On New Year's Eve

As it has been getting closer and closer to New Year's, like many I have been thinking about the last 12 months. WOW! It has been quite a year for myself and our family. We have seen darker valleys and higher mountain tops. Claire's seizures and dystonia have pushed us in many directions, mainly toward the edge of sanity.  In the midst of it all Claire continued to grow in every aspect of her life. She is healthier, stronger, happier, calmer, smarter and very much her own little 6 year old self. Chloe is 2. She is an exhausting mix of energy and determination. Meanwhile she is the sweetest, most compassionate and loving little girl. As we have gone through the many highs and lows of the last year I have learned a few things. One of those being that we are not alone. It isn't just that we aren't alone, we are surrounded by really beautiful people. Both locally and across the country we have been supported by people too many to name and it has been a gift that I truly hold close to my heart. The other thing that I learned a lot about this year was me. I went through an identity crisis of sorts. Trying to figure out how I lost sight of myself over the years was one of the hardest things I have ever done. It is something that I am so proud of that I just want to shout from the top of my lungs, "hell yeah, take that, I did it!!!" I found that I am more fragile and strong than I thought. I rediscovered that I more than the sum of Chloe, Claire and Jared. I found that I had to continue to slow down even more and to tune out so much of the noise of life. Most importantly I found that I could. I know that going forward I can. It would be naive to think that 2012 will be better because Claire will wake up one morning and walk and talk or that I might wake up one day and not have the proud and self serving nature that I keep trying to fight. But it will be good. There will be highs and lows and whatever it is that is ahead of me, I look forward to going through it as me, the me that I fought to get back.


What We All Are

It started out as pretty epic, considering it was a Monday. Coffee with a new friend, strolling on the cliffs soaking up the sunshine, Chloe skipping and holding my hand, I even got to vacuum, something I get really excited about. Jared was coming home late so I enjoyed dinner and stories with the girls. It was all very smooth sailing. Jared called to say he was almost home and would stop for ice cream. Then I heard Claire, I ran in. She was purple and choking on her vomit, I assume that she had had a seizure. Just as we got her cleaned up, she had another one, just as I had suspected, it was a real deal seizure, so we brought her out to the couch. After a few minutes she had another one and that is when we did it. We pulled the diastat out and actually gave it to her. Immediately she was better, she even laughed in a genuine high sort of a way. It felt weird to give her such an intense drug at home with no medical supervision. At school if they give diastat to anyone they call 911, so I called the advice nurse. I knew they would be of little help but I just wanted to hear from somebody that we did the right thing. The nurse was clueless and had the on call doctor call me. This was a doctor we had never met so they asked a few questions, starting with, does your child have a seizure disorder? I responded that she had rett syndrome. Before I could continue on to say that she was medicated for focal seizures the doctor gasped, "oh I am so sorry!" I wish that I had responded something along the lines of "I am sorry that you missed the class on things never to say to a child's parents." But I just pretended not to hear it and went on about her history. The doc was not that helpful, she had the super good idea of contacting the nuero the next day, something I had already planned on. The next morning Claire woke up bright eyed and ready to go. In fact, she had an incredible week. I however have had the worst time shaking what the doctor said. Part of me thinks why on Earth would anyone be sorry about Claire, but I know the answer to that. She's different, what she has to go through is hard. As much as I would absolutely love for the whole rett thing to go away and for her to be able to run free, I don't want to go through life thinking about how bad her life is, because I think a lot of the time she likes her life, shouldn't I? I don't want people to be sorry that she has rett syndrome, I want people to see her for the amazing little girl that she is. Sure she has her challenges, they are obvious. But really, don't we all? I think of a conversation I had with a friend a few weeks back. When I told her how great she looked she replied, "cancer is on the inside, you can't see it." What we deal with is out in plain sight for everyone to see, but that doesn't mean that we need pity. Regardless of if the problem is on the inside or the outside, don't we all just want to be treated with kindness, respect and to be accepted for all of who we are, the good and the bad? Sorry that this is a bit of a rant, I am just getting to a place of acceptance I suppose. I don't want to live the worlds largest pity party, I want to live the richest life possible. As it turns out, my daughter's body doesn't work well, but I really don't see that affecting the situation one way or the other. I will laugh and cry and be alive through it, just like we all are.


