“Smile alert, smile alert, somebody’s hiding some giggles!” Chloe yells out across the room in the middle of the afternoon. It was the end of quiet time and Claire was just waking up from her nap. As soon as Claire had two eyes open Chloe was in her bed doing whatever “secret sister” silliness they do. An hour later I was cooking dinner while they watched tv when Chloe yelled out again, “seizure alert, seizure alert! mom!” I had already been running toward them. As I held Claire, Chloe gently reassured her that it was all going to be alright and that she would start breathing again.
There’s nothing about seizures that I like but what gets me the most is that our entire family is constantly on alert. We strive for balance and to not have life revolve around Claire but with the fear of impending “episodes” or seizures that is hard.
For us, right now, that’s the one thing I would fix. I can deal with the spoon feeding and the communication struggles. My back aches from the transfers and carrying but I have a great physical therapist that is keeping me together. The tension that comes from never knowing when it’s coming, that could break me. It already has in the sense that I am so sad for Chloe, who at the age of 5 has taken it on herself to constantly “alert” us to Claire’s state. There’s the smile alerts, giggle alerts, sad alerts and trouble maker alerts in addition to the breathing and seizure alerts.
It’s exhausting. I’m exhausted. We’re all exhausted. The thing is, it won’t always be like this, I have reason to hope for better. Last August when we went to Boston we were a different kind of tired. We were exhausted from having too much fun. For whatever reason, Claire had a really good few months and in that time our little family came down from high alert. Life was easier, we all laughed more and the focus wasn’t on Claire’s breathing.
It will always be a very special time for our family and I am hopeful that it was due to the shots. I hope that it was the drug in those little vials and that we can resume it soon after Claire completes the trial. I could really get used to not living on high alert.
As 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.
The 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. Disneyland 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.
Wild, that’s the thought that keeps going through my head as I slyly grin. The ups and downs have settled from aircraft carrier to roller coaster levels. With that the tension in my soul has eased. Last year was our first really living in a long while. Each holiday and milestone that I made it through without tears or anxiety felt like a catapult off an aircraft carrier. It was such a rush to live like that but at the same time exhausting to go so high and then so low.
The August trip to Boston followed by Rettland Foundation getting it’s 501(c)(3) was the last catapult. Slowing down has been hard, there have been days that the exhaustion was debilitating. About a week ago things leveled out and I was finally able to really get back to our normal, which is still crazy, rather I’d like to call it wild.
It was birthday week and the expectations were low. Honestly, so was the effort. We got a pumpkin pie from Costco and I dug out a jacket I had bought at a sale a while back. We went to dinner at Claire’s favorite place. Despite my low hopes (I assumed she would be a seizurey mess) it was all very lovely. Claire was relaxed and herself and she enjoyed the celebrations and felt special.
In the midst of all of the birthday stuff a lot of other life happened. I won’t bore you with the details but it is wild. Wild to dream and see something so much bigger come from it. Wild to have life exceed expectations. Wild like a fun roller coaster, I’ve got my hands up and am just enjoying the ride. Certainly it won’t last like this for too long, roller coaster rides never do but they are fun.
It’s hard to know where to start when it feels so much like the end. Since mid March we have been to Boston 4 times. We’ve spent 21 nights in hotel and given Claire 280 shots. It has been an incredible and empowering experience getting to actively change our world. With each injection, each trip we could sense that bigger things were happening. Now we go into a washout period and with that I’m sad. I will miss the thrill of changing the world. But I won’t miss sleeping in a hotel or sitting on a plane watching for seizures like I have for the last two hours.
This wasn’t an easy trip. We made the most of it. I am incredibly proud of both Chloe and Claire for being stellar travelers and understanding of all of the research protocol. One of the highlights of the trip was going to the Museum of Fine Arts. Claire has always loved looking at things, it plays to her strengths, so this was a natural fit. I was surprised by how much of the art celebrated ordinary, every day life. It was a perfect reminder of the gift that each day is, just as it is, even if you aren’t out there changing the world. Life, as it is is extraordinary. So as we switch from world changer mode to our normal, very rad life, I am seeing beauty all around. At this point my eyes are really too swollen to say much else about the trip. So I will share some pictures from the adventure.
The next few pictures are from our great Cape Escape.
It was a wonderful getaway but we had to go back. Monday before Jared and Chloe flew home we checked another thing off Chloe’s list, the Boston Public Garden and the swan boats.
There was a lot more not pictured. We got the pleasure of meeting up with another family that was in the study. We had a lot of fun meals. On the last day my eyes were puffy from crying and Claire’s were from seizures and congestion. It was an amazing adventure. I am glad that we had the chance and I hope that in I get to see the fruit of it in years to come. For now it’s back to normal life in Rettland. The adventures to Boston will resume March 2015 when we return 3 more times for the rest of the trial.
Have you ever taken what you thought was a small step and when it’s all said and done you look back to see it was more of a giant leap. I just did. Yesterday was the day that we explained Rett Syndrome to Claire’s 2nd grade class. The presentation went great. The teacher opened up with the kids singing “This land is my land” and then talked about how there are all sorts of different people, some of them even on wheels like Claire. We went on and gave the kids a chance to see what it was like to be Claire as we asked questions but the answers had to be given without talking or using their hands. The children were amazing. At the end they were all so stoked to ask Claire yes/no questions. This wasn’t anything too new. The same thing happened last year. Claire has friends that do this with her all of the time. In fact, this was less of a giant leap but actually several small steps that have been made over the last two years. What changed was my perception. I remember being in 2nd grade. There wasn’t anybody remotely disabled at my public elementary school. In fact, before finding out that Claire had Rett Syndrome I was completely oblivious to the fact that people lived with various disabilities. I knew that people got old and needed wheel chairs and walkers but I had no idea that kids ever used them. The first time that I met another child with Rett Syndrome I felt so awkward. I didn’t know what to say or what to do. That’s what happens when you don’t get exposed to something, it’s awkward. As I looked at the room of 2nd graders I saw something new. Instead of looking for that one friend that would be enough to keep Claire’s anxiety away I saw a room full of well rounded citizens of the world. They are getting to learn at a young age that the world is diverse on so many different levels. To these kids, the little girl in the wheel chair isn’t as different as it was for me. There is a group that I belong to that recently had a trend of #rocktheawkward. That is my new battle cry as we live life out there in the big scary world. I know that there are a lot of people that we will meet that won’t know what to say and that is alright. Let’s all just admit it. It is crazy that we institutionalized children that were severely disabled but until recently that is largely how it was handled. Educating children that are completely non-verbal is a newer thing. I know this. I understand that you might feel embarassed asking questions, I used to feel that way and sometimes I still do. But lets rock the awkward. Lets be a world where people with Rett Syndrome, Autism and the all of the other disabilities are embraced as the humans that they are. I’m pretty sure we will all be better for it.
Sometimes when you are in Rettland victories come from where you least expect them. This morning we were sound asleep when Chloe came running into our room, asking for help because Claire was on the floor. We rushed in to find her on the floor with her face buried in blankets. Jared took a deep breath, a “will she have a pulse or not breath” and bent down to roll her over to find Claire wide awake with a giant grin. We don’t know how long it took her to get that far away from her bed, she has no bruises that we can see. What we do know is that she was ever so proud of herself. After a talk about why that is not safe and how the rule is you stay in your bed until it’s time to get up, same as for Chloe, we celebrated. She got out of her bed and across the floor of her room on her own. I don’t know if she rolled, rocked or wiggled to accomplish this, but it doesn’t really matter, go Claire! Funny how we see things differently and celebrate what seems crazy. We will be upping our defenses, so if she accomplishes this again I am going to be very curious about her modalities.