Adventure Style

10699965_10152649951256461_5851296882079295041_oAs wonderful as October was, I was so happy to have it over. I wanted to hide under a rock and attempt to process all of the ups and downs, makes some notes on what I learned and spend extra time with my family. So you can imagine my surprise when on November 1st a friend sent me a picture of the cover of a local paper with our picture on the front. With everything else going I had forgotten about the story I wrote for the Nov. issue of Growing Up in Santa Cruz that focused on special needs. Being that I typically live under a rock, I had no idea how widely distributed this was and how many people would read my story. It was an  honor to have somebody share their platform with me. I got chills thinking of who might read the story, the awareness that spread followed by a sense of vulnerability as I really couldn’t remember what I had written, what thoughts was I sharing with those that know me. If you would like to read it you can click here.

photoThe following Monday we had our final event for Rettland this year, a fundraiser at my favorite brewery. A portion of the beer sales were donated, people took our Not Speaking challenge and it was a really lovely time. I hate fundraising but this was a great time. It was more like sharing what we are doing than begging for money, which I am incredibly grateful for.

As great as all of it was, it wasn’t hiding under a rock like I had prepared myself for. Two days later another event crept up on me. With 2 weeks notice, Jared and I decided to renew our vows before we left town to celebrate our 15 year anniversary. Shortly after Claire was diagnosed, I really didn’t think we would see another anniversary. It took years but we came through and we are freaking proud of it. To celebrate we got new rings, we made new promises and we went to Disneyland. It was a surreal few days full of ups and downs. The high I felt out on the cliffs and we said our vows surrounded by people we know and love, the low when everything went wrong at Disneyland and Claire’s seizures robbed us of her sparkling eyes and bright smile to the high when she came back stronger, laughing louder and ready to have some fun. It really is more than I can express so I will share a few pictures in an attempt to explain the days. BY7B0086-2-XL BY7B0132-2-XLBY7B0173-2-XL54309040030 IMG_1448photo 54309040069 54309040090Disneyland was magical on so many levels and still every bit of an adventure. As we prepared to come home I heard that some very big news was coming, Neuren pharmaceuticals would be releasing results from the phase 2 NNZ-2566 for Rett syndrome that Rettland Foundation had helped families get to. We got home late and woke up tired. It was just a few hours and again I was completely overcome with emotion. I couldn’t believe the words I read on my screen, “It opens not only the possibility of successful treatment of adults with Rett syndrome, but also of early interventions modifying the course of the disease.” and “exceeded the pre-specified criteria for improvement in core efficacy measures compared with placebo” It was like a dream coming true. Literally, I had dreamed of a day when there was something know to treat Rett syndrome and then on November 11th data appeared to say that might happen. I couldn’t feel my legs, I messaged with families I knew had been in the trial, with friends that had helped me make it easier for them, the world had changed and I got to be a small part of the process. I urge you to read it for yourself here.

It all reminded me of why I started blogging. When we got the phone call and found out that Claire had Rett syndrome I googled it and it wasn’t good. There were no stories of families living, there were no medical interventions, there was little hope. As we got connected with Katie’s Clinic and found that life was possible I wanted to share our story and the message that life with rett is possible. I share our victories, our anniversary and our vacation because I want you to know that you can. You can get out there and adventure across Rettland. We have to keep living because treatment is coming, faster than I once thought. When the treatment comes we want to be able to have our same wonderful life, only a little easier because Claire can better be part of it.

