My thoughts on awesomenss

I am just going to go out there and say it now, while I am in a good space and believe it. I am awesome. Fact of the matter is, so are you. I don't know why, but it just feels so wrong to say that. Why? Who doesn't want to be awesome? Life is amazing, isn't it? Regardless of where you are and what your circumstances are, life is remarkable, beautiful, ugly, messy, rewarding and we were designed for it. I don't know why it is in the forefront of my mind right now. Perhaps it is because I have had a few different conversations with friends who are all incredible and struggle to accept that they are good and the world is better because they are in it, the way they are right now. I am not saying I am perfect or even working on being perfect because honestly I quit trying a while ago. Today I feel strong enough to know what I have to give and I am not going to try to do much beyond that. I accept that there are things that I don't have the energy to change. At the same time there are things that I can do and right now I am enjoying that. It is good, really good to be able to have a clear enough head to know that. I am moving slow enough to remember it. Being present in the moment and enjoying what I can so that I have a little bit more for the moments that are harder to get through. I wish that we weren't all inundated with all the messages about what we should be doing, eating better, parenting better, being more resourceful or whatever it is. I wish we lived in a world where we all go around commending each other for what we are doing well and supporting each other when things aren't going as smoothly. Honestly, there is a lot of that were I live here in hippieville. People are very excepting and encouraging, I think it's because fewer people have cable and magazine subscriptions. It is oddly uncomfortable to be around people who are so alright with themselves after a lifetime of trying to be smarter, prettier or more successful. I am starting to relax into it and will admit that it most likely seems strange to everyone else. But I don't care because I am awesome and so are you.

So very normal

My heart is pounding. Maybe it's the gratuitous amounts of caffeine coursing through my veins. Perhaps it is from carrying Claire's limp body all of the way across campus to her class after she turned a deep shade of purple. If I am honest it isn't either of those. I am pretty sure that it is from the massive adrenaline rush that I got when this morning, I felt normal, really, really normal. After what felt like an eternity without it, we got Claire's eyegaze computer back and running. This morning before school I turned it on to calibrate her eyes to it. As soon as that was done she went straight into demands.  First word, thirsty, she then downed a glass of coconut juice. She then said iPod followed by "Well, I must be going now." She hates to be late so really this was no surprise, it was simply a very plain and normal thing for a 7 year old to say. "Get my ipod and can we go now" What surprised me was just how overwhelmed I was by how normal Claire is and how normal my whole life is. Not because it is dull. In fact, it is rather exciting and differs greatly from what many experience on a daily basis. In that moment her simple normal response was so profound to me. In that moment I felt normal not because she said what a normal kid would say (although that was the catalyst) but because I know that life is hard and life is good and it is more painful than anyone could have ever imagined. It is this way for everyone, some just don't know it yet. That is what I have concluded and that thought makes my heart soar, weird I know. For years I have heard people tell me how beautiful Claire is and other such kind things meanwhile all I could think is, you have no idea, the pain this causes and how hard it is. I was wrong. Perhaps some of those that I have come across couldn't comprehend the hardship, yet.  I don't know if it makes me a pessimist or an optimist but today I sit here encouraged because I know that everyone will experience great pain, not just me. It doesn't make me like that Claire has Rett syndrome. It doesn't take away the fear that I will have to plan her funeral before her prom. It doesn't take away the hope that I have for all the joy and love that I know will fill days in my future. It does make me feel less alone and today that is what I needed most of all.

Amy's class project

It's not easy for me to post this as I don't enjoy seeing or hearing myself on video but this was so thoughtfully put together, I can't keep it to myself   A huge thanks to Amy for picking this subject to share with her class and for all of the thought that went into telling this story. Our family was really touched by this, it was made for an audience of students that will be working in a clinic setting but might be good for anybody curious about Rett syndrome.

Now I remember...

