Tangled Up and Checking Out

A week ago I went to go see a movie with a friend. I see a movie in the theater about once every two years, so it was a pretty big deal. There was one line in particular that sat with me, on the first day of school the dean says to the student body "Forget everything you think you may know because you do not know anything."

For whatever reason, that line sat with me. The rest of the movie was fantastic! If you ever get a chance to see this movie, I certainly think it is worth two hours of time. Since then I have been thinking about how things are dramatically different than I had imagined. I have been on a long road. The journey has been longer than I initially thought and come to find out, it has merely just begun, sigh. So here I sit tired, rather exhausted. It would be so much easier to turn back off. To not think about why children die because there isn't clean water or why I just can't be nice to everyone that I encounter. It is a bit of an understatement but at the moment I feel all tangled up inside. Not knowing which direction to go. Do I help Claire to do all the fun stuff that she wants to do or will that give her seizures. Do I abandon my desire to cook healthy food for my family so that I can rest more? Do I try harder, will it make any difference, is it ever enough? Then there is the whole God and church thing that takes the the mess of thoughts in my head and ties it in knots. There is just so much inside me that is unresolved that I can barely take it but I don't have the energy to untangle it, ugh. The only thing that I can think to do is sorta check out. Not disengage, just sorta stop trying. It will be interesting to see how this works out. While I would really like to lay out a plan for rest so that I can begin to makes sense of it all, so that I can put it on a nice little check list I don't think that is what it will look like. What I have figured out is this. I have an amazing 6 year old with an incredible passion for life. That she has rett syndrome complicates things, both physically and emotionally. Then there is Chloe, who is simultaneously pure joy and frustration. And of coarse, Captain Awesome who is 110% percent 75% of the time. I live somewhere that is incredibly life giving. Between the farms, the forest and the beaches, it is easy to be energized by the beauty all around me. Now I just need to figure out how to sit back and enjoy it, live within it, with no expectations, just being in the moment and that's the hard part. I don't know if I will be blogging or not, so if you don't see anything from me for a while it's because I'm too tired and tied up and I really do hope to be back soon.



The excitement from my little procedure has died down and it's back to life as normal. Normal on our terms, which is still pretty exciting and I am still fairly exhausted. Perhaps I am more emotionally exhausted than normal because I am having to stay out of the sun which really isn't that much fun. I miss standing with my feet in the sand with the warm sun on my face. Maybe I am emotionally drained because the end of the school year is coming, bringing with it summer, fun (my biggest weakness), new caregivers and classrooms. Claire's brain is overwhelmed by this too and somehow when her brain is overwhelmed and her body twitches, mine does too. So I have been standing in the tide pools, with my big hat on, in a sort of shock, trying to make sense of it all. A few weeks ago our counselor asked Jared and I what our dreams are for the next few years. Immediately neither of us could think of anything, eventually I came up with the dream of not living up a flight of stairs and Jared wished to get to ride his bicycle more. We were told to think about it more, to try to dream big and I've been working on that, all the while living what sorta feels like a series of crushed dreams. I remember many years ago the dream was simple, we dreamed of living in California, perhaps close enough to be able to visit the beach occasionally. Jared dreamed of working in an industry involving motorcycles and I wanted to be a stay at home mom. Well, here we are, close to the beach, check. Great job with Ducati, check. Stay at home mom, well...it's not exactly like I had dreamed. I don't think I need to explain that much, in my dream our 6 year old walked and talked and I was the room mom for her 1st grade class. We are close, but doesn't that only count in horseshoes? I have been fighting the concept of dreaming. I did it once and I got burned pretty bad. But there is a catch, a really big catch. As much as that portion hasn't worked out like I had hoped, the rest of it is better than I could have ever fathomed. Through the process of being broken and weak I have grown and seen life as this entirely alternate universe that is so much more amazing than the world that I first perceived. I'm still not saying that I am glad or thankful that Claire has rett syndrome. I think the idea that I am grasping at is closer to that of realizing that I don't have the best plans for my life. But that is really hard to grasp because I feel like I can make some really good plans. Then each day, as what I intend for each moment slowly slips out of my plan and my control the greatest things seem to happen. I meet people I wasn't supposed to meet and I am blessed in ways that I hadn't thought of. I see my needs met before I see how big the gap was to begin with. It is all just so surreal right now. As I let go, mainly because I am too tired to hold on, I get to witness such special things each day. I really am trying to think up some new dreams, bigger ones. As I think about how it is just a starting place to for things to go wrong and get better it gets a little easier.


