The English Take Boston 2014

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 autonomic recording by far took the most time. The hard work of world changing can be incredibly boring.
The autonomic recording by far took the most time. The hard work of world changing can be incredibly boring.
Despite the boredom Claire was very happy to be in Boston working hard.
Despite the boredom Claire was very happy to be in Boston working hard.
Claire loved the EEG and blazed through it in 41 minutes.
Claire loved the EEG and blazed through it in 41 minutes.
Even coming down with a cold Claire loved being at Fenway for a game.
Even coming down with a cold Claire loved being at Fenway for a game.
Chloe loved the Red Sox game and proclaimed it “the awesomest thing ever!”
We were scheduled 4 hours for the Mullens testing Claire completed it in 25 minutes. Her focus and determination amazed us all!
We were scheduled 4 hours for the Mullens testing Claire completed it in 25 minutes. Her focus and determination amazed us all!
We all loved our day off at the museum. Claire really loved getting to see so many different paintings.
We all loved our day off at the museum. Claire really loved getting to see so many different paintings.

photo 3The next few pictures are from our great Cape Escape.

It was a treat to head out of town and get to meet up with some fantastic moms who have helped paved the road that we walk.
It was a treat to head out of town and get to meet up with some fantastic moms who have helped paved the road that we walk.

IMG_1210IMG_1198IMG_1202IMG_1221IMG_1235IMG_1261It 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. IMG_1275IMG_1285photo

Our final appointment. Dr. Kaufman stopped by just before the seizures started, it was a sweet moment just before the storm hit.
Our final appointment. Dr. Kaufman stopped by just before the seizures started, it was a sweet moment just before the storm hit.
Across the country this cutie was "nervouscited" about her first day of kindergarten.
Across the country this cutie was “nervouscited” about her first day of kindergarten.

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.

Not IF but WHEN

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.photoI 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.


Last day of 2nd grade!

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.


We are in an amazing place right now. It is rather surreal and I often look around and wonder how we got here. As I had coffee with a friend yesterday and shared some of our stories from the trip to Boston it dawned on me the size of our adventure. Her jaw dropped as I told her that I took Claire to the Red Sox game by myself. I’ve had that reaction from a few people. It honestly never occurred to me that it was a crazy decision until I saw people’s reaction. Looking back, I can see the risk, I can see all of the things that could have gone wrong. In the moment I didn’t see it as a choice, but it was. I could have chosen to sit in the depressing hotel room and to cry but it just didn’t seem like an option. I had enough of that and we were ready for life. Really, aren’t we all and maybe we just don’t know it?photo

I suppose it is the silver lining of living in Rettland. There is little mundane. Everything is sink or swim, fight or flight, there is no room for maybe. In a way it saves me from slowly slipping into that dark hole of bad choices. When the decision is between treatment for RTT or not, the decision is obvious. When the choice is to let uneducated people determine critical things for Claire it is obvious, I advocate, I educate, I cannot let her life be compromised by the system. In that process I bring all of my being because that it what it requires, anything less and Claire could be in danger. When I do this the payoff are huge. When you push and fight for it, the day that it comes sends you over the moon. It isn’t always because it is a big thing but because of the work that went into it.

It is an odd privilege to have so few things that are mundane but it has led me to such a beautiful life. The smiles are cherished, the flowers are smelled, the laughter is loud and the stuff that doesn’t matter as much just never makes it to the top of the list. We all have lives with this much beauty. I was pushed to see it because my only other option was a dark hole. Wherever you are in Rettland, I hope that today you get to fight for something and that you get to see beauty that surpasses what you expected.

Off Guard

It caught me off guard. I had been so wrapped up in keeping Claire alive that I had completely forgotten about the trial. Friday we raced around to unexpected heart checks and to the pediatrician for the ear infection that was driving the seizures and vomiting. Saturday night I was just glad that Claire could hold finally hold her head up on her own even though we still had to give her liquids with a syringe. Monday I was glad when she could take a few steps before collapsing in exhaustion. Tuesday I was deeply relieved to have that small spark back in her eye and that gentle smile that hides most of the time. With those two things I was content.