Yesterday I lost it. After my first day with a solid 5 hours to myself in over a month, I was overwhelmed. With my prized time I spent 3 hours scrubbing the bathrooms and kitchen, 1 hour on the phone doing bills and other tasks that yielded very little result, I also showered and had some drive time dropping off and picking up the girls. I felt so defeated. The more I worked on getting caught up the more things I found that needed to be done and I was exhausted. Lucky for me, Captain Awesome listened, fixed the sink and convinced me to sit down and watch Whale Wars (our fabulous new guilty pleasure) once the kids were down. As I settled down I knew that what I was trying to accomplish was unrealistic. But having a clean house with no holes in the walls from skateboards or moldy grout in the shower doesn't seem like that high of a standard. It's not like I was under the delusion that all of the laundry should be folded all of the time, I just wanted the stove clean and all of the clean dishes put away. The more I tried to justify it the sillier it sounded. Then this morning happened and it all made sense. After dropping Chloe off at preschool, Claire and I headed out for our morning coffee date. Claire was in such good form, we enjoyed our time sharing a giant cinnamon roll without the sense that a seizure seemed like it might be seconds away. She smiled and laughed as a few different people stopped to say hello and in between bounced to the beat of the music. We strolled down to the hook to watch the waves and bask in the warm sun. She laughed as I missed pulling her little wheels up for a few big bumps and batted at a few tails of the dogs that passed us. We stopped at a bench to soak it all in and that is when it hit me. The warm salty air filled my lungs as a wave crashed below us and in that instant I remembered why I don't spend more time checking things off the list. I much prefer to sit at the edge of the world and revel in God's handy work. I am a better me when I do this. I am a better mom, better wife, better friend when I do this. I am more patient, quicker to forgive, easier to let things go, my laughs are louder and my tears flow more easily when I sit and just enjoy the many wonderful things around me. With the girls both being back in school next week, I am a little on the fence, will I get more stuff off my list or will I slow down and enjoy the beauty that surrounds me, I really hope it's the latter but if I am honest I am sure I will torture myself with a little bit of organizing life too.

A few of my favorite things

Like much of the rest of the world, the last few weeks have been very full. I think that 2012 marks the best Christmas for our family yet. It wasn't all pretty but there was certainly more ups than there were downs. I feel like I am stepping into 2013 with a pretty optimistic point of view and not just because it can't possibly get worse but rather things seem to be getting better. So here are a few of my favorite things from this holiday season.

Jared took a week off and we got to have an amazing lunch that I got to eat while it was still hot!

We went to our favorite Christmas party, complete with horses and a fire engine.

On the way home we got to stop by the place that I live in my dreams.

We spent eight nights talking about miracles and how God is really super big.

Of course I made food for the occasion. 

Chloe enjoyed playing with the nativity that I played with as a child.

We hung our stockings by the fire for the first time.

Claire had loads of fun at her 1st grade class party.

I got the best gift ever, seriously excited to smash something soon.

We had a blast on the train to Christmastown with my parents.

My little brother and I had some fun.

The girls got to open their stockings together, no seizures!

We managed to have a little fun with some of our gifts.

I got to see both our girls sing in the kids choir, rather, Chloe whistled the song while Claire smiled.

We got to have a little more fun with some family that came through town.

To top it all of, Claire started today with an amazing PT session where she did several things that I thought she might have permanently lost. First she maintained on all fours and when the therapist asked Claire if she wanted to work on sitting, she sat up to high kneel all on her own, it's a pretty big deal and she was pretty excited about it. I was too. I hope that you have all had a holiday season that you were able to enjoy and that you have a safe new year.