What's a long Friday with a little spilt milk?

You might have guessed that having a piece of cancerous skin removed from my head actually wasn't as fun as it sounds. Of course Captain Awesome and Miss Amazing made the best of it. You should know that it is a lot harder to volley an inflated glove more than 30 times with no double hits than it looks. Also there are a lot of jokes to be made about the smoke and burning smell when they cauterize your head, especially when one of the people in the room recently had a vasectomy. We were released with a clean bill after two hours. Shortly thereafter the numbness wore off and that was a bummer. It didn't help that we got the call from school that Claire's non-seizure, scary seizurish weird stuff was going on worse than normal. I had expected that. Her normal aide had a family emergency and despite the very best of intentions, the stand-in didn't see the episodes coming like our over-the-top extra super awesome normal person, which is to be expected. The rest of the day was pretty bumpy. I was exhausted, apparently doing nothing in a doctors office is exhausting? and Claire then had real seizures which suck. We all went to bed early that night and planned for a low key weekend. Saturday Claire and I opted to stay home and watch our new dvd, The Parent Trap. I can't think of a thing that can make one feel better than sobbing at a moving story with the fabulous acting of Lindsey Lohan. Well, watching the original I suppose, but we haven't added that to the collection...yet. I digress, we had started the movie while Chloe and Jared finished up lunch. Funniest thing, as Chloe finished eating and started to watch the movie Claire became very upset. As soon as we asked her if she wanted them to leave, she immediately smiled and glared at her sister. They left and we enjoyed the rest of the movie in peace. We don't often watch movies that are more age appropriate for Claire than Chloe as Claire is normally the one who falls asleep and seems less interested, but not this time. It was so great to see her belly laugh at all the slap stick jokes and cruel pranks, she loved it! Watching the movie she was so engaged, if you wouldn't have known, she looked like any other little girl enjoying the story. It is hard to remember that it is so common that after seizure she is often much, much better. Her eyes were brighter, her laughs louder and her desires stronger, it was really pretty great. That night at dinner, Jared commented that it looked like she was trying to knock her milk over. Before Captain Awesome thought to move it because she actually she could, Claire did in fact knock it over. It went everywhere and she sat there with the biggest grin on her face. I asked her if she was playing a trick on us like in the movie and she spoke "yeah" and laughed. I will gladly clean up spilt milk to hear her speak, it was lovely. Since then she has really embraced the mischievous side of herself. Chloe even picked up on it and instead of giving Claire the role of Scuttle, the seagull from the Little Mermaid, Claire is now Ursula the sea witch and Claire couldn't be happier about it. So I guess it's just back to normal life. I am really tired and my head hurts. Claire is having a mix of amazing highs and lows and Chloe broke the bookcase with her head today, but that is another post.

Side note, there are a few of you out there who have been loving on us in the most amazing ways and I have to say a huge thank you! From the lasagna that you drove over even in bad traffic to the ice cream that you gave to me that long day at school and the roasted chicken dinner, I am humbled and blessed. Each of the women that have blessed us with food are people that I consider it an honor to have on my journey. You are all such strong, brilliant women that I have gleaned so much from, thanks for taking care of me this week. I needed it more than I knew, but you knew, that's part of why you are so great.