Further proof that Claire is ready to be done with Rett, she smiles for her shots.
Further proof that Claire is ready to be done with Rett, she smiles for her shots.

You can imagine how I was caught off guard. Claire’s blood sugar was a few points above the number that we call 911 at. I fed her gummy bears and waited to check again. I played it cool for the sake of the girls. A friend came over to talk to Chloe while we hung out in the car. That is when it happened. Claire looked left when this friend asked her about Boston. Looking at people when they say hi is a challenge on a good day, turning left to do this is a huge feat. I stood there watching, my brain watching the clock as I needed to recheck her blood sugar and my heart pounding as I couldn’t believe my eyes. She was free in that moment, to turn her head, to smile, to express herself right away while the other person was still listening, it was surreal, pure, unexpected joy.

I had prepared to get the placebo first. I had prepared for the drug to make little to no difference. I had not prepared to see Claire a little freer. I don’t know if we are on the drug or the placebo. I don’t know if the moment of freedom was the result of the antibiotics or the 24 hours of sleep that she got over the weekend. Maybe she just got a good nights sleep. It doesn’t really matter. Yesterday Claire was free to express herself a little more than she normally can and somehow I was coherent enough to notice. It was the reminder I needed. The reminder of the high value of the small things. Sometimes it is learning in school, playing with friends, putting in hours of therapy or injections of a mystery substance. We are doing this because a little difference can change the world.

Boston Awesome

10009934_10151992970070880_1581000096324920769_oI am sitting on an airplane headed home again and overwhelmed by just how awesome the last few days of our trip went. Our time away at Cape Cod was really good. It took a full two days for the adrenaline of the last few weeks to subside a little and I began to feel human again. Chloe turned the corner just in time and we were spared a trip to urgent care which was a great way to start the week. As we drove back to Boston Claire beamed with excitement. She was ready to get back to the business of clinical trials and world changing.

photoOur new hotel couldn’t have been more amazing. At check in they upgraded us to a beautiful view and added a bunch of stuff to make our stay more comfortable, just because. After sleeping in a bit and a lovely breakfast we were off to share our new world with Jared and Chloe, it was really exciting. Jared was amazed by how people drive in Boston and how well I manage it. Chloe had a million questions about everything and Claire was so calm, so happy to have us all together, trekking off to do what we can to make life with Rett Syndrome a little better. I enjoyed just how easy it all is when we are all together, a complete team makes such a difference.

Chloe watched Claire get hooked up and get to the important business of watching movies while monitored. It was so relaxed and natural, to all be in a little room, watching a movie with wires all over Claire and several cameras. I suppose it could be sad that we spend that much time in doctors offices but it is just so awesome that we all enjoy doing it together, it’s a gift that I treasure for now. At the break Claire took Chloe upstairs to get her going on her test. She loved watching her little sister bravely get set up and educate all the researchers about the Pirate Fairies. Chloe did so well, I just can’t say how proud of her I am for choosing to be as involved as she is. 10001413_10201812671463474_4046510614387931314_nAfter the days data had been gathered we headed out on the town for a little adventure. Claire and I had been wanting to see the finish line from the marathon. As we walked up to it I nearly lost my breath. My friends were part of Team Rett last year and they didn’t get to cross that finish line. Much like they didn’t get to see their daughters blow out their own candles on their 3rd birthday cake. Something that seemed so certain and taken away so suddenly. Yet, soon they are coming back. This year they have raised far more money and awareness as they come back stronger. And there I stood, at that finish line, with Claire, the day before we start what might be treatment for Rett Syndrome. A treatment that might allow Claire to blow out her own candles, with her own breathe. There is something really special about not getting to finish and going back, in a way I feel like this trial is a bit like that for us. 10154259_10151992569710880_6076214292283447961_nChloe was exhausted so we went back to the hotel after that. Much to our surprise, just after we got to our room there was a knock at the door. The chef from breakfast sent up chocolate covered strawberries, an assortment of juices and some wine along with a lovely note. In about 15 seconds that simple gift transformed Chloe from an overtired and whiny 4.5 year into the most grateful, happy little human. It was amazing how the timing couldn’t have been better. That night we stayed low key at the hotel and tried to go to bed early before our big day that started at 8am at the hospital. photoI wasn’t really surprised when Claire woke up early this morning. She typically takes a little while to warm up but not today. Today she was ready to go, ready to be done with Rett Syndrome. We got ourselves together as quickly as we could, ate breakfast and headed over for “the big appointment”. There was lots of boring formalities and such but Claire had her game face on and was ready to go. She was done testing, she wanted to start the shots. She meant business. photoIt all went well. We had a lot of laughs with the doctors as they asked us a million questions. Claire was weighed again and all of the papers were filled out with directions so we don’t screw it up. Eventually a really fun and smart nurse came in and walked me through giving Claire her first shot. Claire was fine, I nearly passed out. I hadn’t anticipated what it would be like to give her a shot like this, it was a thing, a very big thing. And once that was over we checked her blood sugar and headed out of town. photoThe whole thing is just crazy awesome really. I am sitting on a plane somewhere over Colorado. I just gave Claire her second dose (yes, on the airplane) and now she is sleeping. Her body is calm so far from the spastic sleep she experienced on our last flight home. I don’t think it’s the medicine. I think that it is us fighting for her. Claire knows that we are not joking when we say we will do anything to get her better. There is a peace that has filled her body just from the process. It’s come from meeting several other families with Rett, from seeing the finish line and talking about all those that are running so that one day she car, from being with doctors and soaking in their words as they talk about the future of research and Rett Syndrome. It is all just so good or as Chloe has started to call it, Boston Awesome. photo

