It was the best of times, it was the worst of times

Warning, do not click to play this video unless you are in a place where you can cry or get pretty emotional, it might be very, very hard to watch.

This is how my day started. Claire woke up 'not really in her body' all the while pretty happy. She enjoyed her bath, although she was too floppy to sit up, she very much enjoyed getting to lay in the bubbles and get a full body rub down with her favorite salt scrub. We attempted to start breakfast when the twitching started. Captain Awesome started to record it so that we could send it off to the docs for professional opinion. As he recorded it got worse, this is just a little clip of what went on for a few minutes. To be honest it is a very difficult way to start the day. Eventually she improved and with deep pressure to her shoulders to help keep her neck up, she was able to eat her breakfast. I am pretty convinced that it is indeed dystonia and not seizures. That being the case, it seemed that the episode had passed so we put her on the bus and off she went to school, still unable to hold her head up, able to smile none the less. At this point I would have really loved to have taken some pill to make the pain go away, crawled back into bed and pulled the covers over my head for the next couple of days. With Chloe literally running circles around me, that proved to be a challenge and it is Thursday, so we had to get to music class. Once that was done with, I went with my next best option, coffee. I know that it is silly that I depend so much on our coffee shop. It is so much more than caffeine for me. Yes, they do serve unbelievably good coffee and I have been so spoiled by it that I generally opt to not drink coffee anywhere else. As cliche as it sounds it is the smiling faces, all of the yuppies with there macbooks, the students reading really big books about super important things, the place just has a vibe about it that melts away worry and stress. Like most other days, as I was up at the counter ordering, one of the staff asked how I was doing. I was able to smile and respond with a "pretty good" that was surprisingly authentic. In that moment I almost felt like I had betrayed myself. How could I be pretty good? Claire couldn't hold her head up to eat breakfast, she stopped breathing twice that morning, that doesn't fall under the column of pretty good, that doesn't even fall into the alright category. I am pretty sure that any time breathing all together stops for any period of time it goes straight into the sucks column. Quickly I snapped back into the moment as Chloe went on to greet each of the staff by name, yes, I drink a lot of coffee. Then we walked. As we walked I heard the birds chirping, the air was full of that fresh salty smell and my toddler was in the stroller singing. Moments like that I just can't help but try to count all of my blessings only to find that I can't count that high. We continued down to the beach, but it was high tide, so we sat on the stairs and watched the waves. They are mesmerizing. I could never tire of watching the kelp curl in the wave and the sound of the little bubbles as it washes back out into the ocean. Such a strange life, to have such highs and lows so close together. Today I learned that I have indeed grown as I have been weathering the storms. Finally, it is starting to feel like perhaps rett syndrome/scoliosis/dystonia is just a part of my life, my very wonderful life.

So much more than 3 miles

May 7th  was the annual Human Race in Santa Cruz, our first (definitely not last) and it was great!

Claire has the most amazing ABA team and they not only joined us to raise money for Kid Quest, they made special team Claire shirts as part of her "program", surprise the design included lots of glitter.

Claire was in heaven getting so much attention on Chloe's birthday.

Lots of teams dressed up, this was Save Our Shores, always great to see a jellyfish walking!

The drumming at the turn around spot was really cool, both of our girls love drums which made it even cooler.

Claire has the best friends at Kid Quest, this is Leigh and her dog Annie.

Chloe never passes a chance to stand on her head.

Claire got some time with Valerie and Ferdinand, two more great friends from Kid Quest. 

I sure did a horrible job raising money for this. But each of the three donations that we got meant so much to us. There is something so powerful about community getting to raise money for all of the small organizations that is just inspiring. Heather actually ran with Claire. The plan was that they would run a little bit and wait for us at the first water stop. As they ran, everyone cheered them on, apparently half the world knew Claire and with so many people cheering for them, they just couldn't stop. The great irony here is that we started getting ABA therapy for Claire because the screaming on the walks was overwhelming. We had become trapped inside our home on weekends because she would consistently loose it on a walk or outing. After nine months of work and making just over a million yes/no decisions, Claire ran over three miles, not once was there anything close to screaming. She was the life of the party the whole time. A year ago, we would have never imagined having a community center to help support or a team to help us with that, sure is nice to sit back and look at just how far we have come and how much is possible.

