Miss Amazing Does Novermber

Ah November. The thought of the word November alone brings a sigh of relief to my soul. November was like a cup of coffee with a really great friend that you rarely get to see. You can get there five minutes late, a little frazzled and wearing your sweats and still manage to have the most meaningful and encouraging time. You laugh, you cry, you look down at your watch (alright iPhone, nobody really wears a watch anymore) and can’t believe that three hours has already passed and you had better get going. You walk together out to the parking lot together already planning what the next meeting will look like, even if it off in the distant future. Later, when somebody asks what you talked about it is hard to come up with an answer, nothing, everything, it’s hard to remember, it was just good. With that said, here are some of the highlights that I can recall.

November certainly did not disappoint in the food category. Not only did Jared and I enjoy a full share of rich dinners, we actually had people over to eat with us, twice! I actually think the last time we had friends over it was Maren and Erica. So I was over the top delighted to get to make pizza from scratch two weekends in a row for a few new friends.

The weather was pretty epic as well. I spent a lot of time just sitting and listening to the waves crashing and the water swirling in the sand. I wish that I had the words to describe how the longer I sit on the side of the ocean the more in balance everything seems. Sitting there doesn’t actually change anything and at the same time it somehow changes everything.

There was a lot of silliness and leaves. Chloe taught me that it is better to run in the grass and the leaves in bare feet and I have to say that I must agree with her, it was great fun!

Then there was the road trip to Santa Barbara to support our dear friend Sorel and her rad parents. Claire and I left very early as it was a 5 hour drive just to get down there. Of coarse, the two things that I feared most, Claire not breathing and me getting diarrhea both hit us in the first 30 minutes of our journey. I hadn’t been driving for 5 minutes when I heard Claire’s first episode, we rolled with it, I thought to myself, she has rett syndrome, this is just what that means for us. We drove on and as we drove through Castroville it was my turn. My stomach yelled at me and I quickly found the scuzziest gas station bathroom that I could find, put Claire’s chair together, threw her in it and darted to the back of the building to a room barely big enough for a toilet and a wheelchair, but we made it work. As I finished, Claire indicated that she needed to go as well. I tried to talk her out of it. I explained that of all of the toilets to ever not want to sit on, this one was toward the top of the list, yet she insisted. So glad that I listened! It was then that I had one of those true Miss Amazing moments. Not that I can read her non-verbal cues so well that I put her on the toilet just before she poops, no that is not what makes me amazing. As I squatted, mind you it is just before 7am, holding her up to sit on the toilet, I for reasons unknown let go. Yes, I dropped her poor little bum into the grossest toilet ever, just after she used it, ugh. This is the picture I took of her in that bathroom, just after the event, she laughed so hard at me that I couldn’t help but join in.

Now that we were both completely awake we got back on the road and put some miles in. We didn’t stop again until Paso Robles. The moral of the story from that pit stop: if you are going to try to change your child’s diaper in the bathroom of Starbucks, and they are flailing post seizure/dystonia and you take your sweater and sweat pants off to make a makeshift pillow so she doesn’t crack her head, lock the door, trust me. Again we got back on the road and took in some really breathtaking scenery.

 Eventually we made it to the beach and it suddenly was all worth it. To see Sorel’s big toothless smile and all of the people that were gathered around her and her family was awe inspiring.  We are not alone in this. There are people working to fix this for good, to make it less bad and to help us right where we are without those first two options available, yet.

This picture was taken just when we got there, before a really bad episode. Claire spent most of the time there recovering and still she managed to enjoy herself when her body was not fully cooperating. After a few hours with our friends we took a little detour to the French Press. I knew that I needed coffee to get home and I figured this was the place to stock up. Claire got her usual, whip cream, which she enjoyed very much, she just wanted to show off her serious pose for the picture.

Next we went back to Sorel’s house for the after party. Her parents are great, really great, I love them sooorett together and it is an official party.

 By the time we recovered from that trip it was Thanksgiving. I got to give out a lot of apple butter and salsa to people that we are thankful for and this year the girls helped me with that which made it even more special. As for a big turkey dinner, this was the extent of my mise en place.

I bought a precooked stuffed turkey something that had a packet of cranberry sauce along with stuffing that merely needed to soak and be reheated.

They sure didn’t care and I got to spend a lot more time with them due my lack of cooking for the day.  The sad part is that it was another hard day on Claire’s little body, so she rested up in between bouts of great fun.

Chloe “helped” me cook the pie. She was in charge of smashing the grahams for the pie crust. Put her in charge of destruction and she will not disappoint, it is for sure an area she excels in.

After we ate and watched both the Thanksgiving and Christmas Charlie Brown movies, we put up our tree . There is just something so special about watching children look at a tree light up for the first time, one of those things that just can’t be taken for granted.

Once the girls were down Captain Awesome and I had our real feast of cheese, salami, olives and fresh bread while watching a true Christmas classic.

We had a lot of fun over the holiday weekend. You can see that we took our black Friday shopping very seriously.

Eventually we made it down to work some of that food off. Being that black Friday is the official day that rett stole Claire’s hand function it has been a sad day for me the past few years. But this year she really shined and showed off just how little she needs those hands. Sure she would love to use them, but Claire reassured us all that even without the ability to feed herself, she is still one very awesome little girl in ways too many to count.

And just like that November wound to a close. We got back to school, the laundry and the IEP.  Not without one last night out, which happened to include verve coffee ice cream with chocolate covered almonds, covered in house made marshmallow that they toasted with a blow torch right in front of me, just before topping with a fresh cone, all in addition to Captain Awesome, the world greatest husband. That is how we celebrate 12 years 🙂

3 thoughts on “Miss Amazing Does Novermber

  1. You ARE absolutely amazing. I am so inspired by your strength and how you don't sweat the small things. I want to be like you when I grow up! 🙂 miss you!

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