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.
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.
Grief is a funny thing. It isn’t the hard times that take my breath away. It is when everything is going along fine, then it creeps up behind you and suddenly you are standing in the middle of Whole Foods trying to catch your breath and praying the chest pains ease. That was today. It was abnormally wonderful outside. It rained a little bit last night so the air was warm and moist this morning. The sun burned off the fog quickly and a gentle breeze blew. Jared and I got into it a little this morning and before I finished angry ranting in my head while I took the girls to school he called to say sorry and all sorts of sweet nothings. Really, it was a great start to the day.
I went to physical therapy and stopped by the coffee shop to catch up on email and got to chat for a while with a friend. I went home and decided to leave the mess and sit on the cough and bask in the glorious weather. After leftover pizza (my most favorite lunch ever!) I went to go get Chloe from school. I decided that we would go to Whole Foods for jelly beans and disguised the trip by getting some cucumbers and celery for juicing along with some milk and a kale smoothie. So there I am, waiting for my smoothie and I remember we need coffee. I ask Chloe if she wants to get it on her own. She then walks around the corner and comes back with a bag of her dads favorite beans. It was so simple, too simple.
I took my smoothie from the counter while Chloe put the beans in the cart. We strolled over to the milk section, Chloe pushing the cart and me just walking along, sippin’ my smoothie and that is when it hit. I don’t know that I have ever walked through a grocery store not pushing or carrying something. It literally took my breath away. It was one of those happy things that is sad because it is so foreign. It was a painful reminder of the reality of my motherhood. From there we went to pick out flowers for me. Chloe surprised me with purple tulips, for Rett Syndrome. We added red too, for mommy.
Mother’s Day isn’t easy and for many of you it is more complicated than I wish it was. To my friends that don’t have all their babies home to kiss, to those that can’t call their mom to say hello, to those out in Rettland that will look deeply into their daughters eyes and wonder, I send my love to you all, it is an honor to get to walk on this journey together and I hope that you get a day or an hour or a few minutes where you are made to feel like the gift to humanity that you are.
It is weird to adjust to life spent thriving and I am certainly not there yet. We spent many years coping, surviving, barely making it through each day. I am still coping daily and struggling each day but it is different. It isn’t just hard, it’s good too. It is the moments where both joy and grief, beauty and pain, hard and good are equally represented that I have found to be where I thrive. Those are the moments that are 4 dimensional, so real, so vivid that you second guess the reality of it. Without the hard, good stuff is good, but it is flat, 2 dimensional, it lacks the vividness that comes from struggle.
Today marks a big day on my journey living a life spent thriving. We are having a birthday party for Chloe. I know it doesn’t sound like a big deal but it is. To start I am not the party type, it just isn’t my thing. Add to it that birthday parties were one of the hardest things when Claire was in preschool. The few that she got invited to were awkward and heart breaking. We didn’t dare ever have a party for her. An exception was made when Claire turned 6 and we had the whole ABA team there for support, that’s another story. Birthday’s have just always been hard so we play them down. Enter Chloe, the preschool scene and the fact that she is a social butterfly. We’ve been attending parties and I can do it without almost passing out now. Chloe can also speak and articulate exactly what she wants so this year, in the spirit of thriving, she’s having a party. Of course, she wanted to have a gymnastics party and was adamant that her sister be there. So in a few minutes I will pack up the car and head down to get the cake and set up. Chloe’s friends will come and the room will be filled with typical girls laughing and jumping and using their hands to play. The parents will stand on the side and watch and I will attempt to keep it together, for Chloe.
I will take pictures of our courageous, beautiful, loving child as she frolics. I will check on Claire constantly to see if she is breathing. It is likely that as I go back in forth my heart will break and over flow with joy repeated and that is what life spent thriving looks like. Pretty sure I will be exhausted but I will be damned if I have regrets about it.
I assume a lot of 4 year olds forage for pennies to toss into a fountain and make wishes. Chloe does. She recently found a collection that she had forgotten about and begged to go to the mall and make wishes after school. I really didn’t want to fold laundry so I obliged. As we got closer to the mall she asked the profound question, “Why didn’t my last wish come true.” We had a discussion about how throwing a penny won’t really make anything happen but that hard work and good choices can get things to change. Then I asked about what the wish was that went unfulfilled.
It was about Claire. Her wish was for the medicine to let her play with her sister. Claire’s been getting shots for a few weeks now and Chloe has noticed that she isn’t all better. Her wish didn’t come true. We talked about her lemonade stand and all of the other families out there running marathons and holding strollathons and working together to make a better medicine. We talked about how things in life just take a long time. As fast as research for Rett Syndrome is progressing, it’s a lifetime in Chloe’s eyes and not fast enough.
