It’s been a crazy to think back over the whole arch as we finish the final time point for this trial. I was taken back to when we were first diagnosed. We were given paperwork for a disabled parking permit and Make A Wish and sent home. All the doctors and specialist that filled the schedule while we searched for the answer were suddenly a thing of the past. Everyone knew that there was nothing that they could do for us.
When we enrolled in the trial part of the appeal was in getting to go back to a place where there were doctors that were trying to help. I’ve been nervous to step back outside of that as we wrap up this process. There is an odd comfort that comes from being involved with medical professionals. It’s a false comfort as they weren’t actually treating Claire, but it felt good.
I wish I could better describe the last 10 days or better yet, what we’ve experienced over the last year and a half. All I can come up with is that I’ve changed. Claire’s changed. Jared and Chloe have to. We got to try to do something to help Claire. Three years ago, that option wasn’t on the table.
Today we are on our long journey home from the hospital. Claire is peaceful and proud of what she’s done. Seven years ago we would have never dreamed that she would be able to do anything for herself, much less be part of changing the course for Rett syndrome. Until we started the trial we only knew a Rett syndrome that took.
Today I see the potential for a life with Rett that can get better. The game is changing. I’m not sure what to do with that, other than to keep dreaming. This has been hard but it’s not time to give up. Not yet.
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.
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.
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. I’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.
Things have been fairly eventful and I’ve wanted to write but haven’t had the time and energy in the same moment. Eventually I will get back to stories from our adventure but today I need to take a moment today to say how over the top fabulous Jared aka Captain Awesome is.
It’s Father’s Day. I know that there are a lot of great dad’s out there but I want to shine the light on Jared because he would never step into it himself. He has fathered so much bigger and better than I ever dreamed when I was swooning over him in high school math class.
It hasn’t been an easy road. He’s loved the girls so hard that he’s already gotten his heart-broken a few times, Rett syndrome will do that. That hasn’t kept him away. When the seizures and questions about death stop he’s right there to play pirates and get sparkly glitter tattoos while reading stories about fairies. When he walks in the door both the girls perk up because dad being home makes everything better.
He’s not a superhero for what he does day in and out any more than I am. We are both doing our best as most of you out there in Rettland. It’s gnarly and complicated and beautiful and rewarding. It’s real and it’s our life and I am so glad to have you with me Cap’t. You are doing one hell of a good job!
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. When 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.
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.
We 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.
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.
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.
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.
I’ve had a few better days since the last post. Thank you to everyone who reached out in support and prayer, it was deeply appreciated. It is amazing what a difference some kinesio tape can make coupled with a decrease in seizures. It no longer feels like the city is burning down around me, more like sitting in a pile of ashes, looking around and not knowing where to start.
We leave for a long trip to Boston in a few weeks to resume the IGF-1 trial. Our condo goes on the market next week and I assume that some time soon we will need to find where we will live next.
There is an odd sense of peace, maybe complete and utter exhaustion is a better way to describe it. Claire only stopped breathing once today and when I was writhing in pain I didn’t have much else that needed my attention, so I could sit and be still instead of having to push through.
I keep looking back at times we have been through that have felt worse and we made it through. I know somehow I will again have energy and we will be back to adventuring.
If you are out there, trying to figure out how you are still so tired on the better days, you aren’t alone. Living in Rettland is just so tough that sometimes even the better days will leave you ragged. Don’t give up. On the bright side nothing stays the same for that long here either.
Yesterday I shared this picture. Claire’s physical therapist is on vacation so we had a little extra time after school. It was sunny and warm so I figured a walk by the waves would be fun and it was. But there is more to the story. Monday was horrible. Massive seizures while I had diarrhea was a horrible way to start the week. The day finished with more seizures accompanied by massive 5-year-old meltdowns and a mom who curled up on the couch with take-out and three hours of tv as soon as they went to bed. It was not the wonderful start to January that I had hoped for.
Then Tuesday came and it was a new day. Claire’s brain and my intestines both felt better. Chloe got a good night’s rest and was back to her positive and vivacious self. So after school, for no reason other than it seemed like a good idea, we went and got ice cream and took a walk to have fun. As we walked and Chloe rode in figure 8’s down the path I thought about last year and this year and being awesome. Last year was so full and wonderful I am nervous about following it up. Then the lightbulb went off in my head, it was awesome because that was the choice we made and I can continue to do that. It’s the small things as much as the big things. We all want to live in an awesome world and it really isn’t that hard. On the days that it works out and you can, go be awesome.