Boston Doesn’t Suck but Rett Syndrome Does

I really wanted to beat Rett syndrome. I wanted to out plan it. I didn’t realize it at the start but I feel confident saying that as I look back. When we signed up for the trial I was hopeful that this could be an empowering experience, that we would be able to soar to new highs as world changers. I wanted to give Claire back some of what was stolen from her with this mutation.

The thing is, Rett syndrome isn’t something to win against. It’s an ever-present part of our reality that frankly makes it much more complicated. I want to look back on this process and see it as a series of adventures but honestly it feels more like a repetitive ass-kicking. That said, I’d do it again, in a heartbeat.

We didn’t sign up to get treatment for Claire, that’s not what clinical trials are for. We hope that this will be part of a process that will lead to treatment for Claire and all the girls in Rettland. Most importantly, we wanted to enable Claire to be part of her solution. We wanted her to feel like she made a difference… and she has.

The best part of this process has been seeing her transform outside of the effects of the drug. Claire has developed a confidence that transcends words. She has a peace about her that stems from doing what she could. There is a smirk on her face as she rolls through the airport terminal that subtly says “you’re welcome world”. She has loved getting to leave her mark and I am so glad that we’ve done it.IMG_4905

I promise it hasn’t been all hard, there have been many highlights and that will be my next post. Today I’m taking a moment to realize that even awesome things, when tainted with Rett syndrome become incredibly challenging. We love Boston and being able to be here but it wasn’t an escape from Rettland, more a change in location.

Hope

You know that week when it’s all so much more than you can handle that you just shut down, I’m having that week. Participating in the trial is taking it’s toll on all of us; we’ve been in our new home for a month while construction is almost done; and it’s summer, the absolute hardest time of the year for our family.

With my thoughts in too much of a mess to sort, I have taken to asking Chloe a lot of questions. I worry about her with the high levels of crazy, so asking her questions seems like a good idea. Last weekend we saw the new movie Inside Out, so lately our discussions have been a lot more about emotions.

Twice this week Chloe has sat over her sisters ashen face and sang to her while she waits for her to resume breathing. I waited a little before I asked what emotion she felt driving, would it be fear, anger or sadness? No. It was hope. Chloe went on to tell me how she felt “hopeful that Claire will start breathing again and hopeful that doctors will make a medicine so she can talk”. She was so certain. She knew her sister would return soon and she is certain that treatment is coming. Sidenote: I am dreading the inevitable emotions when that doesn’t happen and trying to relish her innocent conviction.

I hadn’t realized it until she said it, but I had stopped hoping. I was just pushing because that’s all I felt like I had in me, putting one foot in front of the other. Today I am so thankful of the little voice that reminded me to hope. It’s so easy to forget among the medication logs, multiple appointments and constant readiness for seizures.

Today I’m enjoying everyone breathing and remembering that is what gave Chloe hope. I’m aware that my fatigue from travel is giving others hope tonight as they take comfort in knowing trials are happening and progress is being made. I’m hoping with Chloe that the doctors will come up with something because that would be rad. photo

No Safe Adventures

Can’t believe that I am already sitting here, on the plane, on the last leg of our 10 day adventure to Boston. After all, time flies when you are having fun, or trying to just keep your head above water. We knew that it wasn’t going to be a vacation and it wasn’t. It was an adventure on every level. While we were away I saw this quote from Jon Acuff. photoWhen I saw this a giant light bulb went off in my head. This trip is anything but safe and somehow I had been overlooking that. I wanted it to be smooth and easy. It hasn’t been. It has been an adventure, which is what we had signed up for at the start. We enrolled in the trial because I dreamed big enough to believe that with time, there might be a treatment for Rett syndrome one day, not because we wanted to play it safe.

Trials are hard, it sounds obvious but somehow it is glazed over. We signed up for a commitment of over 70 weeks and 7 trips across the country for something that might not help Claire or ever be approved for Rett syndrome. We didn’t sign up for a treatment for her, we signed up for the process of learning and experimenting and we are happy to be doing it. But it isn’t safe and we are at this point very tired.

I wish I had some fabulous update about all of our adventures that went perfectly smooth but that isn’t this story. So here are some of the ups and downs with pictures.

We were so excited to leave on this adventure. We even made it to the airport early enough to take a picture of us all smiling.
We were so excited to leave on this adventure. We even made it to the airport early enough to take a picture of us all smiling.
Our first day of appointments was St. Patrick's Day and Chloe was feeling fairly festive.
Our first day of appointments was St. Patrick’s Day and Chloe was feeling fairly festive.
As much as this trip was all about Claire we tried to make it fun for Chloe. Tea time at the American Girl store was just that. Or as Chloe put it, "Best day ever!"
As much as this trip was all about Claire we tried to make it fun for Chloe. Tea time at the American Girl store was just that. Or as Chloe put it, “Best day ever!”
Chloe was resistant to the new time zone, so we hid in the bathroom until she fell asleep.
Chloe was resistant to the new time zone, so we hid in the bathroom until she fell asleep.