More Adventures in Surgery

It's been a while since I blogged about a surgery and honestly it's been nice. Not recovering from people cutting you open is great but apparently not something I was designed to enjoy for too long. I mentioned in my previous post that I was expecting a surgeon's office to contact me to schedule my "treatment" which happens to be in about 10 hours. I have been through much worse than this. I had my throat slit open just a few months after the c-section that began the adventures of Chloe. I have had many-a-colonoscopy, even on my birthday a few years consecutively. I had the pleasure of hanging out in the chemo unit to get my infusions that took a few hours when I was 19, this sort of stuff should be old hat by now. Surprisingly, it's not. This week I received a letter in the mail from the doctors office. Seeing the words "treatment for your cancer" in black and white was really surreal, even if it is really just a skin thing. However, there are many perks to the kind of treatment or surgery or whatever they want to call it that I am having in the morning. For one, I get to eat breakfast. Secondly, I don't feel like hell right now as I most often do before any type of Chrone's related doctor stuff. So to celebrate this easy procedure of sorts Jared made me a super fancy dinner. Peanut butter and strawberry jelly on wheat with my favorite Toolbox wine all enjoyed in a relaxing bubble bath. I'd say that I am getting pretty good at this whole patient thing, we will see, I will write the rest of the story when I am done tomorrow.


Turning 3, a little different this time

Have you ever had one of those days that you discover new levels of intense joy and sadness that you did you didn't know you had deep within your soul, well today, I did. Let me start with the happy ending. This afternoon, before our long (45 min.) drive home, Chloe and I stopped for a little In'N'Out celebration dinner. As we pulled up to the speaker to place our order, Chloe proclaimed that she wanted a strawberry milkshake and french fries, done and done. As we waited to pay we sat in our little Smart car, she called out to Ariel who had apparently taken the opportunity to leave while the window was down. She giggled and enjoyed the music, it was a moment of pure bliss. It was in that moment that it occurred to me, oh, this was the dream. The dream that I never really knew what it was, but I knew that it was lost. When people talk about how great it is having kids, this is what they mean. It was a moment that I really hope to always remember. I was solidly planted in the 'typical' world. Minutes before this we had been at our pediatrician's office. We had been there many times before but it has been about 6 years since we were there for a well check for a healthy child. I had an inkling that it might get a little emotional when I filled out the questionnaire online. I had recalled the same questions when Claire turned 3 and the pediatrician apologizing and telling me to guess at what I thought Claire could do, if her body worked, sigh. We got there a little early so we had enough time to all play on the pirate ship outside, hip-hip-hooray for a wheel chair accessible pirate ship that can also fit two adults in the hull, good times! Chloe was so brave as they took her vitals and measured her, she was ready for this, she had been preparing for it ALL day. Then she was taken to another room for a vision screening. This is a test that was never even attempted with Claire, Chloe jumped right up in the chair, put on the glasses with one eye covered and correctly identified all of the shapes. It was a good thing it was dark, I cried as I thought about how Claire spent the year between ages 3 and 4 being drilled on shapes knowing now that she really doesn't have a learning disability at all, no wonder she wasn't into school. The lights went off and a proud Chloe went bounding back to our little room where the doctor was chatting with Claire and Jared. Chloe hopped up on the table and the craziest thing happened, the doctor started to ask her questions. Jared and I looked at each other, neither of us realizing the depth of the shock that we were experiencing. He asked her how old she was, if she was a girl or a boy and what her favorite vegetables were. As it turns out, she is absolutely fine. We discussed her propensity for flying and he reassured me that after she sprains her ankle she will be more careful. I double checked that it was alright that we had bought her a razor scooter with only two wheels, he laughed and said that she would be on a regular skateboard by the time she was 5. I try not to compare the girls but on milestones like this, it is hard. When Claire turned 3 we were in a legal battle with the school district that was under the impression that she had the mental ability of a 6 month old baby and would continue to get worse for the rest of her days. On her 3rd birthday, Chloe's teachers told me how great she is to have in class and how good she is getting at writing her name and can spell it on her own. On the bright side, Claire has been having consistently better birthday's each year and we are no longer fighting with the school to recognize who she really is. This 3rd birthday just snuck up on me. I had forgotten what a chaotic time it was for Claire but it sure is a great reminder to enjoy them both for what they are today.