How I do it

One of my good friends and fellow rett mom is hosting a round of "How do you do it?" on her blog. I was honored when she asked me to contribute. It took me a while to go down the list of topics I could talk about. Partially because I feel like my brain isn't working that well and I can hardly complete a thought, more or less really figure out what would be the best thing to discuss, so I just wrote about what is closest to my heart right now. If you want to read "how colleen does it" you can click here to see my ramblings.

My open letter to Chloe on her birthday

Dear Chloe, 

 It doesn't seem like a year since this picture was taken, but this is what you looked like after you had your first birthday cake.

You sure learned a lot in the last year but you taught me even more.

You love being as close as you can be to your big sister Claire.

You learned about books and love to read stories.

You went to your first July 4th parade.

You figured out how to balance a crown on your head, one of your very favorite things to do. 

You got  both of your cute chubby little legs stuck in your crib trying to climb out, so we had to cut your jammies to get you out.

You enjoyed lots of wagon rides.

You discovered flowers and how much fun they are to pick and put in your hair. 

You also discovered dirt and how much fun it is to play in. 

We took lots of walks along the cliff, saying hello to the ocean and everything in it.

One time, you even slept, but not after first putting on a tutu.

You taught me that sometimes, one just isn't enough.

You played in the park and loved going down the slide.

When there weren't flowers to pick, you found leaves to play with.

You cheered for Claire as she worked so hard.

You picked out your first pumpkin,

and ate your first pumpkin pie all by yourself.

You loved going to look at Christmas lights.

You spent a lot of time getting coffee and eating yummy treats when it was too cold to play outside.

You drove your first boat, electric at that!

You delivered hot apple dumplings, not really, you just played on this fun truck.

You played with Athena and learned how to be gentle around animals.

You fell in love with the fish at the aquarium.

Not even the cold could keep you from playing on the beach, fully accessorized with your purse and "crown"

You love sitting on Daddy's shoulder, he really likes it too!

You take such good care of your baby, always taking her temperature and checking her pulse.

You discovered how much fun it is to flirt with the waves and get your pants a little wet. 

You played at music class, where you love to sing and dance and play the drums.

You went to the boardwalk and went on your first carousel and loved having the wind in your hair.

You colored and each time you did, my heart and my brain just about exploded with awe.

You love kelp, you like to play with it on the beach, make a necklace of it and bring it in the car.

When there was no beach, you loved to play on the stairs, a lesson everyone could learn.

You love french fries from In'N'Out and think that it is great that you get a hat when they are gone.

You had your first ice cream sandwich, we didn't even have to teach you how to eat it.

You loved on Claire, over and over.

It was a miracle and snowed here, so you even got to see snow for the first time this year!

You taught me that yes it is in fact important to have sunglasses in every single color.

You learned about tide pools and all the little creatures in them.

You also learned about big creatures and how to respect them.

You played on the beach with Dad.

You are just a natural lover of nature and it shows.

Again, you had fun with Dad, he is a pretty fun guy to take to the boardwalk.

You had your first Jamba, again, I didn't even have to show you what to do. 

You loved going on the swings.

After all that playing on the beach, you started to build fancier towers.

You taught me the joy of getting my feet wet, it really is fun!

You are the most graceful airplane that I have even seen flying on the sand.

You love your "camera" and to take pictures with it, I figure mental images count.

There isn't a place that you play where you don't try to stand on your head.

You really are so full of love, it is constantly spilling out of you.

You take care of all the princesses, getting them each a drink and something to eat, such a good friend you are!

For that matter, a really great sister too!

Your smile has brought so much joy to our family. Chloe it has been such a fun year. I have to say I am a little exhausted, but in a good, that was fun, let's do it again sort of a way. I can't wait for all of the fun that is in store for the next year. I know that a lot of people say it is the terrible 2's. I know that it won't always be easy, you have a lot of stuff to figure out, growing up and all that. But if at all possible, could you please make sure to mix it up and through a little good in, even on the hard days, that would sure really help, thanks. I love you, Mom