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While Claire and I had appointments Jared and Chloe kept themselves busy at the science museum, the Boston public library and the museum of fine art.
While Claire and I had appointments Jared and Chloe kept themselves busy at the science museum, the Boston public library and the museum of fine art.
Claire was very happy to be back to work with some of her favorite people.
Claire was very happy to be back to work with some of her favorite people.
Claire also was very fancy using her hands to show off for the testing. I may have been doing backflips as I watched on the screen.
Claire also was very fancy using her hands to show off for the testing. I may have been doing backflips as I watched on the screen.
The amazing chef at breakfast took note when I passed on juice for Claire. She can only drink coconut water. The next morning he had some for her along with special pancakes which she enjoyed tremendously.
The amazing chef at breakfast took note when I passed on juice for Claire. She can only drink coconut water. The next morning he had some for her along with special pancakes which she enjoyed tremendously.
It was my birthday so Jared took the girls to the science museum while I took some time to breath deeply.
It was my birthday so Jared took the girls to the science museum while I took some time to breath deeply.

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Chloe zipped Claire all over the solar system.
Chloe zipped Claire all over the solar system.
It snowed. Chloe was over the moon excited.
It snowed. Chloe was over the moon excited.
We learned about shoveling and the importance of appropriate footwear when we got to the house we were staying at while we had a few days off.
We learned about shoveling and the importance of appropriate footwear when we got to the house we were staying at while we had a few days off.
Captain Awesome was a great sport about having to wear my shoes for his first time ever shoveling snow. It was memorable, very memorable.
Captain Awesome was a great sport about having to wear my shoes for his first time ever shoveling snow. It was memorable, very memorable.
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Claire got a horrible cold half of the way into the trip. With two seizure filled days she got a lot of sleep and is still trying to kick the super annoying cold.
Chloe got to make her first snow man. She wasn't phased by a lack of gloves.
Chloe got to make her first snow man. She wasn’t phased by a lack of gloves.
We nearly froze in the process of learning a little history.
We nearly froze in the process of learning a little history.

I won’t go into all the boring details of the many mistakes of Captain Awesome and Miss Amazing. But I did get out at the airport at the completely wrong area with both girls and all the luggage so we took the full “tour” of Logan Int’l. By the time this happened it was pretty much par for the course.

We made the most of it the best we could but it was a hard trip. Seeing Claire sick is really hard. Dealing with that not at home is a whole new level of nuts. But that’s why we are doing this. Because what Claire has is hard and it isn’t going to change itself.

I try to embrace the adventure, I really do. But right now, I’m happy to be heading back to the safety of home. It was good. I am so glad that we can be doing this. But I am very tired.

Numb

photoWe have been away for almost a week. There have been ups and downs. At the start things were fairly smooth. With time, they got rougher. Claire’s eagerness to be doing something gave way to fatigue, a horrible cold and two very trying seizure filled days. We’ve tried to make the most of it. Jared and I have taken turns having fun with Chloe and that helps. Still, it’s hard to feel right now. There is no pleasure in knowing that we are taking one of the first steps of the thousands that will lead to a cure for Rett syndrome. There is no pain as I hold Claire with an ashen face as her body stops convulsing. I have tried to stay connected, to feel it all but I have become naturally numb. Living this vulnerable seems to be more than a fairly stable brain can tolerate.

It’s more than I can process in an unfamiliar environment. I wish I could post about how awesome world-changing is and the hoards of miracles that we are witnessing. Right now we are trying to keep Chloe entertained and get Claire healthy for our appointments Tuesday and Wednesday next week.

It’s definitely an adventure and we are certainly in Rettland. I can’t feel much right now but I know we are doing the right things. I have no doubt. As hard as this is, doing nothing, seeing no change, that would be worse, so today, we just keep swimming.

Happy

It feels slightly ironic. As I sit in our hotel room while Claire sleeps off a seizure I learned that today is the official International Day of Happiness. There is a movement and you can click here to go to their page. Happiness is more than Pharrell’s song and people dancing, though that’s good. Happiness is a choice. The purpose of this day is about connecting and making the world a better place.Screen Shot 2015-03-20 at 2.40.36 PM

One of the things that I have learned over our several trips to Boston is how happy people are to help. We are happy to come be part of research because we believe it will benefit our community. This morning, the cook at breakfast was so happy to surprise us with coconut water for Claire. It doesn’t matter if the act is big or small, what matters is the choice to do something bigger than yourself, to connect, to be alive with the people around you.

I will update more on our trip later. For now I’m tired, and happy. Glad to have made this choice. What makes you happy?

