Thriving

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. IMG_0263

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.

It’s complicated

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.

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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.

Decisions

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

And Go!

 

10006198_10151954711455880_1428718557_nMy last post I shared my mixed emotions about all of our upcoming adventures. Now I sit, 35,000 feet up in the sky and it is nothing but sheer joy. Certainly it was hard to say good-bye to Chloe and Jared but Claire and I are having a blast. For 3 hours Claire has been hanging out, watching some videos, eating, nothing too exciting but she is just so calm. There is an overwhelming sense of support and love from the people in our life, thank you for all of the texts and facebook love. Both myself and Claire deeply appreciate the knowledge that we are not doing this alone.

There is something about being on the plane to Boston that I actually feel like I might be able to help Claire in a very real way. As I think about this if literally feels like weight lifting from my shoulders. As I sat back thinking about it all I noticed Claire point to her ear as she grew a little uncomfortable. I told her some juice would relieve the pain and it did. It was awe-inspiring to see her use her body like that and it allowed me to imagine what else could be possible.

Sure I was still super awkward helping her in and out of the small airplane lavatory but instead of frustration she laughed. Audible Claire laughs are so rare and I got one hunched over trying to put her pants on while she pulled my hair for balance, it was marvelous. She had a giant grin on her face as we walked back to our seats. She spoke to each of the first class passengers. She passed them using her proud confident eyes voice and each of them listened very carefully. I love getting to watch Claire do her thing, inspiring people just by being herself.

I don’t know what chaos or adventure is ahead for us on this leg.  But I am optimistic to have things start on this foot. I am so relieved to be to the part where we are doing it. After all of the hard stuff, feeling the vulnerability or stepping out there, it really is amazing to get to relax into the good part and I am looking forward to watching it unfold. Thank you so much to each of you out there for keeping us company on this adventure in Rettland, we couldn’t be doing it without you.