Definitely an Adventure


It has only been 5 days since I last posted but it has been a very full 5 days. If you define adventure as the moment that everything goes wrong, well I would say we are there. Somehow, at the same time just as much is going right and we are having a pretty wicked good time. Claire was happy that Wednesday and Thursday had testing that required a little more work. She was underwhelmed that the first day was just being monitored while we watched movies and welcomed the more active tests. photo 1 photo 3While the testing got more fun, life away still wasn’t easy. I wasn’t sleeping well as our hotel was right by the big hospital and some sort of construction yard that moved giant loud things early in the morning. By Thursday I was desperate for a win so we decided to go to the American Girl store for dinner. It was 30 minutes away but we had plenty of time to spare and really needed some fun. Just as we got close Claire had a pretty good seizure and my phone completely died, it was far from the fun that we had hoped for. In the midst of it we met some of the kindest people. The server at the AG cafe was beyond wonderful and charged my phone while we dined. The only other group eating made a point to say hi and how cool Claire’s chair was as well as comment on her sheer beauty. Claire was more interested in the fries but at least she could let me know what she wanted, food. photo 5I was mildly renewed as we went back for our final night before Jared and Chloe joined us and we got out-of-town. I imagine it’s a little like you might feel half way into a marathon, right before you get a little tail wind. Friday morning we checked out and went in for an echocardiogram. Claire handled it like a pro, as she always does. She held so still the tech couldn’t believe what good pictures she got of Claire’s heart. I am just so proud of her.

Once the testing was done we got to go have some real fun! We had 8 hours between when we were done and when we needed to go get Jared and Chloe. Earlier in the week, when I was down I asked my friend Kim if there was any chance of connecting us with tickets to the Red Sox game, which happened to fall right in that window. Apparently it was their home opener which is why I couldn’t find tickets, this game was a really big deal. Prayers were answered her son-in-law, Steven Wright (watch for him #35 I hear he’s got a heck of a knuckleball) was able to get Claire and I in for her first baseball and it was nothing short of amazing. To start there was Danny the usher, who moved Claire’s chair to a safe place while we sat in the real seats and came and checked on me every few innings to ask if I needed anything. Then there was the complete stranger who gave Claire is warm jacket on top of her blanket and the other stranger who gave Claire a knit hat to keep her ears warm. I was blown away by how wonderful everyone we met was. Eventually we got cold and went back to the wheelchair area. Claire got her own hat and another blanket to keep warm because she really wanted to stay and watch the game. photo 1

The girl loves baseball and it was such a gift to watch her take it all in! I think I see more games in our future. As we left some nice guy came toward Claire and handed him his opening day hat. He got down and told her how she is a hero. We said thanks and got on our way, excited to surprise Jared and Chloe at security. It was wonderful to have the rest of our crew join us even if Chloe was miserable and sick.

