The World by Chloe

She talks, she never stops. When she started to speak a while back I was in awe. It was a miracle. Still, I am in awe when she speaks, more because of what she says, so I thought I'd share some of the world from Chloe's perspective with you. Here are a few of the things that she has said in the last week and a little of their context.

During nap time I overheard her leading circle time, to her imaginary friends he says, "brass monkey, what song do you want to sing? The funky monkey? Alright I can play that on my guitar."

In the car, listening to Airborne Toxic Event, "When I grow up, I want a rock n roll accordion that is bright purple with pink polka dots!"

She doesn't just say fun things about music, in fact, most of the more surprising things that she says involve her sister, who she cares so much for.

In line at Chipotle, another little girl stared at Claire. Chloe, "Mom, does she have rett syndrome? Look, she's talking with her eyes!"

I'm trying to make the beds and the girls were playing in the other room. I called out to ask Chloe what she was doing. Chloe "Nothing mom, nothing! I'm just trading mouths with Claire." Me, "What?!?" "I traded mouths with Claire, so not I have rett syndrome and she doesn't"

Watching the movie Tangled, there is a mime in the scene, "Look, he has rett syndrome too!"

When I picked her up from school last week, Chloe's  teacher explained that during snack time, when the bowl of oranges was passed to her she just looked at them. The teacher asked her if she wanted some to which Chloe exclaimed, "I said yes with my eyes!"

There are so many more funny things that she says, but most of the ones that really catch me off guard have to do with Rett syndrome. Chloe's a little obsessed with the whole thing really. She has reminded me of what a big deal it is to me too. I work so hard to enjoy Claire for who she is, outside of her diagnosis, that sometimes I forget to acknowledge the role that Rett syndrome plays in her world. So....October happens to be Rett syndrome awareness month and in honor of that and the role that Rett plays in the lives of many that I love, I am going to try to write every day about a different facet of life and Rett, we will see, here goes!

Right Now

Right now things are alright. They are actually pretty good. The point is that lately I have been able to be alive and in each day and it has been amazing. Last Thursday I picked Claire up with a giant grin on her face. Her aide told me about the wheelchair races that Claire is having with the 1st graders from her reg. ed class. She loves racing and honestly, I am not at all surprised. We went off to a fun pt session and the girls were both in good spirits so I gambled. Instead of going home to have nap time we first went downtown to the bookstore. I had gone the day before with Chloe and she fell in love with an Olivia book. So we went back to get it on the premise that she had to share it with Claire. As we stood in line to pay the woman behind us remarked that Claire seemed very in tune to the music. She had noticed that Claire was doing her hands along to the tune of the violin that was being played outside. I watched and sure enough she was right. After we purchased out new little jewel we wandered outside and basked in the sun and soaked in the lovely sounds of the violin.  As Chloe went and dropped a dollar in his case I couldn't help but be overwhelmed by the goodness of my life. It isn't anything extraordinary. It is picking tomatoes, going to book shops and taking walks be the ocean. Right now it is all in balance. I have learned enough to know that it won't always be like this. Claire has developed a little cough and I know that a pneumonia might very well be on the horizon. Part of me thinks practically, that short of a nebulizer and a humidifier there isn't much that can be done. But there is more. I can enjoy each day for what it is. I just wanted to say that out loud and post it for the day in my future that I don't want to be in the present. To my future self, remember that when it is harder than you can handle, soon it will be more wonderful than you can imagine, hold on.

Claire's Crusaders

It is that time again. Last year I really wanted nothing to do with Rett Syndrome awareness or fundraising. Still I was (and still am) painfully aware of it and as much as I struggle with how to share that awareness, it happens. One of the things that I am continuing to learn is how much other people enjoy it when I do share.  Recently, a new angle has been added to this story, Chloe. It has been humbling how she has changed my perception of the whole rett situation. Honestly, she has been the driving force for my participation in this years strollathon. She wants to share her sister with the world and wants for her sister to be able to go to the doctor and get "better". Chloe has reminded me that I want those things too. So it is with great excitement that I promote our team, Claire's Crusaders and ask that you might consider visiting our fundraising page here to make a donation and be a part of the solution to rett syndrome. Thank you.

Lost Dreams and Hope Found

I had this post nearly worked out and ready to write when I received heart breaking news. Those of you in our rett family may also be experiencing grief after learning about Anna. After I got the news, I got really angry along with a whole bunch of other emotions and have had to fight really hard to get back to a place that I can see beauty in life again. The simple truth is that life is made up of lots of little moments. The past weekend I had a few that caught me off guard and it was pure joy. So I have decided to share that story with you in a hope that it might encourage or inspire you. Sometimes hope pops up when you least expect it.

