rettsyndrome.org

Image Map

Monday, May 27, 2013

its a big deal

its kind of a big deal to pack up the kids and drive for 5 hours and stay with friends in their home where we have never stayed before.  even though i know they REALLY do want us to stay in their house, I have second thoughts a few times and think maybe they don't really and we should get a hotel. then i remember they are our people and that they let us crash in their room at our first conference after meeting the the day prior. and they too have a daughter with rett syndrome.  they get it.

and so we go.

we left super early saturday morning so we could attend the main event-the 2nd Annual Paddle for Sorel-hosted by her parents-Megan and Chris-the friends we planned to stay with.  the drive down was pretty perfect.  Avery was VERY quiet, Nolan only got a little car sick (i dont think he will be playing games on the ipad in the car anymore).  We made it down in under 5 hours, got coffee, changed our clothes (in the car) and headed to the beach.

as soon as we get there i start seeing familiar faces.  nolan cannot wait to get out and get to the water.  we meet up with some friends in the parking lot and off nolan runs to get a juice box or chips or something and the next thing I know Red is pulling him from under the picnic table. he is crying.  there is blood and there is a tooth in a weird position. not quite sure what happened but he cut his lower lip pretty bad with his teeth and knocked the two front top ones pretty loose. lucky for us, Sorel's grandpa was there who happens to be a pediatrician.  i was thinking he might need stitches.  he didnt. and the teeth sort of popped back into position. in no time he was running in the sand splashing in the waves.  brave boy.  we are watching the teeth and ill likely get him in the dentist this week if i can.  he is excited for the possibility of the tooth fairy visiting but not so much the teeth coming out.

soon enough more and more rett families arrived, some I know well, some i had only met once or twice before and others we had never met.  i think there were 10 girls there total-all the same and all so different.  we mixed and mingled and chatted on a gorgeous santa barbara day and then we saw them coming. the paddlers-who had left a different beach at about 8:30 that morning were starting to make their way to shore.  We all went down to the water's edge to watch them come in.  a group of rett siblings were jumping in the waves, getting sandy and wet. laughing their little heads off. the grown ups were ready with cameras and one by one the paddlers arrived.  we cheered, we woo woo-ed, we clapped.  they made their way out of the waves and over the seaweed to hugs and fist bumps and high fives.  they had paddled for 9 or 10 or 11 miles on lay down paddle boards, a few stand up paddle boards and kayaks. in the ocean. pretty bad ass. but like Chris said-it's nothing compared to what our girls do every day.

we ate a great burger lunch with our rett family.  we bought raffle tickets. we joked and laughed and just felt at home.  Nolan made friends with one of Sorel's neighbors-an 11 year old angel of a young man.  im certain Nolan will remember him for the longest time. I will too.

Red took Nolan on a kayak ride after lunch and it was jut me and Avery by the time they were ready for the  raffle drawing.  we headed over with the other families and Chris and Megan spoke-thanked the volunteers, the paddlers, the donors.  he thanked the families that came from near and far (the UK!) and Megan thanked Chris and made all us moms cry with talk of the day that cure happens. Avery yelled the entire time.  after the first 10 or so items, avery was yelling louder and i never win raffles anyway so we walked over to get some water.  just as Im reaching into the cooler and heading back to our spot, i hear cheers-i hear my friends cheering.  i look up and they are all looking at me gesturing for me to come over.  im shocked!  i won? me?  and they are saying YES YOU WON THE GRAND PRIZE! THE SURFBOARD!

i won a surfboard?  wow!  we took some pics and im glad i didnt notice all the surf dudes glaring at me. im thinking what the heck am i going to do with a surfboard? how am i going to get this thing home?  its not just any surfboard-its a custom shaped joe bark board.  apparently joe bark is THE guy in the area and it is a pretty expensive board.  after lots of brainstorming, we decide we will leave it in SB and auction/raffle it off again and just donate what we get from that to the rett cause.

After that, red and nolan returned and we hung out a little longer.  we then headed to megan and chris' place.  another family (Colleen, Jared, Claire and Chloe) was also staying at their house-all of us piling into kids rooms with air mattresses and sleeping bags and pillows and blankets. some other families came and joined us for a pizza dinner, so did some neighbors.  i could not have been more comfortable or more comforting.  the siblings playing so well together, taking rides on the elevator, cooking smores, watching the Lorax. the parents talking about nothing and everything, wishing we could just stay in that moment forever.

Chris and Megan are the best hosts.  they say "make yourself at home" and they mean it. and we did.  i now know where they keep everything from toilet paper to trash bags. we all pitched in and made it work. it was loud and chaotic and so fun. we lasted as long as we could before people started to leave for home or hotel. we got the last of the kids to bed and hit the pillows ourselves.  Red and Chris stayed up a while longer by the fire. i heard some mumbling about a shooting cans with a pellet gun the next morning...

we woke up to Verve coffees specially prepared by Jared. and breakfast burritos from a place nearby.  the girls went bathing suit shopping (someone whose name starts with E forgot hers) and then headed to the neighborhood pool.  it is a pretty special neighborhood.  they seem to know everyone.  there are several families who have kids with special needs. it sort of felt like paradise. we took over at the pool with our screams and wheelchairs and hand mouthing and normalcy. it was wonderful.  we have all joked about moving to rett island one day and it sort of felt like we were there.

it was then time to head back-Nolan was beside himself with wanting to stay. we shared in his feelings. we were so happy we stayed with Meg and Chris and not in a hotel like my chicken self sort of wanted to do. i cant describe how good this was.we are so thankful for this community and we cannot wait to do it again next year. 
waiting for the paddlers!

goose loving life!

nolan and our new surfboard!

avery swimming with dad, in her happy place.

that is the lovely and loved Sorel.

No comments: