Today marks the 1 year birthday for Rettland Foundation. A year ago I got up the courage to file for a tax id number and send in a form to the state of California. I really had no clue what I was doing or how to do it. I figured I had little sanity left to loose, there was a strong sense that something needed to be done and that I could bring some level of awesome to the world with these steps. So I jumped in.
It’s been a whirlwind since then. I’ve learned a lot and have a long list of things still to learn. We’ve gone to Boston 4 times this year and learned a lot about the process of research. Somehow along the way we finished a 5 year process and became debt free except the mortgage. We celebrated an anniversary that I never thought I’d see.
There has been more good in the past 12 months than I ever dreamed possible. There was a lot of hard too. The best way to describe it is that life was so much more than I ever imagined. It’s been surreal. It’s been scary good. But it’s taken a lot.
It’s hard to admit that I’ve given too much and come up empty but I have. It’s not how I wanted to finish the year, broken and exhausted. Slowing down, stepping back to reset, it has been a very hard process. Without the benefit of adrenaline from the constant crazy it seems my brain doesn’t work. Earlier this week I inadvertently drank the tulip water. Yes, I put the flowers in the trash and instead of dumping the water into the sink, drank it because I was so thirsty and distracted. I’m actually looking forward to my colonoscopy for the rest. I am that tired.
I don’t know what adventures are ahead of us, I just hope that for a little while we can have less. I’m alright for less good and less bad for a while. It is a hard choice to make after loving a year filled with so much life and I’m not sure I know how to but I know I can learn new things.
Growing up Thanksgiving was my favorite holiday. We would go to my Great Aunt Claire’s house, there was always lots of food and family, occasionally some extra friends as well. After the meal there was some combination of football and A Christmas Story on tv, there was golfing (we lived in Arizona) and my favorite, playing cards. Aunt Claire was my hero and those times are among my most cherished childhood memories. I grew up and life got complicated. Aunt Claire passed unexpectedly from a heart attack, my career had me working holidays and then we moved to California.
Thanksgiving was never the same but it was still my favorite. Then out of nowhere, Claire gets diagnosed with Rett Syndrome which was weird because her hands worked so well. November 2007, 6 weeks after the diagnosis the three of us went to some restaurant in Santa Rosa. Claire fed herself Thanksgiving dinner and the next morning she woke up clapping and staring at her hands, she hasn’t fed herself a meal since.
Since then Thanksgiving has been a tough one for me. It’s hard to sit and count your blessings when deep hurt is so fresh and the only thing you can feel is isolation.
This year, I’ve got a different perspective. My word for this year is ‘unless’ and it has led to the wildest, better than I could have ever imagined year.
2007 was the year Claire last fed herself, unless she starts to again. The thing that I have most figured out is that I really have no clue what the future holds. I didn’t think that I’d ever start a company more or less a non-profit. I didn’t think I’d still be married and what we have now is richer and purer than anything we could have strived for. I didn’t think I’d ever have a drug to give Claire to help with the mess in her brain but in 2015 that could happen.
I don’t know how that will affect her and if she will regain any hand use but I’m not ruling it out. I’m going to live like the future of Rett syndrome is unknown because it is. The only thing I know about is what’s happened and what’s going on right now.
Claire often has seizures on holidays so we aren’t planning a lot. A simple meal of ham, potatoes, corn bread stuffing and brussel sprouts cooked with bacon. We will decorate for Christmas and watch movies and enjoy what we can. Who knows, this could be the last Thanksgiving that Claire can’t feed herself. Now wouldn’t that be a fun memory!
“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 such a hard question, How are you? It’s meant to connect but so often becomes isolating when you can’t muster up an authentic answer. I’ve given an assortment of answers. Exhausted. Fine. Still Alive. Not in a hospital so…. I crave being able to be authentic with my response. I want to believe that people really want to know. Often I feel that my true answer would be heavier than what they are looking for. As a result I give a fake half-hearted response and sink into the isolation that comforts me with its familiarity.
Yesterday the speaker at our church discussed the issue of loneliness. As he discussed a specific example he used the term “suffering well” and with this my heart lit up. That’s it! YES!!!!! Finally, words that describe where we are right now. I am exhausted. My body aches. My heart is broken. I am also loved by many, encouraged often by strangers as well as people that I know and I am full of hope.
That is what allows me to see the beauty inRettland. I spent a few years inRettland suffering. It was dark, arduous and depleting. Today I know that I am not alone here and that fact has made all of the difference. It allows me to see the light behind the clouds and to rest when I am weary.
To those of you that responded to my last post by stepping up to NOT SPEAK right away, thank you. It’s when people of all different circumstances come together and unite that Rettland becomes the great place that it is and we suffer well together.
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.
We’ve made it a long way. We pushed and got to the airport with a few minutes to spare. We are now on our 4th trip to Boston within 5 months, I still can’t believe it. We’ve learned a lot along the way. We scheduled in a lot more margin this time. We started packing earlier, asked more people for help and were very intentional about making sure that Jared and I were laughing together and staying on the same page. Somehow, even with everything going smooth by our standards, the grief snuck in and hit me hard, right in the gut. It’s not fair that even when everything is going well, still it is so hard that it takes your breath away and makes you feel like you have to puke. After much reflection I have come to a simple conclusion. That is because it is hard, really hard. Support from friends helps. The peace that I get from my faith goes a long way. At the end of the day, this is hard and those thing make it manageable but nothing can make this not hard.I knew when we signed up for the trial that it would be hard. I knew that we would drain our bank account with the cost of travel. I planned that there would be a physical toll on all of us. What I never could have seen was the heartbreak I am feeling right now as I sit on the plane next to Claire as she contentedly watches the Muppets. I signed up for this trial because I knew that everyone has to start somewhere. Much like the first planes didn’t fly, I had very low expectations for this treatment. Due to the sensitivity of the research I can’t say much, but I have checked with the team and I can say this. While I can not be certain, I do believe that Claire is on the drug and it is devastating to know that we can only give her these shots for another week. This is a whole new level of hard.
I’ve been to conference and spoken to doctors about the future of Rett Syndrome and the response has been, “not if, but when”. For us, the when is now. I live in a world where I can give Claire something that helps. Soon our when will become a “back then.” I don’t know what will happen when we stop the shots. Research will keep on but I don’t know what Cliare’s brain will do without whatever was in those little vials that we are giving her. This I do know. I am so glad that we’ve made these sacrifices and got a glimpse of the possibilities. After all, don’t think there’s ever been a better time to do the hard stuff than now.
Lately everything has felt like a huge effort. The highs have been so high because they have taken every once of my being and the lows have depleted me to new levels of empty. Captain Awesome put it best when he described our life “not so much like a roller coaster, more like an F-16 on and off an aircraft carrier.” So when it slowed down and I started to rest and restore I barely knew how to function. I kept closing the trunk on my head, forgetting things like my wallet when I went to the store and falling asleep just about everywhere, I was a mess. Apparently I have two modes, bat crazy and hot mess.
Perhaps that is why I was caught off guard when the awesome crept back in. Jared works for Ducati so he was able to get us tickets to the World SuperBike Races that were in town. Claire loves racing, so much that it normally gives her seizures. In fact, we didn’t go last year because the year before she had huge seizures just as we pulled in and the risk didn’t seem worth it. This year the weather was great, crowds weren’t supposed to be huge and Captain Awesome and Miss Amazing were delusionally tired so we decided to go.
We got a slow start, stopped by Whole Foods for some picnic stuff (since I haven’t prepared food in FOREVER) and headed down with low expectations. There were two rules for the day.
1.We stay flexible.
2.We have fun.
We ended up staying longer than we expected, steeped in the glory of race fuel and loud revving engines. We laughed, relaxed and basically sat back and just enjoyed the day. It was so weird but so awesome. There was no huge exertion of effort, no mountain to climb before we got to the good part, it was just a good day.
Makes me think all of the traveling might have another silver lining, after going to Boston for 48 hours going to the races is cake! We might need to find more easy fun, I could get used to this.
It is the last day of school and I am buckling up for what is about to be one hell of a ride. It’s already been a long week. Claire sobbed yesterday morning at the discussion of going to Boston. The initial excitement is gone and now it just feels like she is getting shots and missing out on fun with her friends while she is out-of-town. Add to it, she sobbed. Typically, when she gets this emotional she has a seizure and falls into a deep sleep and I don’t have to address the issue of how hard it all is with her. I can yell at God, cry into my pillow and get over it while she rests. Not this time. She was so present, so regulated and still tormented by her reality. It was one of the hardest things I’ve gotten to deal with yet, my child sad that we have to go back to the hospital. We cried together and eventually the Beatles brought the smiles back, she is a sucker for All You Need is Love and Hello, Goodbye.
With both the girls at school I got about my business and tried to make a rental car reservation for our time in Boston. I was doing well until I discovered that the airport locations were sold out and the sketchy companies that had cars were charging three times over what is normal. That is when I broke. My mind swirled with the million things that need to happen before we leave at noon on Friday. Laundry, cooking, reservations, bills to be paid, work for the foundation, I need to shower, packing for the two trips and the overnight that Chloe will have so that we can leave by 5am on Monday morning and all I want to do is curl up with a basket of onion rings and sob.
I had nobody to cook for me so I pushed on and so glad that I did. Great things are happening with the Rettland Foundation. When I am not overwhelmed and watching the world swirl around me, I am overjoyed at the awesome that is about to come from our little project. I say all this not to complain or brag about what we’ve accomplished. I say this to ask for help.
You see, I know that we are at the end of our rope and we are not even half way through our marathon. We need a little help from our friends, the Beatles can carry us for a bit but we need help. Between now and the end of June our little family of adventurers will be managing more than we normally do and it is hard, really hard. If you have ever wanted to do something to encourage Claire or Chloe now would be a great time. They are both so brave and take on so much. As always your comments are appreciated, reading them in the hard times goes a long way. We are adventuring out to where it can feel very lonely, the reminders that we aren’t alone really mean a lot.
If you love somebody else out there in Rettland, remember that it isn’t just the big trips that are hard. It isn’t just the hospital stays or extra appointments with specialist. It is whenever there is a series of waves closer together. When you have been treading water for this long, just a few extra small waves can be more than you can handle. Be gentle, be supportive. Thank you.