We went to the fountain and she through her pennies one at a time while closing her eyes. When she was done I asked if she wanted to share her wishes. First was to be a pirate and then to be a mermaid. There were a few more along those lines and I thought we were in the clear. Then she shared her last wish. “For Rett Syndrome to just go away, not like get a medicine that helps a little, just for it to like, go away and then Claire just wouldn’t have it.”
Things are still going pretty well. Claire’s been good. We found the sinus infection and got the antibiotics going before the fever and seizures began their vicious cycle. I’ve been taking care of myself a bit better, making time to paint and take pictures and space out at the beach. I’ve been a better mom, choosing to let stuff go and to be present and laugh and play with the girls. I’ve had friends holding fundraisers for the Rettland Foundation and seen strangers step up to help out families, it is awe inspiring and I can’t believe I get to see this beautiful side of life. There is so much good. It is easy to sit rattle off a long list of what I am grateful for.
Then people ask questions. How are you? How’s it going? I feel torn and don’t know how to answer. My honest attempt comes out, “It’s complicated.” We aren’t in crisis but that brings its own challenges. When the heat turns down the adrenaline subsides and I can’t stay awake to save my life, ironic, right? Jared and I drift apart as we float in the direction of normal. Still, life is far from normal. I’m still spoon feeding our 8 year old. She still screams in anguish that she can’t articulate what she wants, which is pretty much just not to have Rett Syndrome. Even when we make the most of it it is still very hard. Even the good rett days are harder than a lot of people rough days. Does it really make it alright just because I’m used to it? At the end of the day I just have to choose that it is enough, that this is what we have, this is where we are and that’s a lot easier to do when things are going in the right direction. So yes, it’s complicated, we are good, not because its all better but because that is the decision we made.
I 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.
Our 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. After 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. Chloe 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. I 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. It 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. The 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.
Days like this remind me of A Tale of Two Cities. “It was the best of times, it was the worst of times.” Yesterday I woke and checked my inbox to see if we had received confirmation from Boston. While there was no news on that front I learned that the world lost a beautiful soul that morning. Brianna had been fighting to recover from a pneumonia for a while and Monday morning she was set free, to dance and use her body as she pleased in heaven. I nearly choked on the knot in my throat and lost my breath for a moment, perhaps this is how Claire often feels. I took the girls to school and basqued in the vivaciousness of their laughter.
Once they were both in school I called Boston again, nothing. If ever there was a time that I would like to feel like I was doing something, it was that moment. Would we be able to give back to our community by participating in this trial? How many more friends will we lose before help is available. I sat and watched the waves as that seemed to be the limit of what I could do in that hour. I prayed, I breathed and I opened my hands. I sat in the sand and cried, for the family that had to leave the hospital without their child after such a long fight, for Claire as I know she is so ready to be done with it and we are such a long way away. I thought about the overwhelming task of going to Boston if we are excepted and about what we do if we aren’t able to go.
I gathered myself and figured that either way, I had to get some sort of grip on our life as the fridge is completely empty and there isn’t a clean pair of socks to be found in our home. I called friends to distract myself and pass the time. Then I called Boston again, just in case there had been some change in the last 90 minutes and it’s a good thing because there was. The research assistant answered and replied that she was just about to call me. The team was done reviewing the neurology records and decided that we qualified to participate in the trial now. “You can finally be excited now.” It started in September, we waited and waited some more. Then we went to Boston and waited some more and now, now we can be excited.
I nearly passed out, then I felt like I might puke, I cried some more and began to share our exciting news. October 2007 we were told that Claire had Rett Syndrome and that there was nothing we could do. We were told she might just die in her sleep or that she might live a long life. We’ve seen too many of Claire’s Rett sisters leave us too soon. But today, today we are given a chance to change that. This treatment might help Claire with breathing and if it does that would change our world on epic levels.
So while my heart broke, it also soared. As the day went on and Claire got to share her news with those that we saw I learned of another two girls with Rett Syndrome that left this world. Three in the same day, so bizarre, it’s unfathomable that it happens at all, but 3 in the same day?!?! At the end of the day, after the girls had been kissed and tucked in I sat and tried to wrap my head around the events of the day. We are going to Boston, Claire will receive treatment, families are grieving and friends are pulling together. What a whacked out and beautiful scene it is. I remember the soft sound of the waves and the uncertainty that swirled around in my head. There is still so much that is yet to be known and figure out but what I do know is that right now, with what we’ve got we are doing the very best that we can. And it is enough.