No Doubt

It occurred to me this weekend that it was exactly 8 years since we moved to the Santa Cruz area. I had been very ill and living over 700 miles away from Jared for months. As tired as I was, I was optimistic that the crazy was behind us and the normal happy life I had dreamed of was about to start.

You can imagine my surprise when the next day our pediatrician asked me what happened to Claire. It had been 6 months since we had seen her and she was very concerned. We started early intervention that week and a few months later got the diagnosis.

I’ve learned a lot in 8 years. I’m just as optimistic but also more aware of reality. As I take a moment to pause in between preparing for 10 days in Boston, the crazy of our daily and life and the process of buying and selling homes all I can think is, I have no doubt.

I have no doubt that things are going to go sideways. At the very worst time something very unfortunate will happen. On previous trips we broke the handles to the wheel chair and Claire had crazy seizures in the airport bathroom. Certainly, something like this will happen again.

I have no doubt that we will get the joy of experiencing humans at their best. When you are out adventuring in Rettland amazing people seem to be everywhere. The largest single donor to Rettland Foundation last year was a stranger on an airplane. In cabs, at baseball games, all over the place, we get to connect with really beautiful humans and it is the best part of living adventure style.

I have no doubt that we will make it. Sure we’ve agreed to sell our home and we have no idea where we are moving but it will work out. We will be ragged tired after our trip and not get a chance to recover before life resumes pace but somehow the process won’t kill us.

In a life where everything is crazy and upside down, it’s the one thing I know. When you live big and you dream and you chase it, it will hurt and it will be awesome. I have no doubt. photo

Normal

I think I might be giving up on holidays this year, I just don’t have it in me to do anything more than our normal. Today the reality really sank in. After spending the morning dealing with the practical side of my Chrones disease and my weary body I was determined to get out and have a fairly normal day. After a lot of rain it was finally sunny so the girls and I went out for a walk in the warm sun. Claire smiled as the king tide produced huge waves smashing into the cliffs and Chloe zipped around on her scooter in “ninja mode” whatever that means. It was glorious, it was normal.

It wasn’t world-changing or some huge feat, it was our old routine that we slipped back into like a pair of jeans that are a size too big and it was confidence inspiring after the few weeks that I have had. As the normal day went on I grew tired from Chloe’s copious amounts of energy, anyone would. photo

We took Claire to have her AFO’s refitted as some sort of problem had developed that was clearly affecting her ability to walk and snowballing at a rapid pace. As we walked into the room Chloe bounded to work on her ninja skills on the parallel bars while Claire’s brain started to take her hostage. Her stomach froze and she couldn’t take a breath. Quickly she turned grey and started to convulse. I sang to her as I do and my heart sank. I can deal with stuff like this, I do every day. I can’t deal with this and then go home and make cookies, wrap presents or make dinner for that matter. Christmas is in 36 hours. There isn’t a wrapped gift in the house and I haven’t thought about packing for our trip to Arizona. But we are all breathing which feels like a pretty significant accomplishment as long as I don’t compare it to the holiday festivities of the rest of the world. Is it January yet? I can’t wait to get back to normal.

Don’t Drink the Tulip Water

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.

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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.

Holiday Madness

With Thanksgiving behind us it seems that the holiday madness has firmly set into Rettland. It’s been a hard week for a lot of families dealing with scoliosis, seizures and the reality that growing up is different when you or your sister has Rett syndrome. We deal with this stuff all year but come December, it morphs into a new level of madness.

It is my theory that this is because magically, the day after Thanksgiving society starts screaming two messages at us all:

1. You are not enough, you do not have enough.

2. Everyone is very happy and bursting with love and joy.

Really it is insanity and it gets most normal people down. While we are a lot stronger living in Rettland, we are also more vulnerable. So when we are hit with this on top of the issues with feeding and school and staying alive on a day by day basis, it is hard, really really hard.

Earlier this week I collapsed on the floor crying my eyes out because I couldn’t think of what to cook for dinner. The fridge was empty and so was the pantry. I hadn’t cooked because my Chrone’s had me in a world of pain. The stress of the seizures from Thanksgiving had led me to lose track of space and time and suddenly it was Monday night, I was exhausted, already home before I realized the situation. At that moment figuring what to make for dinner felt like moving a mountain (truly it was as easy as microwaved rice with canned pumpkin stirred in) and it crushed me.

All week I’ve been talking with others in similar situations. I’ve talked with people not living with Rett syndrome and they feel the holiday madness as well but seem to be able to cope. I’ve talked with others dealing with things like depression, disability, grief and health challenges and it just seems like too much.

I wish I had an answer or a magic wand. I wish that all of the pain didn’t compound at years end but it often does. All I can do is keep going. I can put one foot in front of the other on days that I can. I can smile at strangers and be vulnerable and honest with those that love me. Hang in there. Only twenty some odd days to go before we resume typical insanity and I can’t wait. 54309040061

The Last Thanksgiving

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. A rich weekend

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!