Funny how as life goes on and I have more experience under my belt, my perspective keeps changing. I recently found a blog of a friend from Guatemala. When I was in high school I went with a group down to Antigua for a few weeks. Although that was 14 years ago, still, the memories continue to form me. I was in a group that went to play with the babies that were under weight and waiting for surgery. Short version is that the babies were really tiny because they had clef palette and couldn't have surgery to fix it until they were at least 12 pounds. There were so many babies, the nurses had time to go in circles and change diapers and feed the babies, but that was about it. It was explained to us that the babies would gain weight faster if they were played with. We would sing songs and roll balls, it really wasn't that hard, it was actually a lot of fun. I can honestly say I have such a deeper appreciation for what we did now than I did then. At the time, it didn't seem that important. In fact, the children were so perfect. Their spirits were free and they loved to laugh. Yes, they were all awaiting surgery, but they seemed so content. As a whole, the people in Guatemala seemed very peaceful and content. Sure they lived in houses made of mud with dirt floors, but they were so happy. I actually came back from that trip with a heart that was more broken for America than Guatemala. Sure we can flush our toilet paper and stop and get a can of soda just about anywhere, but on a whole, they are light years ahead of us, at least the area that I was in. On Sunday people would pack into very crowded rooms and stand for hours singing and rejoicing in the name of the Lord. Here we have tons of half full churches that cater to different groups, seems really sad. As I look at the pictures that Judy has put up of the school that she works at, it has stirred such emotion in me. I really struggle a lot with the mentality of advocating for stuff for Claire just because she is entitled to it, it is a very easy pit to fall into. We all compare notes, how much ABA therapy are you getting, who is mainstreamed with a 1:1 aide and how do you get all the equipment for the house. Seeing the pictures of a boy who waited years for a power chair were such a beautiful reminder of the great life that is here and available to Claire every day, regardless of "services". Sure I am going to fight the insurance company and the school, to make sure that Claire's needs are met and that she has access to education. But I will not let it consume me. There is so much perfect life inside her that I need to remember to take advantage of every day.
Finally, we have summer weather and I am very excited about it. By summer weather I mean that it was almost 80 today. For me, that is about as close to perfect as one can have for weather. Another perk to the warmth is that Claire has been able to hang out in the hammock chair on our little porch. She adores listening to Dr. Seuess and I love listening to her giggles as she swings and enjoys the stories. This week has been really nice. It all feels like it is working at the moment. I feel really comfortable with life, not like I am being killed by the undertow or stranded on an island, it feels good. Doesn't mean that it has been easy, but I feel like I have what it takes to deal with it at the moment, so I am going to try to stay in this moment for as long as I can.
It will be three years in October since we have officially been in the Rett family. I remember the permanence of the diagnosis really hitting hard. Up until that moment, I really thought that she was going to catch up, she was slow, but not disabled for life slow. I was telling a close friend about the news and somehow the topic of travel came up. At that moment, it really felt like I was never going to be able to go anywhere without Claire and honestly it wasn't much fun to go places with her. I was the only person on the planet who could read her. At the time Jared could handle her for a an hour at home and we had a babysitter who could sit here while she slept, but that was it. I felt like my dreams of traveling to Europe to see art that I had studied would certainly never come true now. Really it didn't seem to matter that much, when you think that your kid is going to die, giving up a life of travel isn't a big deal. I am just starting to realize that the day that we got the diagnosis was really the death of a lot of dreams, dreams I didn't even know I had. It has been a very long 34 months and it has flown by. Claire has taught me so many things, there is so much that I didn't know I needed to learn, a true eye opening experience. Fast forward to today, not only am I not the only person on the planet who can keep her alive, she is loved by so many and thrives when I am not around. As I sit and type this I am so giddy and excited for the upcoming weekend. In 60 hours I will be in another state, not because I need to see a surgeon or because my mom is ill. I am going to Vegas because I can! I will be joining up with 9 of the most amazing moms that the planet has ever seen. It will be epic, there is no doubt about it. For me, even bigger than all the fun and community I will get to have, it's a dream. If I can leave Jared home alone for two night with both girls, that pretty much opens the door back up to anything that I can think up. Who knows, maybe in 15 years I will be blogging about the stress of packing for our trip to Italy and wondering what to put on Claire's ipod for the flight.
Tuesday I got to take Claire for her first, and most likely not her last, EEG. We actually had a lot of fun for the most part. Since it was just the two of us we got to take the Smart car and listen to the music loud which is always a good time. We got there early enough to knock out the EKG before the EEG appointment. I am so impressed with this little girls ability to take tests and deal with medical stuff like it is nothing. I am so thankful to Dr. Seuss and Apple, truly the audiobook made it so easy for her to lay there still and giggle while they ran the test. The EEG was a whole different story. The tech didn't get Claire and didn't think that the whole process needed to be explained to me. If I had known what there were trying to do before they tried to do it, I could have helped, but you live and learn. Claire didn't care for the quiet time in the dark room, but for the most part she did well. After the grand finale with the strobe light in her face was done, we turned the lights on and sat pulled the Eco next to her. What does she say? "Light bulb, good" My sweet little rockstar likes the crazy lights. She was all smiles while they tried to get the goo out of her hair and then we were off. She crashed in the car on the way home, such an exhausting morning, I just kept breathing. Still trying to figure out what just happened and how I came to have a life that involves a 4 year old who can't speak with her mouth and needs to be followed by multiple medical specialties. Wednesday was CSA day :-) I love the bounty that comes to us each week from the farm, I am truly blessed to have that available to us. Even as fresh as it is, the food is far from perfect. In fact, because it is organic and they don't use evil chemicals some times the berries are a little squishy and the chard has a few holes in it. I had to pick a small caterpillar out of the broccoli, such a good reminder of how complex life is. First thing is to cut up the strawberries. The miracle of both girls sleeping had happened so I was able to actually think and process as I did this. As I would cut the bits that were rotting off and toss what was left into the bowl I thought (admittedly way too much) about why I cut the parts off like that. Is it because it isn't pretty? Because the color is off? No, it is because I want to protect the rest of the fruit. It just isn't realistic to get several baskets of organic strawberries and not have a few bug and a few mushy berries. A lot like life I guess, but I can tell you that my fresh, organic, not perfect berries taste so much better than the commercialized crap at the store. Kinda like my life with children's hospitals and therapy appointments, oh so sweet! Thursday came and I had the opportunity to tuck some of my lovely food into jars and put it away for the winter. It sure is nutty and I still don't know I got here, but at least this week I am really appreciating my organic experience, the bugs and the beauty. As far as the results from the tests, that is a whole new post, but Claire is alright.