rettsyndrome.org

Image Map

Wednesday, December 28, 2011

Road Trip!

We were invited up to visit a lovely cabin in Miranda Ca the day after Christmas.  Sarah's (Red's brothers girlfriend) parents, Cathy and Don, have a cabin there right near a beautiful river.  It is about 4 hours away so it was a little nutty of us to try to do this in one day.  But, I wanted to try it.  I wanted to do something that a family with typical kids might do.  So, we got up early, packed up and left with gramma and the kids.  Three stops later, we got there around 11:45am.  What a beautiful location!  We were greeted by four dogs which the kids loved.  We went in and started on some mimosas!  We had a lovely lunch on the deck (homemade tomato soup and homemade pizza), then walked down to the river.  Uncle MT tried out his new fishing waders and showed Nolan how to fish.  Nothing was biting as the river is very low.  Avery had a blast trying to walk into the water and laughing at us as we chased her back from the shore.

We went back up to the cabin and relaxed for a bit before heading to Founders Grove-a beautiful section of Humboldt State Park with the most glorious Redwoods.  It was a little excursion that Ill remember forever.  It is one of those things I would shy away from because of Avery.  Of course, she loved it and was so good.  She enjoyed running through the forest on the soft pine needles, through the fine mist that was making her hair curlier and curlier.  We went inside trees, Nolan climbed on logs and jumped off of them.  I took a million pictures.  It was lovely.  A lovely day with lovely people who all accept Avery for who she is-which is always a gentle reminder for me to do the very same. I love it when that happens.
















Tuesday, December 27, 2011

christmas day 2011





Christmas morning came and Avery was up and ready to go.  Nolan was another story. Too many late nights had tuckered him right out.  We had to wake him up.  I wish I had a picture of his face when we said "Nolan! Wake Up! Santa came!" He was puzzled for a split second, then leapt from the bed and ran into the living room so fast I didnt have a chance to get the camera!  He and Avery both had looks of wonder on their faces.  Nolan checked out the trampoline first, then noticed the plate of cookies and carrots.  He really inspected it! They liked their gifts-I think Nolan's favorite was the M&M's in his stocking!  Glad we didnt buy too many toys!

After we opened presents here we went to gramma's like we always do.  There were more presents there, mimosas, gin fizzes and breakfast.  The kids loved opening more gifts and especially the huge blow up slide gramma and poppa gave them!  They had a blast on it-until some dog poo got in the mix and then it was time to go!

We then went to Red's aunt and uncles for dinner in Danville.  So much fun.  It is my 11th Christmas out here in California and am so lucky to have all these wonderful people to spend it with.  I unfortunately didnt get any photos.  But I assure you we had a blast.  And a delicious meal.

We had to head home and get to bed because we were planning to wake up early the next morning to drive up north to visit with Red's brother's girlfriends parents who have a cabin on a lake!  That will be my next post!

christmas eve 2011

once again we hosted christmas eve here at our house.  its the one thing I can carry on from my childhood.  my parents always hosted christmas eve.  it truly is my favorite night of the year.  We have Red's immediate family over for dinner, a "white elephant" gift game and secret santa gift exchange.  We always have a ton of laughs.  Everyone was in attendance this year (12 adults) and there were 4 kids instead of 3!  Everyone pitched in for food and we had a delicious meal-despite the potato dish being dropped on the street and smashing into a million pieces!





Avery was so good.  Nolan was so wound up.  He put reindeer food out on the lawn and we set out cookies, milk and carrots. He would NOT go to bed! That is until Santa called us to tell us he was here!  Nolan RAN to bed-it was hilarious!  And he was out like a light.  Once we knew he was asleep, Red and his brothers put the trampoline together and I wrapped the rest of the presents.  It was a really fun night and Im so thankful for Red's family!   

Sunday, December 11, 2011

crying it out

It's been one of those days where I have been on the verge of tears all day long. And I have a headache from not letting it all flood out.  First it was being in Toys R Us trying to find some presents for the kids for christmas.  Everywhere I looked I saw things for Nolan, but nothing for Avery.  Then I found myself in the barbie/dressup/all things little girls love aisle and had to fight back the tears.  It is hard not to try to imagine what Avery would be asking for if she could ask-or even play with toys.

Then I had good tears when I heard the gender of our beloved sitters baby-It's a GIRL.  But then you know that causes me stress as well.  Im always afraid of that Rett monster showing up in someone elses baby.  I know its silly but, the way it is. 

Then this afternoon, after I heard the news that a young local woman with Rett had been taken off a ventilator after nearly three weeks in a medically induced coma for uncontrolled seizures, had passed away-I read a message her father posted to our online listserv and I just lost it.  But again, had to stifle the cry a bit because I was feeding the kids. 

Plus you can add in all the status updates lately about girls seizing so badly they vomit, turn blue and/or stop breathing.

So I have this headache.  The kind I know too well.  The kind that reminds me Im due for a good curl up and cry session. Kind of feels like the walls are caving in. It's just all a little much.  

Time to cry it out.