1. When the docs are stumped there's always another Rett parent that has an idea!
2. You can meet a family for 30 seconds in the hallway of a clinic and become instant friends, exchanging email addresses, phone numbers and getting invited to their house for brunch the next day! Yes, this actually happened in New York when we met the Gutierrez family!
Ingrid and Sarah, me and Annie, Stefanie and Anna
3. When you're having a bad day the people in Rettland actually understand the extent of it - the rest of the world says "everyone has bad days".
4. You can completely fall in love with someone else's child just by looking at their picture and knowing the struggles they face.
5. You can become instant friends with another parent because you know first hand the hardships and heartbreaks they feel.
6. There is hope here. Hope that most of the world can't seem to grasp.
7. There is support and love beyond anything I have ever seen.
8. Other Rett mom's!
Last weekend I had one of the best times of my life when I packed up and spent a weekend in Las Vegas with 9 other Rett moms from across the country! I had such an amazing time. We talked, compared notes, shared ideas, vented, laughed (no crying!), but mostly relaxed and had fun. I was so thrilled to be in the presence of these wonderful mothers who knew exactly, first hand everything that I have gone through and am currently dealing with. I learned so much and have come back a little changed. There's something about being with people who have walked your walk that makes this whole Rett thing less segregating and just a little more, dare I say, "normal". I can't wait to see all the "Vegas girls" again but for now we have our blogs and our facebook. I hate that our daughters are living with Rett Syndrome but I love the bonds that I have made. There's going to be some kinda killer party when we get cured, I can tell you that!
(oh, and ladies, take your computer off of mute, our song is playing!)
Proverbs 18:24 ".... A true friend is more loyal than a brother".