Before we headed out-of-town we went to grab some food. Our friend told us about this great pizza place that was close and even called to get us a table. We sat in the back of this quaint little place, both of us in shock, that we were all together, in Boston, so good and so surreal. Then, out of nowhere, this guy walks up and says, hey, I remember you, that’s my hat! It was the guy from Fenway, SMALL WORLD! IMG_4269

He introduced himself and we talked a little, he wanted to introduce us to his family. As we left we went by their table and all 20 of them clapped for Claire. Again, he got down on his knees to talk to Claire and tell her of his admiration. This could have been really creepy, but this guy was so authentic and genuine. He told us how his dad was a doctor and he was in the field. It was sorta cool for a complete stranger to address Claire as the rockstar that she is.

After that we ran through the freezing rain to the car and drove out to Cape Cod. It was so nice to get away from Children’s and go rest for a few days. The picture doesn’t do it justice but I went from waking up to the top picture all week and then the view on bottom for the weekend. It was peace and quiet that our whole family deeply needed. FrameMagicWe were all so tired. Both Jared and I had marathon weeks. Chloe has been exhausted from being sick and Claire loves life at this speed so it’s been great all the way around. Just to keep things from getting too comfy Claire’s wheelchair broke.

photo 3It’s a very vulnerable feeling to be away from it all, on the other side of the country with several days before you get home and have your fragile child’s wheelchair that you depend on break. Thankfully Jared was with me because somehow, when we are together this sort of stuff doesn’t phase us. We laughed it off and asked the rett mom we were meeting in the morning if she could spare some duct tape for us, problem solved. This morning we got to meet up with Jillian and her fabulous mom Jennifer. Claire was very excited to be with our extended rett family, for that matter, we all were. photo 4Our rest away is just about wrapped up. I will take Chloe to urgent care before we head back to Boston in the morning, hopefully it will be a very quick and boring visit.  Claire has two final days of stuff for the study before we fly home Wednesday night. It’s been a long trip with so many ups and down but we are better for it. Maybe it’s because I am delusionally tired but I really think that once we get home and rested I will look back and be better for all the steps on this journey. Already I am so thankful for all the paths that we have crossed. Strangers, facebook friends, random hospital people, we have connected with so many and it has been a beautiful gift. Thanks for bearing through the wordiness of this post as I am too tired to edit. Hopefully the next one will be much more succinct

Two Days In

As I sit down tonight I struggle to say much more than we made it through the first two days. It has been exhausting. Yesterday was cold and blowing ice so we stayed in our hotel room while we recovered from our red-eye across the country. It was very hard, it was very quiet. The quiet pierced me more than it typically does, perhaps because I was insanely tired. It magnified why exactly we are here. At home, when Chloe is playing with Claire or at school among friends that love her, I see the problem less. Here, just the two of us it is blatantly clear and it is terrifying. I am reminded of how fragile Claire is and how restricted she is, despite our efforts to make her life awesome, and it is.

After sobbing while I fed her dinner last night and apologizing for being a wreck we both attempted to sleep. While it worked better than it did in the airplane the improvement was very slight. I woke up with a raging headache. By mid day my back and shoulders were yelling at me. It felt like somebody was sticking their thumbs through the back of my skull and attempting to push my brain out my eyes. I slowly stretched and drank as much water as I could as I suspect dehydration was at the root of this. Through it all, Claire was a champ. She was gracious with me and clear in her requests. She really wanted clam chowder and we had agreed to not eat dinner in the room each night, so I agreed.

Claire was happy that we only had 5 minutes left when this was taken. Sometimes world changing is boring work.
Claire was happy that we only had 5 minutes left when this was taken. Sometimes world changing is boring work.