Made a Wish

Claire had a pretty hard time being 4. Just as her sister started to do all of the things that she had lost, the trial for her eye gaze computer ended and she lost her voice for the 4+ months that it took to get insurance approval. Our doctor suggested it was a good time for a Make A Wish to get Claire through so that is what we did. Claire wished to meet Ariel, her kindred spirit that can’t speak and has wobbly legs. You can read about that adventure here. Fast forward a few years, Chloe is super into the princesses and loves to look at the pictures of her sister with them. She has heard us tell people about Claire’s wish and the fun she had meeting Ariel. So I shouldn’t have been surprised when Chloe announced that she was ready for her Make A Wish trip. I explained that it was only for kids who had to go to the doctors a lot to which she replied, “I go to the doctors a lot.” I couldn’t argue with that logic. I explained that mommy and daddy would have to pay for her trip so it would take us a while to save up. For months she asked every day if we had saved enough money yet. When we were out and she wanted things she constantly heard that she couldn’t have it because we were saving for Disneyland. So I wasn’t really shocked to her response when we finally told her it was time to go. “You have enough money! Hooray!” Like most things on the typical side of our life it was all pretty amazing. Chloe anxiously gathered up everything she needed; her Belle dress, her blankie and an Ariel doll. The drive down was easy thanks to the ipad and some Tinker Bell movies.

 We arrived shortly after my parents and headed out to Downtown Disney for a little shopping. Chloe thought she was in heaven. It was obvious we don’t get out much as she was star stuck as the shopping center alone. Both the girls were in heaven in the huge Disney store, if I had known that I wouldn’t have bothered with admission to the park.
 After shopping we celebrated Chloe’s 4th birthday at Goofy’s Kitchen, it was so much fun. Chloe wasn’t super excited about the ‘creepy’ characters but she was pumped for the peanut butter and jelly pizza and copious amounts of fresh fruit.
 Somehow Chloe had a hard time falling asleep after all the excitement so we let her sneak out of bed to watch the fireworks with us from the balcony. As great as the fireworks were it was breathtaking to watch her enjoy them, to remark about the colors and shapes and see her jump out of her skin when she saw Tinker Bell fly around the castle. That’s the stuff that can’t be taken for granted and Jared and I soaked up each minute of it.
 This was one of my favorite moments. It was 8am on Mother’s Day and I had two smiling, happy children that were excited for a day of fun. Not going to lie, it was a huge stroke to my ego 😉
The first order of business in the wish making process was to go see the fairy godmother in training.
 Then all that was left to do was enjoy the magic and watch her soak it in for the first time.
 It sure helped that Claire was having a blast too. She loved all the fun and extra loving she got from her daddy.
 Pixie Hollow was pretty much a dream come true for Chloe, she was star struck by Tink.
 Claire and I almost went on Splash Mountain but she got so excited she stopped breathing as we got in line, as she recovered Chloe was there being the compassionate little superhuman that she is.
 While Claire slept off the crazy we managed to have fun waiting for the parade.
 Chloe was beyond excited, she named off every character as they danced by us, the anticipation as the princesses got closer was almost more that she could handle.
 After all the fun she was eager to get back to the hotel and so were we, all that was exhausting.
 Day two we did California Adventures with our friends, friends that we had never met before, that’s normal right? I met Laurie in New Orleans when I crashed dinner that some of our mutual friends were at. We discovered that our little seemed a lot alike and I have dreamed of getting them together ever since then. So glad we did, it was so much fun and Chloe and Claire have new friends for life.

While we waited for them to arrive Jared and I took turns going on California Screamin’ the fast roller coaster. Yes, at 9 am I made my children wait in the shade while we rode the roller coaster and it was the best decision. It was eerie how relaxing it was to be thrust upside down, a good reminder at how crazy my world is, I have to go upside really fast to come down from the stress of my life, that might be something I work on in the future.

 All of the girls had fun with the princesses at Ariel’s Grotto and we enjoyed being inside and having food served.
 Once it cooled down we went for a few rides and had a ton of fun with our new friends.
 That night the girls cuddled up under the magical fireworks on the wall and quickly drifted off to dream land. Mission accomplished, we had made Chloe’s wish come true.
 Before we left we managed to get a little swimming in and by swimming I mean jumping.

We had breakfast with some friends, Chloe made a great cup of tea for Claire and the Mad Hatter.

Like that it was time to go. So glad we went, it was exhausting but worth it!
 But it was also good to be home.