Slipping and Enough

I should have expected this, after all, we moved. Miraculously I remembered to notify the company that delivers our diapers of the new address right away so we didn't miss that delivery, just a few days after the move. I somehow managed to keep all of the prescriptions filled, even if that one time we were down to the last mL before I could get over to the pharmacy, we didn't miss a dose. I did have to cancel the eye doctor because I forgot about that appointment and scheduled two others at the same time. It didn't really matter because the nuero called and squeezed us in at that time anyway and we have to cancel the other two appointments too. Then I remembered to follow up on the mount. We have a rolling floor mount and the arm broke so instead of moving it, we shipped it off to be repaired. I had forgotten all about it since the week that we moved Claire's Eco broke and it was out for repair too. I sent instructions with the mount, if you fix it before this date please mail to here, after this date, please mail it here. Since we didn't have to pay to have it repaired they just fixed it and sent it back, to the old address, after we moved. But I had no idea. Eventually I called the company to ask how the repair was going, that's when I found out it had been delivered and that the person at our old address was out of the country, ugh. A week later they returned and surrendered the box with the mount. That's when I followed up on the Eco. It's a mess. Claire's lovely and well meaning teacher didn't know that we didn't use the doctor that she though we used. I didn't find this out until the Eco had been away for almost a month. So we are just starting the process and she will be without her voice for a few weeks more and it's all because I let stuff slip and didn't follow up. I also ordered her gift from American Girl to the wrong zip code and now it's on back order. I have been finding a bunch of stuff that I let slip this week. It all culminated in my crying on the floor in my closet as I looked through papers and couldn't find that one that I needed. I felt so helpless. There is more to do than I can possibly keep up on. Aside from all that business of life, there is the actual care of Claire that is also more than is possible. Sometimes if I am not right next to her to notice when she gets stiff and get her oxygen, she ends up turning purple and and twitching uncontrollably. I might remember to rub her feet well and get the dead skin off but forget to stretch her left side and then she ends up crooked for a few days, it seems to never end. What happened? When we started on this journey I had it all together. She got her Eco in record time, saw each of her specialist regularly, everyone who worked with her was thoroughly educated on each of the details of her care and we kept a schedule for stretching, meds and all that stuff so that nothing got missed. I guess life happened but if I am honest, it's bigger than that. I let go. I stopped grieving by trying to control. Funny thing, when you let go, things slip, that's what happens. In my tears, on the floor, amongst all those papers it was alright. She won't have her voice for Christmas or the new parts for her wheelchair but what we have is enough. I have a picture of Claire in her 1st grade class, she is blurry because her friends are dancing with her and pushing her in a circle. That would never happen if I hadn't let go. The true miracle of it all, that more stuff falls into place than slips through the cracks when you let go and even better, I not too busy to notice. Here is my visual reminder from yesterday, I took Chloe out for hot chocolate and to color. She came to the door with two crayons. I told her we could use a purse and she could bring so more. Here are the contents and it was enough, lesson learned.

Without Compromise

Last Friday it all came together. After a few days of seizures and vomiting Claire was better and back to school. Chloe was happy to be spending time with me and the fresh caught crab was on sale. Suddenly, I felt the huge weight of life lift. As it worked out, Captain Awesome had to work late, which somehow translated in my mind that it was a good night for crab, brie and Champagne once he made it home. It felt really good to celebrate. It felt like November almost did me in a few times, the move, the holiday, the complications from Rett Syndrome. It was almost too much, almost. As we sat and enjoyed our feast we talked about the highs and lows of the month. Jared mentioned that the real great part in the story of the last 30 days was that we didn't compromise the process (hence why he is Captain Awesome). It's a line from the movie 180° SOUTH. It's a discussion about climbing a mountain without shortcuts and the line is something like: if you compromise the process you are an asshole when you start and an asshole when your done. So here are a few highlight from the process, I am grateful for the each of these as they contributed to getting through the times that weren't as pretty.

Claire enjoyed working on some new things at PT.

Chloe figured out how to cut the tops off of strawberries.

She also used a pen to put on her first eye makeup.

I got to enjoy a little of this.

and this...

and this.

I got to enjoy really fresh food. 

This turned into a lovely dinner.

Chloe surprised us with a card for our 13th anniversary, WITH OUR NAMES

I got to answer the question why it gets dark with awe inspiring help from God.

Single largest withdrawal from our account ever, to purchase our new place!

Claire walked into the front door after we got our keys!

Friends helped us get all of our stuff into the new space.

It was hard to motivate myself to unpack, I just wanted to sit and watch the birds in the trees.

A few times I escaped altogether and watched more of this.

Chloe helped to kill time at the doctors office.

I was so encouraged that Rick's did a great fundraiser for Katie's Clinic.

I even got in the spirit with my purple hair.

We took the kids to the motorcycle show.

After the show we had an impulse stop at IKEA.

I got special time with this cute face.

It was easy to have fun painting with this lovely lady.

Chloe worked on flying.

We watched the waves and laughed some more.

Claire loved the teeter-totter so much we stayed until the very last light.

We walked to the farmers market for lunch...

and ate it on the porch.

I avoided more things by sitting here.

Sleeping Beauty did a great job with the tree.

Claire spoke the word "perfect" while sitting here.

We ooed and ahhed at the pretty lights.

They killed more time at the doctors...

and had fun with it!

I finally got my kitchen all unpacked.

Then wrapped up the fun with more of this fun little girl.