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Thursday, May 30, 2013

tooth fairy!

I made Nolan an appointment to see the dentist after he knocked his two front teeth loose this weekend.  We went in yesterday, they took xrays and it was clear that he had broken both roots and the teeth needed to come out. the two teeth next to the two middle ones were also a little loose. geez kid. 

So we made an appointment to come back and have them pulled later that day.  He was so excited!  what a nut.  So we went back and they explained to me what they would do and that it would be a pretty easy extraction since the teeth were so loose already.  They would give him some nitrous oxide and then apply some numbing gel and pull.  They also told me they would like him to go back without me.  I let him know I couldnt go with him and he said "why not?" and I said "Im not allowed" and he said "ok!"  so brave.  He went back and about 20 minutes later he came out with 2 less teeth.  He proudly smiled a very cute new toothless grin and showed me his teeth.  He didnt cry and they said he was very polite.  I was a proud mommy.  We got a balloon and went for froyo.  Nolan was very strict about keeping the gauze in his mouth and would pop it back in after each bite!  We stopped and got him some Motrin for when the numbness wore off and he was fine! 

He put his teeth under his pillow and at 3:26 this morning came running into our room yelling "mom! dad!  the tooth fairy came and she brought me a wallet! and an electric batman toothbrush!" It was pure innocence and I loved it.  When he saw the 2 dollar bills in the wallet he exclaimed "im RICH!"

Priceless.

before!

balloons in the waiting area-we love our dentist!

after!

taking out the gauze

and its back in!

the teeth!
Avery has lost like 8 teeth, the tooth fairy has come every time and she has not shown any interest in any of that.  I know it is not her fault and she would if she could but this experience with Nolan has made up for all of those missed ones with Goose.  these very typical very everyday moments are just so magnified and I love it.

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.

Wednesday, May 15, 2013

not 100% but getting there

A week ago I started to finally feel "normal" again.  A full three weeks (plus) post marathon.  It is absolutely nuts.  Part of me feels so connected to it and the other part feels so...disconnected. I tell people the story and they get the chills.  Maybe Im a little numb.

But things are better.

I had a fantastic weekend with my book club girls in Murphys-a little town in the Sierras-about 3 hours east of the bay area.  We cooked dinner in Friday night, slept in on Saturday, went wine tasting, had a great lunch, made friends with the locals, hung out in a saloon, danced, tried to control the jukebox, got called "bay area bitches in heels", met a bride and groom, laid on the deck to see the amazing stars, told so many stories, laughed so hard, hiked with snakes, shared shoes, ate amazing gluten free pancakes (who knew!?) and just flat out had a blast. 

I truly got choked up at the view from the deck.  We stayed in the lovely home of one of the clubs parents. It was perfect and the view was incredible.  I think I walked out there randomly at least 3 times to just marvel at it. It did bring me to tears. I love those girls, too.  They are smart and witty and fun and honest and being with them makes me happy.  I cannot wait to do our book club trip when we are pushing 60. 

On Friday we had another successful clinic at Katie's Clinic and it amazes me that each time we see families I feel more and more lucky to be a part of their journey. My coworkers are insanely generous and sweet and fun and the volunteers!  wow.  We are so lucky. 

This past weekend we hosted Red's family here for mothers day brunch on Saturday.  It was a great time.   Everyone brought something from bacon to champagne.  I love this family. It is big and boisterous and loud and fun.  Avery had a perfect day.  She was happy as a clam, as usual when family is around. She is comfortable and so are we. There were moments when I just stared at her beautiful face that day and felt the best kind of unconditional love. Her dimples were deep and her cheeks full with laughter.  Nolan had a blast playing with his cousins.  We are so fortunate to have this much family so close.  It makes me miss my brother and sister in law and nephews in Va even more but it allows me to cherish them more as well.
my gorgeous goose

Nolan with his cousin Rowen. 



We got to play golf on Mother's Day and have a nice little lunch and get some pool time in with our friends.  It was perfect.

So far this has been  good week.  And Im looking so forward to attending the Notes & Words fundraiser for CHRCO this weekend.  The week after that we head to Santa Barbara for the Paddle for Sorel...so excited. 

Better.

Thursday, May 2, 2013

sluggish

they say that post marathon you may feel "depressed" or "let down" now that the thing you have been so focused on is over-just like that-it's done and you dont really know what to do with yourself. i think that is true. but, what happens when that race gets interrupted by a terrorist attack that maims people and kills children?

Ill tell you. 

you go back to your normal routine but here and there you recount the moments of that day.  over and over you tell the story of how you found out, what you thought about, your greatest fears and your biggest reliefs. you drink a lot of cocktails a lot of the nights of the week.  you sleep HARD at night and try HARD not to sleep during the day. you obsess over the details of what happened-the small lives of the cowards that changed that day for all of us-the news updates. the conspiracy theories that this was a "false flag" event staged by the government to scare us into acquiescing into some sort of police state. you spend time day dreaming about what it would be like to go back and try again and actually finish this time. then you remind yourself to not get your hopes up about any of that happening. 

you are blown away by all the love from near and far.  blown away by the races that are quickly organized in the name of Boston Strong, or Love to Boston some three thousand miles away. you read many different stories from that day, you watch interviews with the victims and just shake your head at their courage and strength. you'll marvel when thinking about the volunteers and the medical tent staff and the runners and spectators that rose to the occasion.

you hope you will get your belongings back from that yellow bag you so precisely handed to the guy in the school bus window labeled with bibs numbers 24000-24250. not that anything in that bag truly mattered-a jacket from target, sunscreen, clif bars. then you come home one day and there is a box and you open it and there is your yellow bag. and you get some tears in your eyes because you think you are one of thousands they did that for.

but mostly you are tired. just exhausted. every day you wake up hoping that today will be the day you dont want to sleep in your office. it starts off well but then seems like just the effort it takes to get up and ready wears you completely out.

and then you make an appointment with your doctor just to make sure it is in fact post terror attack/attempting to run a marathon depression and not something else entirely. ill see her tomorrow morning then I will be off for a few days of wine tasting and relaxing with my "book club". it will likely be just what the doctor will order.