It had been a very long week.  The process of Claire starting a new class with a brand new teacher and a brand new aide with a new SLP and PT had me pretty overwhelmed. Claire was doing well and I was terrified that I would let them learn Claire and in the process we would loose ground, the spark in her eye would dull, the anxiety would take over, the seizures would come and the little ability to use her body that she had would decrease. Those emotions alone were enough to exhaust me. Add to it the ignorant and hurtful things said by random people and the work of taking care of the girls. I was moving through each day, trying to put one foot in front of the next and be as optimistic as I could, but I was tired.
When the weekend came we had the opportunity to go to our farm and pick a load of tomatoes.  Food inspires me. Knowing where our food comes from gives me such joy. Every year I can enough tomatoes for the year. Each week, when I open a jar, I think back to the times that we have visited the farm, what the air smelled like, what the girls faces look like stained with tomato seeds, catching Jared eating off the vine (he claims to not like tomatoes, so it's a big deal) and the trunk of my car stuffed with bags of beautiful early girls. We had a relaxing morning and eventually made our way down to the farm. Claire had fallen asleep in the car as she was recovering from some "brainstorming" for lack of a better word. I had low expectations of this trip. I figured I would stay at the car while Claire slept and enjoy watching Jared and Chloe in the field. So I was delighted when Claire woke up pretty lucid and ready to go have some fun. It turned out to be a spectacular day. After testing a few tomatoes and hanging out in the field a little, farmer Tom started up his tractor and we went for a ride. I am not sure what exactly it was, but sitting on a hail bail bouncing around on the dirt was an equalizer, in that moment, rett syndrome wasn't keeping anything from Claire. She sat and enjoyed the sights and sounds like all of the other kids. As we went down a row of apple trees, Chloe picked them, eating two apples, one in each hand. We stopped at a field of strawberries and Claire savored the soft fruit, warm from the sun. Other than one moment of boredom, Claire was so at ease, not fighting her body or frustrated that she couldn't tell us something.

 After eating our fill of tomatoes, apples and strawberries, we packed up and headed home. As we drove I felt content.  Claire hadn't had a seizure and Chloe didn't tantrum. We had 35 pounds of dry farmed early girls that were begging to become salsa and a handful of padron peppers to snack on during salsa production later on. Typically, I start the whole canning process after the girls are in bed for the night. Being as tired as I was, I thought that perhaps I would get a head start while the girls were still up. Then the most obvious of thoughts finally popped into my brain, let them help. So Chloe washed 10 tomatoes for me. We hooked up Claire's switch to the blender. I put the serranos in and then Chloe added the tomatoes. Then it was Claire's job to pulse it and she did great. Both girls loved being part of the process. Claire lit up and Chloe jumped up and down cheering her on. The whole process that they were involved in was only 10 minutes but I think it might have been the best 10 minutes of the year for me.

It was in that time that I remembered about a dream that I had long ago. When we moved here, Claire was still a typically developing child. I dreamed of taking her to Pie Ranch and other fun food things. As the regression set in I stopped dreaming and I honestly had forgotten that I ever had. In that 10 minutes I not only remembered that I had a dream, that was being fulfilled, I was reminded that Claire continues to do lots of amazing things. Her life is full of so much potential. I was inspired once again to dream bigger and to hold on to hope. Hope that today can be wonderful, that Claire can be her own person, outside of her diagnosis. Hope that our life can at times feel normal and be filled with joy. In the context of all of the events of last week, I am reminded of the gift of each day. Some of them filled with things harder than I ever imagined and others filled with dreams bigger than I knew. Now I just hope that on the next hard day I can remember this and maybe even dream a little.

The Payoff

Much to my delight, the risk paid off. The first day of school was amazingly wonderful. The second day was a little more complicated. One of the many things that the aide reported to me was a description that included, "she was really blue" and they also got to see the sad side of Claire that hates her body. But they did great with it. She didn't end up in an ambulance or watching movies plopped in a bean bag, so I consider it a success. Friday I got a call, 40 minutes before school ended. My heart stopped for a minute, it was the teacher calling to ask if Claire could eat ice cream, crisis averted. When I went to the pick up Claire was wearing different clothes. I thought perhaps she vomited because she didn't get time to burp during lunch or she swallowed a lot of air in a seizure, but no, some of her pasta got on her shirt and her wonderful aide thought that she would feel better in clean clothes. Needless to say, I feel like I can take a few deep breaths. She is in good hands. They will be able to meet her needs as well as possible and the rest of the stuff, well, there is just no figuring rett syndrome out. I was also reminded that it's all a little bigger than one person. While there were a few comments based in ignorance, there was no malice. All of the people close to Claire believe in her and she has already started to open their world to hers. After three short days, the thing that I am most impressed with was although I was most aware of the risk, the payoff is something that everyone shares in, Claire is one of those gifts that just keeps giving.