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.
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.
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.