We found a nice big mall to walk around in. Claire picked out a few items for an in room spa night later in the week and some aromatherpy for our pillows in an effort to get better sleep. We found a place with Chowda and sat down to eat. That is when I found out that Chloe needed to be picked up from school because she has a fever. Claire endured me being on the phone during our special dinner out (my soul cringes at this) and as soon as we were done we headed back to the hotel as we were both exhausted.

On our way back I made my first wrong turn of the trip and had to make some tricky maneuvers to fix it just as Chloe called, so sad, sick and missing her mommy. My headache raged as we drove into the sun. Jared called and I broke down (poor guy, he gets most of my crazy) Chloe’s sick, I feel horrible, Claire still has Rett Syndrome and all I want is for our little family to be together. He reassured me and we got back to the hotel without further incident.

I gathered up Claire and our bags and stumbled into the lobby where the lady at the front desk gasped as she saw me, ‘hold on’ she called out. Ugh, I turn around and there are flowers for us. Captain Awesome managed to have flowers waiting for me less than 5 minutes after I completely lost it and nearly gave up. The perfect flowers too, the ones from our wedding and a butterfly, a symbol of strength that I have been holding on to. I am so blessed to get to do this with Jared’s support, I really couldn’t do it otherwise.

Traveling for clinical trials is very hard. Physically, emotionally, financially, psychologically, it is hard on every level. It is not a vacation even though we will work hard to lace fun things through out the process. One of the coolest things about our Rett family is how supportive you all are. Keep it up, thank you for the encouragement that you are sending our way. Let’s make a point to remember that every family in a clinical trial is walking with an amazingly heavy load on their back. It is an honor to get to be doing this but it also a very difficult process.

And Done!


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.

Everyone is excited for Boston, I’m not.

We’ve been talking about it for a while, all of the excitement about the IGF-1 trial in Boston. It started at an IRSF conference that I went to where I heard doctors discuss the promising research. I talked about it with our neurologist once I returned. I was so excited that maybe within 3-5 years there might be a medication to help Claire. Claire’s response was different. Tears streamed down her face and her lip quivered as she used her eye gaze computer to tell me “long, hard, live.” To a five year old that must have seemed like an eternity.

It was just two and a half years later that we were accepted to come for our screening visit and it will be under 3 years when we start the trial. It seems like such an exciting thing. Everyone we talk to is excited for us, they can’t wait to see what Claire might be able to do. It is exciting, it is world changing and that is a huge thing. Yet I wouldn’t say I am excited. Right now I feel more terrified, overwhelmed, unsure and fearful. After all, I only applied for the trial after I was dared to dream bigger and more audaciously than I ever had before. I knew that my big dreams would lead me into unsafe territory, if it felt safe the dream wouldn’t be that big.

You might wonder, why all of the negative emotion, treatment for Rett Syndrome is such a good thing. It is. I want treatment for the girls, for their sisters and brothers, their mothers and fathers and their friends just as badly as everyone else. But it is a change, it is unknown. It has taken a great deal of work but we have come to a place of thriving inside Rett Syndrome, the way it is. We have adapted to the seizures and the stiffness. We have integrated communication strategies to reduce everyones frustration. It has been six and a half years since we heard the words “positive for Rett Syndrome” and we are finally getting into the swing of things.

Just as we settle in to our nice little life, it felt like an atom bomb landing in our lap when we were notified that we could go to Boston and participate in this trial. If the medication doesn’t change our life I am pretty sure that 7 trips to Boston and at least 50 nights in hotel inside of 66 weeks will. It’s an adventure, if it didn’t shape us that would be a crying shame.

So I start to prepare for our flight Monday with an uneasy stomach. I start to think about what to pack and I lose my breath and get a little light headed. That is what life feels like when you are doing things that terrify you. The lesson that I am learning in this is that just because it is scary doesn’t mean you shouldn’t do it. It just means it is scary and shouldn’t be done alone. So I lean in to those closest to me for comfort and those of you out there to help me remember why we are doing this. We are doing this not because it is easy or convenient but because Rett Syndrome isn’t. Because UNLESS someone like you cares a whole awful lot, Nothing is going to get better. It’s not.