Sunday, October 23, 2011

Debra & Halloween

There was a little function for Debra held at the children's hospital that we attended today.
Raquel is getting tough to hold and we had no choice to once and a while let her do the rounds about the auditorium floor in her tripod crawl.  I'm happy she didn't make a peep, just looked intently at what was going on.
It was very nice meeting a few more families that are scattered about the Lowermainland dealing with EB in many different degrees.
The world just gets smaller.  It's obvious to me and even from talking to another parent that just a few years ago the isolation was likely incredible.
No internet and little knowledge outside what you could assemble the old way, which seems odd now.
Now, we click on a site for EB and if you search hard enough you can find many things, although reading something from a medical styled site isn't anything like talking to those who have gone before you.  
It is odd that with one click, I can see people from Argentina, Bulgaria, Malaysia or as I can see in the stats page they us.
Today's conversations were light, but there were some nuggets of information that can prove to be invaluable if not matter of factly good to know.

More so, it was comforting, standing beside those few others and talking about nothing in particular.
A certain comfort in not being alone. 

Next stop Groningen and the DEBRA international congress.
How are my ladies going to be???? 
I bet the house will be quiet, clean and calm.
haha  not if Simona comes over. We know it'll be clean, but quiet and calm don't have a chance..

Oh yeah.
Raquel can say PURPLE.
I realize it probably doesn't sound like PURPLE to the average person, but my mother is very proud that the two of them were able to expand her vocabulary. 


  1. Haha, I was startled to see my country in your list, but yes, you have a blog follower from Bulgaria. Congrats on Raquel saying "purple", it seems a difficult word. And good luck with the trip to Groningen!