Thursday, June 19, 2014

santa barbara

the four of us went back down to santa barbara (or as some call it, normal island) last weekend.  we went for the 3rd annual paddle for sorel-a fundraiser put on by our awesomely cool friends Chris and Megan-for their daughter Sorel who has Rett.  it is a really cool event.  there is a send off early in the morning at one beach and then a welcome back at another beach-9 miles away, followed by food and a raffle and fun.

we had every intention of being there for the welcome back portion as we had been last year.  but we got a late start saturday morning and then hit traffic and then my flip flop broke and then we got there and it was over. but there were still hugs all around-some playing in the sand, visiting, chip eating and laughs were had.

we were just in time to head back to megan and chris' place which is maybe one of the most comfortable and comforting places in the world. there were several other families there with their daughters with rett syndrome.  several siblings.  neighbors.  it is just about the coolest place to be.  megans parents were there too, in town from connecticut and they STILL let us crash in their house.  there were air mattresses-couches-kids crammed into every corner at bed time.

colleen and jared were there with claire and chloe.  they make me smile-for so many reasons.
laurie and eric were there with josie and jocelyn.  loving getting to know them better.
silvia was there with olivia and brianna and ava and there is nothing like a silvia hug.
and megan and chris-they are the most relaxed chill sweet understanding giving people.

it is comfortable. it is easier. it is normal.

the next day we took sorel, xander, avery and nolan to the pier in SB.  We went to the Sea Center.  We went to a restaurant for lunch. Avery yelled.  she pulled her plate off the table and covered her mom in tartar sauce. and it was ok.  I gave the couple next to us an avery card to explain the yells and the strollers/wheelchairs.  as we left he said to me "hey! good luck to you guys-keep up the good fight" and it was rad.

i loved it all. the traffic, the flip flop mishap, the missing the whole reason we drove 5 hours each way. so worth it to be with these people. loved it.

Sunday, June 8, 2014

oops, missed May.

havent written in a while.  sometimes i get a little bogged down in making sure what I write is funny or touching or moving and forget that i just need to write. i missed the entire month of may for really no good reason and its a total bummer because may was mostly awesome.

notes and words was the beginning.  played golf first with brian and leeann and then dinner at a fantastic restaurant called Duende in Oakland.  the show was amazing as usual.  we had a blast.

Nolans class had muffins for mom to celebrate mothers day.  it was very sweet.  we had muffins and fruit and the class treated us to some songs.  mothers day was amazing.  lots of relaxing, some pool time, a little champagne then a last minute get together with some family.

we saw our niece Hattie get baptized in the city and the kids were really good.  the day after was spent in Napa with Julie at a charity fundraiser event at Hall Winery.  A gorgeous day with yummy food and wine-plus it benefited the clinic among other deserving charities.

i attended the samantha corpus golf tournament dinner which is always a good time.  sat with some families and drs. was overwhelmed once again by the generosity of the people in attendance.  this tournament is in its ninth year and has raised over 1.4 million for IRSF (now known as

then it was time to celebrate my 40th.  sure it was a month early-but it was perfect. so many friends made the trip to tahoe-we got to see our friends pete and val from CO (whom we hadnt seen in over 4 years).  red and I drove up on thursday and didnt come home till monday.  couldnt have done it without gramma taking the kids and keeping them safe and happy!  we sunned and cocktailed and sunned.  the boys golfed, we ate, we gambled, we bowled.  it was perfect. i felt the love for sure.

i returned to real life to some terrible news.  one of our clinic patients had passed away over the weekend.  she was 26.  it was so sudden and shocking-especially since I had just seen her parents at the corpus dinner the week before.  then there I am watching them grieve for and bury their only child. it was a beautiful service.  her friends were there-one of whom spoke using his speech device.  judy from our clinic spoke-she had know this young woman for 17 years-it was so moving. that was the 2nd funeral i had been to since I started at the clinic and I hope I never need to go to another.  it is a terrible feeling to be able to picture it happening to you. it is just so sad.

the good thing about being sad is when it turns to anger and you are forced to do something.  im on the board of a newer foundation called rettland foundation.  we help lessen the burden of paying for clinical trial travel expenses-there are trials going on and there are families that want to participate but they cant because of finances.  we want to be able to do more.  if you can help check out -avery thanks you.