As you can see here, the conference so far had only added to her high spirits! (and the water coolers added to her water consumption!)
I went to a session on sleep disorders. I was pleased that Emma's "bad dreams" do not seem in the same league as the "night terrors" so many kids experience. In fact, it is more likely she is just playing us, to get into our bed in the night! We'll be addressing that one soon!
After the afternoon childcare Emma had a rainbow and
As you can see, the kids had fun while we waited for Emma to have her eyes checked. This was part of a genetic study on eye issues, that also includes Moebius Syndrome. We signed up in 2008 and updated this weekend.
During the eye exam, the consultants were getting very animated, and repeating certain tests over and over (fun ones, with toys and watching eye movement - nothing tough!). When I asked what was up they told me that when Emma was looking at something she would drop her chin, so she was looking "up" at it. At that point her eyes were converging laterally.
Have I lost you?! Basically, the sideways eye movement she should not have, as per her diagnosis, was in fact there enough where she could pull them both in to give her a 3-D image. Not impressed? Imagine if you could only see out of one eye - see how your depth perception is affected! Thats what we thought Emma had. No more "lift your head up!"
This is Emma with Lauren...
And here, back in 2008 - Lauren is in the middle.
I knew that the highlight of the conference would be the talent show on Saturday night. I told Emma about it and of course she wanted in! She decided that she would sing acapella, her favorite song she learned at Vacation Bible School that week. We signed up and were one of the last acts to go on.
She asked me to go up with her, but when we got out in front of everyone she got shy and told me to sing! Even if it hadn't been "Moebius Has Talent", I would not have sung! I asked for a couple minutes and we came off to re-group. I got my phone and found the song she wanted on YouTube.
When our chance came around again, we went out and I played the song for her to sing along to. Scott had to use his phone to video - hence the poor quality, but you can get a sense of it...
Emma was the youngest singer to go out and everyone thought she was awesome. There must have been over 100 people watching, maybe 200!
There were some great acts. Check out this little girl...
One thing was evident, that this conference is huge in letting people with Moebius (and their families) know they are not alone, and giving a place where they can relax and not worry about explaining themselves or being stared at.
The kids especially get a lot of acceptance from others siblings, whereas unaffected kids might often shun them or even tease them.
As Emma gets older we know this will be a must for our family. Thankfully the next one is down the road, in Washington DC!
More to come from Day 3...
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