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.

And Done!

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It’s been about 36 hours since my last post and I am exactly where I was when I wrote that, 35,000 feet above the middle of our country. A lot has happened in that short time. Just after I hit publish Claire started a series of seizures, it wasn’t too bad. We got off the plane and it all hit me like a ton of bricks. Finding a ride to the hotel really overwhelmed me for some reason. Once we made it there I found out that the hotel stunk and I had a hard time finding food options. That’s when I ended up crying as I sat at a table in a crap restaurant feeding Claire Kraft mac’n’cheese. All of the unknowns just came crashing down on me.

We went up to the room where the next wave of seizures started and it was a very long night. I laid awake listening to her shallow rapid breathing in between brain storms, waiting for her to stabilize. Eventually she did and I got a little sleep. The last round came at 6 am and she was able to fall back to sleep for one last power nap before we had to be at the hospital at 8 am. I got everything ready to go, got her up and off we went. I asked which way the hospital was as we walked out the door into the cold and onto the next leg of our adventure. It was a short walk and we quickly found our way to where we were expected and that is when everything turned again.

As we rolled up, in the way that is so uniquely Claire she just relaxed into it all. I imagine that she had a raging headache from the long night and she was fasting but her soft smile said that it was all good, and it was. She laughed on cue as we filled out the paperwork, sat still as they drew an amazing amount of blood, held on to stand for her weight and jumped through all of the other hoops with the greatest of ease. As the nurse was filling all of the tubes of blood Claire looked on with great pride. As obvious as it sounds, she really enjoyed getting to do something herself. Even if that meant being a test subject. She seemed to relish the ability to do what she could to help, qot do something bigger than herself and I have never been prouder of her.

After all was said and done we met up with another mom and her daughter that were there for their appointments. It was great to be on the other side and just sit and talk about life, rett and trials. She gave me some tips on cabs and such and we were off to the airport. Claire took in the sights of the different buildings as we made our way through town like the rockstar that she is with all of the confidence in the world. Confidence that came from doing what she could, which in this case is changing the world as we know it.

Once at the airport security seemed to take particular issue with us and it took forever. We rushed back to the gate as they called me over the speaker by name. With that, the kind people at Virgin took my bags for me and helped me to the plane. Before sitting down Claire said hi to the captain and got her wings while she sat in his chair. She was so stoked, it all felt so normal, because normal is flying home 24 hours after landing, right?

Well maybe it’s not normal but it is awesome and I do love that. A big part of what made this trip so awesome was all of the text messages, prayers and online love that I got from people as we went about the journey. This adventure is so much bigger than that us and we couldn’t be doing it without everyone out there. Thank you so much for cheering us on, it really made this very scary journey a lot easier.

What Maren Can Do

It is with great pleasure that I get to share Maren’s thoughts on gratitude with you today. I met Maren when she lived in the Bay Area, a bit after her daughter Leah was diagnosed with Rett Syndrome. She is a wife, mother, blogger here and here and master crafter on top of Boston Marathon runner, piano teacher and amazing friend for the short list. While we only lived close to each other for a brief season, she and her fabulous family will be forever close in my heart. Enjoy!

Gratitude is a funny thing. It’s ever so easy to say we are grateful for any number of things. It’s especially easy to say we are grateful for that laundry list when those things are in abundance or are working just as we had planned. However, at least in my own experience, we often don’t feel that same intensity of gratitude for whatever it is we were “grateful” for until those things are left hanging in the balance.

I never knew how grateful I was for a strong, supportive family until I moved away from college. Or how grateful I was for a network of friends until one day, they were gone. I never knew how grateful I was for strong, hard abs until I had a c-section and those abs were ripped apart. For shelter and a fridge brimming with food until I had to start paying for said shelter and food myself. The list goes on for me, as I’m sure it does for you. Some items are big, some are small. Some we are aware of now, and some will be added to the list once they are taken away or not working as we had hoped.

But one of the items at the top of my list is my body.

I’m a religious person. I believe my body was created by a loving, compassionate God. And other than my twice disconnected abs, I have a body that works rather flawlessly. This isn’t to say my body is perfect in its proportions or physical worldly beauty – I’ve had my share of crying sessions over my freshman 15 and acne on picture day.

But, cellulite and cankles aside, I have an incredible, working, healthy body.

When I was a young girl, my legs carried me effortlessly across the hopscotch outline painted on the pavement. My hips shimmied their way to the preschool hula hoop championship. My blistered hands swung me across the metal monkey bars with ease.

As I grew, my skin stayed mostly clear of the dreaded teenage acne – and when it didn’t, my body eventually healed itself of those blemishes. My body has participated in countless basketball, softball and volleyball games. My legs have carried me through tumbles in gymnastics and pliés and relevés in ballet, and later hundreds upon hundreds of miles leading to a handful of half and full marathons.

My fingers have gracefully moved across ebony and ivory keys playing endless scales, Chopin concertos and Scott Joplin rags. My mind carried me through AP classes and a nearly perfect GPA in high school and college, graduating from both with honors. I’ve had no major illnesses, injuries or infirmities. And my body has conceived and carried to term two beautiful, incredible little girls.

I can say, without hesitation, that I don’t say any of this to boast. At this point in my life, I can say these things with complete and utter humility and gratitude for a working body.

The reason I say these things with such intense gratitude is because I have a daughter who can’t.

And yet, despite the fact that her body doesn’t work the way she would like it to, we both still live every day with gratitude. Gratitude for the days her fingers grasp onto the stair railing, for the moments her legs carry her where her brain actually tells them to go. Gratitude for her otherwise good health. For her teachers, family and friends who help her do the things that alone, she can’t.

My husband and I just finished reading the Helen Keller story to my daughter. We both felt that while Keller is a great example to anyone, she is an especially great example to someone with a phsycial, bodily trial. In the book, she says, “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.”

That pretty much sums up my outlook on gratitude. In the same way we shouldn’t refuse to do something that we can do, we also shouldn’t refuse to be grateful for the things we actually have.

We have all been given different blessings. We have all been given different bodies. They all work differently not only in what they can do, but how they do those things. I am grateful, every day, for my body. And, because Leah’s doesn’t work in the same way mine does, I am now also grateful that my body works well enough to take care of her. To lift her, clothe her, feed her, bathe her. To comb her hair, push her on the swings, turn the pages of her favorite books. And if I’m really lucky, I’ll get a slobbery kiss, a bright smile or sweet hand squeeze from her in return.

I never imagined I’d be so grateful for something as small as a hand squeeze. But gratitude is a funny thing that way, and I’m happy to add items to my laundry list.

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