The hardest thing

I know that this is going to make me sound like a royal jerk, but I don't like 6 year old little girls, at all.  Whenever possible, I try to block the thought of their very existence out of my mind. It won't always be like this, two years ago I hated 4 year old little girls and next year I think that it will be the 7 year olds that I will grow to resent. It makes the loss of what Rett Syndrome has taken from Claire so much more real when I see little girls that are the same age as her. When it is just me and Claire or even Chloe, Claire is exactly who she is and that is just fine. It is all about context. Next to Chloe she is a patient and loving big sister. At therapy she is the strongest fighter ever and at kid quest she is just one of the club. Put her next to a 'typical' six year old and I start to fall apart. I forget how funny, silly, smart, friendly (you get it, I won't go on) little girls are. It reminds me just how normal Claire is and that if her body would just let her, she would say similar witty things as well. Needless to say, this has been a challenge as I know that one of the things that Claire wants most, is to be with other typical little girls and to be accepted as one of them. This year has been great. She spends about 35% of her time at school in the mainstream setting and on Sundays she has a wonderful set of helpers that work with her in the classroom with the 1st graders at church. This has allowed Claire to enjoy the company of her friends without making me participate in it too much. A while back a friend of mine posted this. She discussed being both a 6 year old and a grown up and why we have to be both. But a big part of me just can't, or rather, hasn't. I struggle just to keep some sort of identity aside from exhausted wife and mother, to have to think like a 6 year old too, so I most often let other people do that stuff.  They are better at it and I have convinced myself that it is just better to go with every one's strengths, it's easier that way. Today, that wasn't so much an option. I knew that for one reason or another that there wouldn't be a helper for Claire at church today. I figured that I would take her to watch the service and when she got bored we could sit in the coffee shop and read. I took Chloe to her class while Jared unloaded Claire's chair and got her rolling. When I met up with them I had two nagging thoughts in the back of my head. 1. Ask Claire if she would rather go to Sunday school or big church. 2. When faced with a fearful situation lean in the direction of what seems harder (something a friend encouraged me to do a while back when life seemed it was sliding sideways). You see, I was under the delusion that she wouldn't want me to go with her to Sunday school as there has been a long pattern of her enjoying her independence apart from me. So I thought it was a safe bet. If I could get her to choose to go to big church with me, then I wouldn't have to deal with the guilt of running from my fear. Too bad that she was unavoidably clear, she wanted to go be with the kids. So I took a big gulp and we turned around to walk back to the building full of giggling and wonderful little girls who were certainly going to do nothing other than rub their wonderfulness right in my face. Sure enough they did. As we entered the room immediately I heard a little girls voice say, "hi Claire!" It was our old neighbor that we hadn't seen in almost a year. Quickly it was time for singing and dancing so we made our way over to the large group of children (maybe it was only10-20 but it felt like 100) and I got Claire out of her wheels so that we could join is as best as I could figure out. Claire absolutely loved it. She lit up brighter than the biggest Christmas tree, it was breath taking. When it was time to sit down for the story I noticed that another friend, a little girl from Claire's school that was at her birthday party had come in a little late and chose to stand right next to us for the songs. She moved in a little for stories. Our old neighbor friend came and sat on the other side and held Claire's hand. There were two people that were dressed up in absolutely ridiculous elf outfits that were teaching the lesson. As they shared the story Claire laughed out loud a few different times along with the other children. My heart dissolves at the sound of her pure laugh. It is the closest thing to her voice aside from her screams when she is upset. She gave me the signal to leave the room so we did and she had a dystonic episode, that she had the peace of mind to let me know that it was coming and she wanted to be alone is another thing that just blows me away. As soon as she recovered and could hold her head up she wanted to go back. Things were wrapping up, we helped the little girl that sat next to us with the stapler, ate a few gold fish snacks, said good bye and went to get Chloe. As we walked out, the guy that told the story, who was still dressed like an elf, stopped to say how much he loved it each and every time he heard Claire laugh. It was a genuine nice thing that he said but it was like a bomb in my head, Claire is a very special little girl. She touches people in a really special way. Her laugh says a lot more than most normal little girl laughs. She contributes to the group, she encourages people, they love to see her come alive just like I do. Funny because the lesson was on generosity and it was I who had wanted to keep Claire all to myself. So all that to say, that was hard, really, really hard, it was wonderful and most importantly not just for me but for others. Maybe someday I will remember that it isn't just about what I do for Claire but what Claire does for the world.

1 Tim 6:18 They are to do good, to be rich in good works, to be generous and ready to share,


Miss Amazing Does Novermber

Ah November. The thought of the word November alone brings a sigh of relief to my soul. November was like a cup of coffee with a really great friend that you rarely get to see. You can get there five minutes late, a little frazzled and wearing your sweats and still manage to have the most meaningful and encouraging time. You laugh, you cry, you look down at your watch (alright iPhone, nobody really wears a watch anymore) and can't believe that three hours has already passed and you had better get going. You walk together out to the parking lot together already planning what the next meeting will look like, even if it off in the distant future. Later, when somebody asks what you talked about it is hard to come up with an answer, nothing, everything, it's hard to remember, it was just good. With that said, here are some of the highlights that I can recall.

