What Makes it Bearable

I’ve got so much that I want to say about this trip but I just can’t wrap my brain around the words yet. It has been very emotional and I hope to write about it soon.

The last few days have been an adventure in every sense. We were up late washing loads of vomit laundry just hours before our ride to the airport came at 3:30 am Monday morning. Following that, Claire slept for two days, which was a scary way to start the trip. Wednesday Jared had a lot of work to get done so I planned to take Chloe to learn about research while he got to business. The only problem, I spent most of the night with a migraine and hugging the toilet, so when it came time to go, I was in bed, trying not to move.

It wasn’t how things were supposed to go. Jared (aka Captain Awesome) fed the girls and got them to the appointment by 8am and brought a plate of food up to the room for when I was ready for it. He managed to work while the girls watched High School Musical in one of the autonomic recordings and Chloe was a superstar with all the changes to the plan, she rolled right with it.

By the afternoon I had my feet back on solid ground and we went out to meet another family in the trial for dinner. After that we decided to walk the 2.5 miles back to the hotel and it was nothing short of pure joy. Claire giggled as she rolled over the bumpy sidewalk and her sweet smile finally graced us for a while. I listened to the gentle breeze rustling the leaves on trees. Chloe talked non stop about all the things she observed and Jared grinned. IMG_4636I’m finding that Boston is just life condensed. There are days when it all goes wrong and others when it goes all right. The thing that makes it bearable are the people I’ve got with me on this adventure. I’m thankful that Jared and I can be doing this together. I’m grateful for the bond that Claire and Chloe share and how everyone agrees, the priority right now is doing our part to help Rett syndrome.

More to come on the many other very interesting aspects of this trip. This is my lengthy way of saying, I couldn’t do it without my awesome crew.

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

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?

Lucky

Funniest thing. For the second night in a row, Captain Awesome and I were sitting on the floor splitting an appetizer and a beer from the hotel restaurant for dinner while Chloe valiantly tried to not go to sleep. As we picked at the food Jared says, “I can’t believe we are this lucky.” Side note: this sort of comment is why he is often refered to as Captain Awesome. Lucky. Lucky? Lucky that our daughter won the genetic lottery with a disorder that could take her life any night as she sleeps? I laughed as I thought about his statement.

10428498_10152650318310880_8537215995051499458_n

But he was right. We are so lucky. Better yet, blessed.

Claire got something that could be diagnosed. There are trials for it because many amazing families have paved the way for us. It is a gift for Claire to get to participate in these trials, to be able to know she is doing something for herself and her peers living with Rett syndrome.

We’ve been able to have great jobs and family that help so that we can travel to this clinical trial. We are able to rent a car and take Chloe on outings and stay at a hotel that has a great restaurant.

As I sit here I struggle to believe that I am really getting to live this great adventure. It’s so much better than I could ever try to explain. While sometimes it is very scary out front, living on the edge I must admit that the view is spectacular and I am so grateful to take a moment and bask in it.

An Irish Prayer
May God give you…
For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
And a blessing in each trial.
For every problem life se
A faithful friend to share,
For every sigh, a sweet song,
And an answer for each prayer.

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!

Adventure Style

10699965_10152649951256461_5851296882079295041_oAs wonderful as October was, I was so happy to have it over. I wanted to hide under a rock and attempt to process all of the ups and downs, makes some notes on what I learned and spend extra time with my family. So you can imagine my surprise when on November 1st a friend sent me a picture of the cover of a local paper with our picture on the front. With everything else going I had forgotten about the story I wrote for the Nov. issue of Growing Up in Santa Cruz that focused on special needs. Being that I typically live under a rock, I had no idea how widely distributed this was and how many people would read my story. It was an  honor to have somebody share their platform with me. I got chills thinking of who might read the story, the awareness that spread followed by a sense of vulnerability as I really couldn’t remember what I had written, what thoughts was I sharing with those that know me. If you would like to read it you can click here.

photoThe following Monday we had our final event for Rettland this year, a fundraiser at my favorite brewery. A portion of the beer sales were donated, people took our Not Speaking challenge and it was a really lovely time. I hate fundraising but this was a great time. It was more like sharing what we are doing than begging for money, which I am incredibly grateful for.

As great as all of it was, it wasn’t hiding under a rock like I had prepared myself for. Two days later another event crept up on me. With 2 weeks notice, Jared and I decided to renew our vows before we left town to celebrate our 15 year anniversary. Shortly after Claire was diagnosed, I really didn’t think we would see another anniversary. It took years but we came through and we are freaking proud of it. To celebrate we got new rings, we made new promises and we went to Disneyland. It was a surreal few days full of ups and downs. The high I felt out on the cliffs and we said our vows surrounded by people we know and love, the low when everything went wrong at Disneyland and Claire’s seizures robbed us of her sparkling eyes and bright smile to the high when she came back stronger, laughing louder and ready to have some fun. It really is more than I can express so I will share a few pictures in an attempt to explain the days. BY7B0086-2-XL BY7B0132-2-XLBY7B0173-2-XL54309040030 IMG_1448photo 54309040069 54309040090Disneyland was magical on so many levels and still every bit of an adventure. As we prepared to come home I heard that some very big news was coming, Neuren pharmaceuticals would be releasing results from the phase 2 NNZ-2566 for Rett syndrome that Rettland Foundation had helped families get to. We got home late and woke up tired. It was just a few hours and again I was completely overcome with emotion. I couldn’t believe the words I read on my screen, “It opens not only the possibility of successful treatment of adults with Rett syndrome, but also of early interventions modifying the course of the disease.” and “exceeded the pre-specified criteria for improvement in core efficacy measures compared with placebo” It was like a dream coming true. Literally, I had dreamed of a day when there was something know to treat Rett syndrome and then on November 11th data appeared to say that might happen. I couldn’t feel my legs, I messaged with families I knew had been in the trial, with friends that had helped me make it easier for them, the world had changed and I got to be a small part of the process. I urge you to read it for yourself here.

It all reminded me of why I started blogging. When we got the phone call and found out that Claire had Rett syndrome I googled it and it wasn’t good. There were no stories of families living, there were no medical interventions, there was little hope. As we got connected with Katie’s Clinic and found that life was possible I wanted to share our story and the message that life with rett is possible. I share our victories, our anniversary and our vacation because I want you to know that you can. You can get out there and adventure across Rettland. We have to keep living because treatment is coming, faster than I once thought. When the treatment comes we want to be able to have our same wonderful life, only a little easier because Claire can better be part of it.

Suffering Well

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.

This is what suffering well looks like. The day before this was taken Claire's days of seizures broke me and I called Jared hysterical begging him to return from his work trip early. He came home and handled the next two seizures so I could be out of the room. That was 30 minutes before this was taken. Suffering well is easier together.
This is what suffering well looks like. The day before this was taken Claire’s days of seizures broke me and I called Jared hysterical begging him to return from his work trip early. He came home and handled the next two seizures so I could be out of the room. That was 30 minutes before this was taken. Suffering well is easier together.

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.

And Done!

1146675_10151956756280880_1578663801_n

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

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

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

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

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

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

What Maren Can Do

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IMG_1218