Today was one of those days. I titled this post Robust because it wasn't all good or all bad, it was both, just a lot of both. I somehow decided it would be a good idea to fill out the 3 year old well check questionnaire for Chloe first thing this morning. Questions like can she pedal a tricycle, turn pages in a book and speak sorta understandably are reasonable but they made me cry. When Claire turned three we were in a fierce legal battle with the district and life was overwhelming. I think we had a few friends over for cake but we didn't get any pictures, it's sad to think about. In contrast I am overcome with joy as I watch Chloe leap off her bed naked while she plays parachute with the fairies just about every day. It was with a heavy heart that I got the girls ready and took them to school. I then went and sat by the water, listening to the gentle waves and filling my lungs with that wonderful salty sea air. I then walked to get some coffee and meet up with a friend that wanted to learn to cook, from me, how exciting! Few things touch my soul like cooking in groups of one or more. I love food and the only thing that makes it better is getting to share it with others. It was a privilege to have Lizzy over, to share stories and laughter as we worked through much of the CSA stuff that had piled up in the vegetable drawer. It was also quite nice to have an extra set of hands for peeling carrots and de-stemming the kale and chard, the whole process went much faster than normal with less work, was fantastic. I left to go pick up Chloe with a fridge full of super great food and our home smelling amazing, perfect for a drizzly day. We then took Lizzy back to the happy place where I got more coffee (addict, I know) and Chloe ran around giggling and high-fiving everyone, it was pretty great. As we headed home to rest I talked to the doctor that I had seen on Monday. She had found a thing on my head, that might have been cancerous so she cut it off and sent it to the lab. As it turns out, it is cancer. I was half prepared for this. I had thought of it as a bad skin problem that is easily fixed with a really sharp knife. As the doctor went on and told me about the surgeon that would be contacting me and the procedure that would happen, she said something that changed my thinking. She told me that as treatment for cancer went, this is really great, that is, it is easy on the body with great results. I thought to myself, cancer treatment? No, this is a skin problem. Well, I guess it is sorta both. I thought that I was fine but I think that I went into shock. After a quick stop at home we went to take Claire to PT. As Claire walked on the treadmill I needed to adjust the straps on her legs. Typically, I stop the treadmill to do this but I hit the start button, while it was already going, didn't notice that it was still going and wondered while I was having such a hard time fixing the straps while poor Claire was still trying to walk, a true Miss Amazing moment. After that I figured that I might not be as fine as I had previously thought. I called Jared and was so thankful that he was able to leave an hour early so that our children didn't have to depend on me for dinner, who knows what I might have done. Maybe I would have given them uncooked frozen burritos or just mashed potatoes with nothing else. Captain Awesome was on the way, I knew that I could hold things together until then, it was nap time after all. As I sat killing time the phone rang, it was our case manager that was calling about some requests I had made. She said that she had good news and bad news and asked which I wanted first (you must know that Claire has a great case worker, we love her and she is truly an advocate for Claire). I responded that the last person who called me told me that I had cancer so that I really didn't mind either way. The poor lady, she wasn't expecting that. It was weird to say it out loud, to hear somebody respond to it. We talked about my plan for surgery next week and also the additional respit that I had requested, luckily the only bad news she had was that they aren't paying for the rett conference and in the scheme of things, that really is just fine. Eventually Captain Awesome came home and took over. I went off to Costco (because that's a good place to go when you aren't thinking clearly???) and got cookies for Chloe to take to school tomorrow for the big b-day celebration. While I drove I thought about how surreal the whole day was and how dramatically I have changed in how I deal with stuff. When I got diagnosed with Chrone's I told myself that I was just glad it wasn't brain cancer, it could be worse, I'd be fine. When Claire was diagnosed with Rett Sydrome I was thrilled that she wasn't certain to die soon as we had feared. In both instances I stayed strong but not today. I felt more human. I was scared and a little disturbed. I know it isn't a super big deal but I am letting it have some weight as I imagine other people often experience with similar circumstances. All in all I feel well rounded. To be able to go from grief at the loss of a typical life to the celebration of food and people and community and back to a place of facing the unexpected, it feels pretty full. I like my robust life even though I do wish it involved less surgeons.