November certainly did not disappoint in the food category. Not only did Jared and I enjoy a full share of rich dinners, we actually had people over to eat with us, twice! I actually think the last time we had friends over it was Maren and Erica. So I was over the top delighted to get to make pizza from scratch two weekends in a row for a few new friends.

The weather was pretty epic as well. I spent a lot of time just sitting and listening to the waves crashing and the water swirling in the sand. I wish that I had the words to describe how the longer I sit on the side of the ocean the more in balance everything seems. Sitting there doesn't actually change anything and at the same time it somehow changes everything.

There was a lot of silliness and leaves. Chloe taught me that it is better to run in the grass and the leaves in bare feet and I have to say that I must agree with her, it was great fun!

Then there was the road trip to Santa Barbara to support our dear friend Sorel and her rad parents. Claire and I left very early as it was a 5 hour drive just to get down there. Of coarse, the two things that I feared most, Claire not breathing and me getting diarrhea both hit us in the first 30 minutes of our journey. I hadn't been driving for 5 minutes when I heard Claire's first episode, we rolled with it, I thought to myself, she has rett syndrome, this is just what that means for us. We drove on and as we drove through Castroville it was my turn. My stomach yelled at me and I quickly found the scuzziest gas station bathroom that I could find, put Claire's chair together, threw her in it and darted to the back of the building to a room barely big enough for a toilet and a wheelchair, but we made it work. As I finished, Claire indicated that she needed to go as well. I tried to talk her out of it. I explained that of all of the toilets to ever not want to sit on, this one was toward the top of the list, yet she insisted. So glad that I listened! It was then that I had one of those true Miss Amazing moments. Not that I can read her non-verbal cues so well that I put her on the toilet just before she poops, no that is not what makes me amazing. As I squatted, mind you it is just before 7am, holding her up to sit on the toilet, I for reasons unknown let go. Yes, I dropped her poor little bum into the grossest toilet ever, just after she used it, ugh. This is the picture I took of her in that bathroom, just after the event, she laughed so hard at me that I couldn't help but join in.

Now that we were both completely awake we got back on the road and put some miles in. We didn't stop again until Paso Robles. The moral of the story from that pit stop: if you are going to try to change your child's diaper in the bathroom of Starbucks, and they are flailing post seizure/dystonia and you take your sweater and sweat pants off to make a makeshift pillow so she doesn't crack her head, lock the door, trust me. Again we got back on the road and took in some really breathtaking scenery.

 Eventually we made it to the beach and it suddenly was all worth it. To see Sorel's big toothless smile and all of the people that were gathered around her and her family was awe inspiring.  We are not alone in this. There are people working to fix this for good, to make it less bad and to help us right where we are without those first two options available, yet.
This picture was taken just when we got there, before a really bad episode. Claire spent most of the time there recovering and still she managed to enjoy herself when her body was not fully cooperating. After a few hours with our friends we took a little detour to the French Press. I knew that I needed coffee to get home and I figured this was the place to stock up. Claire got her usual, whip cream, which she enjoyed very much, she just wanted to show off her serious pose for the picture.

Next we went back to Sorel's house for the after party. Her parents are great, really great, I love them sooorett together and it is an official party.

 By the time we recovered from that trip it was Thanksgiving. I got to give out a lot of apple butter and salsa to people that we are thankful for and this year the girls helped me with that which made it even more special. As for a big turkey dinner, this was the extent of my mise en place.
I bought a precooked stuffed turkey something that had a packet of cranberry sauce along with stuffing that merely needed to soak and be reheated.

They sure didn't care and I got to spend a lot more time with them due my lack of cooking for the day.  The sad part is that it was another hard day on Claire's little body, so she rested up in between bouts of great fun.
Chloe "helped" me cook the pie. She was in charge of smashing the grahams for the pie crust. Put her in charge of destruction and she will not disappoint, it is for sure an area she excels in.

After we ate and watched both the Thanksgiving and Christmas Charlie Brown movies, we put up our tree . There is just something so special about watching children look at a tree light up for the first time, one of those things that just can't be taken for granted.

Once the girls were down Captain Awesome and I had our real feast of cheese, salami, olives and fresh bread while watching a true Christmas classic.

We had a lot of fun over the holiday weekend. You can see that we took our black Friday shopping very seriously.

Eventually we made it down to work some of that food off. Being that black Friday is the official day that rett stole Claire's hand function it has been a sad day for me the past few years. But this year she really shined and showed off just how little she needs those hands. Sure she would love to use them, but Claire reassured us all that even without the ability to feed herself, she is still one very awesome little girl in ways too many to count.
And just like that November wound to a close. We got back to school, the laundry and the IEP.  Not without one last night out, which happened to include verve coffee ice cream with chocolate covered almonds, covered in house made marshmallow that they toasted with a blow torch right in front of me, just before topping with a fresh cone, all in addition to Captain Awesome, the world greatest husband. That is how we celebrate 12 years :-)